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FR Estelle Lussiana, Mielpathy traction, Arnold Chiari I Syndrome, Cervical Hernia Discal C4-C5 and C5-C6
My family and I did not follow many medical appointments and also were not used to express our aching. Having been difficult for me, I have tried to express my physical suffering to a general practitioner because my symptoms were frequent, especially after my puberty. The only thing they told me was that I had fatigue. Later on, Dr. DUMONT explained to me that the symptoms could be “psychosomatic” or “caused by stress”. Then they prescribe me pain relievers…and the neck stiffness settled in… In 1987- pains in my right side: right inguinal hernia intervention- right crural hernia- new intervention… many years with erratic pain but still manageable. In 1999- Once, while I was working, I started to feel a terrible pain in my chest… so I left my job and quickly went to the closest doctor and decided to hospitalize me again… I think then, it might be a depression, a need to relax, etc. The doctor from the hospital examines me quickly and prescribes me medicines. Painkillers, anti-depressants… I take a sick leave for one month: I suffer chest pain; headaches and I physically feel bad. I am again hospitalized during one month from a possible fatigue, exhaustion and personal problems… I accept to go see a psychiatrist but I quickly realize that these consultations are limited and they don’t take away my physical pain. 2002 – I have a relapse: stronger cramps, numbness in my limbs (right leg and arm), itches, pins and needles, nistagmus in the right eye, difficulty concentrating, finding my words, loss of my identity references, loss of orientation, difficulty tolerating light, apprehension of material things, clumsiness of the right side, always banging myself on the right side and often covered with bruises…. And I feel more active at the end of the day rather than during the day…. My sleep is disturbed… difficulty swallowing.. I take more medicine: analgesics – IXPRIM – aspirin, Dialtavic, my doctor increases the doses, and added to all of this is the bad feeling in my stomach and pressure in my chest. I would like my doctor to listen to me… I make a list of my symptoms.. I don’t obtain an answer or an effective treatment either. 2002: Operation for bad positioning of the cardio tuberositario or hiatal hernia End of 2003, one night while everyone was sleeping and I was in bed, I suddenly had an unbearable pain in the back of my neck and I had to get up. I remember that the stiff neck kept increasing, and my doctor continued thinking that I was depressed… I got up to go to the bathroom and wash my face. I had barely arrived and the pain became stronger and more unbearable, I was nauseous, my body felt heavier and heavier, especially on the left side, I finally arrived with great difficulty to the bathroom. And I fell. In the fall, my face banged against a piece of furniture and I had an open lip wound. My daughter got up. I wanted to speak but the pain was so intense that the words wouldn’t come out, I had trouble breathing, I had something in my throat… I’m “rigid”, especially the left side… the pain is located in the chest, the neck…. I faint. My husband and daughter called the SAMU who quickly took me, unconscious, to the hospital of Chanaux in Macon. On the 12/12/2003, the doctor Jean-Francois SAVET, chief of services at the hospital, stated the following: Estelle Lussiana was hospitalized due to a malaise with loss of consciousness preceded by a violent pain in the left lower thorax. A fall is recorded with a bruise on the lower left jaw, open lip wound, and bruise on the thigh. Upon awakening I had a numbness in my left hand and then on the left side of my face, noticing a motor deficit on the same side. I was recommended a therapeutic program that did not take away the symptoms: this painful episode was still associated with personal problems. However, it is written in my medical records: “She continues to suffer from the same symptoms with stiff neck, blocking of the back of the neck with some movements, asthenia, pins and needles, an increasing need of sleep, erratic pains ….. The interpretation of this medical profile refers to non-organic disorders and that the treatment is not at all easy. The analgesics only alleviate temporarily but don’t take away the symptoms.” In February of 2004, Dr. Sauvage finds the first suspicion of a Chiari malformation type 1 in a MRI, which no one bothers to explain to me. The annual check-up by the occupational doctor, Dr. COISSARD Michel, on 24 March 2004, shows the existence of fatigue, clumsiness of the right arm, of frequent numbness and cervicobrachial pains. 2005-2006-2007, I feel more and more lost… as I don’t know who to talk to, I’m alone with my problems and I’m not one to complain a lot. I cry more often… my head …. The doctor prescribes kinesitherapeutic massages. I go to the office of different specialists without success or answers: acupuncture, osteopathy, reflexology, psychologist… Nothing to stop these diffused pains that settle in without reason…. muscular pains, cramps, rigid neck, pressure in the right eye, etc. I need a doctor to explain to me… because I can’t take this situation anymore. In March of 2008, after new episodes of feeling bad, of dizziness, they do another cerebral and cervical MRI in which the Doctor SAUTOT VIAL, radiologist, confirms the existence of an anomaly of Chiari I of about 5mm and that he had pointed it out to my general practitioner. Exhausted from not finding medical support and explanations that would have helped me to understand, I decide to look for another general practitioner and I go to the office of a local doctor. Doctor Bornarel Michel examines my MRI results and takes the necessary time to talk to me freely. He doesn’t doubt in giving me explanations. He confirmed that I had the Arnold Chiari Syndrome Type I (he did his specialty in the neurological center of Lyon and seemed to know this disease very well). He was understanding and recommended that I take this disease very seriously. I followed his advice. I don’t find a neurosurgeon that can operate on me. Consulting the documents of the Institute in Barcelona specializing in Chiari (it’s a source that my children found searching the Internet). I contact a Canadian named Eve Teri who confirms an improvement of her condition. So, my new doctor encourages me, without a doubt, towards this last solution. After that, he wrote the following to the social organizations: “Mrs. L.E. is a carrier of the Arnold Chiari Syndrome I, confirmed in the RNM of March 2008, with the need of a very specific treatment and a consultation with Doctor ROYO of Barcelona, with the possible surgery through a very specific technique the 14/04/2008. A certificate for the arrangement of this surgery has been given to the patient.” I took my MRI and the reports to the Institute and to the social security, besides my letters for the procedure. I name some of the recurrent symptoms - Difficulty at times with partial synchronization (right hand, right foot) - Difficulty concentrating, at times with elocution; sentences or words backwards - Pins and needles in the right hand and foot, electric shocks during the night - Muscular cramps - Pains in the chest, the back of the neck and back of the head - Dry mouth - Menstruation problems - Nausea in the morning - Violent cough - Nystagmus of the right eye, unpleasant effect of contact with light - Trembling of the right hand - Repeated stiff neck - Bad feeling and frequent stress The Chiari Institute contacted me rapidly and gave me an appointment with the doctor. On the 2 April of 2008, I went to the Corachan Clinic in Barcelona for the appointment. Doctor Royo of the Chiari Institute of Barcelona diagnosed me and confirmed without a doubt: Arnold Chiari Sydrome with myelopathy (cervical compression), cervical hernias C4-C5 C5-C6 and he concludes that “the neurosurgical operation of the section of the filum terminale would be desirable as soon as possible, in order to free the medullar traction and eliminate of the cause of the illness.” I didn’t remain in Spain because I hadn’t received the agreement from the social security. I don’t understand the significance of myelopathy very well, I think of my sister who is getting worse. Written in the report is the following: “Consultation for decrease in the response of movement in the right leg. Loss of short memory in spite of reading the same thing repeated times. Dysthesia of the right hand and foot. Dysphagia of liquids. Presents a profile of torticollis for which she takes medication… general bad feeling. Cervical neuralgia … with a diagnosis of Myelopathia with spinal traction with Arnold Chiari Syndrome I – surgical release is indicated (…)” This surgery with this technique is exclusive of the Chiari & Syringomyelia & Scoliosis Institute of Barcelona. This technique is recognized by a court of doctoral thesis and recognized by specialists. I remind you: in France a surgical procedure was not suggested. I don’t know what to think anymore. And as I said, I had gone to see the professor Alexandre CARPENTIER, neurosurgeon at La Pitie-Salpetriere Hospital in Paris on 20 March 2009, Mrs. Marie-Germaine BOUSSER, neurologist at Lariboisiere in Paris the 16 April 2008 and also Dr. Marc SINDOU, neurosurgeon at the Pierre Wertheimer Hospital in Bron the 2 of May 2008. I still didn’t have an answer from social security and the condition of my sister was getting worse and worse. Maybe she was affected with the same disease as me? Chiari I is an insidious disease. When I met with these professors, I had difficulty expressing my symptoms because to them they were subjective. In spite of having opened up during my visit with the Professor C. and had nothing to teach to the Professor B. Neurologist who I had met for my sister who had just had the results of her tests: Bulbar amyotrophic lateral sclerosis. The Professor Sindou, on the 2/05/2008 suggested cervical surgery for July 2008 and then postponed it until 09/2008. I couldn’t take it any more. I didn’t know where I was going. I was up against his rejection to operate on me while my condition was worsening. I asked for help from social security organizations and from my insurance company (who accepted). I postponed the first surgery in the institute scheduled for the middle of April, waiting for an agreement from the French social organizations to arrive. In spite of this postponement, they refused my petition. I didn’t hesitate to try what was my last solution. Excited and supported by my family, I decided to have the surgery in Barcelona. I had the operation on the 6 May 2008, a surgery performed in Barcelona by Dr. Royo. Since the 06/05/2008, after the section of the Filum terminale surgery by the Institute Chiari in the International Center of advanced medicine, CIMA, I feel well and I’m satisfied with this operation. Thanks to the section of the filum terminale of 40 mm. Just after the surgery, Dr. Royo noticed “a good post-operative evolution” and that “I had recovered the thermal sensitivity in the upper trunk and also the cutaneous plantar reflex 24 hours after the operation”. Dr. Thomas EUVARD, neuroradiologist (partner of Dr. SAUTOTVIAL) in the polyclinic of Macon, realizes that the last Lumbar MRI from the 19/05/2008, shows a “regression of all the symptoms prior to the surgery. “His conclusions: the MRI after the surgery doesn’t show any pathological condition” The surgery of Dr. Royo has the objective of stopping the disease.” It’s been a year since I’ve had this surgery and I’m much better. I’m not sorry to have done it. My last MRI control from 09/04/2009: a year after the surgery confirms that the course of the Chiari has stopped. I can work again; I don’t suffer anymore from the symptoms mentioned before. Dr. Royo went further in his diagnosis (there was a collaborator, Gioia, psychologist who translated). He seemed to know all my symptoms and knew how to associate the ones that I couldn’t mention (due to embarrassment, discomfort, education): difficulty swallowing saliva and liquids, trembling of my hands. Difficulties understanding jokes, humor. Difficulties distinguishing or understanding a point of view. It wasn’t easy for me to express myself orally or in writing. I was unexplainably anguished, frequent stress without reason. A sick feeling. Loss of memory. Loss of heat sensitivity on the right side. Sphincter problems since my first menstruation. Intestinal problems. Absence of libido, carpal tunnel pains, pains in the knees and legs. Pains in the fingers of the left hand, of the right hand thumb, morning sickness, problems of menorrhagia . Headaches. I’ll give you advice: don’t tell your life story to an expert neurologist or neurosurgeon. He/She will never be an expert is psychology or psychiatry, especially after an operation – it unbalances you. We tend to mix everything, in spite of the fact that the spirit and the mind are linked… We forget that at times some people have the capacity to file away their pains and their past… We want to find an answer to everything based on our experiences and past life.. it’s too easy! Giving antidepressants to a person who suffers is not an answer as they leave you dazed and they are detrimental to ones capacity to resist pain.. you’ll come out handicapped and weakened without knowing why. Speaking with many sufferers of Chiari – Syringo, I realized that the majority took antidepressants. Many couldn’t discern their suffering. Resignation sets in quickly and the desire to fight weakens more and more… it seems to me that the brain is capable of turning against those who let themselves get crushed by palliative medicine. The programs for survival are disturbed and it’s more difficult to recover... I would like our professionals to one day understand that the brain of a Chiari or Syringmylia patient is not nourished in the same way… The physical effort slows down part of the intellectual capacity. I once started laughing at night because I had just understood a joke that I had heard during the day.. Yes, it’s a rare phenomena… there’s nothing to understand.. We ask for all the kindness possible from our environment.. From the neurosurgeons, neurologists.. We don’t have the words and we live at odd times, Please, listen to your heart – there are so many things to listen to and others that they want to tell you… Let’s not mix everything! Everyone has their own path; every one of us has their own moral suffering …! My children see my dejection and they connect me to the forum: “atoute Chiari” – to see what is said about Chiari because I don’t know what this insipid disease means???? It’s in THIS FORUM that I discover I am not alone. WE CAN’T FIGHT AGAINST SOMETHING WE DON’T KNOW. I’m upset, sad… disappointed…. I’m going to be 45 years old and my physical pains are hell and some professionals consider them subjective. Tel: (+33)607446668 E-mail:bambina71@live.fr IT Marisa Toscano, Medullar traction syndrome with CHIARI I, Idiopathic Scoliosis, Discopathy in C5-C6, D8-D9 and Protrusion in L4-L5 and L5-S1.
A new journey began from one doctor to another; I visited a neurologist in my county who told me my problems were more due to a carpal tunnel in my right hand than the Chiari; the second doctor I visited in Florence in his private consult in Rome was too sure of his authority and did not even want to examine me physically to affirm my conditions, he looked at my MRI and told me textually: “Lady, you have a Chiari. When you won´t be able to stand up anymore and will have to stay in bed, come and see me and I will operate on you.” He then gave me back my MRI and made me sit down where the secretary was. I was worried. I then, went to see a third neurosurgeon and did some more kilometers and ended up in Milan in a important neurology center, when at that moment, I had already started to look on the Internet to learn about this pathology and I knew that in Spain, Barcelona they were practicing a minimally invasive surgery, being able to block the progress of it. In Milan, where they attended me with a lot of humanity, after a very precise medical visit, the doctor told me there was a Chiari, but that it was too early to operate on, ¿was I to wait?; when I asked him if he knew Dr. Royo, who operated with a minimally invasive technique using the section of the filum terminale, he told me yes, that he knew him but did not recommend me to go and visit him because he used his profession to only enrich himself. ¡That day I saw my only hope disappear! On my way back home, to Mistretta, a small but beautiful city in Sicilia, I went to see my general practitioner and relieved myself by letting out all my desperation, because not a single doctor was able to release me or at least relieve my pain, which got to the point of being forming part of my life condition, turbulent and oppressive. I begged him to give me his professional opinion about Dr. Royo´s intervention, but obviously he wasn´t very convinced about it, because he advised me to send an MRI to his colleague from his University, who was important in the neurological field in the United States, but another deception was waiting for me. His answer in fact was: “ I am not really informed about the technique of the section of the filum terminale”… ¡Obviously, the CHARI was unknown for him! At this point I wasn´t going anywhere positive and my family was starting to be doubtful. I was already feeling a lot worse, I visualized my future and saw little probability of being able to live a normal life. To find a solution for my illness, I had no other choice than to look for answers, which I did not obtain from the webpage and Internet was my last chance. I found a forum where a lot of people were affected with the same pathology I had and were operated on by Dr. Royo. One of them was Rosalia who lived in Sicilia, I got in contact with her and she introduced me to others. Everybody gave me optimal information about the professional seriousness, the doctor and his team´s moral qualities and above all the surgery achievements. My hope of getting back my courage and finding sense to my existence came back. Now, I only had to convince my family that this was the right decision. My husband and I began a new adventure, my mind was clear and I was sure of the success of the surgery. Today, three months after the operation, I can say that there is nothing in the world that is more satisfying than getting back a normal life, which guarantees a wellbeing and liberty. At this point I want appeal against our experts in medicine: “Learn Dr. Royo´s technique. Do not let more useless years go by in believing and making believe that only the Decompression is the solution to this pathology. It is not true! Using this technique, they will demonstrate that they care for people and respect their dignity. Do not persist with the error, at least notice what happens, break the communication barrier, it could be the first step to act in a little invasive way towards the cure of this rare pathology”. ¡Dear Italian colleagues suffering Chiari, lets fight for our rights to achieve justice! Actually, in Italy, because of the confusion between state and regional competitions, each region has its own politic in medical prices and refunding and this makes it a disadvantage or fortune for someone to be born in one or the other. Depending on the case, provoking then between patients from a same nation; an incomprehensible, unacceptable discrimination and an unequal deal. You can contact me whenever you wish. Marisa Toscano Address: Via Media n. 2 98073 Mistretta (ME) Phone: 0921-981091 - Mobile: 3207073770 E-mail:marisatosca@live.it FR Valerie Torro, Mielopathy traction, Arnold Chiari I Syndrome, Discal protrusion C5- 6 and C6-7
I finally decided not to do anything, since opening my skull without having a good result left me amazed. I took many different treatments during 2 years to calm my pain, treatments that have made me gain more than 20kg! Besides, they did not calm me. I started to look through Internet until I found Dr. Royo´s webpage. I immediately got in contact with French operated patients and learned about their stories. In June 2008 my state got worse at a fast paste. After 6 months some new symptoms appeared: - Loss of balance. - Loss of strength in arms and legs. - Chocking often. - Difficulty in breathing. - Pain in my ribs and chest. - Permanent Asthemia. - Paraesthesia in hands and feet. - Incontinence. - Neck stiffness from strong pain when moving. - Not able to stand still or sit for a long time. I had an uncomfortable sensation hard to explain and especially the headaches, which only calmed when I laid on my back. I decided to go see Dr. Royo in February 2009 because I didn´t want to have the craniotomy done, a traditional intervention practiced in France. I had the medical visit on Monday, had the intervention of the section of the filum terminale on Tuesday and was discharged from the clinic on Wednesday. I was so happy when I noticed that my head didn´t hurt anymore! I was able to return to France sitting instead of laying down in the car like on my way here. Now it has been 7 months from the intervention and I feel much better. Although some symptoms remain, I should mention the following: - The headaches are almost inexistent and do not persist as before. They are less violent and pacify faster without treatment. - Disappearance of pain in my ribs and chest. - Disappearance in difficulty in breathing. - The head movements are easier. - Almost total disappearance of incontinence. I still have sometimes instability when making big efforts but I have less Paresthesias. I think one must have a lot of patience and not be in a hurry, because time will do the rest. My daughters have recovered a mother who now smiles. I thank Dr. Royo and his team for giving me back the desire to live. E-mail: valerie.torro@laposte.net FR Christian Seguin, Ex-president of the French Association APAISER of Syringomyelia patients. Date of intervention: April 2008 My SFT ( Section of the Filum Terminale) My name is Christian Seguin. My surgery was due to an insistent petition from some of the members of the association that wanted me to express myself about my experience with the filum terminale. I had decided to keep in silence while I exerted as president of the association APAISER, until the mid November 2008, because I thought it was essential to keep this subject in silence. I did not want to influence at all the people that doubted about going through the intervention of the SFT. I was operated on two times (in 1974 and 1992) by means of a decompression and a laminectomy on the first 4 cervicals. To make a long story short, I suffered mainly (still do) from loss of strength, unstable balance, walking difficulties, irregular steps, pain mainly in my right leg and important problems of proprioception*. And I won´t tell you about the fatigue… I met a few times Dr. Royo and I must say he is without a doubt a very human person and has a lot of charisma. During my trips to Barcelona thanks to him, I met people with different nationalities of which their trust with him was indefectible, considering the results obtained after being operated on by him. For what concerns me, I must say the results obtained after the surgery have not been extraordinary, but at least haven´ t been null. I have gone through three successive fazes before understanding the reality of things. Immediately after the surgery and during the following 15 days, I noticed a kind of euphoria; a stronger resistance against my fatigue, a good sleep and a pleasant awakening that did not perpetuate a whole day like before… I was okay. During this stage, from the moment I woke up, I felt a great lucidity and a clear spirit like I had never felt before in years. I felt my neck was liberated, kind of a fluidity. However, I felt much better at some point at my head and neck level but not where I expected; in the lower limbs, at the bladder level, in my walking pace and being able to have a good night sleep without having to get up to urinate. Unfortunately this condition has been progressively diminishing, up to the point of disappearing and not leaving a single trace of wellbeing or progression. The 3 or 4 following months consisted in what I call the second faze. Realizing if I hadn´t lost anything, neither I had gained any recovery. ¿How could I explain then, my state of euphoria? Some people told me it could have been because of the anesthesia**, some products used to optimize the recovery and to make it work faster whose effects last during a period of time. It could be one explanation. However, after this faze, everything went back to the beginning. ¿Everything? Not all; there is a fact which I have needed a certain time to really be aware of it. Before the intervention, during a year and a half I lived in a very uncomfortable way and more frequent every time and more problematic for me. I had the urgent and uncontrollable necessity to go to the bathroom. Therefore, I was bound to be close to a bathroom wherever I went so that I would not dirty my underwear or even more. I must say that during the following 11 months from the surgery I have not gone through such experience. At all moment I have been able to manage the situation without having to run to the bathroom. ¿Is it a coincidence between the date of my surgery and the moment of having my problem disappear? Is it a question of chance? I doubt it. I could say I have gained some recovery compared to the symptomatology I had before and do not regret having taken this step. This is what I can tell about my experience lived after the section of the filum terminale on the 24th of April, 2008. Christian * The proprioception is the sense, which informs the organism about the muscles position. ICSEB note: **The drugs that are administrated to the patients during a surgery are eliminated from the organism in less than 8 hours, therefore it can´t be beneficial for the patient longer than that period. IT Carla Pugliese: Mielpathy traction, Idiopathic Syringomyelia, Arnold Chiari I Syndrome, Idiopathic Dorso-Lumar Scoliosis.
