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Any Adhesive Arachnoiditis members here?
Spine Health | Last Active: Dec 4 6:51pm | Replies (117)Comment receiving replies
I just signed up here about an hour ago never expecting the number of AA sufferers I would meet! I was diagnosed with AA in 2012 by Dr. Antonio Aldrete, the well-known specialist and author who, unfortunately has now retired and moved overseas. A wonderful, kind, and totally knowledgeable specialist is Dr. Forest Tennant, in California. I see someone else mentioned him too. He retired last year but continues to provide incomparable information and HOPE through a couple of different websites and, if you get on his mailing list, there will be regular updates. He is now focusing mainly on research about AA, but is disseminating all the information, free of charge, to patients across the world. You can also look him up online. I had a wonderful Physiatrist MD who moved to Maine, so I lost her. But she TOO, had AA, and was totally understanding (on a personal level) of the horrors we experience; her practice was much about AA. She treated me for about 3 years and I was heartbroken when she left....her effective mantra is to REDUCE INTERNAL INFLAMMATION via better nutrition. It was like a miracle for me. If anyone wants to hear what I learned through her, just let me know. If anyone is in Maine, you can look her up too.... But am afraid AA is now progressing so that I need more help than what works with the anti-inflammatory routine.
Has anyone found a physician at Mayo Clinic who knows about this condition and is willing to see new patients? I´m so glad to have found you all via Connect today. Be strong. And Patient. Remember you are Not Alone....and know what it all feels like. Hugs, Joan
Replies to "I just signed up here about an hour ago never expecting the number of AA sufferers..."
MY AA IS PROGRESSING ALSO. I HAVE ALSO BEEN IN TOUCH WITH DR. TENNANT. I ASKED HIM ABOUT REMOVING THE SCAR TISSUE THAT IS STUCK TO THE NERVES. HE EXPLAINED AND SAID NO! WELL I WAS AT A POINT WHERE I FELT SO DESPERATE, DEEP DOWN I KNEW NO MORE SURGERIES, NO MORE PROCEDURES. TIRED OF MY NERVES JUMPING, SPILLING THINGS NO CONTROL OF THOSE NERVES. I WENT AHEAD ANYWAY. 2 HR. TRIP TO THE HOSPITAL. IN THE CAR I WAS SO NERVOUS SAYING TO MY HUSBAND I HAVE A BAD FEELING. I WAS COXED BY OTHERS BUT IT WAS MY DECISION. THE 1ST PROCEDURE IT KINDA WORKED NERVES SEEM TO STOP. 2ND PROCEDURE HE DID MORE. OF COURSE IT WAS WORSE! COMMON SENSE I TOTALLY IGNORED. I NEVER TOLD DR. TENNANT TOO EMBARRASSED. NERVE PAIN WORSE. TOES, NEUROPATHY. I HOPE I HELPED A LITTLE BIT? KEEP THE PAIN AND EMOTIONS AWAY WHEN MAKING DECISIONS. WHEN YOU ALREADY KNOW THE CONSEQUENCES .
Good afternoon. I was looking through comments and came across yours. I live in Maine and have a friend with A piece of arachnoiditis and is looking for someone who understands it. He is aGood afternoon. I was looking through comments and came across yours. I live in Maine and have a friend with An piece of arachnoiditis and is looking for someone who understands it. He is a retired ER nurse who is very well versed in Dr. tenants studies and protocols. I was wondering if I could ask you the name of the psychiatrist that moved to Maine
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Hello, @joanmahon - welcome to Mayo Clinic Connect. Hopefully you are glad to meet so many fellow adhesive arachnoiditis (AA) sufferers here. I'm sorry to hear your AA specialist moved overseas and then you lost your physiatrist, too.
If you use this link http://mayocl.in/1mtmR63, you can contact appointment specialists online or by phone to talk to them about being seen at Mayo Clinic for your AA.
Will you talk more about what you learned about reducing internal inflammation through better nutrition?