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Arachnoiditis: Looking to talk with others
Spine Health | Last Active: Aug 16 4:15pm | Replies (388)Comment receiving replies
Pam,
I too have Adhesive Arachnoditis from way too many steroid injections and other procedures that punctured my dura space requiring spinal blood patches to stop the leaking spinal fluid.
In 2013. I had a Medtronic intrathecal morphine pain pump implanted. If you read about Arachnoditis/ Failed Back Syndrome/ Post Lamenectomy Syndrome the gold standard for treatment is a Intrathecal morphine pain pump. They can fill it with just morphine, or a combination of medications.
I'm currently detoxing from my pump after 5 years slowly 15% titration per week. Withdrawal symptoms are something j do not want. So slow goes the reduction.
You should read all you can get your hands on by a doctor, (Dr Forrest Tennant) He opened the eyes of many doctors about Arachnoditis and how to treat it. But.....due to the pressure of the DEA, (Drug Enforcement Agency)
He was forced to close his practice. He was an amazing doctor, he truly had mercy in his heart and soul for his patients
Hope this helps.
Replies to "Pam, I too have Adhesive Arachnoditis from way too many steroid injections and other procedures that..."
I just been diagnosed with a a and I've been reading about dr. Tennant. I was not aware that he lost his license could you tell me more about that if you can and are you following some of his treatments. Have you tried the stimulator which is what the Mayo is suggesting right away as I am not in stage 3 I'm going to Stage 1. According to Tennant he says don't do stimulator until later as stage 3 if if that should occur which I'm trying to prevent. Getting a Little Help from the Mayo Clinic and I don't understand why there's more research or why this more ideas of what to do for preventive care to prevent those nerves to congeal? Is AAA covered under insurance as I'm getting the impression that there's a problem with providers at the Mayo with my condition? Does anybody out there know if I can play golf with this condition and will it get worse because of golf?
I am so angry with the restrictions that the DEA has placed on our therapy! My therapist says that it's like when one bad apple runs the whole bunch.
I don't know where you live but I have had good success with medical marajuana. Equal parts CBD and thc in a concentrated oil has made my life more bearable.
I’m wondering why you are detoxing from your pump I have one and I’m always worried about having it in too long
Dr Tenant still works hard to educate the world about adhesive arachnoiditis. He is a wonderful, caring doctor. He is still educating the world through ArachnoiditisHope.com
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Hello, Dr. Tennant, NORD has helped. When I email him, ask questions he or staff always responds. I have not met 1 Dr. who claims they know about A.A. or they don't want to know because they caused it.
I have a pain pump, happy with it. BUT, I have been taking Hydromorphone since about 2015. My body has become immured to the pills and liquid. I told my P.M./Anesthesiologist he doesn't seem to hear me. I asked for a different kind. I am his 1st A.A. patient. I asked him if he gave up on me, he was insulted. Not getting positive feeling from him?????? Pain is taking a terrible toll on me, husband also. I'm having pelvic reconstruction surgery which is very needed but I am terrified of the pain I will have from that and the pain I have everyday??? Has anyone experienced hair loss, urine, bowel retention? After extensive reading those could be one of the side effects? Dr. Tennant and other Researchers in AA have also agreed that a certain hormones do help with pain, I can't find a dr. to read the information he sent me.