Elvina Evseeva. Idiopathic Syringomyelia. Medullary Traction syndrome.

Published by ICSEB at 17 February, 2011

Date of the surgery: January 2010.

My health problems began when I was 7 years old, in November 2003. After a cesarean I lost 17 kilograms in just one day. At first, I was happy to leave the hospital looking thinner but when I started to walk, I noticed my body balancing towards the right side. I thought this was due to a side effect from the anesthesia, so I didn´t thing it was important. I hoped it would be a temporary thing and that I would recover myself from it little by little. I did not have time to pay attention to such a “triviality”. I started to feel very tired, but I thought this happened to all mothers with small kids. This tiredness was not natural. When I rested laying down, I didn´t have the impression of being on a mattress but to have a heavy mattress being on top of me, a sensation of heaviness and being crushed. Time went by. After some time I started to have colored vibrations in the eyes that moved incessantly. This repeated itself almost every day, sometimes a various times a day. These moments lasted for 15-17 minutes (I wrote it down). During these moments I almost could not see, so I just sat down and waited until it stopped. The ophthalmologist did not see anything wrong. A little a more than a year went by and I felt like pins and needles in the fourth toe just like if it fell asleep. I started to rub it, massage it but this sensation did not go away. With time this spread to the whole leg surface- from the toe to the knee and upward. The sensitivity was okay but as if it was through a dense fabric. The toe´s skin literally started to get dry and fall off. No cream helped at all. My legs got really thin and became a grayish color like and they were always cold. Later on started the strong and very painful cramps. Later on I felt burning in my bones. Strong vertigo appeared, not very ordinary ones, since they were followed with strange swaying. When I walked, I could not walk in general since I could not coordinate my right leg, so at home I moved from one place to the other by leaning on the walls. My legs were heavy as pillars.

The visit with the neurologist did not give anything. It is quite unpleasant to remember those moments. The doctor listened to me, checked my flexes, touching my nose with my finger, she pinched me, she scratched me with different sharp objects, she asked my age, my sons age and gave me “good advice”: “not to take everything so seriously, pay less attention and to not bother her for nothing”. I came out of there in a state of shock. In the aisle I started crying. After some time went by, I went with another more experienced neurologist, as she seemed then. She listened to all my problems, she did not check anything, only wrote down “EM” in my history. She prescribed me Milgamma and that´s it. Time was going by. Then, a terrible weakness added itself to my list of problems, which caused me nausea, almost every morning. I was getting worse every time. There was only one thing left to do- to take control of my proper health. I went to the Diagnosis Center of Samara, here in my city. With all evidence and all my exams, the specialists did not see anything. According to them, everything was in order, since the exam results were perfect. When I asked them to give me an MRI request, they told me directly “why do you consider yourself more intelligent than us the doctors?” “We know best what type of exams you need to have.” And every one of these exams was quite expensive and had to be paid. Afterwards I noticed I had really bad vision in my right eye. With both of them I could see quite all right (permutability) and that is why I noticed it right away. When I laid down on my right side, in my right ear I noticed a constant buzzing, so strong that it seemed as if I put my ear against a transformer box. That is why I could not sleep well and thought it was very uncomfortable to be laying down. I had back pain, neck pain, in my arms, legs and sometimes had a hard time in breathing. In the kitchen I could only wash 2 or 3 dishes because I lost strength and had trouble lifting up my arms and shoulders. I started to fall down quite often. My legs started to fail and I fell on the flour. The hardest thing was to answer to my little son´s questions: “mom, why did you fall on the flour?” So I sat him on the floor next to me, laughed and said to him that mom was very clumsy like a cow and that is why I fell down. The words “clumsy” and “cow” sounded fun to him, so he laughed and carried on playing. So I got up somehow, went to the couch and fell on it and fell asleep. It got harder and harder to hide my condition from him. Then it only went to worse. My body started release a strange smell; it reminded me of meat turning bad. I lost so much hair that I was afraid to comb myself. Afterwards, I had trouble swallowing, I stopped sitting down at the table with my family because I often chocked. Eating was becoming a real torture. After chewing the food and swallowing it, I did not know what would happen next. Reaching my throat, the food stopped moving and I had to wait until the muscle in my throat worked or if not, I had to get in time to start coughing to get the food out, or choked and spent a while coughing to relief my respiratory system. In all this time my right kidney descended about 8 cm, so I always felt how it pulled and sometimes started convulsing. During that time, my lumbar region, my back and shoulders were in constant pain. My whole body was rigid. With a bit of effort I could lift up my right foot only 3 or 4 cm from the floor and no longer than a few seconds. When I had to go up some stairs, I lifted my right leg with my hand by the pants. When I was sitting on the sofa, I could not feel my leg position, if they were bent, together or straight unless I looked at them.

In six and a half years, nonce of the doctors of which I visited took my case seriously. In summer of 2009, I went to the Kuvatova clinic. On the following day they let me have an MRI done by my personal request without any previous guideline. They took images of my lumbar region, since all my problems seemed to come from my lower body. Then, the middle part of my body and afterwards the higher vertebral column region. That is when they announced my diagnosis: Syringomyelia. They told me there wasn´t any treatment and that my quality of life would get worse. So, ” hold on and don´t loose encouragement”. My husband spent half a year “living” on Internet, always searching, looking for any information until finally found it. At first we could not believe it but precisely could not believe what we had found. The “Chiari” clinic in Barcelona. We red all the references and operated patient´s letters. We were already completely sure that this intervention would be the only way out to this horrible disease. I went through surgery on January 26th of 2010. It went very well, since right after the anesthesia I woke up feeling very light. I felt my body was completely healthy, new. Most of the symptoms disappeared right away. The energy impulse I had was of such magnitude and indescribable strength that I simply could not believe it. I was full of energy. My vision in my right eye restored itself in less than a week. The buzzing in my ear disappeared right after the surgery. I did not have vertigo anymore. I did not have any more colored vibrations. I could coordinate my walking right away after getting up. I could lift up my feet in a way that only a healthy person could. And the most important- a lot of strength appeared in my legs, despite the atrophied muscles. My skin color immediately turned to be normal, my hair stopped falling (I noticed it the day of the clinic discharge). My back, lumbar region and the rest of it did not hurt anymore. So, it was difficult for myself to believe in these changes. Before the intervention I would be walking having to rest every 3-4 minutes, but immediately after the surgery, I spent ten and a half hours walking with my husband all over Barcelona having stopped only twice in a cafeteria to eat something.

Guess, which of both of us ate standing up and did not choke once? I wrote my story now, after a year, because even now it has been very hard for me to remember what was happening to me since the year 2003 until 2009. I want to address myself to all the people who have this terrible diagnosic. Do not consent different questionable procedures, which can lead out to irreversible consequences. Do everything you can to see Dr. Royo. WITH A LOTS OF LOVE, I WANT TO THANK THE DOCTORS WHO HAVE GIVEN ME BACK GOOD HEALTH AND A COMPLETE LIFE.

My phone number is: (+7846)3345826
E-mail: [email protected]
Skype: rusianen