In 1987, in order to get a cure to lose weight, they asked me for a cranial X-ray which showed a dysmorphic basilar atlantoaxoidea (the atlanto is located at the base of the skull), basilsar impression of “Virchow”; they calmed me down telling me it was a congenital malformation and that I would not have any problems, therefore I did not associate my symptoms to the detected malformation. Time went by and the disorders intensified with more frequent headaches, loss in heat sensitivity in the right hand and when making efforts that provoked such strong vertigo that I could not be standing up, living with terror of not being able to sneeze, cough or laugh. One day in my office, a colleague told me about her having a cranial MRI, because when she made an effort she had a strong pain in her forehead and they diagnosed her with Arnold Chiari I syndrome. I then started to worry and with a lot of anxiety I looked through the Internet to find the true nature of the disease and its symptoms and I realized that I was reading the list of many of the problems and symptoms that I had. My big concern was when I was searching for possible solutions, I read about invasive interventions and patients operated on with the cranial decompression technique, normally done in Italy, who commented on their painful experiences, unresolved and often negative. One day, in the forum of Arnold Chiari I syndrome patients I found a letter from Pietro, that told about his experience and the illness and his decision to go to the “Instituto de neurocirugía Chiari de Barcelona” to be operated on by Dr. Royo, who had dedicated long studies for this disease, until arriving at his unique surgical technique and besides, assuring the detention of the pathology, without promising miraculous recoveries. I will always be grateful to this friend for giving me back hope and for informing me, for supporting me not only psychologically but also practically, simplifying the whole process. I also got in contact with other friends who were operated on in Barcelona, who confirmed that after the intervention they had been cured in relation to many of the severe disorders of their pathology. In January 2009, the results of the tests confirmed my logic, I had Arnold Chiari I syndrome, but also had syringomyelia extended in C2 to D4 and a Scoliosis in the dorsal rachis and lumbar. After the diagnosis I informed my daughters and my relatives about the pathology that I had and of my intention to be operated on in Barcelona as soon as possible. This decision disconcerted them so much because they would have liked to have had more time to think about what to do, but I had already examined all the possibilities and the Chiari Institute web page gave all the information about this disease, also explaining the motivations for which the intervention was exempt from consequences and why, with the section of the filum terminale, the condition of the medulla improved. I wanted to be operated as soon as possible because I knew my condition was getting worse, so I called the very kind Miss Gioia Luè in Barcelona to obtain all the needed information to reserve a neurological visit and the intervention. They operated on me on the 23rd of April of 2009. The intervention went perfectly well, I did not have any problem and the nurses and doctors attended me very kindly, proving their professionalism. Now, after a month I have already had the control visit and I can certify that I have recovered my sensibility to temperature in my right hand, I feel better every day, I can cough and above all I can laugh with pleasure without having this strong tension in my head. I also notice a positive difference in my right shoulder, doing the post-surgery physiotherapy that they assigned me. I am very pleased and relaxed, I know that I have made the right decision because I am a witness to the improvements that the surgery has made and I wanted to tell about my experience so that others who fear for their health, can benefit. I send my regards and thanks to Dr. Royo and his team and I am available to anyone who suffers these conditions and wants to have more information. My e-mail address is: carlapugliese@alice.it My phone number is: (+39) 097 43310 My cell phone is: (+39) 339 2625003 ES Angel Fernandez, Arnold Chiari I Syndrome, cervicodorsal Syringomyelia and idiopathic Scoliosis.
In the year 1995, we go back and repeat the tests, which evidence a moderate dilatation in the third and lateral ventricles that will have to be compared with the previous explorations. The neurologist says it is convenient to give me the certificate of discharge since the ventricles have not continued to dilate within two years of treatment and they have not seen in the MRI scans a clear Syringomyelia. It is in the year 2007 when I start to have strong pain in the lumbar area and in my neck followed by headaches and dizziness, to which I did not pay enough attention to since I thought it was normal due to my position at work (hairdresser) but in the year 2008 I decide to go to a traumatologist because the pain was stronger, more frequent and my hands were becoming numb. Without sending me to do any test; the traumatologist tells me I have a cervical muscular contraction and sends me to do physiotherapy. I start with the massages and the third day I almost could not walk, the neck and head pain and the dizziness were worsening. I decide to go back to the traumatologist and ask to have an MRI done in the “Casa de Salud Clinic” in Valencia. The result showed I have a Syringomyelic cavity and Chiari I Syndrome; an illness that no doctor in the General Hospital had seen before in the MRI scans, which were done 15 years ago. Later on, Dr. Royo was able to confirm a clear Syringomyelia in my MRI scans, which done in the years 1993, 94, 95 and 97. I then visit different neurosurgeons, three of them agree to practice a craniectomy, a very risky intervention. One of them says to wait 7 months, to see if more symptoms appear, because the symptoms of this illness still have not appeared; another one of them tells me if I don´t go through this intervention, I should be conscious that I will end up in a wheel chair and that the illness would become a tetraplegia and it was still not developed. Thanks to my causin (my guardian angel) who searched desperately on Internet the name of this illness and found Dr. Royo´s Institute and his fabulous team and contacted with some of his patients. All the patients she contacted, had the same symptoms as I did and they explained that with the tecnique that Dr. Royo practiced which was the section of the flilum terminale the cause of this rare illness was eliminated and in only one day after the intervention you were recovered from it and it was not risky or dangerous like the Craniectomy. So she on her own makes an appointment for me with Dr. Royo on Wednesday, February 25th. After visiting Dr. Royo, he explained to me that this intervention proposes to stop the progression of the illness and eventually a recovery from the symptomatology in the case of not being irreversible. In the physical exploration, he observes I do not notice the cold temperature in my hands and superior part of the thorax, I have the reflexes at the bottom of my feet the wrong way. The following day I go through the intervention and after 10 hours from it I recover all my sensitivity that I had lost and the strong pain I had in my head and neck disappeared. After a month, I went back to Dr. Royo for a check up and up until now I have been noticing improvements and I almost don´t have headaches anymore. The night mare that for a whole year has not let me live a normal life has finished. I hope that by telling my story I will help many people, like myself who suffer this rare illness and think that our future is destined to be on a wheel chair. I congradulate and thank Dr. Royo and his team, for their work and encouragement to the people who suffer from Syringomyelia to get in touch with the Institute Chiari of Barcelona. Angel Fernandez Defez. My e-mail address is: angeldefez@hotmail.com ES Celia Nebot, Arnold Chiari I Syndrome, Syringomyelia
I get up one day and again, I get a cervical blockage. I go to the “Tres Torres” clinic of Barcelona, where at last someone professional attends me, an internist, Dr. Homedes, who finally listens to me. He directs me to the “Institut Neurologic de Barcelona”, where after making an appointment, Dr. Royo attends me. I thought his first visit was fabulous, since no one before had asked me so many questions or examined my reflexes and sensitivity in my hands and feet; he also asked for an MRI, a Scoliogram and Electromyogram. After the test results, Dr. Royo diagnosed me with an illness which I had never heard about before: Syringomyelia and Arnold Chiari I Syndrome. During the visit, the doctor gives me a clear and professional explanation of the causes and how the two surgeries are practiced for their cure. In the “Valle Hebrón” clinic the surgery in traumatic, long and quite risky, besides the majorities of the patients who have chosen this one do not improve or even get worse. Dr. Royo and his team´s technique is very simple, fast and has no danger and the patients who have chosen this one obtain improvements right away. The decision for me was clear, the confidence that Dr. Royo transmitted me is so strong, even knowing I would be patient number 21 who goes through the surgery, I did not have a doubt about it. When I arrive home, I go on the Internet and I start to understand the magnitude of my illness, it all fit well with what Dr. Royo said and it made sense, also the other patient’s testimonials cleared up many of my doubts. I definitely think I took the right decision. I enter the surgery room after five days. After a few hours from the surgery I recover the sensitivity in my hands, left leg and the cervical pain disappears. The improvements are surprising, day by day, during the night I do not need five pillows anymore to exchange them, the blood pressure adjusts itself and I have to be careful when I pick up warm things, since previously I could not feel the heat. This surgery has changed my life one hundred percent, I go to work again, and my personality has improved together with my family life. It has taken me a while to write this letter, one is not a writer and I wanted it to reflect well what I feel about Dr. Royo and his team, how they have helped me and how they have changed my life. It is an illness with minorities, so it is crucial for the patients to stick together and give support to a doctor who has invested time and capital to study a way to stop the illness with a simple intervention, which works. If he continues to investigate it is possible that he will open new doors to be able to cure the illness consequences and other patients benefit themselves. I can’t understand why he is not recognized in his collective, maybe his way of operating is not profitable for some people… PS: I also want to express my gratitude to my husband Pere Guasch, who has helped and supported me the whole time in overcoming this illness the best way. Sincerely Celia Nebot Noguera Barcelona, April 14th 2009. AU Kerrin Allen, Arnold Chiari I Syndrome, Syringomyelia C4, Idiopathic Scoliosis
After a while my symptoms worsened again. The weakness in my right leg progressed and affected my left leg also. I became unable to stand without leg braces. My headaches, back pain and bladder problems worsened, and I began getting pain and pins & needles in my legs and burning in the soles of my feet. I also noticed odd sensations in my hands. I was again admitted to hospital for testing in Sydney, Australia and released without knowing what was causing my symptoms. Dr Royo reviewed my scans and then saw me in Barcelona in December 2008. I was amazed that he could help me and at the other things he picked up like scoliosis, nystagmus and right hand weakness. After reviewing me in December 2008 he performed a minimally invasive section of the filum terminale. This was to prevent my symptoms deteriorating and to eliminate the cause of my Chiari Syndrome. The pain from the surgery was minor. Post surgery I woke up and noticed the pain and the pins & needles in my spine and legs were gone! Nine hours after surgery I could walk without any problem. I was standing up straighter, my headaches had disappeared, I could also see better and think clearly! My bladder problems have cleared and I feel like a new person. Other minor symptoms will continue to improve as my nervous system settles down and recovers. I was very fortunate that I didn’t have irreversible nerve damage. My walking continues to improve as I gain condition and my muscles strengthen. I am very happy with the results! Dr Royo’s research and surgical skills have completely changed my life! I found him and his staff to be very professional, caring, understanding and passionate about helping people. I hope Doctors in Australia adopt his technique to help others here. I will be forever grateful to Dr Royo, Samantha and his staff for helping me, and to my family for supporting me and making this possible. Please feel free to contact me if you would like further information at possum_26@yahoo.com.au IT Caterina Ravelli, Arnold Chiari I Syndrome, Cervical Syringomyelia C3-D1, Cervical, dorsal and lumbar Scoliosis. Date of intervention: April 2007 Osio Sotto- Bergamo Italy- January 8th of 2009. Testimonial of the section of the filum terminale. I am a 48-year-old woman. Since my childhood I have suffered from headaches and once reaching adulthood, everything got worse. In the year 2000 I started to cough, which caused the headaches that got worse, adding Cervicobraquialgia. I also had pain in my right arm and the medical visits did not give me any sufficient explanations. This happened until October 2005, when Dr. xxx from the emergency service gave me a petition for an MRI to make sure there would not be any cervical hernias causing these pains and other problems that meanwhile had appeared, such as: depressive physical fatigue that increased taking only short walks; instead of feeling my legs I noticed two blocks of cement that did not collaborate; I tripped, I had a burning sensation, difficulty in walking on irregular surfaces, had loss of balance and vertigo; I often had things falling from my hands, as if the pressure or the force to hold things had to be an effort of concentration; my vision was sometimes blurry, with difficulty focusing and intolerance to a shining light; Paresthesias in the extremities, pins and needles and numbness. Problems swallowing, a sensation of suffocation, nocturne apnea, moderate but bothersome urinary incontinence, bowel movements produced discharges in my head and gave me a sensation that the sphincter muscules did not collaborate; if I got mad or cried, it gave me a horrible headache like a decompression and spasms in the head and cervicals; alteration in heat and cold, muscular spasms, occasional pain like electric discharges, decrease in sexual interest, gastro reflux and high pressure. The result of the MRI showed I had a cervical herniated disc (C5-C6) but evidenced a Chiari I Syndrome with hydro- Cervical Syringomyelia (C3-D1). I went to a neurosurgeon of “Ospedali Riunity” of Bergamo. Doctor xxx, indicated the Occypito-Cervical Decompression surgery: they had to break the occipital bone, practice a Laminectomy of the first cervical vertebrate and surgery on the dura mater, which is one of the three strata of the menix. Before, I wanted another opinion and the neurosurgeon from the Insitute Besta of Milán, Professor xxx, told me practically the same: Sub occipital Craniectomy with dural plastia. I thought that if I didn´t go through this surgery I would risk becoming paralyzed, if I did go through it I could hope not to, but it was not sure that it would be possible to stop the negative pathological process… painful and risky intervention. I then spoke to a neurosurgeon, Dr. xxx, so he would have me “under control”, avoiding the intervention but he also strongly recommended that I go through the surgery, given that there was medullar damage. Since then I lived with pain, with this sword of Democle and the sensation of having a bomb inside of me that could explode at any moment! It is difficult to resign yourself and not have any hope. One tries to put the problem behind, while the pain and the discomfort affects you more everyday and you lie to yourself thinking that there is a reason for this suffering but you want to bang your head against the wall. One night on the internet I read the testimonial of Angelo and Rita. She had surgery in Barcelona by Dr. Royo Salvador, for which his studies of the section of the filum terminale, the intervention for this syndrome, were recognized and approved by the professor of the faculty of Medicine of the Autonomous University of Barcelona. It is a non-risk intervention because the section of the filum terminale is practiced in the coccyx area, without opening the dura mater (which is done, on the other hand, in practically any other place of the tethered cord, with the evident risks that can occur when touching the medulla/vertebrates). It is painless, it does not need intensive therapy, nor physiotherapy, like rehabilitation, to recover the coordination of the extremities. In January 2007 I went to see Dr. Royo. He told me I had to have surgery because he thought if I stayed the way I was, I was in danger of serious neurological deterioration. I went back to Italy and asked my social security the authorization for the section of the filum terminale abroad, and obtain the reimbursement. The person in charge of the Institute Besta of Milán, Dr.xxx, by order of the Lombardia region, had to decide my luck. He answered saying that this treatment could be done in Italy, which was not true because all of them had proposed only the decompression! Besides, in the AISMAC forum (“Italian Association of Syringomyelia and Arnold Chiari”) by what Dr. xxx said about (“the Chiari Institute of New York”), it was understood that he was in contact with the Institute Besta of Milán when he affirmed that a neurosurgeon of the Besta had practiced filum terminale interventions; and right on this day 30.03.2007, dedicated to the Chiari Syndrome and Syringomyelia (during a course of professional formation) Dr. xxx made a reference to the “ Rationale of the section of the filum terminale”. So then I asked myself, in a country such as Italy, where the state decreets that the present temporary foreigners also have the right to urgent and/or essentail loans for health care, the same as the Italian citizens. Aren´t Italian citizens granted the same rights to be able to go to a foreign country to have important surgery done by an experienced doctor? What´s going on? Maybe this rare illness does not interest anyone because it does not bring business to the farmaceutical companies, given that through pharmacology they cannot obtain any results? Why this rigidity in accepting that maybe another doctor may have found a less invasive solution, only because they are Spanish? But, aren´t Italy and Spain both part of Europe? Or am I wrong? It seems to me as if we have gone back to the Copernicus generation with this rigidity. I understand that they refuse the removal of the herniated cervical disc in Spain, but not an operation which is less invasive and painless! It has been 30 years now that I work in a hospital and I see positive and negative things. To guarantee an adequate service to the demands of citizens, one must not forget to show more respect and more attention to suffering; the freedom of choice and self determination are also part of the dignity in which one is allowed to live with their disease, so that the person is still among the values of coexistence. Often, the media gives superficial evidence of values and rights, almost in stylish terms, through headlines and entertainment. It almost seems that they don’t want a better health system but don’t even believe in public health. In conclusion, I, Caterina Ravelli, the 17th April of 2007, went to Barcelona so that Dr. Royo could perform surgery on me. After the operation, Dr. Royo told me that I had a thick and taut filum terminale, and the next day, at the visit before leaving the clinic, I had no more signs of Babinski and 80% of the tingling in the hands had disappeared; and after years I once more discovered what it meant to be able to touch the neck and right shoulder and to notice heat under the skin and flesh, in contrast to the block of ice that had caused pain, even brushing against something, I was able to go to the bathroom without a headache and the urinary incontinence disappeared. In the afternoon, after leaving the clinic, I took a quiet walk, without noticing the blocks of cement instead of legs, with, instead of fingers, sausages punctured with needles, two numb extremities with warm toes…. I felt ALIVE! I returned home with a plaster on my bottom, and, I dare to say, with the feeling of a normal life for me! Dr. Royo affirms that the majority of the symptoms are due to the irreversible damage to the nervous tissue and this cannot be replaced, however, substitute circuits for the lost ones can be achieved, and there are some cells or connections that have stopped functioning but haven’t died, and that they can be restored by recovering the blood circulation, improving some symptoms. The sooner the spine stops suffering, the better the prognosis will be. Time will be needed to recover the rest, but already the sensation of not having a nail stuck behind the ear, but only a sensation of numbness, is not only sufficient, but a lot for me. I realize, that the sooner the surgery is performed, the sooner you recover. I know this is obvious. But then why don’t those who live this drama know that there is an alternative option to decompression? Luckily, I found this possibility through the Internet and I am getting to know the others that have been operated on by Dr. Royo. I would like my country to consider me part of it, admitting to me and to others that this choice is our right, that this rare disease is talked about, and about this great opportunity. So that other people who live this painful drama don’t feel alone and abandoned, but with the possibility of solutions which aren’t painful or miraculous, but simply feasible. The surgery was brief and I didn’t need rehabilitation, and one year later the control MRI showed the reduction of the siringomielia and the Dr.XX ( neuroradiologist of the “Ospedali Riuniti” of Bergamo) was astounded by the surgical technique and the positive results. The visit to the neurologist Dr. XX was also positive for after considerate clinical and radiological evaluations, he confirmed the usefulness of the chosen surgery. Now I no longer have to ‘scratch” the right side of the tongue, while before I had a daily headache and shoulder ache, now I feel like before after having taken many analgesics. After years, I can finally cough repeatedly and my head doesn’t “explode” anymore, getting to the point that everything was black for endless seconds, I can unscrew bottle tops and open cans. Even if I didn’t have other benefits, everything that I have obtained until now has been a great gift for me! Thank you Dr. Miguel B. Royo for having broken Damocles sword! Caterina Ravelli E-mail: rinellaremliel@yahoo.it IT Rosalia Mocciaro, Arnold Chiari I Syndrome, Cervical Syringomyelia and Idiopathic Scoliosis Date of intervention: January 2008 My name is Rosalia Mocciaro, I’m a 59 year old woman, born in Sicilia and a resident of Palermo. I’m a graduate of biology and my profession is teaching. Until the age of 55, I didn’t know that I was suffering from a rare disease called Arnold Chiari Syndromeand Siringomelia. My total ignorance was due to various reasons: in the first place, the fact that the technology of that time did not permit an in-depth investigation, like the techniques developed today, to the point of now being common medical methods. In spite of this, in the following years (in the 90’s), it’s true that the Sicilian specialists, analysts and neurosurgeons that I was consulting in the step by step, slow, unrelenting advance of my disease, were completely insufficient and professionally incompetent. It’s the moment to remember that disorders like scoliosis, loss of strength in the extremities and the various pains in the head and neck that I started suffering, more precisely in my years of maturity, were interpreted (irresponsibly, superficially and lightly) as “school” scoliosis or sinusitis and never, I say never, did any of the specialists that I consulted advise me or prescribe me to do a resonance as the correct diagnostic procedure. This confirms that in Italy, and I dare say also in the rest of Italy, the doctors do not begin with a correct diagnostic procedure, that is to say facing the problem backwards, starting with the eventuality of eliminating something serious with the proper tests and consider the possibilities of obvious and banal disorders. In fact, such a procedure would have permitted me to know in advance, way in advance, the right and correct analysis of my disease; with all the natural consequences of an opportune intervention, and not an intervention that instead- for all that was mentioned before- was inadequate and which I had to suffer with more years, a risky, delicate and invasive operation that led me to long, suffering post-operative results after my first and unfortunate only intervention of cervical decompression. All this said, here I’m going to describe – for more clarity – the chronological story of my disease from the moment of its appearance. At approximately the age of 20, I remember always having a pain in the thigh and right leg with diminished sensitivity to heat on the whole right side, with burn problems when I was near a source of heat. I always investigated but none of the doctors knew how to give me adequate answers. Afterwards, throughout the years I noticed a diminishment of strength in the left leg and arm, with decrease of movement and constant increase of the scoliosis, forming a severe kyphosis and pains that kept getting worse. I had continuous x-rays, always accompanied with an infinite series of medical tests, so many that I can clearly say that I have spent a fortune; the answer they gave me was always the same: “ Madame, you have a scoliosis that you should have taken care of when you were young”. Because of this mistaken, superficial and unprofessional diagnosis, for years I underwent inappropriate physical therapy that in the area of Palermo is usually very unprofessional, not only totally inadequate. Besides, during my life I always had problems suffering from the cold, this induced me to hate the winter, while the best season (that gave me a relaxing respite) was always the summer, dispelling my debilitating disorders. Through the years I noticed how some of the problems got worse: for example walking became