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Arachnoiditis: Looking to talk with others
Spine Health | Last Active: Apr 16 10:18am | Replies (386)Comment receiving replies
Thank You so much Joan, I am desperate. I am in-touch with Tennant also. I really thought my Dr. would follow his Protocol. My called today left message about the Clindone reaction. May I ask you the Dr's name you will be seeing at Mayo, State? If not it's OK. We are our best Advocates, have to be. I think the Dr. you mentioned in UK last name I think, Smith? I wish I had know about Dr. Antonio Aldrete. I read about him, found out he retired also. Tennant is so kind. I am very disappointed in my Dr.! I realize he not that familiar with AA. I wish good luck and if you feel comfortable letting me know how Mayo appt. went. I'm trying to get Patients together, Advocates to go to the Legislature to bring this Disease to the Public. To the the Doctor's know their surgeries are in question. Why do they keep saying, I can help when it only gets worse! Thank You for listening Joan.
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We are all listening I'm just waiting now to find out how the Mayo Clinic is going to handle our future and keep an open mind to some of the things that's out there as we got to think out of the box. All I got from them is put a stimulator in me and then two other doctors at the Mayo said no don't do it. Very confusing.
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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.