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Arachnoiditis: Looking to talk with others
Spine Health | Last Active: Mar 11 12:58pm | Replies (458)Comment receiving replies
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
Replies to "Hi Lauren—Archie here— Well, I just had my daily oatmeal so I guess not everything is..."
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
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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.