Surgery date: 10/12/2013

Hello, I am the mother of a girl who underwent the Sectioning of the Filum Terminale aged 8 in December 2013. She was the fourth Japanese patient who underwent surgery at the Institut Chiari de Barcelona. It has been 6 years and half since the surgery was performed and everything has gone very well. Our daughter had a very severe Syringomyelic cavity, extended until the lumbar area, but 6 months after the surgery it decreased to a half, and after 18 months to a third. The cavity still persists, but it is decreasing little by little. After 2 years and a half, some changes were observed in the descent of the cerebellar tonsils, and after 4 years and a half there were even more improvements. Our daughter’s doctor in Japan was surprised by the result of the sectioning of the filum terminale and told us that, as the cavity has decreased that much so far, she should be fine if no symptoms appear. However, as the progression of scoliosis cannot be completely avoided, the Institut recommended us the Schroth method and, 4 months after surgery, our daughter began to practice it. For 4 years, we were able to slow down the progression of the scoliosis, but in December 2018 with the beginning of her development, our daughter’s curvature worsened up to 48 degrees. So, we decided to change rehabilitation centre, and after 1 month the curvature improved to 33 degrees and we followed the indications to keep improving the scoliosis.

Thanks to the Institut Chiari de Barcelona, our daughter has a normal life and goes to school like other children. I would like to explain how our daughter is doing 6 years and half after the surgery and the four obstacles we had to overcome in order for her to undergo surgery in Barcelona. I hope this testimonial will help those who suffer from the same diseases as hers.

How we got to the Institut Chiari de Barcelona

Our daughter was diagnosed with Scoliosis when she was 5 years old and she was monitored for 3 years. At the age of 7, she was recommended to have MRIs done, because her curvature worsened. It was then when we discovered that, apart from Scoliosis, she had Chiari I Malformation and Syringomyelia. They also told us that her Scoliosis was due to these two diseases, which had to be treated with neurosurgery before being able to start the Scoliosis treatment.

During the neurosurgical consultation, they told us that the treatment to be applied was the Craniectomy and, since the syringomyelic cavity extended until the lumbar region, it was severe and had to be operated immediately. “Why does our daughter have to go through all this? She is only 8!”, was what I was thinking in that moment. My husband and I, hesitant, started to search the internet for information on the diseases and the treatment. We discovered that Craniectomy is an invasive and high-risk intervention, which may require 2 or 3 further operations if the symptoms worsen, and yet with the possibility of no improvement. We found testimonials of Craniectomy patients with severe sequelae, so we started looking for alternatives to this surgery.

In the internet we found the sectioning of the filum terminale carried out according to the method that is applied at the Institut Chiari de Barcelona. We printed Dr. Royo’s publications and showed them to our daughter’s doctor. His reaction was like that of other doctors, who question the results of the method. However, once we decided that we were going to go to Barcelona for the intervention, he helped us prepare the images necessary to operate our daughter. We were lucky to find a doctor like him who respected our decision.

The first obstacle: establishing a good relationship with the Japanese doctor

Our daughter’s doctor waited until we decided which surgery our daughter would have, although she was meant to undergo a craniectomy, and he understood us when we told him that we were going to opt for the Institut Chiari’s method in Barcelona. We were not at all sure what to do, since our daughter had almost no symptoms of Syringomyelia and Chiari Malformation. We got in touch with Ms. Yuka Takahashi, responsible for Japanese patient care, with whom we established a relationship of trust, thanks to her attention and reliability. We also contacted Japanese patients who underwent surgery at the Institut to know their opinion. My husband and I opted for the sectioning of the filum Terminale, as it is a minimally invasive surgery, without sequelae and, if we had not obtained the desired result, we could then have considered the Craniectomy. At that time, we still had doubts about the effectiveness of the sectioning of the filum Terminale, although we would later change our mind as the syringomyelic cavity got incredibly reduced.

The second obstacle: the geographical distance

Unfortunately, there are no collaborating centres of the Institut Chiari de Barcelona in Japan. After the sectioning of the filum Terminale, I believe it is essential to be able to rely on a doctor in your area for check-ups. The team at the Institut was aware of the difficulties due to geographical distance and offered us orientation and collaboration, establishing a relationship of trust with our doctor in Japan in the post-operative period, which was of great help. If we have any questions about our daughter’s symptoms, we can consult the medical team through Ms. Yuka Takahashi and if we need to see a specialist, they recommend who to contact together with their opinion. Although we cannot consult the doctors in person, we are satisfied with the post-operative care of the Institut’s team.

