Arachnoiditis-My Companion

"Arachnoiditis" is a spinal disease that attacks the arachnoid layer of the spine and destroy it. It affects the nerve endings and causes them to basically grow together and this causes severe pain. There is no cure for this disease and the only thing that can be done for it is to treat the pain. There are not many doctors who are willing to treat only pain because with this disease, the best way to treat this pain is with opiads, or class ll narcotics. Doctors are worried about the FDA coming down on them, they are also worried about patients becoming addicted to pain meds and them sueing them, and so a lot of us with this disease are left to suffer. The worst part of it is in how this disease is contracted; the medical profession gives it to us through mylograms and through Epidural Steroid Injections and as long as these procedures are allowed, this disease will continue to spread with no known cure in sight and no treatment forthcoming from the very profession that breeds it.

I had my first mylogram in the early 1970's and the doctor who administered the test needed it to find out the extent of the rupture in my disc. Naturally, this test was not going to cause me any lasting problems. He was going to inject dye into my spine but that dye was going to be absorbed into my body and then I would pee and the dye would be gone. Here we are now in 2005 and if you look at an x-ray of my spine that very dye is still visable along with my destroyed spinal colunm. Years later, to ease pain in my hips and legs caused my this horrid disease another doctor, a pain management specialist, decided that what I needed were Epidural Steriod Injections because these would definitly numb the pain and would not hurt me one bit. Once again, I trusted a doctor and later learned that another main cause of Arachnoiditis is Epidural Steriod Injections.

These guys get you to sign a release that does not have this disease mentioned anywhere on the paper at all, because according to them, it does not exist; they like to call it "failed back syndrome" because to list this disease is to accept blame. The medical profession does not want to acknowledge it, however Social Security has acknowledged it as a disabling disease.

Arachnoiditis has been my companion since mid 1994 and it's been quite an experience learning to live with this crippling disease daily. There have been days when I have not been able to walk, there have been nights when I have not been able to sleep. I have lost count of the miles I have walked in my house during those nights when my legs have decided to jump with spasms so bad that laying down was impossible. I have had charlie horses in my feet so badly that my toes have curled under and I have cried out in pain. I have spent more time sitting in hot water, because wet heat is my friend, that my skin has turned to leather. I have had my 3 year-old ask me, "Mommy, does you legs hurt today?" knowing that my answer meant the difference between his being able to play outside or having to stay cooped up inside the house on a beautiful sunny day. At 50 years old, I walk with the speed of an 80 year old and some days much slower, stooped and leaning on a cane and I get out mostly just to visit the doctor for him to write my pain meds. In a sentence, it's a shitty existence and some days I know death would have to be a relief. This disease has been compared to the pain of cancer but without the sweet relief of death, because sadly, it does not kill; but it has driven some to suicide. There is no recourse because the maker of the mylogram dye is Kodak and no lawyer is willing to take them on in a court. And so, I wait, I sit and along with an estimated three million others in the United States alone who are living with this disease who go ignored and living in pain, try and cope daily just getting thru to another day to do the same thing all over again. Hobble from one room to another on our canes, some in wheel chairs, all hurting, spasming and crying, begging for pain meds for some small reprive from the pain we must live with 24 long hours a day from a disease we had no control over. A disease we contracted simply because we had the idiocy to trust the medical profession for giving to us. What a country we live in, huh?