Sabine Bergmann. Idiopathic Scoliosis, idiopathic Syringomyelia, Odontoid process, Basilar Impression and myelopathy

Published by ICSEB at 22 November, 2012

Surgery date: September 2012

Hello from Berlin, my name is Sabine Bergmann and I am 50 years young.

I have scoliosis (ca. 30º) since my childhood. It was treated intensively with physiotherapy since I was 12 years old until the end of the period of growth. After that they said: always practice some sports and in „further on in life“ you will be getting some problems.

I suffered a bad fall on the coccyx in my early twenties (I have pain until today) and a serious whiplash in 1994. From that moment on I constantly had to deal with vertigo, nausea, sight disorder, headaches and muscle tensions. I´m not even able to use reading glasses, because these troubles increase with them.

Due to the scoliosis I had since 1999 also increasingly problems in the lower back with irradiation into the legs and harming the bladder function. CT-guided infiltrations, countless medicines, intensive rehab followed one after the other, up to the suggestion to operate the scoliosis, this didn´t convince me already back then.

All these problems increased notably over the last years. And my quality of life was decreasing. Not even minor exercises to strengthen the muscles were possible, because the cervical, thoracic and lumbar spine would constantly influence each other. Hiking and bike-tours bring about extreme problems afterwards. Even a visit to the cinema could cause my cervical spine to „log out“. The normal burdens of daily life started to become a problem. My autonomic nervous system was a total mess. On top of the problems with the cervical spine during the daytime and with normal strains, I had often pain and cramps in legs and feet, the thoracic spine and ribs would often drive me crazy at night. Yoga would sometimes help a little, primarily mentally. Osteopaths brought successfully relief regularly for years (ca. every three weeks, and additionally in acute situations). But after a short while/or a bad movement everything would return to being just as bad as before.

Despite these really good treatments I increasingly suffered at night additionally from circulation problems, tachycardia and tinnitus. Often I´d sleep for just two to three hours, and never in a row. If I turned over, I had a relief for one thing, but instead something else would start hurting, cause problems. I tried countless cushions. In the mornings I was always just absolutely exhausted and wondered how I was supposed to get trough the day, work and daily life and increasingly my body would be on strike completely. Today I wonder how I managed to withstand it all.

I always had the feeling that some kind inner force was working against me, it pulled everything crooked and together!

New reports regarding the cervical and thoracic spine certified several herniated discs with myelopathy, odontoid process with basilar impression and an arteria vertebralis syndrome.

In June 2012 I was searching once again desperately on the Internet and found this website here. I was, and still am, impressed with the idea that a cord traction syndrome (caused by an overly thick and tense filum terminale) is the cause for my scoliosis, and its consequences, as is the fact that the consequences from the whiplash would still not have improved after 18 years and that the professionals of my city were able to help me always only temporarily.

I immediately sent an email to Barcelona an received the reply from lovely Mrs. Kühn in German. Then everything happend very quickly and I was operated on 27 September 2012 by Dr. Royo and Dr. Saavedra. The decision to fly to Barcelona and have the surgery was an easy one to take. Already at distance I had a certain feeling that I was doing the right thing. For preoperatory testing on location, one day before the scheduled surgery, I was internally totally calm. Without doubts and enthusiastic with the team and their expertise. I never before felt that I had been examined so well and thouroughly.

The surgery went well and already flew back home the day after. Immediately after surgery I had the feeling that my cervical vertebras were better „put“. Four hours after surgery they checked the same reflexes as before the procedure. The results were sensational, for examplethe strength in the hands had increased after these few hours by four kilos on each side.

When I walk up after the first night following surgery, I was so happy I shed some tears, – I had slept wonderfully for the first time in years.

Now, seven weeks after surgery, I look cheerfully into the future. The world is great when you´ve selpt properly. Only rarely do I get the tinnitus or circulation problems at night, and when they do appear then in a much less intense form. Since the surgery, I haven´t had anymore cramps in feet and legs, vertigos and nausea only rarely. Back and leg aches flare up once in a while just for a minute – then everything is gone again!! Before, all these problems were my constant companions! My osteopath says I am more and more straight and can see an obvious positive changes after such a short while.

Currently I am struggling for reimbursement from the public health insurance company. The price of the surgery is a bargain for everything that I have gained. It is a shame that the burocracy and friends of the German health system are blocking a reimbursement until now, event though the success is visible and measurable, the sectioning of the filum terminale would help many scoliosis, Arnold Chiari and Syringomyelia patients in the best possible way and would so avoid/minimise furhter treatment costs up to early retirement. But I keep on struggleling together with the international patient association AI.SAC.SI.SCO (International Patient Association – Arnold Chiari Syndrome – Syringomyelia – Scoliosis Filum Tomizzati onlus).

A thousand thanks to the team at Instituts Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) – I am a once again a happy person- I could hug the whole world, that´s how happy I am!!!

Sabine Bergmann ([email protected]) , November 2012