The third obstacle: costs of intervention, travel and accommodation

Undoubtedly, the sectioning of the filum terminale surgery is more expensive than undergoing a Craniectomy in Japan, because in addition to the cost of the surgery, you must take into account the costs of traveling and accommodation in Barcelona.

The fourth obstacle: language issues and hotel and flight reservations

For those who are not used to travel to foreign countries, going to Barcelona for the intervention would be a challenge. We had no problems when booking a hotel, flight, nor did we have any difficulty communicating, since I have been abroad and I speak English. We didn’t have any concerns about the medical issue, as Ms. Takahashi always translated for us. For us, the 7-10 days of stay in Barcelona after surgery were probably more problematic, as we were alone and without a translator. We stayed in an apart-hotel with a kitchen and the day after discharge we went out for a walk, while they were cleaning the room. Every day we visited a tourist site, so we can say that the sectioning of the filum terminal is a minimally invasive intervention that allowed us to visit Barcelona.

To conclude: what we think about the Institut Chiari de Barcelona

At the Institut Chiari in Barcelona there are neurosurgeons and neurologists who are specialized in the treatment of conditions like Arnold-Chiari Syndrome type I, Scoliosis, Syringomyelia and Disc disease, and were able to visit our daughter following different perspectives. The preoperative consultation lasted more than an hour, during which they performed the neurological examination and thermography. In Japan we have never had such a detailed visit and, although we are not medical experts, we have been able to observe the changes in our daughter’s condition in the pre- and post-operative phase.

Every time our daughter gets MRIs or X-rays done, we send them to the Institut. The relationship with the doctors does not end with the surgery, but it is maintained over time with any consultation. Although our daughter has to go to rehabilitation every month, she has a normal life and the Institut Chiari in Barcelona taught us how to live with her condition. I hope that the sectioning of the filum Terminale will become an alternative – besides Craniectomy – for patients with the same conditions as our daughter’s, because this way their physical and psychological suffering could be reduced.

Surgery date: September 2012

Hello, my name is Angelo Di Salvo, I am 16 years old and live in Catania.

More or less one and a half years ago, following different clinical tests and a sudden increase of my scoliosis, I was diagnosed with Arnold Chiari I.

Since I was little I always suffered from headaches and speech delay and I was being treated in the neuropsychiatric centre of my town, but none of the doctors diagnosed this syndrome.

Luckily I found an excellent and scrupulous physiatrist who ordered a magnetic resonance of the head due to which the descent of the cerebellar tonsils was detected.

After consulting with different neurologists in Italy, with results that were not satisfying and the treatment options were not comforting, my parents started to search the Internet, they found the Institut Chiari de Barcelona and they realized that this was the convenient way to go.

They contacted the very kind Mrs. Luè , sent the diagnostic tests that they had been asked for and the medical team diagnosed a cord traction syndrome, Arnold Chiari I syndrome, idiopathic scoliosis once they studied the material and to be confirmed with an appointment at the Institut Chiari.

We made an appointment for 12 September 2012 at the Institut Chiari, following a scrupulous examination that confirmed the need for the surgery of the Sectioning of the Filum terminale. I went into the surgery room at 8 o’clock on 13 September. Atd 14:00 hours I got up and was already able to walk. I was discharged the next day and returned to Italy, everything went very well.

The first follow up six months later it could be observed that the cerebellar tonsils had not worsened, the scoliosis was stable, and the syndrome had been blocked.

One year after the surgery, after a lot of physiotherapy, a lot of swimming and good will we started to see results with my scoliosis.

I will never get tired of thanking and praising Dr. Royo, a person with exceptional human virtues, his collaborators, Dr. Marco Fiallos Rivera, Dr. Mendez and Mrs. Gioia Lue and all the other collaborators at the Institut Chiari.

Thanks to them I can look into a clearer and more unruffled future.

Angelo Di salvo

Email: [email protected]

Surgery date: September 2012

Hello from Berlin, my name is Sabine Bergmann and I am 50 years young.

I have scoliosis (ca. 30º) since my childhood. It was treated intensively with physiotherapy since I was 12 years old until the end of the period of growth. After that they said: always practice some sports and in „further on in life“ you will be getting some problems.

I suffered a bad fall on the coccyx in my early twenties (I have pain until today) and a serious whiplash in 1994. From that moment on I constantly had to deal with vertigo, nausea, sight disorder, headaches and muscle tensions. I´m not even able to use reading glasses, because these troubles increase with them.