more insecure and difficult, constantly losing my balance and falling. In fact it’s not by chance that I suffered more broken bones in the last years. I stumbled precisely with the left foot because of the decrease of strength in the left leg, until when I was 48 (after a strong flu), I started to suffer horrible pains in the neck and nape of the neck irradiating to the whole head; analgesics were not enough, the medical consultations diagnosed, with pedantic insistence, a sinusitis and cephalic muscular tension. I continued with these pains that were diagnosed as arthritis until 2003, until one day I decided, with the advice of an unknown but honest therapist, and of my own will, to have a cervical and dorsal MRI. The result of this examination was that I had a rare disease, precisely Arnold Chiari associated with Siringomelia cervical from C1 to C7. I didn’t know what to do because I didn’t know what this was, then I took my MRI to a neurologist in Palermo who didn’t know how to behave with me, but with an attitude of “psychological terrorism”, He then informed me that I should have gone immediately to a neurosurgeon as my situation was very dangerous. That’s when I had other medical consultations, until a notable neurologist from Palermo convinced me to see a neurosurgeon from a well known and equipped scientific center of our beloved Peninsula Italica (the Instituto C. Besta de Milan for clearing everything up for us). They told me about Professor Broggi (as a major authority in this field). In September 2004 I went to Milan to consult with this professor; who with a trite, cold, arrogant and pretentious attitude typical of the “influential members” sadly famous in Italy, insinuated that my situation was very severe, and then advised me to have decompression surgery, explaining that this intervention would resolve the problem and that with time it would permit me to have a better quality of life (his words). The 3rd of November 2004 I underwent this surgery in the Scientific Institute of recovery and cure (sniff, sniff!) C. Besta de Milan. The operation caused me a long, suffering and painful postoperative period that lasted six months. Amongst all the problems, there still remained the problem of walking and added to that, constantly unstable walking, pain in the back of the neck, intensifying in the neck and becoming more evident; adding to that, a terrible dysphasia of liquids. In fact, since the decompression, I was never well. After the operation, I wisely had a resonance done every year and after three years the situation did not improve at all, on the contrary, the siringomelia of C6-C7 spread after the operation. Very worried, I searched for news on the Internet about this rare and complex disease, and discovered that in Spain, more specifically in Barcelona, is Dr. Royo, a prestigious neurosurgeon who performs the section of the Phylum terminale and that this intervention (according to Dr. Royo’s theory) blocks the disease. Confident and enthusiastic, I discovered that together with this Doctor’s name was an efficient medical center, the Corachan Clinic, which is a prestigious, well-known clinic for many Italians, affected with this rare disease. I also learned about the Torino Association which is contacted by many unfortunate people with Arnold Chiari I disease and there are many written and oral testimonies about this miraculous practice. I went ahead and started to make intense and useful contacts with Italian patients in different parts of our loved peninsula who were operated on in Spain, obtaining enthusiastic testimonials not only of certain improvements but at times, complete and almost immediate cures. Obviously, that pushed me forward with strength and great enthusiasm down this path. In November of 2007 I got in contact with the Neurological Institute and had a consultation on the 28th of November 2007. There, Dr. Royo advised me to have this intervention as it was indicated and adequate in my situation. He commented that the decompression procedure was quite obsolete besides being invasive and very dangerous. This news was confirmed to me by more testimonials and neither can you underestimate the mortality rate (as some patients don’t come out alive and many have their quality of life worsen). I took care of the dossier to obtain the refund of the costs from the Region of Sicily, but I won’t get involved in the complicated Italian bureaucracy. The cost of the intervention was 12.560Euros and I (like many other patients) did not have this amount. But with determination and will power I decided to go ahead with the surgery. With the passionate help of my closest relatives, I managed to raise the necessary money. I discovered that to get a refund I needed a certification from a neurosurgeon from a public hospital in Palermo, but after consulting three neurosurgeons, I got a negative response from all of them, with the same reason: Dr. Royo’s technique was not yet recognized in Italy, so the certificate to obtain the authorization from the “Ispettorato Della sanita de Palermo” could not be stipulated. It comes to my mind that many rich citizens have surgery abroad and that knowing the right people and having “connections”, they often obtain substantial help from the wide network of organizations and entities and from charitable foundations in our country. More decided and realistic, I imagine, I followed the trail of that famous (super-famous boss of the mafia) who some years ago, through the local social security, !!!! obtained the authorization and financial help for a banal prostrate operation in a prestigious French clinic!!!! Despite the negative response from the neurosurgeons of Palermo (from whom I was able to confirm the total ignorance on the subject and besides a hostile and cooperative attitude of silence and sealed agreement of self-protection) I went to Barcelona, because this technique adopted by Dr. Royo, in Europe is only practiced there; with the exception of the United States (where the Professor Bolognese operates in the Chiari Institute of New York). I have to say that during the time that I was looking for the authorization for the operation, many times solicited, insistent and erroneously the neurosurgeons of Palermo informed me that this operation was also done in Italy. This news is totally false (except two shy attempts by anonymous Italian neurosurgeons in anonymous hospitals), probably not capable of guaranteeing the great experience accumulated by Dr. Royo in the thirty years of his study and career in this field. Very aware that I had to put my life in the hands of a courageous personality, and in contrast to the other intervention in Besta for the extreme danger of the decompression, the 31st of January 2008 I was operated on, with very positive post-operative results. For the moment, obviously some ups and downs, but on the whole, normal. Obviously, I’m hoping to notice considerable improvements with this intervention, and at least I am confident, while waiting for verification, that the disease has been blocked (with another control resonance). IT Milena Maldini, Arnold-Chiari I Syndrome, Idiopathic Scoliosis dorsolumbar
In the year 2001, the first year of high school, during the summer my knee started hurting and gradually the whole leg, from the hip to the foot. I started using crutches as my leg didn’t hold me up and none of the orthopedics that I consulted, could explain the reason for the pain. Relations at school weren’t the best because everyone thought that I was pretending to feel bad. After a week in the hospital and various clinical studies (all negative), I was advised to have psychological therapy because as there were no explanations for my symptoms, it had to be a psychosomatic problem. Luckily, in time the pain gradually went away. The year 2002: In the month of November, from one day to the next, I had totally lost my voice. The doctor sent me to the ear, nose and throat specialist who treated me with cortisone but my voice didn’t come back. I went back to the specialist who had more tests done but as they couldn’t find an explanation for the loss of my voice, they said it was psychosomatic. The year 2003: The 12th of October while I was studying in my room, I had like an electric shock in the right part of my neck and in a few days, the right side of my neck, shoulder, arm and head started hurting me, only in the right temporal part. I went to see a doctor who prescribed a cervical MRI, it turned out that there was “herniation of my cerebellar tonsils in the foramen occipital”. We went to a neurologist in the Hospital Civil of Ravenna, to understand what the herniation of the tonsils meant and without letting me go home, I stayed in the hospital for tests. The 6th of November 2003, I was released from the hospital, diagnosed with Arnold Chiari I Syndrome, given a tranquilizer (Laroxil) and no explanation about what I should do or what would happen. In the meantime, the symptoms got worse: besides the pain in my arm, I had tingling in my hand and my fingers didn’t respond to stimulus (I realized this because I couldn’t play the piano in the correct rhythm), and the pain in my leg came back. We then started questioning neurosurgeons, to understand what we could do. After visiting Dr. X, he advised us to wait, do an MRI only if my eye remained blocked on the right and only then, consider having surgery. In the meanwhile, I could continue with tranquilizers and should go back to school, even if I didn’t accomplish anything. In the middle of November 2003 we went to the CTO of Florence and saw the Professor X who told me that to solve my problem I had to have surgical decompression of the occipital. When I asked what risks there were, he answered, “like an operation for gallstones”. After the last worsening of the symptoms, on 11.12.2003, the Professor X performed the surgery of the decompression of the sub-occipital in the CTO of Florence, at first with positive results. Following the surgery, sub acute hydrocephalus triventricular occurred (we later discovered that this happened in the majority of cases but we hadn’t been told) and on the 30.12.03, the Professor X performed urgent surgery in order to reduce the hydrocephalus and he placed a medium pressure shunt with derivation ventriculoperito to drain the excess liquid. After four months the headaches came back, always in the right temporal region, each time they got worse. I went to see the Professor X who said that it was not from the decompression or the hydrocephalus and advised me to go see a neurologist. At first I went to the center for cephaleas in Florence. The Dra. X, after seeing all the MRI’s and all the documents pertaining to the surgeries, at first diagnosed me with chronic migraines and treated me some months with Prozac and Desiril. As there were no results, they put me in the Villanova Clinic of Florence for shock therapy (Ketanest- Triptico Ac75- Dacmadorm 15- Diamox). After a week I was discharged with a prescription for Prozac, Deseril and Topomax, later replaced with Deseril, Dacmadorm Triptico Ac75, Ebixa and Sormyr. The headaches didn’t improve but instead of that, I gained 20 kilos and continued getting worse. As there weren’t any improvements, I changed neurologists and went to the pain center of Ravenna where Dr. X, after seeing me, prescribed therapy with Lyrica; after the second pill I stopped the treatment as I was suffering from side effects (sleepy, nauseous, etc.). Under the advice of Professor X of Bologna, I went to see Dra. X who was still treating me with Topamax 125, that didn’t resolve my headache problem but together with acupunture, slightly reduced it. In the meantime, we consulted other neurosurgeons, to hear more opinions about surgeries and headaches; we went to the hospitals of: Bologna- where Professor X thought that there might be a hyperdrainage of the shunt and hypothesized changing the shunt with an exterior regulator, but only after pharmacotherapy and having revised the proper function of the shunt. Verona- Dr. X, after having studied my documents and examining me, directed me to Dr. X of Rome because he couldn’t give me a diagnosis. Rome: Dr. X, after having gone through my documents, proposed eliminating the herniated tonsils but only after having tried pharmocotherapy and he sent us to Dr. X of Lion, specialist in the cure of Arnold Chiari. Lion: Dr. X, after seeing the documents that I had given him and examining me, in the first place, suggested a control of the endocraneal pressure, to establish the proper function of the medium pressure shunt. In second place, he suggested doing another craneoectomia of the posterior cerebral fossa and a duraplastia to release the adhesions aracnoideas and reestablish the circulation of fluid. In the last case, a part of the frontal skull would be removed, which would be replaced with a plaque to widen and increase the volume of the skull. Bologna- Professor X advised us not to operate, only in case of extreme necessity, and try with pharmacology treatments. We always put aside the decision of a new intervention because there are always many risks in operations of the skull, even if I would continue living with headaches, that were always present, until they even recognized a disability of more than 74%, as I couldn’t go to school (since I was 15) or work. Since January 2007 the symptoms returned (difficulty in walking, pain and tingling in the right arm, electric shocks in the back and neck, pain in the leg, tingling in the foot, headaches, to which was added extreme physical tiredness, difficulty concentrating, urinary incontinence, tinnitus in the left ear with dizziness and nausea) and in a short time they increased making it impossible to have a social life, always needing somebody to accompany me. We did another MRI and in July we went to the CTO of Florence, where Professor X saw it, and we asked his advice about the headaches and the other symptoms that had gotten worse. The answer was: “As the pharmacology treatments haven’t solved the problem, have you asked yourself if it wouldn’t be better to see a psychologist because Milena’s symptoms cannot be attributed to Arnold Chiari I as the tonsils have gone up again. It could be a psychological problem, and besides, this girl has to start doing something, she can’t stay without doing anything.” We then showed the same resonance to Dr. X who strongly advised a second decompression surgery, saying that there was the possiblity of me ending up 90% in a wheelchair and he diagnosed an arachnoiditis. Dr. X, another neurosurgeon that we consulted, excluded arachnoiditis but was predisposed to check the shunt for an eventual hyperdrainage. Dr. X, only looking at the MRI, excluded both the arachnoiditis and hyperdrainage. At that moment we started looking in Internet and the foros which talked about the malformation of Arnold Chiari, we contacted other patients affected with this disease and they told us about the “Chiari Institute of New York” and the “Institut Chiari Siringomelia & Escoliosis de Barcelona” as institutes specializing in the cure of the disease that I’m affected with. I contacted Dr. Royo of the Institut Chiari Siringomielia & Escoliosis de Barcelona the 3rd of September 2007 for a consultation. After examining me, he illustrated his surgery and guaranteed a sure interruption of the disease and an eventual improvement of the symptoms, as long as there hadn’t been any irreversible damage. Dr. X of New York also practices this intervention, with the difference of the position of the cut. After the consultation, the 4th of September 2007, I had the surgery in the Institut Chiari & Siringomielia & Escoliosis de Barcelona, with the surgical section of the filium terminale, a minimally invasive surgery which is not practiced by any neurosurgeon in Italy for this disease but because of the studies done by this Institute, specialists in the cure of the Malformation, it must be considered an alternative to decompression. A month after the surgery, there has been an important improvement in the symptoms I was affected with; I no longer have pain or tingling in the right arm, so much so that I’m trying to play the piano again, no more electric shocks in the back or neck, no pain in the leg, no tingling in the foot for which I don’t have to lean on anybody, I’m less tired, I sleep better, I no longer have incontinence, though I do have a little tinnitus in the left ear with some dizziness, I’ve recovered the sensitivity to heat in the legs, I don’t have cold attacks which made me dress in August as if it was October and I’ve noticed that my headaches have had small improvements. Tel: (+39) 05 44 98 84 77 Mobile: (+39) 32 88 29 67 09 E-mail: maldini1@alice.it IT Giacomo Ricciardi, Arnold Chiari I Syndrome and Syndrome of tethered cord. Date of intervention: May 2007 My son Giacomo was born in January 1999 and in September 2006, after an encephalic MRI, they diagnosed him an important Arnold Chiari I Syndrome. In other test results there was also a small syringomyelic cavity at the dorsal level and Scoliosis. In the Besta in Milán they recommended us the Decompression surgery and opening of the dura mater and the one in Gaslini of Génova only the Decompression. But, after contacting with other patients with the same pathology my son had and after taking in consideration that some of them did not obtain any advantage from the clinic. As I knew that the surgery was very invasive I decided to ask Doctor Bolognese's opinion, vice-director of the Chiari Institute of New York. I sent Dr. Bolognese MRIs and from his point of view, he was against the decompression surgery, because my son had the Tethered Cord and this surgery could have provoked him the “extension” of the cerebellum.On the other hand, he recommended the section of the filum terminale. Also Dr. Royo from Barcelona, who visited my son on the 21st of May in 2007, indicated the same. My son was operated by Dr. Royo on the 12th of June in 2007 at the clinic Corachán of Barcelona (he was patient number 111 operated with the section of the filum terminale by Dr. Royo) and today, after a little more than a month, his nighttime enuresis has been solved and his movement restriction has gotten better. The day Dr. Royo visited my son on July 11th, said his “Babinski” reflex was not present, so the spinal cord wasn´t suffering anymore. IT Antonio Palmiotto, Arnold Chiari I Syndrome, Syringomyelia and Idiopathic Scoliosis. Syndrome of hidden Tethered Cord. Date of intervention: November 2007 In 1984 I started to have problems of sensitivity and paresthesias in my superior extremities and left inferior with difficulties in deambulation. The MRI evidenced an extended Syringomyelia in C2 to C4 and the Arnold Chiari I Syndrome. After few medical visits I decided to go through the Laminectomy in the year 1985 in the CTO hospital in Turin. My conditions were stable during 10 years. Later on, I slowly started to get worse with difficulties walking, lack of strength and movement in the left part of the body. The solution in Turin for the different consulted neurosurgeons was, an invasive and risky intervention. I found out in 2007, through the Internet, the possibility of a new treatment technique with the section of the filum terminale at the Corachan clinic in Barcelona, practiced by Dr. Royo. In November 2007 I went through this surgery, which was not invasive and permitted me to go back home after only three days. Right away after the intervention, I recovered my sensitivity and had less muscular rigidity on the left side, that with the phisio-therapy I notice every day a slow but progressive improvement in my conditions. Antonio Palmiotto E-mail: antonio.palmiotto@fastwebnet.it ES Mª Teresa Sanz Belmonte, Arnold Chiari I Syndrome.
In October 2007 I suffered another peripheral dizziness attack that left me in bed for four days barely without being able to move. My physical deterioration during these seven years was evident but the doctors blamed the stress and anxiety and probably they were right about it, I was stressed and anxious because I was feeling worse every day and no doctor was able to tell me what was wrong with me. In July 2008 Doctor Jorge from the benefit society of the company where I work at, I requested her an MRI of the brain and this is when they diagnosed me the Syndrome of Arnold Chiari I. I went right away for a visit with a neurologist that confirmed the diagnosis and sent me urgently to a neurosurgeon. In that moment my symptomatologies were: • Strong headache. • Fatigue. • General unbalance. • Dizziness. • Tension in my neck. • Back pain. • Spots in my vision. • Insomnia. • Continuous dizziness. • Entotic sound sensations in my head. • Lack of sensitivity in my hands and shakiness. • Difficulty in swallowing. • Abnormal Babinski reflex, which indicates damages in the nerves that connect to the spinal cord and brain. Once the medical appointment was made with the neurosurgery service with the social security and the waiting time until they gave it to me, I started to search information by internet referring to my illness and overall how could I get cured. In resume, the treatment had to be surgical and I found two options that I referred to as Classic and Alternative. Classical surgery: By Social Security. CRANIOTOMY (occipital decompression). It consists in opening the skull from the neck up to the high level of the head, fix “ I think” the first two cervical vertebrates, remover part of the occipital bone, reach the cerebellum and rise it to its upright normal position. By my point of view it seems a savage thing to do and did not guarantee you a success since it only decompresses and does not solve the cause of the problem. Alternative surgery: Institute Chiari of Barcelona. Section of the Filum Terminale. The filum terminale is a ligament which maintains the spinal cord united to the sacrum bone that provokes tension on itself. If the tension of the filum is excessive it can cause a traction in the spinal cord and the cerebellum with it which is found in the opposite extremity. It can as well provoke an abnormal circulation of the cephalorachidian liquid. The intervention is very simple and consists in sectioning the filum terminale at the level of the Sacrum and the problem that causes all my suffering is solved. Evidently the second solution I found, became the first and I called to program a medical visit in the Institute Chiari of Barcelona. I visited Dr. Oscar Cardone and afterwards Dr. Miguel Royo Salvador. They listened to me, they examined me with a complete neurological exploration, they confirmed that all the symptomatology I presented was caused by the Syndrome of Arnold Chiari I and they explained to me all kinds of details, the surgery technique they used, what it consisted of, how they developed it and its results. When I came out of there I had already decided to have the surgery done by them. Three weeks after that, this passed November 18th 2008 I was operated in the CIMA clinic. The Result: 6 hours from the operation I did not notice the pins and needles in both hands anymore. At the next day I recovered all my sensitivity. After three days my hands stopped shaking, the tension in my neck and the cervical contractures disappeared. After 14 months I have stopped getting dizzy, I have not had any headaches and I recovered my stability. IT HAS ONLY BEEN EIGHT DAYS FROM THE OPERATION. There are no words to describe my gratitude to Doctor Royo and to all his team for what they have done for me. I only hope that my experience will be of use to other people to inform them about the benefits this surgical technique has and even if they do not recover 100 % of the damage that this illness has already caused them, they know it will NOT progress anymore. As an anecdote I will make a comment, that after two days after having the surgery done, I received a letter at home from the Social Security giving me an appointment for a visit with a neurosurgeon for June 15th 2009. NO COMMENTS. If you want to contact me to comment any doubts you have, you can write me an e-mail at: sanzbel@hotmail.com Sincerely. M.Sanz. E-mail: sanzbel@hotmail.com IT Espedito Vistocco, Arnold Chiari I Syndrome, Cervical-dorsal Syringomyelia, Idiopathic Scoliosis. Date of intervention: June 2007 My name is Espedito Vistoso, I am 56 years old and I suffer from Syringomyelia, Arnold Chiari I and Scoliosis. I was diagnosed with Syringomyelia in 1991 through an MRI. With this report I went to France to the “Tours” hospital, where I had a cervical decompression with an implanted catheter to drain the watery cysts. After the intervention I had a recovery until 1998. In the year 2000 I had a fall back from which I did not recover. The neurosurgeons told me that the only thing I could do was to assume taking massive dosage of Neurotin and Dantrium… to practically sedate the spinal cord. I even took morphine to relieve the strong pain that anguished me. They even proposed a second intervention through the mouth, extremely invasive to stabilize the cervical column. It never convinced me. In the year 2006, by coincidence I found Dr. Royo´s web page and I read about the intervention he practiced of the filum terminale. I got in contact with him and they gave me a visit for June 25th, 2007 for a first visit and for the next day, the possible intervention. During the visit he confirmed my diagnosis of the pathologies already mentioned and also a Babinski sign, which explained to me, was evidently a sign indicating something was abnormal at the level of my spinal cord. When he tested my sensibility, I felt heat, where on the contrary he put an instrument that was cold. After having done a clinical setting of my situation, I programmed a visit for the intervention on the next day. At 8:30am I went in the surgery room and at 9:15am all was finished. Dr. Royo talked with my family members, who had come with me and told them that the section of the filum terminale had definitely eliminated the cause to my problems. During that same afternoon I noticed strange sensations in my back and neck and I noticed my right hand, which had been asleep during years, that was waking up. The next morning, the doctor came to visit me and was surprised by the results: I recovered completely my sensibility and the Babinski sign disappeared! I am waiting for more recoveries, as the doctor told me, they could be slow and gradual for people like me already had been operated by a decompression. Given the excellent results that Dr. Royo´s patients have reached, I ask myself why the Italian State and the scientific community do not want to recognize that Dr. Royo´s intervention is effective, keeping the patients from having some kind of hope of cure or at least to sustain the enormous expenses that we have with huge sacrifices. Kind regards Espedito Vistocco Telf: (+39) 08 28 61 27 61 IT Dr. Franceso Crosè, Cervial Syringomyelia, Arnold Chiari I Syndrome, herniated cervical disc, Chronic vascular cerebral insufficiency.
