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Adhesive Arachnoiditis & the Effects on Walking

Spine Health | Last Active: 6 days ago | Replies (67)

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@archie2

Hi MerSun! Archie here. I too have AA, and thought your comment was very interesting. I mean, I’ve been in treatment since 1978 for AA and got an intrathecal pump in 2009 that really helped with pain. But these appliances like a pump or a stimulator don’t fix STRUCTURAL PROBLEMS! So if you have a defect at L5-S1 say, that causes foot drop, you’re not going to have the foot drop fixed by putting in a pump. I guess what I’m saying is that with many of us, our experience has been that we have to fight the war on multiple fronts—this requires having medical resources in more than 1 specialty. Neurology, Orthopedics, Bio-Mechanics, Pain Management, Psychiatry/Psychology, Rehabilitation, etc.
As an example, in addition to my pump, I’m having a stimulator installed to accommodate the changing AA symptoms. As an adjunct, I’m still having injections and will soon have ablations in my neck. I just had a Neurological consult that suggested increases to the levels of meds from my pump. So it all goes together.
The hope I have is for folks in our group to think more holistically— be your own best advocate, KEEP A DIARY, and try to get procedures that make you measurably more comfortable. Heck, if the cognitive stuff works for you, add it to your arsenal!
AA is permanent and progressive— but that doesn’t mean that I still don’t want to fight for control!!
Best, Archie

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Replies to "Hi MerSun! Archie here. I too have AA, and thought your comment was very interesting. I..."

Hi, Archie!
Thanks for your reply.
I'm sorry, I should have been more clear - I did not expect the stimulator to fix my numbness/weakness/foot drop. I meant that, oddly enough, I regained some feeling and ability to control my right leg once it was placed; however, the foot drop is still very much present despite this. I was surprised that my doctors aren't interested in knowing why the stimulator helped with this. I joke and offer myself as a free test subject! I do have a GI, urologist, physical therapist, and pain management specialist. I am also well known in the casting and manometry clinics, as well. Sadly, none of these doctors treat AA and only my pain management specialist has even bothered to read the bulletins and research abstracts I bring in. The others basically see me once or twice a year and watch this progress with me. Basically, I'm paying medical spectators. 🙂

It is quite helpful to read what others deal with, as it gives me some guidelines to adjust my expectations. It is both a relief (I'm not alone!) and a sadness to know that others struggle with such basic things as balance and walking. But I do appreciate the attitude of hope and sometimes humor I see here.
Cheers!

Archie. I am not sure where my email went.? Was trying to let u know about my attempts to get a pain pump for my symptoms.... More frustration. I have no nerves left to ablate & it's not safe for me have any injections, & probably not a candidate for the pump. What's left to try? Too much scar tissue, & possible complications from leak CSF I have met with new counselor & she said she read up on AA. I told her that it gets very lonely & not much understanding about chronic illnesses in the general public. She said i should try dating, with other disabled people. Get the feeling, she didn't read the right stuff about AA Just think that most people don't get chronic, severe pain. One of my lunch mates, asked me if i was better, after seeing a new doctor. Hard to explain things & i have stopped trying. At times, i probably haven't been as upbeat, or pleasant. I tried apologizing to a friend & now we're no longer friends after 11 years. I like being in control, as much as the next person, but very discouraged. Maybe it's my brain fog. Now experiencing bowel incontinence... what else