Due to the scoliosis I had since 1999 also increasingly problems in the lower back with irradiation into the legs and harming the bladder function. CT-guided infiltrations, countless medicines, intensive rehab followed one after the other, up to the suggestion to operate the scoliosis, this didn´t convince me already back then.

All these problems increased notably over the last years. And my quality of life was decreasing. Not even minor exercises to strengthen the muscles were possible, because the cervical, thoracic and lumbar spine would constantly influence each other. Hiking and bike-tours bring about extreme problems afterwards. Even a visit to the cinema could cause my cervical spine to „log out“. The normal burdens of daily life started to become a problem. My autonomic nervous system was a total mess. On top of the problems with the cervical spine during the daytime and with normal strains, I had often pain and cramps in legs and feet, the thoracic spine and ribs would often drive me crazy at night. Yoga would sometimes help a little, primarily mentally. Osteopaths brought successfully relief regularly for years (ca. every three weeks, and additionally in acute situations). But after a short while/or a bad movement everything would return to being just as bad as before.

Despite these really good treatments I increasingly suffered at night additionally from circulation problems, tachycardia and tinnitus. Often I´d sleep for just two to three hours, and never in a row. If I turned over, I had a relief for one thing, but instead something else would start hurting, cause problems. I tried countless cushions. In the mornings I was always just absolutely exhausted and wondered how I was supposed to get trough the day, work and daily life and increasingly my body would be on strike completely. Today I wonder how I managed to withstand it all.

I always had the feeling that some kind inner force was working against me, it pulled everything crooked and together!

New reports regarding the cervical and thoracic spine certified several herniated discs with myelopathy, odontoid process with basilar impression and an arteria vertebralis syndrome.

In June 2012 I was searching once again desperately on the Internet and found this website here. I was, and still am, impressed with the idea that a cord traction syndrome (caused by an overly thick and tense filum terminale) is the cause for my scoliosis, and its consequences, as is the fact that the consequences from the whiplash would still not have improved after 18 years and that the professionals of my city were able to help me always only temporarily.

I immediately sent an email to Barcelona an received the reply from lovely Mrs. Kühn in German. Then everything happend very quickly and I was operated on 27 September 2012 by Dr. Royo and Dr. Saavedra. The decision to fly to Barcelona and have the surgery was an easy one to take. Already at distance I had a certain feeling that I was doing the right thing. For preoperatory testing on location, one day before the scheduled surgery, I was internally totally calm. Without doubts and enthusiastic with the team and their expertise. I never before felt that I had been examined so well and thouroughly.

The surgery went well and already flew back home the day after. Immediately after surgery I had the feeling that my cervical vertebras were better „put“. Four hours after surgery they checked the same reflexes as before the procedure. The results were sensational, for examplethe strength in the hands had increased after these few hours by four kilos on each side.

When I walk up after the first night following surgery, I was so happy I shed some tears, – I had slept wonderfully for the first time in years.

Now, seven weeks after surgery, I look cheerfully into the future. The world is great when you´ve selpt properly. Only rarely do I get the tinnitus or circulation problems at night, and when they do appear then in a much less intense form. Since the surgery, I haven´t had anymore cramps in feet and legs, vertigos and nausea only rarely. Back and leg aches flare up once in a while just for a minute – then everything is gone again!! Before, all these problems were my constant companions! My osteopath says I am more and more straight and can see an obvious positive changes after such a short while.

Currently I am struggling for reimbursement from the public health insurance company. The price of the surgery is a bargain for everything that I have gained. It is a shame that the burocracy and friends of the German health system are blocking a reimbursement until now, event though the success is visible and measurable, the sectioning of the filum terminale would help many scoliosis, Arnold Chiari and Syringomyelia patients in the best possible way and would so avoid/minimise furhter treatment costs up to early retirement. But I keep on struggleling together with the international patient association AI.SAC.SI.SCO (International Patient Association – Arnold Chiari Syndrome – Syringomyelia – Scoliosis Filum Tomizzati onlus).

A thousand thanks to the team at Instituts Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) – I am a once again a happy person- I could hug the whole world, that´s how happy I am!!!

Sabine Bergmann ([email protected]) , November 2012

Date of the intervention: May 2008

Hello to everyone, my name is Josefina Lopez and I work as a pediatrician in a health center. In the year 1999 I was diagnosed of a left lumbar herniated disc L5-S1. I did not think twice about it, in the month of May of this same year Dr. Royo operated on me fantastically. Dr. Royo did it with total success and I got to go back to my daily activities within a month.

