María. Thoracic syringomyelia and idiopathic scoliosis. Cord Traction Syndrome.

Published by ICSEB at 25 October, 2012

Surgery date: June 2011

It all began in 2008, when I was only 18 years old. I started to have strange pains, vertigo, loss of balance, muscle spasms, weakness of the limbs, and I’m probably not remembering all of it. Without understanding what was happening to me, I quickly approached a doctor. He immediately thought that the cause must be the stress related to the exams, but I was convinced that that wasn’t the case, so he had me do a brain scan, which in the end wasn’t conclusive o anything. Hardly being able to walk (due to those symptoms) I decided to consult various doctors before finding out what I was suffering from

In one year, I saw:

–     My GP numerous times

–     An otolaryngologist (in order to check whether the vertigo could be caused by the inner ear)

–     A podiatrist (they thought that difficulties for walking were caused by my feet)

–     Physiotherapy sessions (for my back, because I felt that also there something wasn’t right)

–     A cardiologist

–     A phlebologist (they thought the problem might be related to the blood circulation)

At sight of none of this resulting in anything (and I have only mentioned the specialists I went to see, but not all the medical tests that I ended up doing), my GP decided to prescribe a MRI of the spinal cord (it was one of the last exams left that I hadn’t done yet). I would like to point out that I was not able to go about my daily life, and apart from the difficulties to get around, I would get dizzy even when I was seated, it was unbearable. Lying down I didn’t feel well either; the only time when I would feel calm was when I was asleep. All other time had really turned into complete hell.

I then had the MRI of the spinal cord, thinking that once again it would be useless. I was surprised and panicked when I read that I had a “syringomyelic cyst in Th8 and Th10”. After looking up on the Internet what this meant, I thought that my life would stop. On different websites there were explanations that the state of health would be deteriorating and that there was a big probability that I would end up in a wheelchair, or would even end up in a vegetating state.

I rushed to see my GP who was unaware of the disease. Well, he had heard of the name but never met a patient with this pathology. He then confirmed that it was a rare and serious disease and that a neurologist would be the most indicated person to answer my questions.

So I went to see a neurologist who told me: “it’s nothing, it’s just a small cavity holding water, nothing more, you’re not suffering from anything”. That seemed strange to me, given my symptoms and everything that I had understood regarding this disease.

Feeling bitter and ill, I started to read Internet forums. They were talking about a surgery that was being performed in France, but that was dangerous and often there were patients that would end up in a worse state.

There was no way that I was going to have this surgery, and then I discovered Doctor Royo’s website and I read all the testimonials a number of times. I got in touch with those who had had the surgery to make sure that it was all true and it seemed phenomenal to me. Without having the funds and still suffering badly, I went to see an important neurosurgeon at the reference centre for this disease, Kremlin Bicetre. He explained that he would not operate in my current state (with the French method), he would do so only if I was in a wheelchair and that Dr. Royo was a “charlatan”. I left there angry, not knowing what to do, given my state was deteriorating day by day, I was hardly able to carry out any chores at all. This professor was the last French doctor I saw in relation to syringomyelia. Having heard only positive things regarding the surgery in Barcelona, I took the decision to have surgery there. Actually, I would like to thank Estelle and all the people who took their time to answer my questions.

I then contacted the Institut by email, and they asked me to come for an appointment with my exams in order to see whether my case was operable or not. I struggled to be able to travel over there, using all the strength that I had left. This was in February 2010. This Institut and the filum terminale surgery were my only chance. I put all my hopes into it.

Dr. Royo then told me the good news that my case was operable, hoping that not all the cells would be dead. So I started to save up from my small student wage. I kept on talking with operated patients, I spent my days reading the testimonials on Dr. Royo’s website preferring to so forget the French patients, whom I saw talking about their daily deterioration in the forums. The following months I had a bit of a break regarding the symptoms, but with days were I could hardly move around. On other days I can say that it didn’t go that badly, it was very random, so nevertheless action was required quickly.

With my own finances and the help of my family, I was able to have surgery on 27 June 2011, one year and four months ago. The surgery went very well, the clinic is very modern, much more than French hospitals and clinics, the team was very professional and warm, which is something that is very important for the patients.  Unlike the majority of other patients I didn’t feel anything spectacular right after the surgery. The symptoms were well present. So I had to gather patience, speak to people who were in the same situation and one month later, after the control examination, they informed me that I had recovered reflexes and that I had recovered 10 kilos of strength in the hands (I had 18kg previous to the surgery and one month after I had 28kg, which is something phenomenal). Regarding the vertigos things were random, I raised many questions and had doubts for quite some time, but luckily everybody was around to remind me of the fact that my spinal cord had been compressed for a long time (with three years of symptoms) and that it would require time for everything to readjust. Today I can confirm this; I have hardly any symptoms now. I have recovered 90% of my abilities and I can lead a completely normal life, something that I thought to be impossible.  I am thrilled with the surgery and would like to thank the entire team for their kindness and professionalism and all the people who have been by my side during this difficult trial.

I leave my contact details in case you have questions:

[email protected]