Arachnoiditis: Looking to talk with others

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.

Kim, I am proactive now that I discovered what has happened to me and by the way I had a serious spinal leak last year at the Mayo and it took three surgeries to fix it and now I got this. Today I sent to the Head pain doctor will it I don't know if he's the head but it could be a copy of dr. Tenants bulletins about 20 pages about our condition. Ask him to please read it and make a comment whether it's bad, some good , or what do you think or whatever! I hope the Mayo which I do respect many ways as I've been going there for 25 years could at least take in consideration what we're talking about.. I got this report by joining this connection group who sent it to me and now I'm sending a copy of what I've received here for Mayo patients. I also sent four days ago the handbook and no response. I will keep you informed my prayers are with you and all of us and let's keep fighting. Tenant is helping me and I'm looking for other things outside the box like pemf. I got nothing to lose but try it. Kind regards Ramadan

Kim, your story is heartbreaking and it's a shame that they let you do what you shouldn't have done. My question to you is obviously your patient of the male clinic and what kind of reaction are you getting from them and where have they left you with your condition? I need to know this from you or anybody as where can we get help and is it at the Mayo and since we're talkin on Mayo chat forum why aren't they listening and why aren't they doing something for us. They should at least consider some of the information that Dr Tennant provided over the years with all his research and patients that he has cared for. After all in my case it was their radiologist it said I have it after my MRI with contrast was completed. Nobody sat me down and explain to me what I had and what my prognosis would be in with my care should be. I had to literally make my own arrangement to see three doctors that I know their names and know their titles in order to get an appointment to ask him a question. Both doctors disagree with the surgeon about my stimulator and one put me on some both of which I couldn't leave the house for 10 days. I am not turning away from them I just want to see where we can go and see if we can help them work through this for all our sakes. I need your thoughts if you don't mind. John

Joann, I am not sure what you mean by golf is version a. Gulf to me is like the best therapy has I'm quite good at it I'm going on 76 and I play the back to using today I want to golf tournament. It's all about being active and I don't know whether it's hurting my condition or helping it and either do you or anybody else. Tomorrow is graduation day and enjoy it they will give you a bunch of claps and Aurora and then you're on your own but the goodbye is fun and the last day I celebrated with a couple of drinks with some some members. Give you a lot of books to read just keep it up if you can. Congratulations and I hope it helps.

Joan I couldn't find the recent reply I sent to you about Tennant and hormones. It's very long, so much good information. please let me know if this works? I have no idea how to send this to others with AA? I have over 100 Mayo Clinic. NORD report on Arachnoiditis.pdf [104.5 kb]

Relief. Recovery Hope Arachnoiditis -Hand Book For Survival This should work

It is help me. The exercise is a real important especially walking. Big difference in 10 mg of Prednisone seems to give me the energy I need without the side effects. B12 and so on and so forth.

Hi don, I can't exercise with AA. makes me worse. Did you have the procedure?

Kim, I just sent for my PEMF mat Healthywavemat for $795 for a 45 day trail. LOOK it up as the reviews where unbelievable and what do we have to lose as it not harmful and no side effects. I think it will help with all I read along with people that are using like my friend and he is sleeping all night with no pain. I am going for Botox injections in my shoulder muscles on Oct. 14. Wish me luck.D

Doctors won't listen!!!!!!!!!!!!!!!!!!!