How would you like to have a disease so rare that most doctors know nothing about it or if they have heard of it, they think it does not cause pain?
How about going to a well known hospital with a specialty in neurology and neurosurgery, they do some painful tests on you, and then tell you that, "there is nothing that they can do for you and that you are a smart girl and you are on your own"...what?
Two years ago I had difficulty sitting after wheelbarrowing dirt for my new garden that my family and I were building. After X-rays and and MRI it was found that I had sacral tarlov cysts. Tarlov cysts are dilations of the nerve root sheaths filled with cerebral spinal fluid. Very few people who have them end up with symptomatic ones which cause all kinds of pain. They cannot be cut out since they are a part of your nerves.
Over the next few months I began having sciatica shocks so bad that I would sometimes yell out in pain. I felt like I was paralysed even though I could move. My hips and legs hurt too. I began having trouble walking. This disease is life changing. One minute you have to lay down, the next get up, the next sit crooked in a chair, the next walk, then lie down again. Usually lying down felt the best. You get weird nerve sensations. At least I didn't have many of the other problems that some people get from this disease.
I had been doing a lot of research. When the well known hospital told me I was on my own, I immediately sent my records to Dr. Feigenbaum who is one of the only neurosurgeons in the world who is able to help with this rare disease. I credit him with giving me my life back after a year of pain.
Dr. Feigenbaum looked over my MRI, scheduled a flexion/extension X-ray, and found that my only issue was the tarlov cysts that could be causing the pain. Thankfully my insurance paid for my surgery. My husband and I flew to Kansas City, met Dr. F and his wonderful nurse Debbie the day before surgery. Dr. F did a few nerve tests on me and found that my big right toe was not functioning from the nerve compression. I couldn't lift it or lower it and I never noticed it. My MRI had shown 2 tarlov cysts but during surgery, Dr. F found that I actually had 5 that were clustered like grapes from S2- S4. The right S4 was not only compressing multiple nerve roots but it was occupying the central component of my spinal canal which is why I felt paralysed from the compression. The surgical report went into detail about each nerve root cyst and how each one was treated. I also had sacral bone erosion from the cysts. Therefore I must of had the cysts for many years or possibly since birth but they only became symptomatic when I lifted too much. Tarlov cysts can occur from birth, falling, car accidents, lifting too much, etc. I have been in several car accidents and have fallen many times roller or ice skating so who knows how I got them. I have a resorbable plate covering the sacral bone that was removed. My scar only looks like a thin cat scratch.
After surgery I was in the hospital for 4 days and then a hotel for 5 more before we could fly home. The recovery period over the past year has been slow as it can take some people 1-3 years to recover from this. I am working on it but at least I am no longer in pain. Funny thing, last week at the end of the year staff luncheon for the 9th grade center and main high school, awards were given out to about 20 people among the 250+ staff members. I received one for being the "most happy" and I would have never been able to be myself again if it wasn't for Dr.F.
My husband has been a fantastic care taker. Always ready to help me when I need it and helps to take care of the house and yard. He actually does most of the house work now since I have to lay down often as I am still healing. He's wonderful.
I haven't done much of anything the past 2 years while dealing with this. At least I was still able to work. I gave up being department chair at school and my other duties except mentoring new teachers. I had quit doing art, photography, sewing, scrapbooking, etc. and only did a little gardening which helped to get me outside for fresh air. I am finally starting to feel creative again.
Today is my one year post-op anniversary!
If you have tarlov cysts and believe they are the cause of your pain, feel free to email me for more information or to talk. Here are some sites with information:
National Organization for Rare Disorders
National Institute of Neurological Disorders
Tarlov Cyst Disease Foundation
