Yes, indeed, it is not possible or advisable to surgically remove evidence of arachnoiditis. PLEASE DON´T LET ANYONE DO IT. This, per the experts I have seen over the years. One arthritis specialist (up in age) insisted I not let anyone do any surgery on me "or you wil wind up in a wheelchair." I am glad you didn´t do it. All that is left for now is pain management, but one more thing: become well-versed in anti-inflammatory regime when it comes to FOOD! AT one point I had a marvelous MD who was a fellow sufferer, who put me on the path of avoiding anything that was inflammatory, and it did help in terms of dosage of pain killers. This means NO PROCESSED FOODS at all, no dairy, no gluten, no beans, no nightshades like tomatoes and eggplant, and the list goes on and on. Turned out to be the same preventative list of anti-inflammatory foods used by our local Stroke Clinic. It is the hardest thing to do, but once you get into it, you CAN. I was on it for at least 5 years, and things got a lot better. Unfortunately, I fell off the wagon, and am trying to get back on. Very, very strict regime, especially while socializing. Takes a lot of planning and preparation and hardly ever eating out unless very selective. And focus on vegetables, SOME Fruits, mostly salads with only oil and vinegar, and good protein (sourcing of protein is key also). Good luck to all, and my apologies if I am not using this system appropriately....still need to learn a lot about Mayo Connect

I also have A.A., so happy you declined surgery.
Failed Laminectomy 2008, 5 levels Lamina removed no fusion. I was diagnosed many years later. I have learned, hearing "failed Laminectomy" "failed back surgery" are words that must be, researched because they could be used in the place of "A" or "A.A. that surgeons run away from. My experience only, radiologists I have met have never heard of our diagnosis. Yesterday, MRI, asked if they heard of it, YES, YEA! I brought my information about it, they copied it and put it in my files. Pointed out all my concerns, fears. I did have with and with-out.
Maybe I could have been helped if diagnosed early? To far gone. 2016, fusion. I was told by surgeon fusion would help, high percentage. No one I new I had AA at this point. Had the surgery. Rehab. fractured vertebrae, HOW? few days latter another surgery. Surgeon must have seen the nerves and scar stuck!!! After, I called him, complained of more pain. Never returned call.

Nerve blocks, Ablations, ETC. How I wish Patients dealing with so much pain, desperate for help as I was not the least bit aware of my diagnosis. Only the pain. Take a step, pause, Call Dr Forest Tennant, Read the Dr. Burton report on AA.. Contact NORD, Arachnoiditis Foundation, Dr. Forrest Tennant's Foundation, Dr. Sarah Smith, Arachnoiditis, UK.. I hope this may help. Wishing you a good day!

So true so true so true! It's a damn shame there's and more research done and more recognition that there is a problem and how to deal with it. I beg my doctor to least explain to me what it is and what my prognosis is was and it took a while for him finally to respond. Very sad.

That is so true about the Mayo Clinic has their doctors don't even want to talk about it and they give you very little information. The doctor I saw in Jacksonville didn't want much about it and when I insisted on knowing more about it I finally got some information that was limited. First you told me stimulated wouldn't work and then after I complained about the pain he suggested to do a stimulator. Very confusing and now I just got in the mail this doctor is leaving the Mayo Clinic for whatever reason I don't know. Is very sad the big hospital is Research Center for diseases has nothing going for AA.

I am so sorry that you are having such pain. I understand what you are dealing with daily. I have had Adhesive Arachnoiditis for a little more then 17 yeears. It keeps progressing and pain keeps spreading and has intensified significantly. From doctor to doctor I'm told that nothing is available that I haven't already tried. So I try to keep and "attitude of gratitude " and to start each day 🙏🏼 being positive about family and friends that I can talk with, and gratitude for my surroundings, in the apt and looking out my window. The TV with shows to help give me something to do, and to see if there is anyone that I can somehow help, maybe by listening and really hearing them. Maybe by somehow making them laugh. Than at night, I try to go over the day in my mind and heart and think about the many good things I have to be greatful for, big things and seemingly little things. I will say a prayer for you each day. Do I suceed in doing this daily? Sometimes it's a 1 step forward and 2steps backward. But the next day holds possibilities that may make my heart smile. Hang in there.
mmata