Published by ICSEB at 11 January, 2018
My name is Dayse, I am 34 years old and have had on and off pain since I was 28 years old, the cause of which was not discovered.
These pains intensified in July 2014 and I had to go to the emergency room because they were really bad. I was diagnosed with lumbago, depression and fibromyalgia. I followed the suggested treatments and prescriptions according to the medical advise, but nothing soothed my aches.
On the occasion of a strong crisis, I went to hospital and explained to the physician on call that I could not take it anymore to have such strong pain and having to take medication without feeling improvements. She requested a MRI scan of my spine (of the lumbosacral region) and referred my to an orthopedist with the result.
The orthopedist told me after assessing the scan that he had detected an alteration; but he did not explain it. He also told me that I would have to consult a spine specialist. When I got home, I started to research the term “syringomyelia” on the Internet and all the results said that it was “rare and degenerative condition of the spinal cord, without cure, that over time could condition the patient to the use of a wheelchair”. That was when I realized that I had “bomb” on my hands. I found the website of the Instituto Chiari & Siringomielia & Escoliosis de Barcelona already in the first Internet search, but…as it said exactly the opposite of what I had read before, I had not paid much attention to the information.
After finding out more information about the disease, I got to know Facebook support groups made up by patients and I quickly understood that this condition was not so rare, because the groups had many members. I contacted with some persons who had undergone surgery in Barcelona in the first group, and their experiences were best, and very different to those of many patients who had been operated with the conventional method in Brazil.
I sent my medical reports to the Institute and they in turn sent me a certificate that informed me that I had the Neuro-Cranio-Vertebral Syndrome as, other than the Syringomyelia, I had the Arnold-Chiari Syndrome Type I. They also sent me a quote with the costs for the procedure.
In April 2016 I decided to start a campaign to obtain the necessary funds. The campaign went on for about a year and on 21 March 2017 the longed for Sectioning of the Filum Terminale surgery became reality. Significant changes were already observed eight hours after the procedure, such as the recovery of strength in my arms and legs. After ten days, during the post-surgical check up appointment, other improvements were detected. The one that most caught my attention was the decrease of the hyperreflexia in three regions of my right arm (where I already had a motor loss). My reflexes had simply leveled; an improvement that could only be verified a year after the surgery, as I was informed.
The main improvement has been the disappearance of the constant pain that I was experiencing in the nape, head, cervical, right shoulder and lumbar areas, which has contributed to an improved quality of life. I was operated three months ago and I have not taken any more antidepressants (that had been prescribed because I was told that the pain was psychological…).
The physicians at the institute try to stop the progression of the condition with the surgery, but, furthermore, I beat it, and I can say that this was the best-spent money of all my life.
I am grateful to God and everyone who helped to achieve my dream. I hope that with my testimonial and those of other patients, we will be able to catch the attention of our physicians so that more patients will be able to benefit from this method.
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