Published by ICSEB at 4 September, 2017
I want to share an article with you that I wrote in 2010 where I describe my difficult journey trying to find a physician who would heal me. Back then I did not know if what was being offered in Spain was the truth or not, so to get real information, I decided to make my story public online.
I am the third patient from China who went to the Institut Chiari de Barcelona. On eof the first Chinese patients called me and said to me: “Wang, your story really moved me and I wanted to assure that it is not an Urban Legend, it’s true! I just came back from Barcelona and the surgery that they recommend WORKS!” She told me everything about her experience and how she got to the ICSEB.
I decided to share my story so that people do not choose the wrong path. The treatment in Spain is the wisest and most correct option. If I could have done the sectioning of the filum terminale 20 years ago, I would not have had to go through all of this painful experience.
I am very happy today. Even though I still have trouble walking and sometimes with a cough with vomiting, I am much better than before. The most important thing is that our disease has stopped and was really our ultimate goal.
Barcelona is a very nice city and even though I rested in the hotel for the first days after the SFT because the wound was a little tender, on the third day I was already out doing sightseeing with my husband, eating seafood, going shopping, etc.
My Email: [email protected]
———— My story published on the Internet in 2010———–
“A bitter journey”
I am Nieves Wang, I am 49 years old and as most people, I have a happy family: a wonderful daughter and husband. Nevertheless, my life is not as great as it seems, because I have rare disease (Arnold-Chiari Syndrome I) and I live everyday with stress, pain and panic because of it.
I realized more than 20 years ago that I walked in a manner that was not coordinated and, sometimes, I would stumble into doorframes. I was very busy with work, the family and my daughter back then. I didn’t pay much attention to these small problems until I started falling when bicycling, I needed to really focus to be able to hold my balance, I had to stop wearing high heels and was not able to look after my daughter anymore. It was 1991, and together with my husband we set out on a long search for a doctor who could help me.
The doctors that I saw said very different things: some said that I had rheumatism of cerebral atrophy and again others said that I had cerebrovascular problems. I saw many doctors, as much from occidental as from oriental medicine: I tried acupuncture, the electric treatments and I even went to see a sorcerer; but nothing improved my illness and my problems continued to increase.
Until one day, a doctor told me that I was suffering form a rare disease that could not be healed with any medication, but with a surgical procedure that brings many risks with it and does not stop the disease. So his recommendation was to follow conservative treatments.
Time went by the year 2000 came. During that period I already had a number of symptoms like: lack of balance when walking, lack of stability standing up, cough and vomiting, headache, insomnia, etc. On 19 October of that same year I reluctantly accepted the suboccipital craniectomy and I will never forget the pain I was in. The surgery lasted five hours and I had 14 stitches in the head. I had fever for a month following the surgery.
My husband and my sister took turns in looking after me at the hospital. My husband slept sitting next to my stretcher for 36 days. I was very emotional and thankful but my eyes filled up with tears when I saw him so tired and worried.
I had some improvements after the surgery, but with time my disease continued to get worse. When I left the house, people used to say to me: “But what is wrong with you? Drunk already in the morning? You will suffer a brain stroke if you drink so much” Do you see what people are like? I don’t know if laugh or cry about their comments and mocking looks. I was jealous of the healthy people who walked well and dreamt of wearing the beautiful high heel shoes I saw in the shopping malls.
In 2006, after saying good by to my daughter who was leaving for university, my husband accompanied me once more to Bejing to see a “specialist”. Upon seeing me he asked me: “What have you come here for if you already had surgery? This disease cannot be cured” and he finished the consultation with these cold words. I was so hurt that I started to cry. I told myself: “Yes, it’s true, I can’t put myself through more surgeries, I’d prefer to die before going through another craniectomy!” Back then I was was not walking in a coordinated way, I lacked stability when I was standing, I had a cough and had to throw up badly, I had difficulties to swallow and insomnia. Despite it all, I never gave in. I started to look up information about my condition. I was looking to find a miracle every day, an advancement in medicine. I knew that the progression of the disease would lead to sphincter incontinence and paralysis; there are even cases of death due to the pain….would that be my future?
In 2010, the follow up MRI reports showed that there was a descent of the cerebellar tonsils of 3.00 mm. By chance, I found an institute that is specialized in this illness and say that they can stop the progression of the disease. They offer a procedure with a minimally invasive technique that takes 45 minutes only. It was not painful and you were discharged from hospital on the day after the surgery. I was really excited about the news for days! I couldn’t believe it, was it a legend or a dream?? I am hoping to have calm and happy life, and not a bitter journey.
10 May 2010.
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