Reports and Experiences
of people with Arachnoiditis and Tarlov Cysts
During the past year we have accompanied many people in their ordeal and have tried our best to help them to a new quality of life. We want to introduce you to some of these people here.
Are you affected yourself and would like to share your experiences with others? You are more than invited to share your personal story – just send us a note.
Tone from Norway
Since her operation at the Paracelsus Hospital Zwickau, for the first time in years Tone is not having any pain. She can now actively participate in life, pursue her sports activities and take care of and enjoy her grandchildren.
Angelika from Germany
My name is Angelika and I have been sick since 1990, as of 1993 I have been on disability. As long as I can remember I have back pain. When I was 13, a scoliosis was diagnosed, and I started physical therapy. In 1991 I was admitted to the University Hospital Kiel due to weakness in my right leg and heavy dizziness, suspecting MS. There Myelography followed by MRI and CT was performed and the following diagnosis was made: Conus fixation syndrome with arachnoid adhesions and a diastematomyelia.
I had surgery, at the time with a laminectomy. The Filum Terminale and other adhesions were loosened as much as possible. The first few weeks after the surgery I was doing just fine, I hardly had any pain, I was able to move, and I was full of hope. But very soon the problems came back. The examination (MRT) showed that the situation was just the same as before the surgery. The ones who did not believe that were the doctors. They blamed everything was in my ‘head’, suggesting I go to see a psychologist. Finally, in 1993 the doctors performed an examination of the nerve conductivity which did not turn out well.
Thus, it was commonly decided to do surgery again….! This as well lead to an improvement, but, quicker than the first time, the problems came back. The MRI showed a renewed fixation. The doctors declared that they could do nothing more for me.
Now I started an odyssey through the health care/esoteric system. I went to healers, naturopaths, naturopathic doctors….! Some were honest and immediately told me that unfortunately you could not help me, others only took my money to admit failure after unsuccessful applications. I kept getting worse and worse, the walking distances became shorter, there were dizziness, cramps, electrical sensations, trembling, walking insecurity, extreme fatigue, strong tingling in the legs, heaviness of the thighs, morning headaches, nausea. I fell often and have excruciating pain.
My doctors only said: the symptoms cannot explain the cause. “Accept finally that you are sick and get help from a psychologist!’
I started to scour the Internet and accidentally tripped upon Prof. Dr. med. habil. Jan-Peter Warnke. When I read through the symptoms of Arachnoiditis all sounded very familiar to me. I wrote a letter to Prof. Warnke and told him my story, then sent him my history (pictures and reports) and was invited to a visit. Prof. Warnke took his time, listened to me with seriousness and answered my questions. This was the first time in ages that I felt taken seriously and that felt so good!
He explained that due to my many yeas of illness and many surgeries, it would be difficult to help me. However, together with his multimodal team, they have come to the conclusion that they would be willing to do surgery if I wanted to.
Based on the medical history an Arachnoiditis was diagnosed. In September 2018 a minimally invasive surgery was performed. The fist week after the surgery I was doing great. I hardly had any pain, was able to walk better.
Then I was released from the hospital and took a 7-hour train ride home. Since returning, things have turned to worse. I have heavy pain again, fall often, have this heaviness in the legs. It feels as if they would soon start to disfunction.
Prof. Warned explained that a lot can happen in the first year after the surgery. I have full confidence in him and am waiting this year. In half a year I will report how things have developed. It would be nice if others would be willing to tell their story and to exchange our experiences, complaints, positive changes with each other.
Angelika from Germany, April 2019