Arachnoiditis: Looking to talk with others

I had a laminectomy with fusion of L5-S1 in 2017, laminectomy of L3-4 in 2019, fusion of L3-4 in 2021 and finally a fusion of L-3 down to S1 in 2023. I believe my arachnoid was compromised in 19 as I awoke with issues in my legs that were not there prior to that surgery. The first mention of arachnoiditis was by radiologist following a MRI done in April of 2024. Two neurosurgeons and my neurologist concurred with that diagnosis and started me on pain management in May of 24. It’s been a lot to soak in to say the least and I know I haven’t begun to understand what’s in front of me.

Archie lauren here Been having vert severe nerve pain, not relieved by Oxycodone or gabapentin I have been having Loss feeling in my feet & today woke up with very little feeling in my legs, feet. Very afraid this will get worse & i will lose my ability to walk & care for myself. Exercise, seems to help me feel my feet & my anxiety is rampant. Since i was paralyzed for 16 months, from MRSA in my spinal cord, not anxious to b e back in a wheelchair Have U experienced any thing like this? Pain was so severe yesterday & took more pain medicine Would Medrol dose pac help this? On gabapentin forever & can't tolerate Lyrica My neurologist booked & i don't have telehealth until feb 4th Couldn't sleep ( 2 hours) Every one says i need to curb my anxiety! Can u share your experience with this? Any one had similar severe nerve pain with numbness & loss of feeling? Is this a predictor or more to come? Seems to be intermittent & progressing Very hard not to get anxious. Pain was so bad, i thought i was going to pass out. Referral to Barrow's neurological coming. But, it's hard not to see this progression of symptoms. Any feedback or thoughts on this situation? Current neurologist says nothing can be done except steroids for AA Thanks

Hi Lauren—Archie here—
Well, I just had my daily oatmeal so I guess not everything is in a bundle. I get what you say about anxiety- „oh just take it down a notch“ friends say. Well, easy to do is easy to say. In the context of MY experience, what you’re going through is very unusual—that doesn’t mean unlikely, just unusual. When medical practitioners say that AA is progressive, in general they are talking on terms of over YEARS, not days or months.
There is a „psychological overlay“ to everything we experience. It seems you’re being told (subtly if not explicitly) that you are overstating your symptoms because of your worry and anxiety. Take a breath. What you’re describing may reflect an entirely different diagnosis from AA. At this point, it seems you’re going to have to wait for the consults they have set up, and look at them as an opportunity to understand your pain process from a different perspective. If possible, get some sleep. This can help you deal with all the other variables. It’s hard to be more specific without knowing deeply about you. But we’re here, we know pain, we know the unfairness of having intractable pain and no help on the horizon. Don’t give up hope— you have appointments coming soon. Best, Archie

Hi Lauren. I have AA and have studied for 10 years. IMHO you will find no better advice than following Dr. Forrest Tennants recommendations as he has seen more cases than anyone and although I am in the catastrophic stage, I can still walk and my pain is controlled enough to take care of myself and enjoy many things in life. I have followed his recommendations after being his patient. He is retired. Everything you need to know and do can be found at http://www.arachnoiditishope.com. I hope this is allowed for me to share. Please start there and I'll be happy to answer your further questions. This is a horrendous disease but acute flares can be managed as well as chronic care. Sending my heartfelt blessings to you.

