Hello Everyone!
Has anyone ever heard of this treatment or tried it for AMN? I will be having my trial for this procedure next week and I am just wondering if anyone else has tried this. It is was my neuroligst is suggesting is the next step to help deal with the pain I am in every day. Then will also allow me to reduce the intake of the amount of medications I take daily to coop with AMN.
That sounds amazing. I’ve never heard of it. Please keep us posted. I wish you well.
My mum (AMN) had it implanted two years ago (Italy/NHS). Sadly in her case there was no real benefit. BUT her case was quite complex. The procedure was easy and painless enough. While she was in hospital I had the chance to talk with other patients and theirs were all success stories. Best of luck 🍀🍀🍀
A friends husband, who doesn't suffer from ald , but has bad back pain has this. He finds it helps but not 100%.
I had one implanted three years ago in the hope that it would alleviate some of my severe neuropathic pain in my feet and legs. I tried several different settings, and really gave it a good chance. Unfortunately, it ended up causing me additional pain (in the area of my lower back where the battery pack was placed) and didn't alleviate the pain I already had, so I had it explanted six months later. I'm sorry for the bad news, but this was just my honest experience.
I know this much. TENS works very well for me for muscle pain. Literally as soon as I turn it on, the pain stops.
There are all kinds of electrical stimulators for all kinds of diseases.
TENS, CES, DBS, TCES, TCMS. And that's off the top of my head.
Anything that means less drugs is worth at least a try.
Update: I have finally had the stimulator surgery and my experience is that the "stabbing, burning and aching pain" is gone. My muscles are still very tight and have not changed much but I am not in near the pain I was in before the procedure. That is my goal Monkeybus is to try and lower my "drug/pills" I am taking as I am only 33. my brain feels more clear, I am not reaching for my pills every morning, although I am still taking them when needed.
I think that I would give this a great review as I am 2 weeks in after the surgery (19th). sorry for the delayed response.
33 with AMN - Introduction
No family history of AMN
AMN - Psychological Issues?
AMN and Leukodystrophy
