Anyone been diagnosed with arachnoiditis after spine surgery?

Hello @starrh and welcome to Mayo Clinic Connect. I can tell from your post that you've had a long and trying health journey. You are not alone in your frustrations and I am glad you have found Connect.

It sounds like you will see a surgeon to discuss your options for the tarlov cysts. Do you also suffer from arachnoiditis?

I was diagnosed with Adhesive Arachnoiditis 2 years ago. I was seeing a Neurologist from Spring Texas who took early retirement May 1, 2022! I have yet to find any other doctor with any knowledge of of the disease or treatments to slow down paralytic progression of the disease. It’s crazy. I’ve had 8 back surgeries & 12 to 15 epidural steroid injections. It appears from looking at MRIs that my Arachnoiditis was initiated from an epidural steroid injection given to me by an anesthesiologist that gave epidurals to pregnant women during delivery.

I got mine four years ago and go to Northwestern and receive no help or trials, except tramadol. I hear there is some sort of surgery, light laser, even possibly and hopefully plasma exchange for help. Nobody knows anythinging

Yes, I had back surgery in February of this year, ten days later Dr had to take me back to surgery as a screw cracked one of my vertebraes. Came out of second surgery and could feel nothing from waist down. Finally I got an answer after many drs at Cleveland clinic....nerves are clumped together, you have arrachnoiditis. Everything settled in my feet, feel like I am walking on stones. Also pain in calves. Dr has just upped my gabapentin to 3000 a day. Waiting on script for Cymbalta. This has been a nitemare

@willisann. That is so terrible - my heart reaches out to you. Was the arachnoiditis caused by the surgery? I’m sorry if I am asking ignorant or questions that cause you distress.

HI @dolly1 I am in Chicago as well. Did the doctors at Northwestern diagnose you with arachnoiditis? Curious because I’ve also been there for some time and have never heard the diagnosis though i believe i have it. I have to admit, I’ve never asked them. I had a consult with Dr. Tennant on the topic. Would love to see someone local who is knowledgeable about the subject.

This sounds so difficult!! I hope Cymbalta and Gabapentin will give you some relief.

the Doctor never told me that I had it before. It was just after this last MRI that they diagnosed it. after my second surgery. Yes, I believe that is what caused it. I find this board helpful and my heart goes out to all.. ..Thank you for your question. My dr has put me up to 3600 gabapentin and will be prescribing Cymbalta. Have a wonderful day.

Thank you, the gabapentin being increased has helped some...I just hope that the cymbalta puts a kick in it.

Yes, a neurosurgeon from Northwestern took an updated MRI and saw it and prescribed an internal tens unit to stop pain. I did not, so he does not want to see me again. It's been verified by other doctors at Loyola. The neurologist at Northwestern did absolutely nothing for me except testing for polyneuropathy which I have, and he only concurred what other neuros told me. So .. here I am not rich enough to afford alternative medicine.. I love Dr. Tennant. Just recently talked to him. Also, Medicare does not have any help for us either, because they will not cover anything we can try. It,s a loose loose kind of a deal . Trying to get put back on hydroxychloriquin again for some relief. But that's like banging your head against the wall. Lord take me?