WOW, the pain in my right hand is unbelievable. I thought I might be the only one having this.
I was diagnosed with Arachnoiditis a couple of year ago, but I've had the systems for much longer than that. Epidurals or surgery I have no idea what brought it on. I don't experience a lot of shooting pain, but more of a constant lower back pain that migrates all the way up my spine, if I try to do anything like physical activity or walking. About six months ago my right hand started to really hurt concentrating in two fingers. The pinky and the ring finger. They also lock up on occasions.
I as yet have found a doctor that can even spell "Arachnoiditis" let alone know anything about it. So I rely mainly on the few forums that I can find.
Other than the pain, I too feel like I'm losing my ability to walk. The feeling in my legs also go down both arms. Using a cane when I can, and about to start using a walker. My biggest fear is falling. I've take opioids and just stopped using a 15mg of buprenorphine patch. The patch worked for about a year and then I guess I got use to it and really wasn't very effective. The nice thing about it, was very little side effects compared to taking pills.
I'm scheduled for a second trial of drugs for a pain pump. I turned out to be allergic to morphine. I've read where the pump has a 70/80% success rate for AA? I'm hoping that's true?

Do you know anyone who has sued

Archie, I probably screwed up my email. I have been DX with AA for 10 years? The spine surgeon who put in my lower hardware made the DX. When he did the CT Myleogram, i think i screamed so loud, ( from the inflammation?) I had to have IV Decadron. They think i got AA from being paralyzed from MRSA in my spinal cord. Was paralyzed for 6 years, about 20 years ago. At this point, the Cause doesn't really matter. Will be going to Barrow's neurological hospital ( think u are aware of this institution) Wanted a second opinion, as current neuro, just writes scripts for Medrol dose packs & says there is no other treatment. He also used to write me scripts for Valium. Now he's no longer doing this. I haven't looked at my several last CT myleograms. I seem to have lost track of time, since the last 30 years, have been chronic pain. Nature of the pain, seems to be getting worse. Since i am fused from C3 thru my sacrum, i guess it's expected. When i go to the Barrows, guess they will officially confirm. What is the Success with a pain pump & Arachnoiditis? I can't sit up for long & have pain from my neck, to bottom of feet. New pain doctor, After my appointment, didn't seem to be gung ho about my getting a pump. He mentioned leak possibility, but not sure he even knows the scope of the situation. He put me back on pain management, with slight increase in medication. Meds, still not working for pain control Just wanted to find out more about success of pump in Arachnoiditis? I may not be a candidate , as i have pain that is in my severely arthritic shoulders( need shoulder replacement) I probably would still need oral meds, as i am really afraid of getting any more invasive surgeries. At this point, can hardly sit up for very long & quite discouraged. My new, PCP, refused to allow me to get my cortisol level checked, until he gets reports from Barrows I can hardly hold my smart phone & text Can hardly be up enough to research the pain pump etc. Have had 5 PCPS in last two years. Only one would even read handouts from DR Tennant. They all say they know about AA. I have my doubts about this

Archie and Laurie I am on an arachnoiditis group on Facebook and get lots of information from there. It could be very helpful for you. My name is Cindy Small on there if you look it up.

I was diagnosed with adhesive arachnoiditis on Dec. 19th after getting fused from L3-4 to L5-S1. I'm having numbness in both legs and my right foot is almost completely numb. I also have pain in my neck and arms. I thought it was because I lay down with my neck bent at a weird angle but I think it's from AA. I had a spinal leak during my fusion but the neurosurgeon never mentioned that this could happen. I kept going back to him year after year with symptoms asking what it was but he would say he didn't know. He would then say my butt pain is from my SI joint and he wanted to do an SI joint fusion. I got a feeling that he was selling another surgery. I had to go to the ER to find out about AA. It's been pretty devastating and I get new symptoms almost daily. My left leg was fine but now it's starting to get the burning and numbness sensation. I still work and luckily can work from home in bed but I also have a 4 yo son and it has taken a toll on him and me. I luckily have a great wife but I'm afraid to tell her that my legs are getting weaker and might end up in a wheelchair. I told my boss today that I might end up in a wheelchair but I still want to work every day. I hardly have pain in my legs but the numbness and burning sucks. I am going for a trail SCS. If that doesn't work I'll have to try a pain pump. All I want to do is work and be present for my son.

Also does anyone have tightness in their legs? Both the front and back? I wake up now and my legs are so tight because they haven't moved all night. I can't sleep because of this.