It has been two years and two months since my son (who is 24 years old) underwent the Sectioning of the filum terminale at the Institut Chiari de Barcelona. I would like to thank Dr. Fiallos for performing my son’s surgery, and Ms. Yuka Takahashi for mediating between the doctor and the patient. I’m also grateful to Dr. Royo for having established the method and to the entire ICSEB team. Thanks to you all, my son has recovered and been able to go back to work. I thank you with all my heart.
Since my son was born, I almost never took him to the doctor, just for some colds or flu. However, after a traffic accident at the age of 18, he began to have tingling in the upper left limb, general weakness, loss of strength in his hands and loss of thermal and pain sensitivity.
During a medical consultation, he was diagnosed with Idiopathic Syringomyelia. As time was passing on, the lower back pain got intense and he began to experience difficulty while walking. Then his doctor started to suspect a disc herniation, but he only prescribed analgesic treatment and periodical check-ups. Meanwhile my son was getting worse both physically and mentally.
I searched the internet for information on hospitals that could solve my son’s problem and I found the Institut Chiari de Barcelona’s website. In Japan, my son underwent a Syringostomy when he was 19 and his doctor told us that a reintervention may be performed if necessary. I know that the shunting of the syringomyelia cavitation is quite a risky surgery, but at that time I thought the nervous system would not recover if the symptoms kept getting worse. So we opted for that surgery. However, after undergoing another surgery like that in the cervical area, my son could end up in a wheelchair.
Looking for information about the Sectioning of the Filum Terminale (SFT), I was very surprised to find out how different two interventions (Syringostomy and Sectioning of the Filum Terminale) for the same condition could be in terms of: surgical area (Syringostomy is performed in the cervical region, while the SFT in the coccyx area), duration of hospitalisation (two weeks VS one night), invasiveness and risk of the surgery (ending up in a wheelchair VS hospital discharge the day after surgery and full mobility).
Since we decided to proceed with the Sectioning of the Filum Terminale, we began organizing in detail our journey to Barcelona: money, passports, flights, hotel, etc. I was worried about travelling with my sick son without any companion, but every time I had difficulty, I could ask Ms. Takahashi for help.
Since we live in Kansai Region (in Western Japan), we flew from Kansai International Airport and we arrived in Barcelona via Helsinki (Finland). As it was the first time we left the country, we chose the flight with the shortest route and Japanese cabin crew. The day before the trip we stayed in a hotel near the airport and we left the car there for a couple of weeks, so we could move with three suitcases without any problem. Before travelling, we rent a portable Wi-Fi to be able to use our mobile phone and we also look for a currency exchange office with lower commission.
Through a travel agency, we booked a room at Hotel Atenea, because it has rooms with a kitchen (we also asked for microwave and kettle for our room). We chose this hotel because we could go walking to the Institut Chiari de Barcelona, there is a shopping mall in front of it and a football stadium nearby. The hotel has Japanese staff that works some days of the week and left us a note in Japanese: “ I am at your disposal for anything you need”. While they were cleaning, we went for a walk and to the self-service laundry, walked around the football stadium or went sightseeing.

We were not worried at all about the communication in Japanese, because Ms. Takahashi mediated between the doctor and my son during the visits, the preoperative test and the surgery.
She came with us to the pharmacy to buy medicines and it was a great help. Furtehrmore, we had a Spanish/Japanese book with drawings of typical scenes with phrases that a tourist may need. We just had to point the words with the finger, they understood us and it was very useful. Also, we used a translator app.
The surgery’s cost was not covered by the public insurance, but the private insurance reimbursed part of the cost. We asked Ms. Takahashi to fill out the private insurance form and she gave it to us before we went back to Japan. My son, who had experienced discomfort for a long time, started to feel better after the surgery. Now he is more active and could go back to work. Thanks to all the Institut Chiari de Barcelona’s Team! Thank you so much!

Date of the surgery: October 2010

Hello to everyone. My name is Manolo and I live in Madrid. Before telling my story, I would like to thank Dr. Royo Salvador and his team, who considering my story and great suffering, was the only one who took interest in studying this disease. Thanks to his technique of the section of the filium terminale, which other doctors do not know of and who get offended when you talk about it, I am able to give this testimony. If not, it would be completely impossible.

Well, I don´t want to be tedious with my story, I would like it to be of help knowing that the symptoms can vary in each patient, but the majority are pretty much the same.