I went to consult the neurologists and neurosurgeons who confirmed the diagnosis. The pain was strong, it continued but it had a special characteristic, the pain disappeared when I laid on my bed. Some neurosurgeons recommended me to have the Decompression done. After 4 months of physical and psychic suffering, I discovered through the internet that the Neurologic Institute of Barcelona, Dr. Royo Salvador practiced an intervention which was minimally invasive (section of the filum terminale) for Arnold Chiari I and Syringomyelia. I decided to contact by mail and by phone with Dr. Royo and I ended up in Barcelona the 22/10/2007. At the medical visit, I presented a clinical setting with pain in the scapular irradiating to the left superior extremity, pain and clumsiness in the inferior extremities, in the pectoral muscle, entotic sounds, decrease in the strength of the right superior extremity, Nystagmus, mental confusion and nocturne Apnea. I decided to go through the intervention of the filum terminale on 23/10/2007. In the immediate post-operation I recovered my strength in the right superior extremity, attenuating quite a lot the left cervicobraquialgia (combination of pain in the arm and cervical column). At the clinic control after one month from the intervention I recovered almost all the strength in the right superior extremity, the cervicobraquialgia attenuated even more and now I have a better mental clarity, I still notice entotic sounds, clumsyness in the inferior extremities, light back pains and in my left shoulder but I don´t have nocturne apneas anymore. Telf: (+39) 096 542 490 E-mail: pa.cla@libero.it IT Alessandro Castiglioni, Arnold Chiari I Syndrome, cervical-dorsal Syringomyelia, Myelopathy Medular traction. Date of intervention: March 2007 Born on 13/01/1989- prematurely 33 week- weight Kg. 1,400- height 37 cm. Compensated Hydrocephalus. Independent breathing. Periodic control with TAC for hydrocephalia, the results always with no changes and compensated. Until 14 years of age good physical health. Growing rate considered slow, always 20% inferior from normal, plausible with the birth conditions. May 2003: fell playing soccer and suffered a fracture on my elbow. Since then, Alessandro had difficulties in swallowing, with cough attacks, hypersalivation, asthenia more intense every time. In two months he lost 10 kgs because he ate with difficulty and often he would vomit. In the control TAC did not show worsening in the hydrocephalia and in the MRI showed Arnold Chiari I Syndrome with no Syringomyelia. The doctors we consulted said he needed a psychologist or a child neuropsychiatrist. I consulted with various psychologists but frankly, there was no improvement, on the contrary, step by step everything was getting worse. After a few months of gradual loss of balance and walking laterally, impossible to walk up the stairs without leaning on something, lack of coordination in the movements in the inferior extremities and of small movements in the hands. In December 2003 he was hospitalized in the Sant´Anna de Como Hospital for abdominal pains and once all the documents were given the test that were done, no one noticed the result of the MRI. They followed continuous tests from suspecting of Esophagitis, the Crohn syndrome or another. Evidently all came out negative. Abdominal pain disappeared. Given the discharge from the hospital with no diagnosis. The other present symptoms were worsening little by little. The doctors never had in mind the MRI report that evidenced the Arnold Chiari I Syndome. Continuous visits to the psychologist until May 2004, with admissions in the same Hospital for abdominal pain and fever. Cause: left lung. After three weeks, given the discharge. Worried about the worsening and thinking that the one´s at the Sant´Anna Hospital didn´t understand the problem. We took Alessandro to see a neurologist that they had indicated us in Pavia (Mondino Hospital) with the tests done. Diagnosis: The disorders are not caused by the Hyfdrocephalia or by the Arnold Chiari I syndrome. Also this neurologist thought Alessandro needed a child neuropsychiatrist. Being unsatisfied, we took Alessandro to see a pediatric neurosurgeon in Florence, that on the other hand confimed that the disorders were caused by the Arnold Chiari I and he was surprised that no one took into account the MRI that evidenced it. In September 2004 Alessandro went through the first intervention: Ventriculocisternostomia via endoscopy to reduce the Hydrocephalia. With no improvements on the symptoms although the neurosurgeon´s optimism that said we should wait a few months. In December 2004 again with abdominal pains. Another admission was given in the Sant´Anna´s hospital for a new Pleura spillage, this time in the right lung. Hospital discharge after another three weeks. The doctors didn´t understand why this was happening. In February 2005 it was decided to have the Posterior Craneal Fosa Decompression, always with the neurosurgeon from Florence. Since then, also with help of a lot of physical therapy, there have been improvements. Alessandro started to eat again with no difficulties in swallowing, the hypersalivation decreased, he recovered muscular tonicity, improved his movements and strength. Little improvements in balance and walking. A special test showed us, when swallowing liquids, there was a small part that tended to go to the respiratory way but with no coughing that showed it. This did not happen if he swallowed with his head tilted forward. Then Alessandro´s balance tends to get worse. January 2007, a third MRI is done for a control after the intervention, that evidenced Syringomyelia (never present the previous ones). In the control visit, Dr. Genitori recommended a new Decompression in the Posterior Craneal Fosa but this time with an opening in the dura mater and with prothesis. He had also in mind, after my proposition, the possibility of practicing before an intervention of the section of the filum terminale (although I did not feel very confident about the results), a very simple surgery very little invasive and was mentioned on internet since a few months; Dr. Royo practiced it in Barcelona, with optimum results and seeming they also had it in mind since a year ago in the Institute Chiari of New York (where up till a year now they did not want to talk about it) and also in the Besta in Milan. We decided to go to Barcelona with Alessandro for a visit. The 21st of February 2007 we had the medical visit with Dr. Royo, who affirmed that only practicing the section of the filum the cause of what provoked the illness of Arnold Chiari I and the associated Syringomyelia would be eliminated. The doctor showed himself sure of what he affirmed. On 7th of march 2007 Dr. Genitori, seing the Lumbo Sacral MRI changed his mind, he did not believe it was necessary to practice a resection of the filum. He affirmed that there were no records but he again recommended a Decompression. We decided with Paolo to try in Barcelona and that besides Dr. Royo practiced it with an a lot less invasive technique from which they would practice in Italy for the same intervention. On the 270/040/2007 the intervention was done. On the 23/04/2007 during the visit with Dr. Royo, he notices improvements in the neurologic exam. The Babinski sign disappears. Until now the balance has not improved. ES Yolanda Garagorri, Syringomyelia, Chiari I Syndrome and Scoliosis.
1 month before the surgery
3 months after the surgery
In my case, these changes have made my life easier and only for this, it is worth it trying it. If you need me, if you want to ask anything or simply get to know me, here is my e-mail address: Yolanda Garagorri Arregui E-mail: ygaragorri@gmail.com In the case of being a Chiari or Syringomyelia patient, I will tell you what helped me to decide myself: “ whatever you decide, you must stop suffering”. ES Basilio Martínez, Chiari I Syndrome
I used my domination in the relaxation techniques (mental and muscular) and my “cold blood”. I achieved to block some of them and prevent them from reaching until the end (it is not an experience for people with weak hearts). Finally, they went disappearing as well as I was very careful with any fast movements with my neck. Being a professional in mental health, I discarded the explanations that my diverse colleagues gave me (anxiety crisis, anguish or general anxiety disorder, etc…). My wife and I started a research for a differential cardiologic and/or neurologist explanation. While the tests were done for the diagnosis in a very conscientious way in both specialties, I felt worse every time, increasing the list of symptoms, the presence of a “knot in my throat” very uncomfortable, hearing loss, entotic sounds and difficulty in the visual accommodation in my right eye. If this wasn’t enough, I had severe alterations in my sleep (that were manifested in the cold months of winter). While the cardiologists did not find anything relevant (apart from a magnificent heart from any functional and structural point of view), the Neurologist and traumatologs pointed out the presence of an Arnold Chiari I (up till C1), the 5th cervical vertebrate partially plugged and signs of dorsal-lumbar Scoliosis together with a discal protrusion in L5-S1. The following months were of a progressive worsening, with some brief periods of symptomatic “relief”. No one offered me a solution or alleviation in a short period of time, apart from the “conservative” proposal to wait until the symptoms would become much more evident and/or would produce themselves in a more severe way to interfere with the “classic” technique in Chiari I. It wasn’t enough for me (who suffers cannot wait to suffer more every day), so I found in the scientific publications the technique of the section of the filum terminale as a possible alternative I decided that I should go through this surgery for a few reasons: there is an empiric fundament, it is a simple technique with minimum risks and I could expect an improvement as well as stopping the evolution of my illness Almost two weeks have gone by and the benefits are very clear in an objective way in diverse aspects. In a way my vision has gotten better, with any difficulty in the visual accommodation and without the sensation of pressure in the eye. My hearing has gotten much better, discriminating perfectly any sound and the uncomfortable “noises” have decreased (almost inexistent in the left ear and very rare and not continuous in the right ear). My column maintains itself naturally in a straight position horizontally and vertically (I used to walk with my shoulders tilted and curved in), now my movements are more harmonious and almost all the discomfort in my column have disappeared On the other hand, the sensation of physical tiredness and heaviness has decreased significantly. My mental ability is also significantly better from all points of view (attention, memory, reasoning, concentration, etc…). My sleep is now much more repairing, I sleep more hours and more soundly (I will have to wait for the winter to come to see the total result, since with cold weather the alterations accentuate) There are other small aspects (that are at the same time big) that one understands, after, that had to do with my case with this illness and which had been losing almost without noticing it. I have recovered “chromatic health”, the color blends, the veins in my eyes that were always red have been very alleviated and it even seems that the tension in my eyes has decreased to normal limits (that were unbalanced in both eyes). I also observed now my pupils are practically the same size In my opinion, apart from the diverse explanations of the Chiari I, the consequent therapeutic interventions and the established arguments on the matter of the section of the filum terminale can bring up immediate benefits and must be considered a technique of first preference with a minimal risk comparing to the “classical” technique Basilio Martínez E-mail: basili@correo.cop.es ES Manuel Márquez, Chiari I Syndrome and herniated cervical disk.
I lost sensitivity in my hands, at 42 years of age I felt like an invalid without a wheelchair. After a few months they detected me a herniated cervical disk but continued without knowing the reason why I kept on falling which concerned me the most. After asking for a second opinion, they detected the Arnold Chiari I disease, which was the cause of the falling, and all the suffering I was going through. I was told it could only be cured with surgery and should react as quickly as possible. Doctor Miguel B. Royo Salvador whom has brought back my family and I our happiness. He books an appointment for me through internet and after confirming his suspicions, I go back home with a following visit with him, this time to have surgery done. The surgery consists of cutting the tendon through a small opening in the inferior part of the column to stop the tension and stop the pulling of the brain downwards and of the herniated cervical disk. This is done through the front part of the right side of the neck liberating the trapped disk in between the vertebrates and place at the same time titanium prosthesis. Since the next day I started to notice improvement. First my back pain disappeared and I could move my legs however I wanted. I did not have that heavy feeling anymore. Little by little I started to feel better and could tie my shoelaces again and had sensibility all over my body, being able to walk for hours without getting tired. The distress and tachycardia disappeared, I didn’t lose my balance anymore and my hands were not asleep. I can pick up heavy things without falling and I am feeling better every day thanks to Dr. Royo. E-mail: mulero2004@hotmail.com ES Teresa Balmaña, Arnold Chiari Syndrome
It wasn´t so long ago that I had bought a computer, I didn´t have any idea how it worked, the onlything that I did know for certain was that if I connected to Internet I World find everything, I did 4 classes and later on I got into Internet in Scientific Publications, how I wasn´t able to relax myself, I spent many hours at night and day reading and informing myself about everything. Headaches, Neuralgias craneal, migraines, Trigemino neuralgias, and more, all that for me it was lightening, hours past by, but at the same time it was hell, but I couldn´t find out exactly what had happened to me and I was suffering, and I was only just going for a solution or a remedy to not suffer as much as I was. When I went to the S S Neurologist and brought the resulto f the MRI it showed the presence of a Malformation of Arnold Chiari 1. He prescribed me other types of medication, he had a loto f patience with me, and I am happy for the interest that he gave me trying to fin dan effective treatment and to avoid surgery, because he know that it was going to be my last chance, but because I was complaining so much and I couldn´t swallow solid food he sent me to the Neurosurgeon to inform me and it´s how it went, he was very tentative and with interest he explained to me in a gentle friendly manner all my questions but he said that I hended to have an operation. I answered that I would think about it. All the doctors and neurologists that I have visited they said that if they could make it possible, not to allow me to be intervened on the head. I had spent several hours informing myself about my illness and what is the tradicional operation technique. In the scientific publications as many as there are, when I was searching on the computer, all of it was well detailed. I was so scared to go through this intervention; it is aggressive, not a loto f safe probabilities, a portion of that I didn´t accept and certainly with a lot of consequences, depending on each individual patient and for how long you have been suffering it and the clinical reports that exist. I was desperate, I didn´t know what to do, hadn´t found another solution so I returned to the computer as therei s so much t oread and consult and I know that something Wad escaping me, something that I didn´t know. Then I had an idea to write down: HELP ARNOLD CHIARI 1 SYNDROME, appeared a lot of different kinds of publications and I read about the Neurological Institute of Barcelona, I clicked there and out came publications from Doctor M B Royo about Arnold Chiari 1 Syndrome, the technique od the Section of the Filum Terminal and what it consisted of, it Wad a simple intervention with little risk, it could prevent, stop, ande ven save the total causes that this illness produces and with just 1 day at the clinic. In the patients forum (on the web) all of them were satisfied with the intervention and the results. The section Filum Terminal consists of a little insertion on the sacrus bone at the end of your back where there isn´t any inconvenence in alterating the mechanisms of the vertebrae column. Doctor Royo explained to me slowly and with alot of patience how with microsurgery techniques he visulized the Filum Terminal and snipped it. Apart of. I had read other publications from Dr Royo. Ander my impresión, I saw him as a very professional person. I didn´t think any longer, I got into contact with him. He did all the necessary tests that I hended for the intervention, by the way, they have already declared smallscoliosis ando n the 4th of July 2006 I had the operation at the Corachan Clinic ando n the 5th of July I Wad discharged and sent home. On the 6th when I got out of bed I didn´t have headaches, I had my breakfast and I could swallow the solid food, I couldn´t relieve it, on the 12th he removed the stiches- I hardly felt anything. Before I felt that I Wad dead when I Wad alive, I Wad deeriorating everyday so quickly, and how I´m alive and feel so good, Thanks to God and to Dr Royo. I´m so grateful to Doctor Royo and all his team. I read in some of his griten files that he has been investigating and working on his technique and putting into practise for almost 30 years. Telephone: (+34) 937 612 963 Email: matebadu@hotmail.com ES Rafael A. Arévalo, Chiari I Syndrome, Syringomyelia and Scoliosis.
I hope to be of usefulness in whatever you need. I send you a hug. E-mail: rafa20052@wanadoo.es ES Carmen Pasarin Fernandez, Arnold Chiari I Syndrome, Syringomyelia and Scoliosis.
Patient of 61 years of age, that for 2 years has been initiating a consisting of complex clinical history: Cervicalgias intense with a sensation of a lot of pressure in the nape of the neck. Frequent dizziness and was turned aside when walking. Disestesias and hypothesia and heat in both hands. I had compulsive constant cough without apparent respiratory cause. Change in the voice with sensation of swelling of the tongue. Frequent incontinence of urine. That year they diagnosed me with Arnold Chiari I Syndrome, for that reason i visited.In the physical exploration it emphasies, short neck, nasal voice, fibriliation and paresia in the mobilizationof the language specially towards the left. Sign of Babinski, in the right side it initiated. The cerebral-cervical Magnetic Nuclear Resonante: Cerebelosas tonsils arrive subsequent to at the body of the arc C1. The Magnetic Nuclear Resonance shows the leaned medula the lateral facet of the vertebral channel. The Nuclear Magnetic Resonance of lumbar column demonstrates espondilolisis and espondilolistesis of L3 on L4. Cone to medular between L1-2. Scoliogram in bipedestation and projection in front and profile shows scoliosis to dorsolumbar moderate. After the diagnosis of syndrome of anchored medula and information of the advantages and disadvantages of the intervention to the patient and family, along with preoperating study that does not contrainindicate it, comes the 14.2.06 with general anestesia and own technique to the section from the coccigueo ligament. She followed good postoperating, missing a migrane suboccipital and improving the compulsive cough. Registered discharged 15.2.06 to pass ambulatory control. Now his cough has gone away, can speak well and he does not have annoyance when swallowing, before he choked. ES Maria Luisa Pedrosa Jiménez, Chiari I Syndrome.
We are enchanted with the treatment, the predisposition, the humanity, the peace that breathes when speaking with him, the tranquillity that he gives, that everything he says is little, in the morning I had tests, in the afternoon results, and the following morning he operated me, I entered operating theatre at 9am and at 10.30am I was –in the ward with a lot of appetite, without headaches, without stitches, with annoyances, and the day after they discharged, I went for a stroll around Barcelona like as if I hadn´t been recently operated on, I was fabulous, and continue to be, I haven’t had to take sedatives, because nothing has hurt. From when they operated the 13th of November 2006 until now I don’t know what pain is, they took off my back contractures, my vision is more centred, no longer do I choke, above all the itch I had in my throat didn’t return which was the most annoying because with a cough my head exploded, I am more upright, my face expresses health and well-being, everything is really good and I’m really happy. But also very indignant because if you don’t have Internet, how can you find out about these options, if nobody tells you, because S.S (social security) believes that it’s their right to make the people suffer knowing that there are other alternatives. I will spread the word, my next letter will be to the newspapers in my city which is GIJON, ASTURIAS, it is called THE COMMERCE and I will spread it in all places wherever that’s possible for me, and if they allow me, I have informed many competent physiotherapists that I know of which it interested them. Well, after treating me without results, due to that everything was for Chiari I and now I consider that many of my symptoms at the time just treated the problem, for example some request if you already have a Resonance report, and they have the information of the Filum Terminal and the Doctor Royo Salvador. My name is Marisa, my telephone is enclosed below for all whom would like to speak with me at whatever time. Regards. Many thanks to Dr Royo Salvador and his magnificent team. Tel: (+34) 659 571 139 E-mail: marysapj@hotmail.com ES Herminia Carrizosa Guerra, Arnold-Chiari I Syndrome, syringomyelia and Scoliosis.
