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
Mara – Suicidal Thoughts, Hope and Zest for Live
What happened? I fell on roller blades which resulted in three ruptured tendons in the shoulder, a bruise on the hip, a hospital stay, and lying in bed for several days. I can’t stand lying around, I need to move.
I was very active before the accident: rock climbing, mountaineering, going to the gym 4 times a week, going on trips with the Alpine Association, and, of course, traveling to Corsica. That picturesque island, the sea, the beach, bathing, swimming, and diving, hiking to the Lac de Melo, climbing on top of the Col de Bavella, having dinner and a glass of wine in the evening.
All of that changed to lying in bed and having surgery. Will I be able to get my old life back or was that it? Yes, I know, who can answer that question but me? I need the doctors, without them I’m nothing. I’ve seen a lot in my job as an intensive care nurse, and I’ve learned to handle psychological stress. I will rebuild myself!
My euphoria about rebuilding myself wore off with each passing day, while the list of my sufferings kept getting longer and longer. The years went by and my health didn’t improve: surgery for colon cancer, followed by a hysterectomy.
I wasn’t able to pursue my usual hobbies more than the bare minimum. For me, there wasn’t any alternative to exercising and leading an active lifestyle, and I found it very hard barely being able to walk the stairs. I, passionate about climbing, going to the gym, and hiking, was a physical wreck. My social life suffered, and I had to deal with being alone on top of everything else. Lying in bed, having fearful thoughts about the future, and supress happy memories – that sucks for your mental health.
I lost my zest for live and I couldn’t and didn’t want to continue living with all that pain and without my sport. I thought about ending my life.
But I didn’t give up on myself entirely. After getting qualified for disability, I took on a job and worked three times a week. I wanted and needed to do something, and working was good for me because it meant being around other people. I found new hope that maybe I would be able to get back parts of my old life, life before the diseases, after all.
After four years, in November 2017, I went to see a neurologist and underwent a thorough examination. He took my medical history and diagnosed cysts. Finally, a result, a diagnosis, and also hope. However, after some research we found out that I had Tarlov Cysts, a rare disease.
Will my hope be crushed? Who treats and operates Tarlov Cysts? More research. Which doctor is acknowledged as an expert in this field?
I learned about forums on the internet for affected people, every day I was online. One day, by chance, I found a forum about Tarlov Cysts. I almost couldn’t believe what I read: there was a hospital where they are familiar with the disease and also treat it. I swallowed, I cried tears of joy. From that moment on, I was optimistic that someone could help me.
Almost immediately I was given an appointment with Professor Dr. Warnke, head of the neurosurgical department of the Paracelsus Hospital in Zwickau.
After my first encounter with Professor Warnke, all my fears were gone. He was very relatable and kind. I trusted him from the beginning. He was honest and informed me that chances for a successful surgery were 50:50. A sobering statement, but still, I couldn’t wait for the surgery.
On the day of the surgery, I was very nervous. The surgical team did their best to calm me down and the closer I came to the operating table, the calmer I became.
Like every other patient I woke up in the recovery room, and immediately a nurse attended to me and asked me how I felt. I didn’t feel my pelvic floor and my legs were numb. My mind was racing: should I be crying or be patient and wait to see how the next days were going to turn out? Surely, feelings of numbness were to be expected after having surgery?
I already started physiotherapy the next day. The numbness was still there, so my first steps were very shaky. After the first sessions of physiotherapy, I felt a different kind of pain, pain I had been missing over the years, good pain, my leg muscles ached. The pain I had experienced before the surgery was gone. No headache, no pain when climbing steps. Luckily, I didn’t have any complications at all and to this day still don’t have any. Of course, I had surgical pain, but it was bearable and I was given pain meds. I became more stable with each day, I could feel it.
Being able to climb stairs pain free gives me the confidence that my old life is within touching distance. My physiotherapists have created an intensive training programme to help me rebuild my leg muscles. On a daily basis, I walk a certain distance which I increase regularly. Starting in October, my next goal is to walk small tours until I make it back to my standard 30 km tour.
Ever since the surgery, my mental health has been very good. I have high hopes to build new relationships and have found my zest for live again. For me, it was the right decision to have surgery, there was no other way. The surgery was my last hope to get my old life back. Looking back, under the same conditions I would opt for surgery again. Ever since, I have been reading a lot about Tarlov Cysts and only learned about the Vigdis Thompson Foundation after my operation. I would like to thank the Vigdis Thompson Foundation and the team of the Paracelsus Hospital.
And, of course, I would like to thank Professor Warnke.