Any Adhesive Arachnoiditis members here?

Have you Goggled... practical pain management arachnoiditis? It has part 1 and part 2. It was written by Dr. Forest Tennant. This is very informative and has his recommend treatment plan.

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"

"ADHESIVE" ARACHNOIDITIS IS A LOT OF NERVE DAMAGE, SCARING. PAIN THAT NEVER GOES AWAY. I WISH YOU THE BEST!!

HELLO, I ALSO HAVE AA.. RESEARCH??????????!!!!!!!!!!!!!!!!!! THE SURGEONS CAUSED THIS THEIR PROCEDURES THAT MAKES THE PAIN WORSE. HIPPOCRATIC OATH IS NOT PART OF THEIR VOCABULARY. ANOTHER DOCTOR GAVE ME FUSION WHICH HE SOULD HAVE NEVER DONE. I LISTENED TO HIM OUT OF DESPERATION. SURGERY FAILED I CALLED HIM FOR HELP, NEVER CALLED ME BACK OF COURSE.

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

I am sad to hear of your husband's problems. Does he have any issues with seizures and/or memory loss.
I had a laminectomy and shortly thereafter began having seizures and sever memory loss. Of course the physicians I have consulsulted are protecting their colleague.

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?

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 .

Hi There, I am so sorry to hear of your desperate attempt to improve the nerve scarring. Believe me, most of us know what you mean. There are times I´ve screamed, "cut my legs off, cut them off!" And this when my pain protocol is taking a break and nothing works. But truly, attempting more surgeries is the worst thing one can do. When pain started really bad and I saw a kindly older physician, he grabbed me by the hand and said, "young lady (HA! I was 70 Plus), PROMISE ME, you will not let anyone touch your spine: you will wind up in a wheelchair." And he did it with such force and earnestness that it stayed. Plus Dr. Aldrete´s five-hour consult with me back in 2012 generated a 15 page report saying exactly the same thing: do not let them operate ever again. So we all have to learn that awful lesson, just don´t beat yourself up. And if these words here can help anyone else, we will have done our job. Too often it is next to impossible to find anyone with whom one can TALK! This is truly the beauty of Mayo Connect. A way to help each other out. I have not tried to make an appointment with Mayo about AA, so not sure what their experiences are, but will probably need a consult soon. Don´t be too embarrassed to confess to Dr. Tennant. He is the kindest and most knowledgeable professional in AA, and he´s seen it all. Take care, Joan

Hi Lisa, took me a while to figure out how to reply to you, and now I have to keep my husband company for a little bit. But will be back. Thanks so much for your note. I will definitely tell you about the internal inflammation efforts....Big hug and great to meet you and all others, Joan