They say that when something bad happens something good is on its way. In November of 2006 I had a loss of knowledge and I am still waiting for them to give me an answer. I collapsed to the ground and I hurt my two ankles. As of that moment my spirit against fighting the illness I collapsed and all I thought I had left, was to resign. Miraculously, my daughters desperation took them to investigate on their own accord through Internet, and it was like that how they found me the doctor, Dr Don Miguel B. Royo. We sent an email, waiting, an his reply was immediate. In only fifteen days I was taken care of in Barcelona, and I put all my hopes into the hands of the medicine of this genius. That same day, the 13th of December of 2006, they did explorations (tests, examinations), day 14th they operated on me and the 15th of December, after almost a year without being able to eat, I ate 2 patty cakes for breakfast before going to the hospital. It could be a silly anecdote, but for me, it was the first day of my new life. Since then the symptoms, of many, have improved. We aren’t deceived, we can’t travel into the past, and the damage done doesn’t have to return, but my future now is another thanks to the Filum Terminale operation. Since then, the pain has diminished considerably, having in mind that I didn’t take, nor if I wanted to, one of my old tablets. In addition, I have recovered part of the tact in the right hand and the tingles have ceased. No longer do I have dizziness, nor do my legs hurt, and in general, I feel better, happier and more active than when I was 20 years old, or at least it’s how I feel. By all means I forgot to say, from that day i eat perfectly. Thank you for fighting against this illness with your talent, The Doctor demonstrates a warm and gentle character towards the patient. E-mail: mibsc@hotmail.com IT Bruno Portelli, Syringomyelia-Syringobulbia, Arnold Chiari I Syndrome and Scoliosis.
By the end of 2000 I had surgery done in Verona, with the classical technique (sub occipital craniectomy and dural plastia implant), from then on I could not walk on my own. The operation left me practically invalid, having lost progressively the use of my legs and left arm. In 2006, after a Banal flue, I had difficulties in breathing with semi Paralysis in the diaphragmatic muscles. That is when I heard about Doctor Royo, with whom I contacted with immediately. After having visited me he confirmed that my case was already quite advanced. He explained that with the section of the filum terminale the inexorable development of this illness could be stopped and mainly try to attenuate part of the consequences the Syringomyelia had caused me. After two hours after the operation I felt perfectly awake and vigilant. I noticed I could breath with no problem and I got to open my hands, which were closed before, mainly the left one. The clinic setting and neurological was stable for more or less 20 days. I had a retrocession and then reached the definite stability which consisted in the following: • My neck had more mobility after the operation, now it is almost like before with a difference in not feeling the strain like I did at first. • The thermal sensation and coetaneous sensitivity got slightly better. • My arms suffer less from the strength deficit and my hands are more functional, although the arms abduction capacity upwards is unchanged. • The capacity of my balance and deambulation with assistance got better; occasionally I had myoclonic episodes precedent from the operation. • Varied Intestinal motility; the problems remain inheritant suboclusions. I hope that this painful experience will serve to the people who suffer from this disease and if they are lucky to be in better conditions than me can reach to Dr. Royo in time so that he can help them, hopefully with better results; evitating useless and invalid operations which leave aftereffects for the rest of your life. E-mail: portelli@vodafone.it Dr. Royo: The day before of the operation Bruno could not maintain himself sitting down on the bed needing three people to lift him up until leaning him against the wall. We did record everything including when five hours after the operation how he stood up from the chair with the only help of his sister in law’s arm. ES Mercedes Reverter Segarra, Chiari I Syndrome, Cervical Hernia Discal C4-5 and C5-6.
On day 13.2.07 Dr. Royo operated on me at the Corachan Clinic in Barcelona, the operation consisted of a discectomy and cervical artrodesis C4-C5 and C5-C6 with titanium boxes and section of the filum terminale. The operation was long and delicate, when I woke up Dr. Royo told me that everything had gone very well. I was calm because i knew that i was in good hands. The following day I noticed that something had changed in my life ,that I HAD NO PAIN. Every day that went by i found myself better and continued having NO PAIN. Day 16.2.07 i was discharged from the hospital having already recovered 70% of force in my hand and could walk perfectly without pain in my leg. When arriving home i rested the maximum however i had so much joy because i felt so good without any pain and nor dizziness. I will never be able to thank him enough nor my family, for what Dr. Royo has done to me. Because it has given me back the desire to live. Now, I begin to be happy. THANKS. Telephone: (+34) 649 222 127 E-mail: administracion@viverosangol.com IT Carlo Condello, Chiari I Syndrome, Syringomyelia, Scoliosis.
Friends and relatives looked in Internet and find Dr. Royo. We decided to immediately to leave for Spain, calling it “ Journey of Hope ”. When we arrived Dr. Royo found me with hipotonía in the legs with the risk of undergoing paralysis. When arriving in Barcelona on the 12 of February, after the many examinations, the diagnosis made in the Gaslini Hospital of Genova was confirmed. On the 13 of February Dr Royo operated on me. Dr Royo, as soon as I left the operating room already had very good color There was a new impulse in the legs, and after a entered day I returned to house. Of the 15 of January to the 12 of February I underwent so much?. Now finally I can say that my life has changed, support all the foot when walking and return to be a normal boy. Before the operation i took medication for the hyperactivity, later, no longer did i need it. All this thanks to Dr. Royo who has studied thoroughly this disease and with the aid of the Gentleman has blocked it and it has given life expectancy me when it already thought that it was not going to grow. Thank you very much with all my heart to all the people who have been close by me, in individual to my uncle Pine, Safe uncle and Orazio uncle. In the Faith. Carlo Condello ES Maria José F. Gil, Arnold Chiari I Syndrome, Syringomyelia and Scoliosis.
My parents like I,were terrified, and they didn't stop to look for information at all costs possible. Thanks to his insistence, my father found on the internet a web page, Institute Neurologic Barcelona, he asked medical friends to assure him that it wasn't anything strange and with alot of caution and with little precision they told me, at first i didn't understand it very well, but the fact that they did not have to touch my skull and that the process was so very invasive made me think that it wasn´t a bad idea to go and visit him, (doctor Royo). When i went to visit, i was stubborn in front of the Doctor, it seemed very strange to me that there was so little information on the web about this operation, and that he was the only one that did this intervention and above all that it was so different to what other doctor had told me. I went with hope and left with more hope than when i entered. In little more than a month I had the operation and as soon as i could open my eyes i saw my parents entering the room and they already had begun to notice changes in me, I began to notice things little by little and as time went on i realized others, not even realizing that they were caused by the disease. I think that its cruelty how the other doctors operate(intervene), and injust for the patients to recieve such little information about possible techniques that are so good and very effective like this one (of doctor Royo) and for that reason i have written this testimony and to offer advice to all those that want to recieve it. E-mail: mafuegil@hotmail.com IT Moscato Giuseppina, Arnold Chiari I Syndrome.
I made an appointment at the Polyclinic of Milán and during the medical visit I was told I should be going through surgery with urgency and if I suffered another trauma I could be risking my life. I cannot describe how my husband and I felt in that very moment when hearing the neurosurgeon’s statement and him insisting that we could not lose any more time in deciding because the situation was very serious and I needed to have a decompression (a very invasive intervention opening up the skull). I visited Doctor Villani who confirmed the same but according to him, it was better to wait one month to see if there were any changes mainly on the nystagmus. On the next control he also agreed with the fact that I needed surgery because the symptoms had worsened. During this period my family and I had searched on the internet all the information we could about this illness. This strange illness had made us fall in the total obscurity after that harmful car accident, as I had never suffered before from any of these symptoms and was always someone very alive. I subscribed myself in a forum of rare illnesses and searched to find out if those patients, after the decompression have had improvement and that’s when I find out that not always they have gone well. Someone even repeated this surgery three times in a row without getting better after it. I decide to get the surgery done because I am convinced that it is the only solution but the same neurosurgeon that insisted before to do it with urgency (Polyclinic de Milán), after one night in the hospital decides to postpone the surgery at the beginning of autumn. At the same time I start communicating with Ms. Rita de Loano, who has been intervened of the filum terminale by Doctor Royo from Barcelona, to see if she has had good results. So if it had been so, I could have then gone to Spain instead having someone open my skull I don’t know how many times. Ms. Rita confirmed that with this intervention of the filum terminale she had gotten better and her state of health was totally different. The major problem was the cost of the intervention ( 12.000€ ) but she was convinced that the Italian social security would cover it because the decompression in Italy costs around 20.000€. The Italian neurosurgeons did not consider this type of surgery although I found out that Dr. Giombini, a famous neurosurgeon from Besta de Milan, practiced similar interventions with the decompression. He practiced the section of the filum terminale only on patients who had Scoliosis. Therefore, I decided to go to Spain although Ms. Rita communicated me that there were problems with the social security rejecting to give the reimbursement. I contact Dr. Royo´s office and they book an intervention for the 06.02.07. I must say, after a few months things went a bit better, my headaches weren’t as often as before, I didn’t feel tired anymore and only during the I needed to stretch out. However before I always woke up feeling tired and went to bed exhausted. Unfortunately the nystagmus still was present but hopefully it will disappear with time. Dr. Royo could not assure me about this, he only assured me that the illness would stop progressing, which in the future would have taken me to a wheelchair. After three months from the intervention, I feel much better, although the nystagmus still bothers me. The doctor from the social security having read Dr. Royo´s medical report certifies that the connection between the accident and the pathology have nothing to do with each other, therefore the Chiari Syndrome is congenital meaning preexistent, so I was not aloud to receive any type of reimbursement besides for only cervical traumatism. The ASL of Milán has recognized at least handicap for 18 months, regarding the 104 law. This is my story and hopefully it will have a happy ending like I’m hoping it will be for many of them who suffer and have suffered as well as be able to find a solution to win against this Arnold Chiari I Syndrome. Sincerely. Moscato Giuseppina E-mail: giuseppina.moscato@fastwebnet.it PE Kevin Espinosa, Syndrome of Arnold Chiari I, Syringomyelia.
They never accepted this type of intervention, we were destroyed but we never lost faith, and they (my parents) felt sure to find another type of intervention that existed and that wasn´t obsolete and that offered guarantee. My parents spent various nights searching on internet this disease and through this route he located Doctor Royo Salvador and began to find out on the type of surgery that he practised on diverse patients, and the exit it had.(Filum Terminal). Including my parents also communicated with other patients that had suffered the same disease and that were intervened by Doctor Royo Salvador. Infront of all this darkness we saw the light. Hence, from then on, we began to maintain in contact with the Institue Neurologic of Barcelona through the Gúzman Mulatilo family and they began to make arrangements to travel to Spain - Barcelona and Doctor Royo Salvador was who operated on me. On the 28th of May I was in Barcelona, they did all the pre-operatory examinations and on the 29th of May Doctor Royo Salvador was operating on me, by means of his technique of the section Filum Terminal. The operation lasted 30 mins, 5 hours later, I began to recover to sensiblity to the temperature in the superior part of the thorax, walked the day after and the discharged me from the hospital. Now I am not fatigue, i walk without any problem, i don´t have headaches, I´m not nervious, my body responds to hot and cold stimuli and my apetite has increased, the colour of my skin has changed, I don´t have backaches. What I can´t understand is that why is this technique not practised in other places around the world, because neurosurgeons insiste on cruel surgery and obsolete (craniectomic suboccpital) that doesn´t guarantee your life. I have knowledge that this technique from Doctor Royo has been exposed in different places and by different means (congress, books, forums, WEB PAGE etc). There are millions of people in this world, that suffer this illness and that can be liberated from the situation, because this bad existance cures. If the technique Filum Terminal extends around the globe, a lot of lives woule be saved. El Doctor Royo has given our family back the tranquility and as well as stability, and we always had confidence in him as from day one, and for me he has given me the possibilty to continue on with life. My gratitude to my family, to Doctor Royo, the Gúzman family, Gúzman Espinoza, and to every person that prayed for me, and God because he guided my steps. I hope that this testimony will help the people with this illness. If you would like to communicate with me my email is: Kevin_05g@hotmail.com IT Rita Presbulgo, Arnold Chiari 1 Syndrome and Idiopathic Scoliosis. Date of intervention: September 2006 I am Rita Presbulgo, I am a young woman of 35 years. For 10 years I have been ill: the doctors always have told me that I have 3 hernias and that my hip on the left side is lower by 2 centimeters. I have been able to follow with physiotherapy and insoles without them operating on me. In May of 2005, I fell hitting my head and back, and in emergencies the Doctor noted severe scoliosis explaining me the future consequences, that is to say, the eventuality of cervical pains. I wore the collar during 3 weeks and my life seemed to continue calmly, until in May 2006, exactly 1 year later after the fall, I began to suffer headaches. The Doctor thought that it was sinusitis, but unfortunately it wasn´t for that reason. Days past and the headaches worsened. Heading for the hospital, they decided to carry out relative explorations and effect a picture of occiputal cefalea. At the end of three months my state of health worsened notability: headaches, tingling sensations in the neck, arms and legs, tiredness, loss of sensitivity on all the left side of my body, burnt sensations in my arms, lost equilibrium, (I fell without even realising it), muscular spasms, difficult to swallow, pain and sense of compression in the thorax, blurred vision, difficult to reed, gastric-esophageous reflux, no longer could I walk, I got tired in 10 minutes, fatigueness when breathing, I was convinced I had a tumor in my head. Finally at the end of August, after some investigations, the neurologist in Santa Corona told me that I had a rare pathology called: Arnold Chiari 1 with Syringomyelia; I was traumatized. I asked if there existed a remedy or at least, what could I do ; the doctor responded coldly that there wasn´t a cure and that the development of the disease will leave me in a vegetable state. I wasn´t satisfied so I searched specialized Internet sites, starting my “via crucis”. I followed a visit with the boss of the Santa Corona, Neurologic Department. Prof. Boccardo, that recommended me an urgent surgical intervention, Decompression. Not satisfied and scared and frightened I went to Florence to the boss of Neurosurgery Prof. Di Lorenzon, that confirmed the gravity of my pathology and that as well as he proposed the same type of intervention. Later I then called by phone Prof. Severi del Galliera from Genova and Prof. Piombini from Besta in Milan, that as well advised me the same, Decompression. I discovered that in Italy they only surgically intervention is that of the Decompression, a high risk (invasive) intervention, and that it doesn´t bring any benefits, it only just worsens the disease. Thanks to my husband, that for pure casualty he found the web page of Dr. Royo ( that he uses his own technique, minimal invasive and it is more efficient.) I decided to head for Barcelona, Dr Miguel Bautista Royo Salvador. He, like the neurosurgeons in Italy, confirmed the gravity of the pathology and the urgency of an intervention, and he proposed me an operation of Tipologia less invasive that only he practiced in the world: The Section of the Filum Terminal After the intervention the pains began to vanish, so I, myself couldn´t believe it, I thought the I was living a dream, with the hope that I wouldn´t ever awake from this dream. When I thought that my life had finished, thanks to Dr. Royo, now I have the hope of finding myself much better and at least I can live a civilized life and that the knowledge of the pathology will not disappear but it has been stopped. Contact details: (+39) 019 670 850 http://siringomielia.forumup.it/ ES Elena Correa. Arnold Chiari I Syndrome, Scoliosis and Herniated dorsal disc D3-4 and D6-7.
They gave me an appointment the 25th of April and so I went. He completely examined me and since I did not bring enough scans, he sent me to have do some more and had the gesture of calling the clinic so I would have them ready the same day, since I came from far away. So I spent the whole afternoon getting the scans done to finally certify what he had already told me with the medical examination he had done. On the 9th of may I returned with all my scans and this was when he told me what I had and, sincerely he started naming strange things that scared me but I don´t know how he gave me this feeling of total tranquility, I could see him so sure of himself that when he told me I had to go through surgery, I didn´t even think about it, he transmitted such confidence that no one had given me before. I was diagnosed with two dorsal herniated discs D3-4 and D6-7 and syndrome of medullar traction faced with Arnold Chiari and Idioptahic Scoliosis. Don’t tell me it doesn’t sound bad?? He explained everything to me with words I could understand and he gave me an appointment for the following month, the 12th of June, a day I will never forget. I was admitted in the clinic at 08:30 am in fast. They took me to my room and a nurse came straight away to explain to me what I had to wear and do. After a short while the warden took me to the surgery room, took my intravenous in my hand and this was the only thing I noticed from the surgery. After taking my intravenous, Dr. Royo came to talk to me and transmitted a peaceful sensation that made my nervousness disappear, I knew I was in good hands. From this room they took me to another one where they put the anesthesia. I could breath a great ambiance between all of us. I do not know the anesthetists name but I really thought he was nice. What happens afterwards, I don´t know because I was completely asleep. When I woke up I was in the reanimation room and everybody was making sure I felt fine. After a while they brought me up to my room and the whole nurse team took keen interest in me, I hardly had any discomfort and this same day I was able to stand up and go to the bathroom. Everything went great. If I mentioned I had no discomfort I would be laying, however it wasn’t anything that I couldn’t cope with. While I was lying down it was fine, the only thing was when I stood up but it wasn´t a big deal. On Friday, 3 days passed the surgery they gave me the hospital discharge and I went home. The only thing they mentioned was to make sure that I rested and the following week I was out on the street. Since the same day of the surgery I have been able to sleep through the whole night without having this stretching feeling, or electric shocks in the legs, nor cramps in my foot. That same day I could notice the cold and I was even in a better mood. Now my mother told me I have grown, but it is only because I can stand straighter without having back pain and I feel much safer knowing that thanks to Dr. Royo I will be able to live a normal life. With this I hope I can help people who have the same problem or if you have any doubts left or you simply want to ask something do don´t hesitate in contacting with. My e-mail address is: elenacorrea@ono.com and my phone number is: (+34) 607 340 721. Kind regards and thank you once again to Dr. Royo and Mara for being so patient with me and in general the whole medical team from the clinic Corachán. Phone::(+34) 607 340 721 E-mail: elenacorrea@ono.com ES Antonia Egea Hernandez, Arnold Chiari Syndrome.
They diagnosed me with fibromiaglia and artrosis, it is the reason why they treated me, to eliminate the dizziness, the vertigos and the pains above mentioned. But all this was not sufficient. The alarm went off when I fell from small stairs and I lost consciousness, injuring my wrist. My neurologist performs a resonance and finds concrete irregularity which is the reason why he recommends me that I visit DR. ROYO at the Neurologic Institute of Barcelona. The diagnosis was clear: I suffered ACM I Syndrome as the cerebelosas tonsils were below the occipital hole. They operated me at the Corachan Clinic and hours later I already noticed an improvement in some of my senses: I recovered my vision without having to use glasses. I could bend my neck backwards (without pain in the cervicals) and I even recovered sensitivity in my arms. Almost two months later, not only did not I suffer of sleepy arms, but I have the necessary force to lead a normal life without requesting aid. I have forgotten what it is to feel pain in the legs and knees, and as well as the continuous dizziness. My memory is now capable of remebering logic phrases and conversations from days ago. My afternoon naps and my fatigueness have diminished, whereas now, I take advantage of the day. Now I have another attitude towards life, I am heaps more animated, and I have the desire to do many more things. Without a doubt, I have gained quality of life and my eyes are now opened to a new world without a lot of suffering. Without more to say, I would like to transfer my absolute thanks to D. Royo and his medical team for magnificent attention shown at all times and his ever so successful intervention. Antonia Egea Hernández Tel: (+34) 977 752 927 ES Carmen Egea Hernández, Arnold Chiari I Syndrome, Cervical Syringomyelia, Idiopathic Scoliosis cervicdorsolumbar..
Thanks to the intervention, I have recovered the strength in my hands and in my legs, I am able to leave the house by myself, I can walk without being scared of falling, the headaches and the pressure at the napeo f the neck has disappeared, I have returned to be a person, with certain dificultéis, but I can do all myself. Am worthy. Thank you very much DR: ROYO, and his nurse Mara, and all the medical team at the Corachan Clinic. Carmen Egea Tel: (+34) 968 182 302 E-mail: madridegea@telefonica.net IT Cristiana Cattaruzza, Arnold Chiari I Syndrome, Cervical, dorsal and lumbar Syringomyelia.