Not being happy with it, in March of 2008 and after strong pains between both of my shoulders, they had me do an MRI and detected a dorsal herniated disc with dorsal engagement between D7 and D8 and a Scoliosis. This time I did not hesitate not even a week, I got in contact again with Dr. Royo and in very little time I was operated on my dorsal column and of the filum terminale. A spectacular result, in May I had the operation and in July I was working again. I could go back to all my obligations to 100 %, of course I drive; I go swimming, so I had a normal life. Oh! And my Scoliosis that accompanied me since 14 years ago was cured, my column is completely straight. So I encourage all the patients to cheer up and contact with Dr. Royo at the Institut Chiari de Barcelona for these neurological and neurosurgical matters, because he reaches where no one else does.

Kind regards and good luck to all.

You can contact me at my mail: [email protected] 

Date of intervention: January 2008

Hello,

I am Javi Rodriguez, I am 21 years old and thanks to Dr. Royo my back pains that I have suffered for many years have dissappeared, and which had worsened in the last 2 years, taking me even to the point of not being able to sleep due to the strong pain that felt.

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: [email protected]  

Date of intervention: November 2006

My name is Joan Sanchez, and I am 25 years old from Barcelona.

I want to put into writing my testimony by the illusion to know that with my toleration I have been freed by motivation and also illusion, I want to help to fight, so that this discovery arrives to all the homes where there is any equal person with or similar pain. My pain is scoliosis idiopathic caused by the tension of the Filum Terminale. This caused rotation of the vertebrae of the thorax box 3 curves of 10º, 25º and 39º respectively, and on the other hand it caused the displacement of my brain 1.5 cm downwards (Arnold Chiari I syndeome). The intervention has freed me from pain, that has been growing with me and worsening with time for the last 10 years.

It is for me a pleasure, to express and to show my experience here, my improvement, longed for cures, after years sailing without a course, knocking on doors of which the solutions were mere patches to alleviate, to diminish or to calm the pain.

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: [email protected]

Date of intervention: April 2005

As from 1997 (at the age of 29) I have been suffering episodes of Lumbalgia from over lifting in the posterior lumbar zone and eventhough at the beginning they were “PAINS” that with medication, it permitted me to live my life relatively norml. It is as from the year 200 when these episodes of pain, they became more frequent and lengthy that I found it rather difficult to live a relatively normal life.

As from 2002, these problems worsened and prolonged which made it rather difficult to live a normal. These problems they sharpened as from the year 2002 and despite of being subjet to various tests, I didn´t obtain a diagnostic.

To be able to treat those “PAINS”, I under went habitual treatments(antinflammorties, muscular relasantes, anaegisiacs, local heat, massajes, rehabilitation, highly invasive treatmens), before I was treated by means of surgical staples, they did 2 lumbar rizolosis on me, I was treated with ozone therapy and last they implanted an electric medular estimulater at dorsal lumbar epidural level, and after all these treatments, I didn´t improve.

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.

Date of intervention: February 2001

Dorso-lumbar Scoliosis

My name is Dolores Gómez and I live in Barcelona. I have always had good health until the year 1992 I suffered a fall at my work place. This fall took me to be hospitalized ten days and six months on sick leave doing daily rehabilitation. As a result of my work incorporation and the daily routine, I started to notice that my health was deteriorating and I started to have pain in the cervical zone as well as losing strength in my right leg and arm. These symptoms got worse everyday and my quality of life was limited more everyday. One day I noticed a total Paralysis in my right leg and this led me to a hospitalization in Bellvitge in June 1995 with a nonspecific acute Myelitis diagnosis. I was hospitalized during ten days with tests to be able to find the origin of the Myelitis. The diagnosis of the Cervico-dorsal MRI was a Herniated disc in C6-C7, enlargement and sign alteration of the cervical medullar cord since C3 to C6 and a discal protusion in D8-D9.

The treatment, once being discharged from the hospital, was anti-inflammatories and specific medication for the Myelitis with monthly revisions. I was going to daily rehabilitation for the leg and a period of eight months in on sick leave from work. I recovered a little sensitivity and strength in my leg but the pain in my neck were more intense every time, with period of sick leave where the doctors prescribed me anodynes and anti imflamatories with rest and the use of a cervical neck brace.

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.