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Arachnoiditis: Looking to talk with others
Spine Health | Last Active: Apr 16 10:18am | Replies (386)Comment receiving replies
Kim, I am just as frustrated as you are as I had a difficult time diagnosing my condition as I had to do it alone cuz I had nobody to coordinate me and now that I know about it these doctors up there don't know how to deal with it and the only recommendations I'm getting is a stimulator implant which I'm at stage one which is not recommended by dr. Tennant. We should all get together and demand something or conference about our condition and see what they're going to do about it because this is the hospital that supposed to be on the edge of research and development and now that I know that oversees they're dealing with it but accepting this country there's no funding for research to help us with our suffering. All we know is that it sounds like if you got terminal cancer you got a better chance than with this. What doctors have you seen as I seem Dr dorsher and dr. Hurdle and my neurologist there Doctor rozen gave me the most assistance but he's not a back doctor and yet he knew more about it and help me coordinate my care better than anyone.
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Hello Don, Dr. Tennant I am familiar with. He and other researchers found that certain types of hormones do help with pain. It is now proven BUT not one dr. I see will read 3 pages of solid information not even my P.M. Dr.! Dr. Tennant advised me NOT to have scar tissue removed. In my heart I said, don't do it, I did and now I am worse. I will never have anyone touch me, procedures again. AA patients become worse, my experience and all the good sites I have learned from.
Don, For years I have tried to get patients, family to get together, go the the Legislature to pass a bill stating in so many words, Or much better than I can. Doctors Must Inform in writing and signed, about the possibility of the LIFE CHANGING, PAINFUL SIDE EFFECTS THAT CAN HAPPEN DURING ANY SPINE SURGERY, NERVE BLOCKS, EPIDURALS, ABLATIONS, TEARING THE DURA AND CHANGE of A LIFE FOREVER. THIS WOULD BE IN WRITING HANDED TO THE PATIENT TO READ AND THAN PATIENTS DECIDES. Patients if they choose will be able to research before surgery. Berton Report, Dr. explains A.A. and how to get it! He is not afraid of the medical community! I don't want to sit back and do nothing but no one seems to be interested. I have said this before, "I Was Not Born With This it Was Given To Me" I think about the thousands of the I can't imagine how may people here and overseas who has AA and again, NO ONE CARES, Especially the Protected Doctors who never signed the Hippocratic Oath!
After my second spine surgery I became worse. Pryer to it he gave me the, promising, you will get some of your life back. What was wrong with me to listen to him? Desperation? Again I was worse with spinal fluid dripping down my legs. I just asked my P.M. If he could add more Hydromorphone to my pump and eventually stop the pills. He agreed. Maybe I will be able to sit, go to dinner with husband and friends, food shopping, sitting, walking. I will be giving my body to science, maybe it will help others especially Mothers-To-be.