At 19, in October 1984, I had gone through a surgery fixing some objects in my dorsal vertebrates and the correction of Cifosis. I showed the X-rays to Dr. M Aaranzana, I told him that even with the rehabilitation therapy I was feeling worse but Dr. Mosetti did not believe what I was saying. Looking at the X-rays, Doctor Maranzana observed a “blurry” dot, which he thought had to be investigated and specified a cervical MRI sending me then to a neurosurgeon. With the MRI I headed to Dr. Bobicchio, a neurosurgeon from the Cattinara hospital. For Dr. Bobicchio it was not difficult to relieve that I had strong pains in my vertebral column, arms, legs, I got tired standing up, I had shakiness in my whole body, headaches, dizziness, loss of balance, cramps in my legs and tongue, didn’t have strength in my hands and had lost the fine movement in my hands. The following month, in February of 2004, I went through a Disectomy intervention from two cervical hernias. The intervention consisted besides a cage implant, also a piece of extracted autologous bone from the right iliac crest. During some months after the intervention I had a season of well being that was suddenly interrupted in the month of June the same year. When I asked for explications they told me that in the spinal cord I had a Syringomyelic cavity that had to be decompressed and probably the problem was caused by the piece of bone implant being too small. Feeling assured I waited till the day of the surgery established and postponed seven times. The seventh time they postponed it, after a discussion with the boss of the service Dr. Tacconi (who did not treat me very well) on the contrary he told me his opinion was the contrary from Dr. Bobicchio because he thought this surgery was too risky and that I should do have it done when I didn’t have nothing to loose. So I decided to do it. I was always worse, I didn’t understand what was happening to me and I was not convinced that this operation would be the correct one. At the beginning of this odyssey, after a year I thought my problems were caused from a disectomy that came out wrong. Nobody gave me any explanations. In August 2005 I went through a journey at the mountains and took a cable car and went up till 3000 meters. During the rise I felt pain that constricted my cervical vertebrates and little by little I lost sensitivity in my arms and hands. I remember this day of anxiety, the strong pain, discomfort that took over my whole body. Two days later, at my return to Trieste, I went to Dr. Bobicchio for a control and I explained to him what had happened to me. His conclusion was that the altitude had caused a compression and the operation I had to have last year was necessary. He again proposed the decompression surgery. When I asked for explanations about the Syringomyelic cavity from which I did not really understand the origin, I did not receive any answer. While I waited for the tests solicited by Dr. Bbicchio, I tried to undertand a little bit more about the cervical hernias, the Syringomyelic cavities and about the decompression surgery I was about to go through. I went on internet and I typed in Google SYRINGOMYELIC CAVITY DECOMPRESSION. Since then I started to put together all the information that only today I have finished, after 4 years of suffering, terror, frustration, humiliation, renounces… I started a methodical search, consulting all the websites that talked about Syrindomyelic cavity. I put all together piece by piece. I made a list with all the sympomatologies I remembered until the ones which appeared when I was 14 years old. I tried not to panic, I got in touch with the AISMAC Italian Association Syringomyelia, Arnold Chiari and talked to the president Mr. Celada, with his wife Paola, affected by Syringomyelia and with Anton, operated by a decompression. From what I understood, this intervention was very invasive, very painful, very dangerous and does not leave a lot of hope of getting cured…I followed Anton’s advice and went to Florence to see Dr. Di Lorenzo for a medical visit. In this medical visit is where I felt the most humiliated in my entire life. After having seen the terrible MRIs that I had brought (only then I knew that the MRIs that were done in the Maggiore Hospital were of very bad quality), without even visiting me, Dr. Di Lorenzo said I was crazy!!!. Although I had paid a very elevated honorary, I did not see written down two words, for which I did not get any medical report. The only positive thing about this medical report was the suggestion of this illustrious Doctor: given the intervention from 1984 it was better to do an MRI of the whole column and brain. I followed the advice very discouraged. I felt worse every day, I could not work, take care of my children, take care of my house… and I was only crazy!. I almost had to force my general doctor so that he would give me the petition for the MRI and almost by miracle I managed to have it done after a few days. It came out to be somehow useful: There were three Syringomyelic cavities and an Arnold Chiari I. With this MRI and with a certification from the exclusion of sanitary expenses for rare illnesses I headed to Dr. Bobicchio. I HAVE DIAGNOSED MYSELF A RARE PATHOLOGY: SYRINGOMYELIA WITH AS ARNOLD CHIARI I SYNDROME. Dr. Bobicchio without saying a word signed the module confirming my diagnosis. It was beginning of September 2005. Unfortunately the fact of having at last a diagnosis has not been useful to stop the illness. However, stubborn as always, I wanted to know more. was always worse, the symptoms were: - Cervicalgia - Dizziness - Cephalea - Loss of balance - Clumsy with my hands and arms - Vertebral column burning - Disestesia in both hands - Difficulty in walking - Voice alteration - Hypoesthesia in temperature in the almost the whole body - Urinary incontinence ... I felt a sense of debility that obliged me to have long rests to recover strength. In January 2006 I started to take “Gabapentin 300”, three times a day because the painkillers didn’t help anymore. In August 2006 I was declared by the commission handicapped 76 %. Meanwhile I had lost my job because I could not take care of the store I administrated. During that period, always consulting the Internet, I knew about Dr. Royo´s technique in Barcelona to stop the process of degeneration that affected patients with Syringomyelia, Arnold Chiari I and Scoliosis. According to his theory that has been confirmed by many patients already operated by this method, these three pathologies are caused by the traction of a filum terminale much too tense or thick. This problem cannot be evidenced with any pre-operatory test but the presence of these three pathologies is a clear sign of the filum terminale anomaly. I had three possible choices: - Decompression intervention - Intervention of the filum terminale - wait until the day I end up sitting on a wheel chair. On the first of October 2007 my hands were already paralyzed, I almost could not stand up, when I was sitting down I had strong pain in my whole vertebral column and I wasn’t sensitive to the heat or cold in my whole body. The first option I discarded was for two reasons: - Because I was not able to stand such an invasive intervention - Because I had the chance of finding out that the majority of the patients who go through this surgery get worse than before after a few years. The second intervention had more sense, so I got in contact with many patients operated by Dr. Royo. All of them felt better and the improvements were proportional. The sooner the surgery the less irreversible are the damages. This is how my odyssey started finding an Italian neurosurgeon that would validate my authorization for the intervention in Spain. I BANGED MY HEAD ON A WALL. Dr. Chibbaro, Dr. Fornasar, Dr. Skrap.. For the first two, Dr. Royo´s intervention is old- They did not even bother reading what Dr. Royo has published explaining how he modified this surgery turning it into almost a microsurgery. They did not read Dr. Royo´s theory ( I even printed all the material from the internet so they did not have to bother to look for it). According to these Doctors I did not need to have any surgery done because the cavities were stable (they did not get larger in the last three years) and the Arnold Chiari was minimal (?). No one paid attention to how it concerned the Scoliosis, as well as my other symptoms they did not put any attention to them, which were getting worse every day. Although for Dr. Skrap, the only thing he took seriously was my illness but he thought that Dr. Royo´s intervention could be very easily substituted by a Decompression, according to him a routine intervention. This same day on the first of October 2007, with exhaustion I headed to Dr. Royo´s office. The next day I went through the section of the filum terminale. After a few hours I had recovered the use of my hands and all the pain had disappeared. The next day, October third, before they gave me the discharge from the hospital, Dr. Royo also made sure that the thermic sensitivity had come back in almost my whole body. For all the other symptoms I will have to wait a year to evaluate which ones will be the irreversible damages caused by the pathology, damages which could have been avoided if the Italian doctors would have convalidated my authorization petition for the intervention in the foreign country. My consciousness of the ignorance and the Italian doctor´s presumption have ruined four years of my life, my families and thanks to their clumsiness I will probably have to live with irreversible damages for all my life. It consolidates me having found a doctor that is fighting for his recognition in whole Europe the validity of him intervention. A doctor that would like to operate on all the patients who affected with this pathology and give them a new hope in their lives, conscient that the illness does not disappear, that the irreversible damages stay present but also from the moment the section of the filum terminale is done, the illness is stopped. E-mail: cristianacattaruzza@libero.it ES Enara Gorbeña, Arnold Chiari I Syndrome, Syringomyelia and Idiopathic Scoliosis.
I was hoping that this surgery I suffered would be the definite solution to a problem that had ruined my childhood. However, far from reality, unfortunately, the cyst continues without experiencing any kind of change and the Scoliosis progresses at an unstoppable pace just how the traumatologist had informed me last year. For this situation, his inicial proposal was to go through the intervention to straighten up the column and even though after the pertinent consultation with neurosurgery we descarted this possibility given the elevated risk of tetraplegia. In this unending street, when I was looking on internet, I found the web page of the “Instituto Neurologico” and I entered the patient´s forum. A young patient with the same case as mine, thanks to her I discovered Doctor Royo´s knowledge and his technique. Finally I went through the section of the filum terminale last summer and the experience has been totally satisfactory. Although I still cannot comment on any improvements until time passes by and I get a new Scoliogram and MRIs done. I cannot stop thinking about how I could have avoided the previous traumatic surgery. I would like to transmit to all the people who consult this forum, the huge hope it has given me discovering Dr. Royo´s technique and being the first time they comment me about a future with no risks, injuries or physical limitations for the rest of my life. If you wish more information please do not hesitate in emailing me at kalimera-ta-guerrera@hotmail.com Warm greetings.
| RO Cristina Pascale. Mielopathy of Traction. Dorsal and Lumbar Hydrosyringomyelia
Later on I have found on the INTERNET more information about my “problem”, I contacted the INSTITUTE , I have send my analyses and Dr. Royo was able to confirm a clear “Dorsal and Lumbar Hydrosyringomyelia” in my MRI scans, done in the September 2008. In March 2009 I succeeded to solve all my other problems and go to Barcelona for control and intervention. After Dr. Royo’s examination I decided that I wanted the intervention because this was my only chance. The following day I went to surgery and after a very short time my senses begun to come back to me. After a month, I went back to Dr. Royo for a check up and up until now I have been noticing improvements. Progressively all my pain disappear and now I feel like a normal person. I feel that I am recuperated 100%. I want to congratulate and thank Dr. Royo and his team and to mention that he offered me full support and encouraged me by standing by me. As an advice: if you are diagnosed with “Hydrosyringomyelia” go to Dr. Royo because his intervention is the only real solution. Cristina Pascale If anybody needs more information please contact me at 0040723322327or send me an e-mai on cristinapascale79@yahoo.com FR Rose-lys Trujillo, Syringimyelia.
The intervention took place on the 22nd of January in 2008, after the pre-surgery tests practiced the day before. The intervention is minimally invasive; it takes 40 minutes with one and a half day stay at the clinic. Nowadays, meaning a month after the intervention, I have recovered about 80 % of my capacities. Dr. Royo has saved my life. Without him I would have been in a wheelchair or in a bed hospital. The filum terminale technique has no risks compared to another traditional method. I am very grateful to Dr. Royo Salvador, his assistant and all the team that do an extraordinary job. I got the social security to cover all the medical expenses. I am at your disposition to answer all your questions, by phone at (+33) 04 67 36 29 12 or by e-mail: rose-lys.irain@orange.fr IT Cristiano Matteo Sganzerla, Cervico-dorsal Syringomielia and Scoliosis. Date of intervention: July 2007 Since I was a little boy I suffer a light limp in the inferior left extremity caused from a Scoliosis with a consequent asymmetry of 2 cm in the inferior left extremity, which I correct with an intern orthopedic insole. During my growth, my Scoliosis was not treated with a Corset because it was not diagnosed as serious. I practiced sport activities like swimming and soccer until the age of 18-19. In the year 1999/2000 I noticed the first deterioration, a more pronounced limp, lack of strength and my left part of the body felt sensitive. I visited an Orthopedist who suggested electro stimulations in the inferior extremity. Afterwards, individualizing that the problem was neurological, I had a brain, cervical, dorsal and lumbar MRI done, which in 2001 showed a dorsal Syringomyelia extended from D5 to D7. In May the same year they admitted me in the Civil de Volta Mantova Hospital, where other than Physiokinesis therapy they also did an Electromyogram of the Urinary system. Meanwhile I got in contact with a neurosurgeon from the B.go Trento Hospital and at the next August he practiced on me a Laminectomy + Lisi Aracnoidal. The intervention came out to be very invasive, it lasted around 8 hours. The wound got swelled and did not diminish with repeated applications, so they practiced another intervention on me with a Dural plastia of implanted Goretex, which presented a micropore from which there was Cephalospinal liquid coming out. A few weeks after the operation I went back to the Volta Mantovana Hospital to practice my rehabilitation Physiokinesis therapy. During the stay I needed spiral spring (leg and foot), mod. DYNA ANCLA to improve the deambualtion. Meanwhile they identified a disability of 50 %, followed with a regular petition. During the following years after the operation, from 2002 to 2005, I went periodically to the Volta Mantovana Civil Hospital to rehabilitation sessions and for clinic-x-ray routine controls such as MRI, SSEP, PEM, RENAL and BLADDER X-RAYS, URODYNAMICS. During these years, even though I did all that swimming and gym, the worsening kept increasing more every year. Walking was always an agony and I started to have discomfort also in the left extremity, so I contacted various neurosurgeons, which did not recommend another intervention. So I then decided to only find the cure, going through Internet, not only I got to meet people with the same pathology but also a forum dedicated to the Syringomyelia and to Arnold Chiari I. The experience was essential, because I got to compare and understand the subjectivity of the disorders. In the forum people started talking well about Dr. Royo from Barcelona and his new technique “Section of the filum terminale”, a very little invasive and adequate to stop the pathology evolution. This way, after having operated during months and proving the positive and almost miraculous testimonials patients operated by him, I decided to get together with him for a medical visit. I went to see him in Spain and after a thorough visit, he diagnosed me the Syndrome of Arnold Chiari I and Dorsal Syringomyelia in C2 to D8 from the MRIs and suggested the intervention. I went back to Italia for a comparison with the Italian neurosurgeon to whom I exposed the situation and without even looking at the MRIs, he did not advice me the intervention because the clinical setting did not present the “ Tethered Cord”. I informed myself on this subject and I read that the tethered cord is usually not visible in the MRIs, this is why they say: “ hidden tethered cord” and an important number of cases treated of the hidden tethered cord have obtained important benefits. The valued theory of Dr. Royo and the positive success in his already treated cases, considering Dr. Bolognese of Chiari Institute of New York about his creditable words on his work. I decided then to go through surgery. The operation took almost an hour and at the next day they gave me the discharge from the hospital. Up until today, my disorder has diminished notably: decrease in the Babinski sign, decrease in the muscular contractures, increase in strength in the inferior extremities and the brain axis is looser. I want to thank especially Dr. Royo and his team for they humanity and professionalism for how he deals with the patients and all my friends in the forum that gave me courage to try again. I really recommend to all of you who have this pathology to direct yourselves at least for a medical visit with Dr. Royo. Phone: (+39) 03 76 69 11 30 - (+39) 34 80 82 57 28 E-mail: matteo.sganzerla@alice.it ES Generoso Rodriguez Ramallall, Syringomyelia and Platibasia.
The patient Generoso Rodríguez Ramallall was visited in a service of Neurosurgery at the General Hospital of the Social Security Barcelona, with a special interest in Syringomyelia, before cervicalgias radiated by the right superior extremity with sensative alterations in the hand in form of hypothesia to the tact, temperature and deep sensitivity. Determining a hand that did not recognise objects, did not notice the heat and with less tact of the normal one. They diagnosed Syringomyelia and impresion basilar. At the hospital, they propsed him to suppress the odontoides apophysis surgically. This apophysis belongs to the second cervical vertebra that sustains and allows the turn of the head. Followed by th colocation of a halo of the craneal traction to maintain the head.Spent a year with a craneal halo, they fixed the first two cervical vertebras by means of a surgical posterior fixation. The patient remembered that 18 years ago he had partial paraylisis caused by right HEMICUERPO, and he recovered the day after, after the extraction of the cervical hernia discal performed by Dr Royo. He went to the practise , where they informed him in detail of his disease and of a new solution with the surgical section of the Filum Terminal. Five hours later after the intervention which lasted 30 minutes , the patient made a spontaneous demonstration of the recovery of the lost ability in his right hand,in the corridor at the hospital,he was extracting from his pockets objects that he identified without seeing them. A year later we had an interview performed by Sr. Generoso Gonzalez and his wife together with Dr. Royo through the radio stations ‘ Onda Cero’ in Barcelona. Mr Rodríguez Ramallall´s wife asked: Why is this intervention not done by the Social Security ? That was the reason why they vetoed Dr Royo, having known that there were 2 interviews already programmed. ES Jesus Sanchez, Syringomyelia and Scoliosis. Date of intervention: April 2006 My name is Jesus, I was diagnosed with Syringomyelia when I was 20 years old, now I am 42. However when I was 14 I already had compensated Scoliosis and was told it could be corrected with exercises and a hard mattress. It was like that. Until I was 20 years old I had a normal life but one day while I was shaving my right hand did not respond, I had no strength and did not control it well. I went to the emergency room and when I saw a neurologist he asked me if I always walked like that, as he said I had a spastic walk. They did a lot of tests on me, until they told me I had a cavity in the spinal cord and that it was a progressive disease. Little by little I was getting worse, I noticed instability and I stumbled a lot with little strength and little sensitivity in the right part of my body. They operated me in 1985 in the Ramón y Cajal Hospital in Madrid through the traditional way, which was breaking the cervical vertebrates, with a horrible post surgery. When I recovered myself I had to use a crutch to be able to walk. A couple of years later they operated me again the same way, because it had reproduced again, this time I came out in a wheel chair. In 2006 and looking through the Internet I found the page of the Institute Neurologic of Barcelona. I got in contact with Dr. Royo and on the 25th of May he operated on me with the technique of the filum terminale very little invasive but effective seeing that I had respiratory problems that prevented me from breathing right and after the surgery they disappeared. If it had been possible to have this simple surgery when they had diagnosed me the Syringomyelia, I would not be sitting on this wheel chair for sure. Which is why I am willing to spread out this technique to have it used as a first intervention since it is so effective and little aggressive. I congratulate and thank Dr. Royo for his work and I encourage the people who suffer from Syringomyelia that they please get in contact with the Institute Neurologic of Barcelona. If you want to contact me, my e-mail address is: Jesusxx25@hotmail.com IT Daniella Mascaretti, Syringomyelia, Cervicodorsolombar Scoliosis, Mielopatia of Traction.
I tried to extend the work that I was doing and from this way the connection to the web of Institute Neurologic of Barcelona caught my curiosity and of my medical Dr. Lumini because it seemed to give my case hope. After a neurological evaluation attempt Dr. Royo in addition, confirmed the Italian version proposed a newness. The way to stop the disease is by means of the surgical Section of the Filum Terminal (described at www.instiutuneurologicbcn.com). Given the worsening of the symptomology and specially to stop the evolution, I chose to undergo the intervention. After hours, a good clinical evolution was observed: sensation of liberation in all the column and recovery of the tact to the cold and heat in the right half of the body. In April 2007, a month alter the discharge, the postoperative control visit emphasized the presence of force in the right hand and regular reflection of both feet. It also verified the disappearance of the suffering of the medular. Thanks to Dr. Marchettini who gave me the correct diagnosis of Syndrome Syringomyelia and who listened to my anamnesis and furthermore the outstanding anomalies during the neurological tests. Form more than 10 years I noticed rigidity in the neck and with time pain Developer in all the right superior extremity (shoulders, scupula, thorax, hemithorax, arm, forearm, hand). In 2000, with the diagnosis of cervical hernia C6-C7, they had practised a therapy called Onik on me. In 2003, with a diagnosis of the syndrome by subacromial of the right shoulder, borsectomia a subacromial treatment was carried out on me. The pre-operating conservative methods as the constant postoperative rehabilitation did not give benefits in neither cases. The specialists confirmed the success of the operations, attributing to the last of my symptoms to a cericodorsobraquialgia, which had verticalisation of the cervical physiological lordosis, in a attitude escoliotica dorsal right and rare muscular tone. Like indicate, I insisted with postural and respiratory gymnastics, the vertebrales tractions, the massages and taking cycles of antiflammitory drugs. The absence of the positive answer to my reductive protocol and a complete results of the electrophysiologists , indicative information of a diffuse motor neurogene suffering in the predominant right superior extremity in the fields of C7-C8- T1, led to direct me to the pain Centre at the Hospital San Raffaele of Milan. Aquí el descubrimiento del Síndrome Siringomielico y al Institut At Institute Neurologic Barcelona was the discovery of Syringomyelia Syndrome and the possibility of stopping the disease thanks to Dr Royo and to his surgical technique. Now the verification of decisive improvements, with the hope that within time the recovery becomes complete. My contact details: (+39) 03 63 34 49 41 IT Monica Bacci, Cervical and Dorsal Syringomyelia, Cervical, Dorsal and Lumbar Scoliosis.
