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.

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

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.