The story of Elaine
I have Adhesive Arachnoiditis, a rare neurological disease that affects the nervous system all over the body. It is excruciatingly painful and there is no cure. Doctors on the whole, do not want to treat us and many patients are turned away, forgotten or told to find help themselves. This is because there is a thick web of silence in the medical profession as Arachnoiditis is mainly caused through medical negligence. It can be caused from a myleogram (a dye injected into the spine and damaging the nerves in the spinal canal), epidural injections, failed back surgery or infections. Although Arachnoiditis is a registered disease, it is not taught in medical school and most doctors cover it up because of embarrassment of not knowing how to treat you or covering their colleagues who gave us these injuries. It is a progressive disease that attacks the nerves from the spinal chord causing massive inflammation that spreads throughout the body wherever there are nerves. The pain is chronic 24/7 and most meds offered to us are not sufficient to reduce the pain so we can have a reasonable life.
My journey began over forty years ago when I sustained 2 crushed discs from a sporting accident. Because no diagnosis was given for two years, a lot of nerve damage was done. But after a myleogram, 2 laminectomies and further surgery to L4 and T3, I was much better but still in pain for many years. In 1994 the back gave way and more damage had been done to further discs. I was bedridden for a year until I was able to make it downstairs with the help of a stairlift. We put in a bed in the living room and I layed down all day as I could no longer sit without a protruding disc moving out of place and signicant nerve pain in lumber spine and down my right leg.
I had an MRI scan 2 years ago which revealed Arachnoiditis, a large arach cyst in spinal canal and clumped nerves. The nerves passing through the equine Clauda have been pushed out around it causing great pain and affects passing of urine and bowel movements. The nerve pain had increased severely. Recently, the nerves in both legs and numbness has crept up both legs, back, arms, hands, face and head. The pain has been excruciating but the numbness quite frightening as the next stage of this disease can be paralysis. Unlike cancer there is no release. We have to struggle on until our organs may be affected by the strong medication we desperately need. I now feel I may be having a stroke any day as my face is so numb and yet so sensitive to touch.
Adhesive Arachnoiditis is a more advanced stage of Arachnoiditis and needs recognition and education in the medical profession. Apart from the never ending pain the worse part for many is the lack of medical help and most of my friends have left me. They cannot understand a disease they have never heard about and find it hard to accept doctors refusal to help and most do not understand. My husband also left me after 25 years of marriage unable to cope with our changed life. It is a very hard and lonely life but I have found a support group on line that has been a life line for me and many others. We give and find encouragement and collect as much info as we can about this disease. One day Arachnoiditis will be in the news and doctors will be trained and able to treat us significantly. Until that time we struggle on in hope!
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