The CAT does not evidence anything, a second doctor according to him, I was always like that with the dislocated eye, my husband says: “look you are wrong…” anyway, the doctor gives me the discharge from the hospital and says to me: “Come back tomorrow for a Neurological visit”, so I follow his advice and the next day I present myself. The doctor after the first visit recognizes that the eye is dilated like the pupil, he send me to the ophthalmologist for safety and does not diagnose any problem. I go back to the Neurologist who recommends me to immediately have an MRI done, because when there is this type of disorders something causes it and it can only be found out with an MRI.. Then I decide to visit another Neurologist from Pisa, who prescribes me another MRI but when I arrive to do the tests, I cannot do them from the screws I have in my right thighbone for almost 20 years, incompatible with the MRI. Two months have gone by and I have not had any more episodes, I decide to leave everything and I continue with my life between work, gym and home. After two months, I have had episodes of pins and needles at night in both arms, headaches on the left side and left eye, neck pain and left shoulder, back aches. My doctor prescribes me pharmacologic therapy and physiotherapy. In August, the situation gets worse. At night time I cannot sleep and although I take the medicines and use a neck brace, the pains get worse to the point that my husband decide to take to visit a neurosurgeon from the Pisa Hospital, considering very good for cervical problems. This neurosurgeon, after a very fast visit without even letting me explain my problems, he tells me to get a CAT done, because he is suspicious about a Herniated cervical disc and prescribes me other medicines that should ease the pain. After 10 days I come back with the CAT, which evidences other than the Hernia, also a shadow at the level C7 that should be evaluated with an MRI. The doctor tells me since the pain is still present, the Hernia should be removed but anyway he needs to see an MRI of low scope, to avoid the possible presence of a tumor, which is not my case. So he reserves the intervention and gives me an appointment for the MRI. In it, resulted an enlargement of the Ependymal canal with the presence of liquid but no tumor. When I go back with my husband to see the doctor, we ask him for explanations about this enlargement and he says that I probably have it since I was born and surely it is not what causes me pain. So I ask him if the best is to remove the screws and have the MRI done normally to eliminate any doubts. He answers me very coldly “ it is not a quite the case…before we are going to remove the Hernia, we see how you recover and after 6 months we are going to evaluate everything”. We decide to follow the advice and on October 23rd I am hospitalized and operated on the 25th. The next day the doctor tells me that he cannot operate me with a hip sample (from which I would have had to wear a neck brace only during ten days) otherwise he would have inserted me a metal plate. With this metal plate I then could not do the MRI to follow the evaluation of the enlargement. He looked again at my situation a second time and said that after the intervention he should remove the screws to be able to repeat the exam because there are tissues that are not visible and where there could be sick cells. Besides, when they shift turns his companion asks him if he saw well the images in the MRI and if he is sure he wants to operate and very quickly he answers: “ Yes, yes I have seen, I already have spoken with the lady and after the intervention we will remove the screws to do again the MRI. I then feel unsure so I talk with my husband about it, which tells me that now it is best to remove the Hernia and after do whatever the doctor says. The day of the intervention and in the surgery room I assist to a very embarrassing discussion between the neurosurgeon and anesthetist with the service manager who ignores everything. Anyhow, after the surgery I wake up with my left arm feeling numb and with terrible pain in my shoulders and I have the pleasure to see the neurosurgeon the next day at nine o´clock at night and says to me: “but you are still here? You should be at home… cause the surgery went well, you do not have pain from the surgery?” and I answer: “ not from the surgery but my left arm is in the same pain….”and he answers me: “we will see with time and other than that, you have a cyst”. When I asked if the pain was due to the cyst, he says: “ It is not a cyst, it is something long and at the end Mrs. you cannot do anything, the pain will stay as it is.” The next day they give me the discharge from the hospital suffering more pain than before and mentally destroyed. After 4 months of physiotherapy, corticoid cures and painkillers, while I have the screws removed and have the MRI done from a suspicious Torathic “egresso” which results to be a problem but not serious enough to justify all the consequences. In fact he says to me that if I did not have this deep cavity, we would have found the problem, so he sends me to Rovigo. Here the doctor tells me yes, it could get better with the intervention, but many problems are caused by the Syringomyelia (incredible, they have given a name for this disease!) but as the disability starts now, it must be re-evaluated at the end of one year. I go back home really beaten. The following week I visit again a neurosurgeon in Siena and when I explain to him my problems of urinary tracts, also another episode in the eye, although before it seemed that everything could be solved with a little bit of gym, he did not give us clear answers and sent again the evaluation in July. There, when we go back home my husband starts looking on Internet and we go in the forum and the association and the Institute Neurologic of Barcelona. After having contacted with patients who have gone through the surgery before me, we sent the documentation to Dr. Royo and after a week we were told that my case could be operated, so we made an appointment for a medical visit and the intervention was done the next day. Now after one month since the intervention I still don´t realize I have come out of that nightmare and since a year ago I could not live a normal life. I have gone back to work since the following week after the surgery and I am recovering my strength more and more everyday and I feel much better. Tel: 050702586 Mobile: 3208741430 Email: mastertp.tappezzeria@gmail.com VE Reinaldo Andrés Yegres Ruiz, Dorsal Syringomyelia and Idiopathic Scoliosis.
In this moment we didn´t know anything about this illness. The child Urologist that treated the boy sent him to repeat the test to verify the diagnosis, confirming the same. After having some knowledge about this illness and finding out that it did not have a cure and as it progresses the boy´s health was going to deteriorate. For us it was a terrible impact, a boy who looked so healthy had suffered such illness. Here in Venezuela various specialists saw him. One of them said nothing could be done, another one said the best option was to introduce a Catheter in the spinal cord and the other one thought of operating him in the head, although he told us very clearly that he did not give us any guarantee. We felt powerless without knowing what to do, asking god to illuminate us; he listened to us, the boy’s uncle sent us the information from internet showing he had found out about an institute in Barcelona (Spain), where there was (Dr. Miguel Royo) with his team that had a few years of studying about this illness. We got in contact with the Institute coordinator, Mrs. Isabel Montesinos and sent her all the tests she asked for. Dr. Royo and his team did the evaluation and confirmed the diagnosis of Syringomyelia and Idiopathic Scoliosis and they informed us that the boy was a candidate for the minimal invasive intervention. Apart from their opinion, we also consulted in the EEUU but the answer was not satisfactory. We started to think of the possibility of taking him to Barcelona, we did not have sufficient assets but we overcame the difficulties and a year later, in September 2007 we took him to Dr. Royo. The doctor examined him and we noticed that the boy had less strength in the right hand and something that impressed us very much; was that he still conserved the Babinski reflex. Normally this reflex exists in very young children but not in an 11-year-old boy. This was due to the illness he suffered in the spinal cord of the vertebral column. At the next day on 13/09/07, Dr. Royo and his team operated the boy and at the next day when he went to give him the discharge from the clinic, he examined the Babinski reflex again and it had disappeared. 15 days after the operation, Reinaldo has recovered his strength in his right hand and has been correcting the constipation problem. We thank god and will be eternally grateful to Dr. Miguel Royo that with his perseverance in the study of this illness, has discovered the cause and how to avoid its progression. This doctor has given the opportunity to our child to keep growing as a healthy boy and hopefully other people who suffer this same illness have the opportunity to know that there is a solution. This is our testimonial for the world. E-mail: carmenruiz57@hotmail.com ES Barbara Martinez, Syringomyelia and Scoliosis.
It was in 1992 when I was 18 years old that we decided to operate me to free my column. It wasn´t an easy decision to make since I was the guinea pig and the third case for Dr Royo´s theory but after the visit and consultatiing various Doctors, to obtain a third opinion, we decided to go ahead with it. The majority commented to us that the operation itself, consists of the cutting of the Filum Terminal, it wasn´t risky, as long as they don´t touch the marrow and there could be an alternative to the operation by inserting an iron bar in my spinal cord. The truth is that the operation went really well and I feel more free, definetly more stretched out and certainly more relaxed without discomfort in my back. Bárbara Martínezz E-mail: Martinez@illy.es ES Clara Palau, Syringomyelia.
During months I tried to follow the medical treatment that I was indicated to relieve the pain, even knowing that the Syringomyelic cysts kept pressuring my spinal cord and that my only possibility, according to neurologist from the social security was to keep on taking this medication while I tolerated the pain or up until I had to have the cysts extracted with surgery. An operation that did not offer any guarantee in getting better; on the contrary it could aggravate the situation. Under this expectative and seeing that my crisis were every time more continued and intense I contacted with Jesús Sánchez, a patient who had been operated by Dr. Royo with a new technique, not aggressive at all and with good results. I contacted immediately with the “Institute Neurológico of Barcelona” and after the first visit, I decided to go through the section of the filum terminale surgery with Dr. Royo on November 28th, 2006. It has been already two months since they operated me and I have noticed quite improvement. I have only had a few crisis and less intense than before the operation. I can now do some home tasks, my arm doesn’t feel numb anymore and I feel more strength in my right arm. I have started to do some exercise and I feel better every day, so I encourage those people who suffer from Syringomyelia or are in a similar situation, to get in contact with Dr. Royo and appreciate the possibility of having done the section of the filum terminale. It is a simple operation that lacks risks and can bring a lot of benefits. Phone number: (+34) 965 669 813 E-mail address: elenalopezpalau@yahoo.es IT Francesco Mauro, Tetraparesis, Cervicodorsal Syringomyelia.
For this reason I had many medical visits and cortisone infiltrations due to a suspected periarthritis. This problem became worse until in August of 1998, when my doctor told me to have a cervical MRI, suspecting a herniated disc. While waiting for the MRI, in the first days of September of that same year, I started having pains and motor difficulties in the lower left extremity. After 15 days I had to lean on something in order to walk. Almost during the same period, the tremors started which intensified until I had to walk with the help of crutches. During this time I had the MRI in the Carlo Besta Hospital of Milan where they diagnosed me with a probable post traumatic syringomyelia as in 1995 I was victim of a car accident (a head-on collision with a bus) in which I suffered a frontal-parietal trauma. Initially they found cystic cavity only in the C6-C7 cervical tract but later, after a year, it extended from C3-C7 to D1-D2 and D5-D8. Since then, as the symptoms continued to increase, there were many stays in hospitals in Italy and abroad. In the year 2000, I was visited by Dr. Barth A. Green (neurological department of Jackson Memorial Hospital, Miami, Florida), and in the year 2005 in the Hospital Archet 1 of Nice, France, specialized in neurological diseases. But I didn’t get any positive results, on the contrary, it seems that some of the doctor’s diagnoses were incorrect and others could not give a diagnosis that fit the symptoms. Not only that, some of them thought I was crazy, insinuating that I was complicating things myself. This created many emotional problems for me, thinking myself that I was going crazy. Luckily I was able to get over the crisis and started to accept the idea of living with a progressive and invalidating disease against which I probably would have fought with all my might. So from 1999 I had to stay seated in a wheelchair because of clonic spasms and spastic tetra pareses in the lower extremities, all of these diagnoses were done at the above mentioned. I also had pains, more or less strong, that spread through my whole body, besides the acute stages that varied according to the season; I had circulatory problems in all the extremities that caused a thrombosis in the left lower extremity. During those years I had symptoms that were never connected to the disease or not even the cause. For example, during my stay in the Hospital of Lecco in the department of neurosurgery, while I was sleeping I suffered a terrible pain in the thorax which prevented me from asking for help or moving myself. At last, a nurse realized that I wasn’t well and a doctor was called, who without even looking at me, gave me tranquilizing drops, saying that I was agitated. I continued feeling bad all night but, so that wouldn’t consider me a crybaby, I didn’t say anything more, until the next morning, going to the bathroom, I couldn’t do it. I was tired and very anxious. A doctor asked for an ECG that resulted in a parietal heart attack in an indefinite time. Today I don’t have cardio problems. A cardiologist advanced the hypothesis of an abnormality caused by the disease. The same thing happened many times but luckily, without any important consequences, but none of the doctors who saw me was able to understand what it was about. Besides, in the first months of the disease, I had a hemorrhage in the left eye and after a retinal fluorangiografia, the diagnosis was retinol dystrophy. On top of it all, during the most critical moments when I had to stay in bed due to the increase in pain and the loss of strength, for the strong contractions of the thorax, I had respiratory problems. For the strong pains, Dr. Bauknet, anesthetist and pain therapist of the Hospital San Giovanni di Dio de Crotone, took care of me. I don’t know how useful it is to refer to this but I want to say that before 1998 I had many accidents at work and car accidents, more or less important, all with traumatism in the head. I would like to underline that at the age of 14, I fell off a horse onto a rock, hurting the sacrum. Since then I have suffered strong pains and cramps that block me for a few minutes. It seemed that my disease could not be resolved, until the day in which Dra. Piccirillo, anesthetist of the Hospital San Giovanni di Dio and Dr. Bauknet called to tell me that they had found a website which opened the possibility of an operation which could stop the development of my disease. With my consent, the right contacts were made. And, at last, the day arrived, precisely the 11/07/ 2007, we met Dr. Royo and after the visit, which seemed to me to make the most sense of all the visits I’d had, the 12/07/2007 arrived the waited moment of the operation. That morning, lying on the operating table, I had such terrible pains that my only worry was that I wouldn’t be able to lie still after the operation, and how I would be able to bear it. To my surprise, after the operation I didn’t feel anything, at first I thought it was the anesthesia, but in a few hours I realized that those terrible pains that had made my life impossible were now only a bad memory. Happily, my wife and I immediately noticed that the clonic spasms in the inferior extremities, especially in the right, had diminished, from the first hours I noticed a liberating sensation through the spinal column, as if everything had magically disappeared. So much so that the next morning I tried to stand up and with stupefaction, not only could I do this but I could also walk, though with some difficulty. Actually I continue to improve so much that I can walk without any aid, with continuing improvements in the clonic spasms of the left inferior extremity. For everything that has happened since the 12th July until now, I want to thank Dr. Royo and his collaborators for having given me the possibility to savor life as I did at one time. For having given me the possibility to be born again and consider the past as only that, the present much better, and the future to plan my life to benefit those who have suffered with me during all these years, my wife and my daughter. Tel: (+39) 34 75 88 18 48
| ES Ana Sedas Cuebas, Myelopathy Medullar traction with idiopathic Scoliosis.
I then looked on the Internet the maximum information until I found Dr. Royo. I got in contact with him and after the first visit he asked me to get some tests done. We decided to do the section of the filum terminale straight away to liberate the medulla. I bless god for finding Dr. Royo, otherwise I would still be suffering. I still have a problem with my herniated lumbar discs L4, L5, S1 and will go through another intervention with Dr. Royo. Everyday that goes by I thank god for helping me find Dr. Royo and Mrs. Mara. These are wonderful and professional people and also a very nice team. If you wish to contact me, here is my email address and telephone number: E-mail : jonafercrésana@hotmail.com Cell phone: 626689152 ES Beatriz Gómez Zambrana, Scoliosis Idiopatica Dorsolumbar. Date of intervention: December 2007 My name is Beatriz Gomez Zambrana and I’m 29 years old. Since I was 11 years old, I was diagnosed with idiopathic scoliosis dorso-lumbar of 35 degrees for which I had to wear an orthopedic corset for three and a half years. When they removed the corset I started to do yoga and this helped me feel more flexible as my back was always tense. However, 5 years ago, I started having strong back pains and in September of 2007 I discovered that my curvature had progressed 10 degrees. The orthopedic surgeon told me that the only way that the curvature would stop progressing was by an operation in which they would put screws throughout my spine. I had been feeling worse for quite some time but I didn’t want to think that my back had worsened. My hands felt numb, I had a tingling sensation and weakness. I was horrified thinking about this option and seeing that the chiropractor couldn’t help me either, I looked for other alternatives in the internet and found Dr. Royo’s clinic. I sent an email and was immediately well attended to, giving me all the necessary information over the phone, as I live in the United Kingdom. In December I had the surgical section of the Filum Terminale. It was so easy and painless and as they explained it to me in great detail and also told me that there had never been any postoperative complications, I wasn’t worried. I only spent one night in the clinic and the next day I was already sightseeing in Barcelona. When I woke up from the anesthesia, the same day of the operation I noticed that the tension in my back had totally disappeared. It was as if they had released a very tight rubber band. I was very surprised. Four months have gone by since the operation and I haven’t had any back pain. It’s incredible. My hands don’t get numb any more and I have more strength in both of them. I also see myself more upright and my posture is much better. Both sides of my hips are more balanced. I’ve gone back to doing yoga and the change has been enormous, I’m much more flexible. I would like to thank Dr. Royo and the whole team of the Neurological Institute of Barcelona for all their support and I hope they continue helping people with their excellent work. If you want to contact me for more information about my experience, my email address is: beattrice@hotmail.co.uk ES Juan Cabaco, Idiopathic Scoliosis and 3 Lumbar discal Hernias.
Days had gone by, and I took sick leave from work because I was unable with my soul to continue work, I then later mentioned to my mother if it was at all possible if she could accompany me to her Doctor, Dr. Miguel B. Royo Salvador, (a few years ago, he gave my mother her life back) to see if he cold tell me what was happening and listen to another opinion, having already visited other Doctors and they told me that it was only lumbaglia, but when Dr. Royo examined what I had and told me that it wasn´t only lumbaglia, but as well as 3 discal hernias situated in between the vertabrals L4-5 and L5-S1, and a little scoliosis, like my mother, due to Filum Terminal Syndrome ( a form of Cord Traction), a sign bilateral Babinski that indicated an affection of the Spinal cord. At that moment I felt a chill throughout my whole body, he world came on top of me and to see the look on my face, I was left… and Dr. Royo told me not to worry, that what I had was only a tiny problem that he was going to resolve, he told me to what 6 months because being young and swimming that it could correct something, the back, I wanted to wait to see, because what I had was the early stages of the first symptoms. Six months had gone by, which was very difficult physically and mentally. As from the first pinches my life turned around enormously, my symptoms were the ones that I described before, and I was 23 years old and felt like an 80 year old man, with pain, shakes, trembles, always curved (hunched) over, walked 2 steps and it felt like I was walking for 2 hours, a lot of my daily activities converted into a very steep climb and at last that day long waited day arrived, 13th of June 2006, when he told me that the surgery will resolve all, I told him that, I am in your capable hands. I was totally desperate for him to say yes, and that´s how it went, the following week he operated on me. Tuesday 20th of June ,2006, that day was one of the best days and that I will always remember it, because at last I was going to get rid of the problem. It was 8 am in the morning when I entered theatre with nervousness and there he was Dr. Royo preparing and coordinating so that all would go perfectly well and that´s how it went. The intervention consisted of a small opening at the tail end of the lumbar zone and from there is where he cut the Filum terminal, for it to be liberated and like that the tension decreased which was produced from the craneo and the spinal cord. The other part of the intervention was to extract the 3 vertebral discal hernias L5-S1 bilateral L4-L5 left, which had pressed the nerves and finally leaving them free. After the intervention, whilst in the hospital bed I noticed and felt a lot of changes and the first of those was when I stood up that I saw myself taller, like before I was always curved over and I seemed a lot shorter, I walked without being scared, the annoyance I had in the knees disappeared, that overload feeling in the lumbar zone disappeared, the trembles in the hands and the tingling sensations disappeared. In just only a few hours of the intervention, my life did a complete radical turnaround. Now only two months have passed since the intervention and I am the same boy of before whom had the disease, I can now return to my normal day activites without being scared that anything is going to be in pain and that I feel so much more active and with good humor, whereas before I lacked it, that lasted until the sun would finally be hidden. With this testimonial, I want to encourage all the families whom suffer these diseases like how I suffered and my mother, only to tell them that there is a remedy, because a lot of you don´t have the information necessary. Don´t suffer any longer and stop letting others (Doctors) helping you, like they did with me. Doctor Miguel B. Royo Salvador he returned happiness back into my life and that of my family, he is and will be a friend of the family. Many thanks. If you need me, or have any questions to do with anything abut the disease and how I have overcome everything, please do not hestitate in asking and knowing.. E-mail: Billy_er_rapido@hotmail.com ES Florentina Blanco Rodriguez , Scoliosis
Tired to live this, I attended a particular doctor to know if i still had some hope, because I got to the stage of great depression, day after day my body did not respond to my daily tasks. That doctor recommended me to take off the corset as it was atrophying me, and all the muscles,they prescribed me medicines to reinforce my bones and rehabilitation to develop my muscular mass. I had a very bad year, but I obtained that my muscles developed although i still followed on with pains. I had my second son, the same happened just as my first pregnancy, everything got worse, years went by and I was 46 years old, my depression increased seeing myself without strength in my legs and fading away, losing the balance by not being able to control the function of my legs. I went to social security doctors, but nobody found the solution to my problem,that could intervene me doing an operation from the cervical zone to the lumbar zone, putting iron plates with screws, but with that i would lose part of my mobility. There was a waiting list of three to four years, and that if it something terrible happens (it could affect the heart or the lungs) or I would be left in wheelchair, yet to speed up the intervention. I went to the Plato Clinic to request a second opinion from the other doctors to see if there was another solution to my problem,they did all types of tests on me but they said to me that they were not prepared to do the intervention that I needed and they gave me the contact of Dr Royo.. Dr. Royo did the first exploration to find a solution to my serious problem and he did necessary tests and appropiate to see what intervention I needed. After three days of having done tests, knowing the results and to see the problem that I had (Filum Terminal) they operated on me. After 24 hours the operation I got myself up and walked without hardly any pain, knowing that there were annoyances caused by the intervention, which when my suffering had finished, i found an improvement of “ 10 ”, and good bye to the tablets of pain, to the hours of weeping and not knowing what to do when it hurt me so much. Today at my 51 years, I can do my domestic tasks, to go for a stroll, it is to say that , in general I am like a normal and current person, and I do not have to depend on anybody. PS: I desire that God gives many years to Dr. Miguel Royo Salvador so that he continues with his studies and that he can continue helping people who have the same problems that I had. As his last name says, he has been my Salvador - saviour and a great friend .............................. ES Joan Sanchez García, Scoliosis
I have gotten rid of continuous lumbar annoyances and cervical,periodic contractions, permanent sensation of binding, permanent alteration of the tact with a tickling sensation as opposed to any type of contact, friction etc. and aslo logically a future in terms of not a very encouraging quality of life... I have recovered, of a verified way, between 30% - 40% of force in my legs. I walk differently, with ease, more relaxed, in such away that is more elegant and even more upright without any doubt. My breathing is much better. These progressions have been relatively recent, yet in the future everything will settle down and the improvemnents will keep continuing. I hope that something so good, so useful, practical, fast and benefical can be presented at a world-wide level without vetoes, censorships nor impediments, that can arise from stingy and lucrative own interests front to which it would have to reign like priority in all.....the alturism, the solidarity and the use of common sense and above all and more in a transcendental subject as it is the human health. Thanks Dr. Miguel........thanks!! E-mail: joansg@igrafic.com ES Dolores Gómez Cubero, Sclerosis, Herniated cervical disc C5-C6-7 and dorsal D8-9.
