Arachnoiditis: Looking to talk with others

Good morning. I have spinal Arachnoiditis as well there is quite a few things that can cause it . But after you have been diagnosed with it you definitely have to be your own advocate pretty much doctors tell the techs what do there just doing there jobs ( YOU ) have to speak up when you have this diagnosis or you could possibly be permanent in a wheelchair. There is no cure for this I’ve been dealing with it for 3 years now . Only thing that helps me pull through every day is pain meds , Gabapentin, tazidine , strong CBD oil 2 times a day and one to try and sleep . My pain never shuts off the way my Neurologist explained it to me is your body is like a train track with the brain being the main power hub . The pain signal is sent but the middle car is off track so it has no where to go so the signal just keeps going with no end , that’s day end and day out . I also take inflammatory meds to keep the swelling down as my spinal cord swells from time to time . I know we all would like an answer but there isn’t one bottom line there is no cure just Managment stay as active as you can I’m in a wheelchair myself push the limits make yourself do most of all don’t give up believe and pray 🙏🏻 the man upstairs is watching over you
you got this

Check Dr Forrest Tennant at arachnoiditishope.com

I'm sorry to hear about your diagnosis. I was diagnosed on 2002 with lumbar AA and in the past 20 years my abilities have decreased considerably. Just last month I was also diagnosed with severe cervical AA. I'm not sure where it is all going.

I'm sorry to hear about all your diagnosis. I was diagnosed in 2002 with lumbar AA due to over 50 lumbar punctures. And in the past 20 years my abilities have decreased considerably and I am now in an electric wheel chair. Just last month I was also diagnosed with severe cervical AA. I'm not sure where that is all going. I hope it does not progress to the brain. Good night all, Anne.

I have it too from too many spinal epidurals. I’ve had cancer even but this chronic pain is like none other. I’m losing hope 🙁 I’m getting serious with my gf and I’m trying to tell her what it’s about. It’s awful and seriously life changing. I just wish I could meet a Dr who was knowledgeable about what we’re going through. Gentle hugs to you

I was diagnosed with AA a year ago. I’m in a lot of never ending pain. I got this from a spinal epidural. There seems to be no help for this disease. I’ve been to many drs and been on lots of meds, most of which I can’t tolerate. I’m at the end of my rope. I can hardly walk. Anyone getting any help with this ?

I am thinking of getting the stimulator in planet in October and I just wanna know how you’re doing with it?

I too have AA and Omgosh it’s ruining my life so bad 🙁 I’m miserable and hurting non stop. I’d love to find someone that could help us. Gentle hugs

I have your condition and I suffer quite a bit and now I’m waiting for a stimulator to be put in my spine in October. Hope it helps. Doctor Tennat says a lot of patients think it’s the best thing. Have you tried it?

Does anybody out there know about the stimulator to help with Arachnoiditis adhesive? I am scheduled to have one put in in October just trying to get some feedback. Thanks, Donald