In my case, like in many others, I noticed strange symptoms all my life that I compared with others who didn´t have them. I was tired at times without any reason, had sudden mood swings, lapses of memory at specific moments, sweating, lack of concentration, I couldn´t remain in the same position for a long time, general pain – more on the left side, having to raise my left shoulder, incontinence, memory problems for learning, tingling in my feet and hands, blurred vision with certain movements, a floating sensation, etc.

Time went by and all of this increased to the point that in the year 1999, I had to see a specialist. They did x-rays, physical therapy, all kinds of treatments, but none of this did any good. They told me that it could be psychological or from my job (public transport driver) and they wanted to give me a medical leave but I didn´t want to because I knew it wasn´t psychological, that there was a reason. Stopping work would not be favorable for me as it helped me to carry on. Later on, the disease forced me to stop working because of the condition I was in. That is when I had my first MRI and they detected syringomyelia in C7 and they operated on me in July of 2003 with the traditional method (opening of the cavity by posterior myelotomy). This involved a long recuperation and without success, my condition remained the same. I also want to point out that during the surgery they did not see atrophic medulla or Arnold Chiari Type I or in the MRI´s either (maybe this needed 10 years more).

Afterwards they sent me to the pain unit, giving me all kinds of analgesics, including MST (morphine) during 5 years, all kinds of tests, electromyograms, evoked potentials, an infinity of MRI´s, some of them with contrast and various in private clinics here in Madrid, physical therapy, etc. and my condition was the same. They told me that I had to get used to living with it because the disease was incurable. I saw neurologists, neurosurgeons, one of them in the Institute of Neurological Sciences in Madrid (I´m not going to mention what he said to me because it bothered me quite a lot). I continued looking all over for information and I found Dr. Royo Salvador (who really was my savior as his last name “Salvador” indicates) on the web, with all the testimonies and I couldn´t believe that it was true what the people operated on by him were saying. I got in contact with his patients and they told me that the results were excellent.

Later I had an appointment with him and he told me that I needed surgery as soon as possible because time was against me and that the cells that die do not regenerate.

But before going to Barcelona to have surgery, I explained this technique to my specialists and they told me in two occasions that it couldn´t be done and that´s why I had this disease. I went crazy. On the 14th of October 2010, I was operated on in the Cima Clinic by Dr. Royo and Dr. Fialios along with their team (all excellent in their treatment) with spectacular results, as my condition was so horrible that I couldn´t eat, had a lot of pain swallowing, pain in the jaw, strong pain in the eyes, blurry vision, very painful headaches, the left side of my body numb, short of breath, suffocation, incontinence, tingling in the hands and feet, loss of memory, claustrophobia, I needed more space from all the pressure I was feeling, etc. With all these symptoms, before going to Barcelona, I went to the emergency room many times and they didn´t know what to do with me and they sent me home, and all this at a prestigious hospital in Madrid.

Eight hours after putting myself in Dr. Royo´s hands I recovered the feeling I had lost, my eyes didn´t hurt me so much, and many of my problems had lessened. I left the hospital the next day and on the way to Madrid in the Ave with my wife, I almost recovered my sight. Curious and unforgettable, I don´t know which went faster, the Ave or the recuperation of my sight.

In conclusion, the last symptoms that had appeared have almost disappeared completely, I still have the ones from before that with the time that went by, have left me with long-term effects, but still I am very happy.

I would like to say to the doctors in general, that this disease is not investigated, that at least they should take note of all the symptoms that we tell them about as many of them think we invent them. They should at least listen to us and gather information. I would give all of them a zero and penalize them. And also, that those physicians who to not support this technique and who are against it, contribute to our pain and suffering.

I give all of my encouragement to those affected, family and friends in general who also suffer in a different way, and if you can, get in touch with Dr. Royo Salvador and he will decide. Don´t lose much time because the disease doesn´t detain its progress.

I say to those concerned that they explain why there are so many things that are vetoed and manipulated associations. Are we interested that it be that way? And why don´t they take charge of the costs, as they don´t carry it out? This is my own personal opinion.

Don´t hesitate to ask me if you have any doubts. It is very useful for us to communicate among us. And to Dr. Royo, Dr. Fiallos and their whole team, thank you for the job you´ve done and to the rest of you, courage and luck.

My email is: [email protected] My telephone: +34 649750454