During this time Syncopes started to appear with fainting and in the monthly revision appeared some kind of stains in the brain that the doctors pointed out could be caused by the multiple Sclerosis. I noticed more as time went by that I was losing my quality of life, the Syncopes were repeated with no specific pattern and the pain was increasing. Through a friend I got to meet doctor Miguel B. Royo Salvador, which visited me for the first time in the year 2001. He confirmed that I had a herniated disc at level C6-C7 but he, in that moment, considered there was no Multiple Sclerosis yet existing in the Myelopathy. He recommended me a surgery for the Cervical Hernia since I would gain quality of life afterwards and probably the spinal cord would deflate since it would not have any pressure in the cervical disc affected. This on one side supposed a solution to my problems that had started from the accident at work, but from the other, the doubts towards a new diagnosis that did not have anything to do with the previous ones. I took the decision to be in hands of Dr. Royo because I really saw that my quality of life and my state of mind was seriously affected during these six years and my life was turning into agony. The surgery was an achievement after having placed a titanium plate and a transplant in the zone. After six months I was able to reestablish at work. I felt like a new lady, with no pain, with no depression and being able to live a normal life. After two the pain reappeared with the Syncopes, as well the loss of sensitivity and strength in the right extremities. A Myelopathy reappeared with a cervical herniated disc in C5-C6. I went back to Dr. Royo and he suggested me another surgery since the first one had given very good results. In this moment, he commented me he was studying the fact that in a parallel way the showing of the Discopathy there always had been a medullar inflammation. I went through another surgery with Dr. Royo and his team and this time the surgery came out to be a success. The recovery was a little slower due to personal circumstances at that time made more difficult the fast recovery. After a year he gave me the discharge and gave me an appointment for a revision after one year since he wanted to follow up on the existing herniated dorsal disc and that in certain moments started to cause some pain. During this time the same symptoms before the pain came back again and constant pressure in my back, some occasional Syncope and complete loss of strength and sensitivity in my right leg. In the exploration Dr. Royo detected a new Myelopathy at dorsal level together with a dorsal- lumbar Scoliosis. He explained to me that since some years he is practicing pioneer interventions in this ambit, consistent in sectioning the filum terminale to liberate the spinal cord. These interventions are giving very good results and the patients who are operated gain quality of life. He considers that in my case and with my history I am a sure candidate for this type of surgery and proposes me a double surgical operation. On one hand the section of the filum terminale and on the other the one for the dorsal herniated disc. Once again I put myself in his hands and the double intervention is again a total success. In this actual moment after two months from the intervention I notice a general physical recovery and my mental state. For the first time after 5 years of living with constant pain and discomfort and the effort I had to make to tray and live a normal life but always with limitations. Now I have no pain, I have recovered my strength and sensitivity in my right leg, in other words I have noticed a better quality of life, which is improving day by day. All this has happened thanks to Dr. Royo who has made find the new me as I was before. I thank him personally for his professional treat, which has made me feel safe and secure about whichever intervention and for his human quality and to all his team because thanks to their dedication, they have helped me improve my life and by the same way, they can do it with other people who are in the same situation. ES María Dolores Lopez Viñal, Scoliosis dorsal.
My lumbalgia problems, evolutionated to lumbosiatics bilaterals, painful vertebral contractions in the dorso lumbar region, cericalgias, tingling sensation in my hands and feet and including urine incontenence. My life at that time, before this situation of pain just about constantly without a diagnostic with the treatment, I went on with my life at 36 years of age, and 2 children that I couldn´t attend, a husband with certain circumstances at his work wasn´t able to help me in taking care of our children, it was very difficult and with little hope of getting better. In this sitiuation, I went to visit the practise of DR. ROYO, that after examining the tests that I brought, (RMN, x-rays, Electrographs, scoliogram) and new tests that I did, he gave us adiagnostic (medual traction syndrome or tense filum terminal syndrome), eventhough it seems like something normal after the visit with Dr. Royo, there is a diagnostic, for me that was really important and it was the first time that they had given me a diagnostic and a solution to the problem. Dr. Royo propossed the section of the coccigeo ligament with his own technique to the liberation of the Filum Terminal, intervention was done on the 26th of April of 2005, it signifiys that after the intervention and time passed by, all the annoyances “pains” dissapeared, I stoppped utilizing medication, and like a miracle my life changed completely, I could take care of my children,walk, go for a stroll and took a rest when going to the bed, en resumen, my family were telling me that “ I have grown”. Three months passed by and I began t suffer, a lumbar contraction, with a radiated pain direction of the left leg, eventhough I need to say that it wasn´t the intensity of before having the intervention. Three months passed by and I began t suffer, a lumbar contraction, with a radiated pain direction of the left leg, eventhough I need to say that it wasn´t the intensity of before having the intervention. I recognise that eventhough I feel much better, continue having this pain, in a way of intermittent in my left leg and my hope was that little by little this pain would remit just like Dr. Royo informed me. Effectively apart from April of 2006 when everything began to get better evidently, today is July 2007, and I am living a tranquil life and being conscious of my limitations, I can live without PAIN and have illusion for life. ES Javier Rodríguez Rodríguez, Idiopathic Scoliosis, Syndrome Tethered Cord.
After having passed these two years doing tests, the only solution that they gave me for my Scoliosis were antiinflammatory tablets that alleviated me momentarily, but did not solve the problem. I knew that Dr. Royo, had operated of something similar to my uncle and to my father, of the section of the Filum Terminal, and really he gave the solution to my problem and advised me the operation. Finally to say that as from day 22 of January of the 2008, day of the intervention, I have managed to rest all the nights, and my backaches have disappeared completely. My contact detail: (+34) 933 591 267 E-mail: drjbcn@gmail.com IT Rosa Maria Marra, Dorsal Idiopathis Scoliosis, Traction Medular Syndrome.
Now thanks to Dr. Royo and to God that gave me the necessary knowledge, finally I can sleep, on the other hand before I wasn´t able to put myself in any position, nor in the bed, nor standing up and nor sitting down, now I don´t have those tremdeous pains. It has been 2 months since I have been intervened, and furtherdown the track I hope to have other improvements. I am aiming this to the people whom suffer, money shouldn´t be an issue, it is certain that nowadays nothing is sufficent, like it was for me in the end. But if you think in what you spend in medications, visits, physiotherapy, manipulations, etc., that money is nothing, seeing however the results. Furthermore Dr. Royo is a special person, very good,humble and kind,as well as his medical team, therefore it is a pleasure to allow him to operate on other similar people. Kindly, Rosa Maria Marra. Tel: (+39) 32 00 73 85 36
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ES Jose Juan Jiménez Torres, Laminectomy at L5, partial at L4 and bilateral foraminotomy.
I would like them to know, there is a door that can open and they should contact Dr. Royo because he has the key to this door that unfortunately others do not know how to open. I started with back problems in the year 1998. I went to the social security, I had tests done and a disc protrusion was found at level L4-L5, Spondylolisthesis I-II grade, well to make a story short, I went to a neurosurgeon in Murcia and surprisingly was rejected by him and sent me to a Orthopedic traumatologist proposing me to have an instrumented arthrodesis done on me. If I would have had it done, I would possibly be today in a wheelchair. Even with medication my pain did not minimize or anything; the only luck I had was during one of my painful moments I went to the emergency ward of Cartagena, and was lucky to meet Dr. Victoria, who was the reason for how I met Dr. Royo. This doctor said to me; José you are only 28 years old and have a whole life ahead of you, I now a neurosurgeon in Barcelona who is a very good specialist. The truth was, I won´t lie to you, I went to Barcelona being a little skeptical, since I continued having strong pain in my back and legs since two years and no one gave me any solutions whatsoever. As soon as I arrived to Dr. Royo´s office, he sent me to get an MRIs done and as a matter of fact I had everything they had told me I had in Murcia but, Doctor Royo said to me that the problem did not come from the disc protrusions nor the Spondylolisthesis, “you have a Spina Bifida malformation and this is really your problem.” Logically I was surprised and asked him if it had any solution. Dr. Royo told me straight away with absolute certainty, “you have to have surgery and we can calm this pain you have”, I couldn´t believe what I was hearing, I went from seeing everything black to seeing the light again. And in the year 2001 I was operated on from: a Laminectomy L5, partial L4 and Foraminotomy bilateral. The operation came out quite complex and laborious, but the result came out really good. I regained a normal life but of course being careful and had to forget about lifting up any heavy objects. This year I started to feel discomfort in my thorax, loss of strength in my hands, and a stronger pain than before, this pain was stronger and more intense. As usual, I went to the doctor and told me it was a muscular contracture, so they started to give me massages and punctures (so as usual). I still didn’t get better and worsened every time, and thought it was all related to a lumbar problem. Logically, I didn´t think twice about it and went with my wife to see Doctor Royo. Already in the physical exploration, I was told that I had a cervical problem and sent me to have MRIs done and obviously confirmed it. My diagnosis was a herniated disc C6-C7 left medial-par medial that conditioned compression on the medullary cone and left root C7. In that moment the clock came again to a stop. My wife started crying, I was speechless, and the doctor calmed us down with his incredible patience, since this situation was little tense. Because this operation was of high risk for the medulla, he started to calm my wife commenting on how he knew everything was going to come out well, and I tell you with all my heart, I looked at him and said: Mister Miguel, I entirely trust you. Two weeks later he operated on me. On March 24th, 2009 I had a cervical C6-C7 disectomy surgery done with a titanium box. The surgery came out to be a success; thank god I decided to have the surgery since the doctor told me when he came out of the surgery room that the disc was totally broken. I don´t even want to think about the possibility of becoming stiff from the neck and downwards. I am actually still recovering little by little, but doing well. The last thing I would like to tell you is about my daughter, which is the most painful thing for my wife and I. My 13 year old daughter, Omara, suffers back pain, cannot stand up for too long and has urinary incontinence during the night. We have had MRIs done and the traumatologist from Cartagena (Spain) tells us she has nothing and besides she didn´t even want to write certificate to avoid her doing physical exercise at school. Well, it seems like the little girl has a tense filum terminale syndrome and must be operated on. Anyone who has children will understand me and of course soon Dr. Royo will operate on her because we fully trust him and we assume he will treat her like if she were his own child. The intention of telling about my case is to encourage you and that you do not have to be afraid. I wish we had 100 doctors Royo in Spain! If anyone wants to ask me something or simply talk about this, my email address is: jojujito@hotmail.com Best regards to everyone and cheer up. ES David Mirete, Herniated disk in left L5-S1
During the whole year I attended physiotherapy sessions, but the pain persisted. I had many tests done and the painkillers, tranquilizers and physiotherapy was always the ideal treatment. In June; seeing that this did not work, desperate by the pain, always thinking that it was a simple hernia without importance, they recommend me an Osteopath. The Osteopath made me do a series of movements that made my pain disappear right after the appointment. I thought; this is great! At last, I have no pain! Two days later I almost couldn’t walk, I had to lay on my bed because of the pain and was so strong, I couldn´ t even go to the bathroom. I had a feeling that I would not be able to walk anymore. Three doctors had to come with urgency, each one with their correspondent treatment. I lost count of how many injections I had to calm my pain. I told my father to make an appointment with Dr. Royo for me because this could not be normal. Curiously, Dr. Royo had already operated on my father three times, also my wife’s aunt and my cousin. One thing I was sure of, if someone had to operate on me, it had to be him, since he was like my family’s doctor. I arrived with crutches and my curved back to the appointment, just as an 80-year old man, with incredible pain. The doctor told me this could be fixed only one way and this is what happened. I went through surgery on the 7th of July. I entered the surgery room with a lot of pain, but when I woke up from the anesthesia, the pain was gone, my suffering had disappeared; I could not believe it. The doctor told me I had been in such terrible pain because I did not just have a simple hernia. Two months later, I am feeling great, I go swimming, I can drive my car and soon I will be riding my motorcycle and living a normal life. I only have words of gratitude for Doctor Royo and his kind, pleasant and professional team. I wish I had attended him much earlier but sometimes the surgery room frightens us, which should not happen with such team. I only want this story to encourage people to really take in consideration their quality of life. As you can see, I had been suffering during the whole year I met Dr. Royo. Don’t make the same mistake, if you suffer from similar symptoms or if your doctor diagnoses you a back lesion, you should make an appointment with Dr. Royo, for sure you won´t regret it. If you have any questions you can reach me on this number: (+34) 617 219 998 or send me and email at this address: dmirete@promas.es ES Ramón Borras Iserta, discal Protrusion in left L5-S1, discal Protrusion in C5-6 and D12-L1, Scoliosis.
They recommended me Doctor Miguel B. Royo and without a doubt I went to the first visit in September 2007. They did a physical exploration on my whole column and detected a discal Protrusion on the left L5-S1, a discal Protrusion in C5-6 and D12-L1 and Scoliosis. In October 2007 I went through the surgery for my Herniated disc in L5-S1 and Scoliosis and after being three days in the hospital I arrived home and my left leg was not bothering me anymore at all as well as my lumbar. I am not a doctor but I consider this operation totally successful, since my life has changed radically. A month after the operation I started swimming everyday and after six months I went back to practicing mountain sports and I live now a normal life without any troubles. I want to congratulate Dr. Royo´s team for their professionalism and the exceptional treat maintained. If you have any questions, do not hesitate in contacting me. Teléfono: (+34) 667 690 019 E-mail: endumon@hotmail.com ES Carmen Becerra Barranco, Stenosis of the vertebral lumbar canal and Lumbosciatica.
Time went by until they told us the story about a lady who had gone though surgery on her column in the clinic Corachán in Barcelona by Dr. Miguel B. Royo Salvador. Thanks to her testimonial, my father made an appointment and went to the clinic. She brought all the tests she had and the Dr. saw them and said she had to be operated, but it would not be a complicated operation and the recovery would be also fast. To tell you the truth, it all happened just as the Doctor told us it would be. My mother went through the surgery on September 19th, from Lumbosciatic and Stenosis. The duration of the operation took three hours and it all went very well, she felt very relaxed and awake when they took her back to the room. On the 22nd of September she was given the discharge, we took a plane to Almería and with no problems. Nowadays she is perfectly well, the pain she had before stayed in the surgery room. The operation consisted in filing the bones in the column canal in various levels that were choking the nerves in the column; this is why she was losing sensibility in her legs. We recommend to everyone who identifies himself or herself like my mother to attend Dr. Royo, for sure he will find a solution to your problem. Thank you to all his team. E-mail: marijero2002@hotmail.com ES Antonio Victoria, Herniated disc, Cervical disectomy in C5-6 and Arthrodesis with titanium box. Date of intervention: September 2006 From right here I wish to thank Dr. Royo. My name is Antonio Victoria, I am 47 years old and I am a doctor as a profession. I work in a service emergency general hospital, with a frenetic and intense activity. Since a couple of months ago I started to notice the sensation of wearing an armor and squeezing in the legs mainly in the thigh regions, which at first I related to the heat and work excess. During a night guard I started to notice loss of strength in the arm and left leg thinking it was about a vascular brain accident. Finishing the guard I had an MRI done since I previously had some cervicalgias and I had sensibility loss in my first and second finger of my left hand. I was then confirmed that I had a cervical discopathy that protruded the spinal cord. It took me too minutes before I contacted with DR. ROYO from neurosurgery of the clinic Corachán of Barcelona and in a few days he resolved the case magistrally, being totally functional to go back to work. I encourage everyone who has these problems to not hesitate and act like I did. Best regards Miguel and THANK YOU SO MUCH. E-mail: laloba_nieves@hotmail.com ES Dolores Castillo,Bilateral Lumbo Sciatica, paresis of the right dorsal foot flexion. Bilateral Radicular compression in L4-L5.
With these lines I want to thank Dr. Miguel B. Royo Salvador and to his work team for their good work, their big experience in their work, their charisma and the affection they give to people who need it. If you have any problem related to what I had, do not hesitate in asking him for help. ES Pepi Fernández Sola, Herniated cervical disk in C4-5.
- Traumatologist: without exploration, he sent me directly to the neurosurgeon (4 months waiting list). - Neurosurgeon: after the exploration and having seen my lumbar MRI, he said the pain I felt at the top of my back and head was not caused by the hernia, he sent me to the rheumatologist because he thought it was fibromyalgia (2 months waiting list). As I could not wait for 2 more months as I was worse with my headaches, neck and arms. I went to a private rheumatologist, where he tested me for rheumatic diseases and the result was that I did not have anything wrong. I was desperate and tired of taking anti-inflammatory medication. I am so grateful for the day that a family member mentioned to me the case of a colleague from his work. The colleague was seen by Dr. Royo and summing-up in two words: “got cured”. I immediately got in contact with the clinic and they gave me an appointment for an evaluation with Dr. Royo. Only with the physical exploration he diagnosed my problem (he detected that I had loss of reflexes and was losing strength in my right hand). He confirmed my problem with 3 MRIs. My diagnosis was: Herniated cervical disk in C4-C5, which was the cause of my pains and discomfort. I also have the lumbar hernia but he mentioned that if we first gave a solution to the cervical hernia, the lumbar hernia would possibly get better. Doctor Royo explained to me in detail the solution, and this solution consisted in going through surgery. In that moment I felt very scared of the surgery, but the doctor transmitted me a lot of confidence, since the surgery guaranteed improvement and I knew that this doctor is an eminence in his profession seeing that he has an expanded professional career. The next week I went through surgery, 17-10-06 and after 3 days in the hospital, I went home to recover. During my recovery I could contact Dr. Royo to consult any doubt as many times I wanted and needed. After a month I came back for the check up where the doctor confirmed what he had mentioned at the day of the surgery, that it had been a success as I gained back my strength in my arm and also my reflexes. I finally don’t have the pains I had in my neck, arms, head and top part of my back. My life quality has gotten much better, although still, according to Dr. Royo, I still have approximately one more month to be perfect. Lastly, I want to thank Ms. Mara Espino for the service and attention received and especially how Doctor Royo Salvador has treated me personally and professionally. His human quality made me feel safe and his big professionalism gave me an enormous safety, before, during and after the surgery. I encourage everyone who has these back pains to contact Dr. Royo. If you want to contact me or consult me any doubt, this is my e-mail address: pepi_1128@hotmail.com ES Carmen Godas Román, lumbar canal stenosis and lumbosciatica.
I’m very happy to have had the surgery and grateful to Dr. Royo as I have gotten back my quality of life and I can look after myself and I don’t have anymore pain. Thank you, Carmen Godas. ES Oriol Royo Obregón, Luxation and Listesis C6-C7.
Once I had found a neurologist, he did different tests to check my reflexes and feeling… he told me that in most probability, I would have to operate but that I should see a specialist, he mentioned two neurosurgeons, one of them was Dr. Royo. The day that I went to see Dr. Royo, six months had already gone by since my accident. When he saw my different test results, he realized that I had to have surgery. I had a luxation, we quickly set up a day for the surgery. On the 27th of February he operated, there were no complications, a few hours after leaving the operating room, I was totally fine, without any pain. Three days later I was discharged and I could go home, I rested for fifteen days and now I have already started leading a normal life but with tranquility and without strain. When a month has gone by I will be able to take off my surgical collar and if all goes as planned, the middle of April I will be discharged. The purpose of this account is, in the first place, to give you advice, don’t delay if you find yourself in a situation like mine, I thought I was going as quickly as possible but between one thing and another, more than six months went by, which put me in a high risk situation and not only that, could’ve meant complications in the operation. Secondly, to give encouragement to those who have to have this kind surgery as there are no problems, it’s painless, there are no after-effects (except wearing a surgical collar and resting for a month, not much), thanks to the delicate work of the doctor, you can’t even see a scar... Thanks to all the doctors, nurses, stretcher-bearers, assistants… who took care of me from the moment of my accident to the present day and especially to Dr. Royo for his speed, sincerity and professionalism. Email: uri_yuri_85@hotmail.com ES Sandra Lucas, Disk herniation Lumbar L5-S1.
This went on for 2 ½ years. IT WAS HELL! Through the internet I found Dr. Miguel B. Royo Salvador, who explained everything to me very clearly. After giving him all of my tests, we decided to operate. At last on the 26 of June 2007, Dr. Royo operated on me. The surgery went very well, the next day I already had strength in my foot. Day after day the pain in my waist and legs started going away. It has been 3 months since my surgery and I’m feeling great, at the point of going back to work. I can’t believe how well I feel. I can do tons of things that were impossible for me to do before. I recommend Dr. Royo and his team to everyone who has this problem or something similar. He has changed my life. From here, I thank him. Sandra E-mail: annamimo@hotmail.com
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