Arachnoiditis: Looking to talk with others

Pam,
I too have Adhesive Arachnoditis from way too many steroid injections and other procedures that punctured my dura space requiring spinal blood patches to stop the leaking spinal fluid.
In 2013. I had a Medtronic intrathecal morphine pain pump implanted. If you read about Arachnoditis/ Failed Back Syndrome/ Post Lamenectomy Syndrome the gold standard for treatment is a Intrathecal morphine pain pump. They can fill it with just morphine, or a combination of medications.
I'm currently detoxing from my pump after 5 years slowly 15% titration per week. Withdrawal symptoms are something j do not want. So slow goes the reduction.
You should read all you can get your hands on by a doctor, (Dr Forrest Tennant) He opened the eyes of many doctors about Arachnoditis and how to treat it. But.....due to the pressure of the DEA, (Drug Enforcement Agency)
He was forced to close his practice. He was an amazing doctor, he truly had mercy in his heart and soul for his patients
Hope this helps.

Hi- Archie here- I am not on Facebook. The interface feels a bit “too intimate” for my taste— I was amazed with the life details available on this website! A closely moderated environment (like here) on Mayo, is much preferred

U sound like a wonderful, caring, special guy. I have had Arachnoiditis for 25 years? it didn't get really bad until my spine surgeon put all my hardware in. I'm fused from C3 thru my sacrum. I never know what i can do, until i wake up every morning. Can't plan on anything, i'm single & have no life. I was in a wheelchair for 6 years & my biggest fear is ending up, back in a chair. I was paralyzed from neck down with MRSA. spent 15 months in the hospital, rehab & then cervical fusion. Hate to be bearer of bad news, but really no treatment except steroids. I always hear, that i look so nice...couldn't have anything wrong with me. I work out with 5 lb weights & do squats, to strengthen my glutes & quads. Have worked out & been active my whole life. During flare, i couldn't do anything. Hospital situation in Maricopa county, sucks, big time I was an RN for 40 years, & got a master's in Health care admin. Had to quit work after my paralysis. I live in cheapest retirement community in all Phoenix area. however, they are raising rent 8 % a year. I am on section 8, but i will be running out of money in 3 or 4 more years. I get most of my meals here & i know i couldn't function in a regular setting. There is next to no housing for disabled here. I called the housing authority & asked what do i do, when i can no longer pay the rent? Basically, was told, that i'm not alone. & nowhere to go. When the pain gets unmanageable, i end up in ER, begging for Dilaudid. It often takes 6 months, to get an appointment with a specialist & snowbirds make it that much worse. I haven't found any practioner willing to read Dr Tennant's information. They just dismiss it all. This is a terrible condition. bad enough to suffer, but the ignorance, is inexcusable. I was asked to evaluate my last hospitalization.... told them it sucked!! My spinal nerves are a mess. I already have a permanent suprapubic catheter, from my paralysis, now i am having bowel incontinence ( some of the time). I have severe brain fog & severe insomnia. The DEA, prevents pain docs from being able to prescribe decent meds, for pain control. Has anyone gotten an intrathecal pain pump for Arachnoiditis? If so, did it help? My spinal cord is tethered at C6 & sacrum This makes me have pain, down both arms, as well as lower body. Don't know if they can help, since i need pain control from my cervical region, down... it's very hard to be positive, I have told a couple of ER docs that they suck! Wanted to say a lot more...so tired of begging for enough Dilaudid.... Now my current neurologist no longer prescribing controlled substances. I need diazepam &some decent help for sleeping. I am only able to sleep 3 to 4 hours a night & my cognitive skills have gone down by 50 %?? Anyone else having sleep issues. I am feeling sorry for myself, but at this point, have no energy to fight the system here in Phoenix area. No university or research hospitals around here Sorry for the bitching. I held high level jobs in the past, but now, i am reduced to begging for help If u want to email, laurenseavertson@q.com

Hi again Lauren, Archie here—

Still having a tough time I see. Let’s face reality, every case is unique, and yours feels far more complex on its surface than most. Your history is daunting, your current condition is less than robust, and the easy solutions have already been tried just to get you where you are now. So here we are.
When I was younger I thought surgery was the answer. Then I discovered that every surgery changes you in some way— large or small. Then I looked to medicines, only to discover that mostly it’s a marketing crapshoot with profound effects on the patient ( that’s us). Then I’ve waited for research— I still can clearly remember the day I got my AA dx in 1978– the professor found it in a back chapter of a Neurology textbook. The incidence is still so small that we suffer from a lack of resources to study solutions. And finally, we know that there is not one solution but a toolbox of methods to control symptoms, because AA is FOREVER, there is no cure. We need to be strong in our understanding of that reality.
I have an intrathecal pump- Medtronic— and it is a wonderful help. Has allowed me to get off of oral pain meds 100%! Results can vary, but for a pretty well-defined pain profile, it works well. Never again worry about how many pills you have left. To control pain, you get about 1/300 th of the amount of medication, because it is delivered directly to the nerve roots.
Lauren, I’ve tried to communicate that we are with you, understand your issues and live in the same environment of poorly controlled desperation. Please don’t give up. Archie

Thanks so much for the support. I really do appreciate it. Can i ask, do u take any Benzos? I started with my 5th PCP yesterday & of course, he's concerned with possible consequences. Dr Tennant recommends Diazepam. but, no clue who's going to prescribe? I wouldn't mind managing all these symptoms, but i need the Valium. Doctor's don't seem to understand the pain, or need for effective pain management. He started me on 30mg of Cymbalta. I have some pretty severe arm pain as well as the lower half. Will see what new pain doctor has up his sleeve. Start counseling this Thursday, but i really need some hands on support. I am kind of despondent, as about all i can do, is some very basic grooming. Seems like i lose functionally daily Used some edible weed last night & at least i was able to get few Xta hours. May we all a good new years

Hi- Archie here- I am not on Facebook. The interface feels a bit “too intimate” for my taste— I was amazed with the life details available on this website! A closely moderated environment (like here) on Mayo, is much preferred

Hi Lauren -Archie here—

I think I’ve written before that YES, I TAKE BENZODIAZEPINES !! Aplrazolam and Zolpidem. In Florida you have to have them prescribed by a psychiatrist and a letter written by him to your pain management doctor as to why they are appropriate and necessary. CYMBALTA must work for some folks but never for me. Good luck. I NEVER TAKE OR USE STREET DRUGS. THAT IS A SLIPPERY SLOPE. happy new year!! Archie

forgot to say Medical Marijuana helps me a lot. I eat gummies. However, it's very expensive & of course, not covered by Medicare. My pain doc, told me to use it! Guess, now that's it's legal, both Medical & recreational, they can't do anything. Hope your state has it!