Published by ICSEB at 18 October, 2011
Date of intervention: July 2010
My name is Roberto, I am 44 years old and I live near Milan. One year after the sectioning of the filum terminale procedure, I want to summarize my personal experience.
My life was totally normal up to the age of 43, fortunately without suffering, without any important disorders. On the contrary, I can confirm that, seen from a sports viewpoint, my life was “outstanding” until the age of 38, since I practiced different sports on competition level from young age, amongst them ski, tennis, running, and, in the last 15 years, a lot of windsurfing. After the birth of my two children within a short time, I became more sedentary.
The good state of my health that had always accompanied me, changed unfortunately in 2010. Before, during the winter, I occasionally noticed (maybe 3 or 4 times in a couple of months) slight electric discharges in the left forearm caused by coughing attacks (the classical sensation of hitting your elbow against an edge). Later, one day, I noticed a discharge of something like burning in the same arm, which left my hand numb. This worried me (together with the discharges I already had) and I explained it to my GP who prescribed me a cervical MRI that showed signs of cervical arthrosis. I consulted an orthopaedist who suggested starting practicing sports again, recommending swimming and gymnasia. I started slowly with the swimming pool, however, the symptoms did not improve, on the contrary, afterwards dysesthesias appeared (in the same arm) and, in the beginning of May 2010, also pains in the arm when coughing, and finally a tinnitus. That is when I understood that something bad was happening to me and I went back to the GP in a psychologically tense state (I was stressed and it seemed to me like I had lost control over my life). The physician tried to play the matter down, but luckily he also suspected a cervical hernia and also prescribed a cervical MRI.
The results unfortunately showed a clinical picture compatible with the Chiari Malformation, a small syringomyelic cyst (C7 -D2), a discopathy and a slight cervical scoliosis (in spite of all the sport I practiced in my life!), and invited to extend the check up to the whole column.
I was destroyed: on June 15th 2010 my world crumbled.
I started to inform myself on the Internet and within a few days I found a lot about these pathologies defined as “rare”: associations, specialized centres, surgery techniques, blogs, scientific diatribes and even “religious wars”, and of course also the hardly invasive techniques provided by the Institut Chiari de Barcelona. I was confused! I immediately made a first appointment with a neurosurgeon, resident in my hometown. He concluded, after looking at the MRI results and asking some questions (without examining me) that I was probably asymptomatic since I had not suffered from headaches, dizziness, swallowing difficulties, etc. I immediately booked a complete MRI and an appointment with a renowned neurosurgeon who is specialized in this kind of pathologies. At the same time I also contacted with some patients who had been operated in Barcelona (many thanks to Cristina, Rita and Dr. Crocè) who tried to reassure me, with a known Italian association and finally I called the Institut Chiari itself where I immediately made an appointment for July (even though I did not really have the intention to have the surgery, since the discomfort was only mild).
I arrived in Barcelona (still confused) with the following symptomatic picture: bothering sensations in the left arm (paresthesias), a tinnitus in the left ear and a “strange” sensation of tiredness, mental and sometimes physical. Dr. Royo pointed out, after an attentive examination, that additionally to these symptoms I also had alterations of some reflexes, a diverted uvula and a decrease of power in the arm, he advised to have the surgery in order to avoid a deterioration of the symptomatology and to stop the progress of the pathology. The following tests (complete MRI and x-ray of the column and skull) luckily did not show anything further than had already been seen on the first cervical MRI (with the exception of a lumbar discopathy that I had alreay known about for twenty years).
The next day, I took the decision (I was very anxious considering the short time in which everything had developed) to undergo the procedure of the sectioning of the filum terminale; with the support of my family, I am deeply grateful to them.
I had surgery on the 15th of July 2010; it went well and I returned to Milan. Dr. Royo really showed that he is at the height of the excellent comments that I had read in different testimonies, due to his humanity as well as his personality. I have to thank him, the psychologist Gioia Luè and the whole team very much.
After the procedure, my general clinical reflex picture improved immediately, and the uvula was once again centred. I personally was in a better mood. In September I went back to Barcelona for the control visit, and an increase in force as well as a general improvement stood out. But personally I still had some bothers in the arm and the tinnitus, even though I noticed some changes in comparison to before the surgery.
In the following months I started to exercise, choosing swimming. After a few months I went through a difficult period from a psychological point of view (which by the way I advised about as a possible post-surgical effect).
After six months I started to experience some improvements: the paresthesias and the tinnitus decreased in intensity, and furthermore I could carry out physical activity (swimming) more effectively. I started to train regularly as one should, increasing the effort progressively, I felt better and better every time.
Now one year has gone by: I had a first control MRI done, which shows a decrease of the syringomyelic cavity; the clinical picture improved even more and I regained a sports life style. In the second control visit in Barcelona, Dr. Royo found and showed other improvements, amongst them the cervical scoliosis.
In conclusion, I am very satisfied with sudden decision I took and I recommend to everyone who is affected by these pathologies to go to at least an appointment in Barcelona, in order to come to a decision afterwards.
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