Arachnoiditis: Looking to talk with others

Google dr forest tenant. He’s passed away now but has tons of info. Also he has may videos on YouTube

I have found this website helpful. Dr forest tenant has also written books available on Amazon and has videos on YouTube
https://arachnoiditishope.com/

There is a new drug, Ziconotide, but must be administered via intrathecal catheter. I’m not putt anything back into my spine, that’s what caused all the problems in the first place.

I am dealing with same thing. Had my first mri in 5 years that showed it this spring. I have also recently been diagnosed with auto immune

I was diagnosed in 2015 and it has gotten really bad. I also have severe spinal stenosis. I had back surgery (my 4th one) in Sept 2024 and everything was fine until the beginning of August. Now I have this shooting oain going down my right leg that NEVER stops and I can't feel it right foot. I am absolutely miserable and tired of dealing with this.

I have had AA for years. But never like now. 3 weeks, lost all bowel control. I don't mean to repeat myself... But i am a mess. Loss bowel control, has caused me more problems with drug resistant UTI ( permanent supra pubic catheter) My kidneys, aren't good. I am a senior, on Medicare & Medicaid. Not one MD, has been willing to look at Dr Tenant's protocols. Even printed them up & tried to give to them. My PCP now handling the oral Decadron. I am afraid i'm one of those patients, who has gone down hill (with no return) I am in agony. Taking Percocet 10 mg TID. I just got out of the acute care hospital, for another UTI. Fortunately, this one wasn't drug resistant. Most are & i have to go the hospital for 5 or more days IV. I have only slept a very few hours from Steroids. I can't even get my thoughts together. Can't get out of bed. Hospital's only concern, was that i shouldn't get any stronger pain relief. Had several doctors, tell me i had no reason to be in pain....When i asked, they knew nothing about AA... Had admitting doctor give me Dilaudid. But some one came in & told me no pain mgt...I did get the Percocet. I was hallucinating & guess was from lack of sleep I was almost screaming out from pain. So i went to another Pain Mgt place , Dr was very nasty. He accused me of everything illegal that you can do with narcotics. By the way, was with same pain mgt for 14 years. never once had any problem with my narcotics. I know all about the Opioid crisis etc. Wasn't able to defend myself. So now new, nasty DR suggesting i get more steroids, from caudal region. My hardware is inflamed up to my arm pits. In the past, i know they tried this without success. I have massive scar tissue & it's impossible to get the medication, up, where it needs to be. Anyway, it takes 6 months to get into a neuro & they are also telling me, nothing but steroids. On Medicare & Medicaid Have 20 hours of help, but no one wants to work for the wages around here in AZ. I can't pay for treatments not covered. I live in a retirement community, with annual raises of 8 & 9 percent. Been here 18 years & they are good to me...but worried that i will end up on the street. This is the cheapest place in AZ & i am on section 8, but still subject to raises. They provide good food & will pick me up, off the floor, if i fall. Anyway, I can't sit up long enough to do anything.

forgot to say, that my kidneys are no longer very good. So unable to take most ant inflammatory drugs. Had lot pain mgt, long ago. My recent CT Myleogram, didn't show anything pressing on my cauda equina. Was originally seen at the Barrows ( premier place, people come from all over) It's a 6 month wait for any neuro. Plus they refused to help me with steroid tapering etc...Said it was too complicated. So my PCP, who is terrific, is helping. I went into the hospital for the Arachnoiditis flare & another UTI. I am not able to get out of my apt now. I have never been confronted by a pain Mgt doctor, as i have never done anything to warrant it. I understand what's going on....am so depressed & discouraged. Will try to self refer for Psych help

I have 28 stairs from basement to bedroom and it's killing me.

No leg sreength.
To the person who had 7 injections, these Docs love those injections cuz they don't want to write narcs. Don't ever let those idiots near your back.

Why not your back?I get back injections every year for extreme back pain.

Is it possible for your hands to hurt and be stiff and sore from AA around the L3-L4 area?