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Any Adhesive Arachnoiditis members here?

Spine Health | Last Active: Jan 18 12:45pm | Replies (114)

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@lisalucier

@galady - are you looking for suggestions across the United States for a doctor adhesive arachnoiditis treatment?

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Replies to "@galady - are you looking for suggestions across the United States for a doctor adhesive arachnoiditis..."

I ALSO HAVE AA. THE MORE PROCEDURES, SURGERIES THE WORSE IT GETS. I WISH I NEW THIS BEFORE MY LAMINECTOMY 2008. IN MY CASE NO MORE CAN BE DONE. DOCTORS, MOST PRETEND THEY NEVER HEARD OF AA! I LIVE IN NJ BUT WENT TO MARYLAND. AT THAT POINT I HAD NO IDEA WHAT WAS WRONG WITH LUMBAR SPINE. I DID A LOT OF RESEARCH. FOUND A WELL KNOW DOCTOR, RETIRED, DR. FORREST TENNANT FROM CALIF. HE WILL RETURN YOUR EMAILS. BY THE TIME I FOUND HIM IT WAS TOO LATE BUT WANTED HIS INPUT. IT VERY VERY HARD TO FIND DRS. THEY CALL WHAT WE HAVE "FAILED BACK SURGERY!!" THAT IS THEIR WAY OUT OF ANY RESPONSIBILITY. THERE IS NO TREATMENT THAT I AM AWARE OF. WE HAVE A VERY COMPLEXED CONDITION. BING, ADHESIVE ARACHNOIDITIS I HAVE BEEN LOOKING SINCE 2015. 2018 I ASKED DR. TENNANT IF IT WOULD BE A GOOD IDEA TO HAVE A PROCEDURE TO REMOVE SCAR TISSUE AROUND THE NERVES, ANSWER, NO! IT WILL ONLY MAKE ME WORSE. I WAS SO DESPERATE LIVING LIKE THIS I DID IT ANYWAY. HE WAS RIGHT, I AM MUCH WORSE. A PUMP, WITH THE BEST DR. YOU CAN FIND, HAS DONE MANY IMPLANTED PUMPS ETC. I STILL USE HYDROMORPHONE KEEP IT TO 2X'S A DAY IF I CAN. I HAVE JUST START A NEW MEDICATION ORAL CALLED NALTREXONE. START ON A VERY LOW DOSE. I RESEARCHED IT LOOKS PROMISING. I CALLED MY SENATORS, CONGRESS NO RESPONSE NO INTEREST. I WOULD LIKE TO GET PEOPLE TOGETHER TO BRING AA TO THE LEGISLATURE SOME WAY. THESE DRS, DID THEY TEAR THE DURA, WHAT HAPPENED WHEN YOU GAVE ME AN EPIDURAL, WHAT HAPPENED. WHY DO THEY SURGEONS ETC. CALL IT FAILED BACK SURGERY WHEN THEY KNOW DARN WELL. MY HUSBAND SUFFERS TOO BECAUSE I'M NOT THAT PERSON ANYMORE. MANY THINGS I CAN NO LONGER DO. I DON'T MEAN TO SOUND ANGRY, I'M SORRY. THE OLD SAYING, "A FRIEND IN NEED IS A FRIEND IN DEED"