Quote:
Originally Posted by dshue
I've a maddening situation, in which I'm thinking getting some poison shot in to me may do some good.
As I've mentioned here before, I had a diagnostic lumbar puncture performed back when I was agressively trying to find out what the hell was going on with my body, when post surgery, the burning grew and grew (which started in my abdomen, and since has branched out all over). Big mistake.
My sympathetic nervous system is just way too wound up, and since the LP I've been afflicted with what feels like a muscle spasm in my skull, just on the right side, reaching to the top of my head, sometimes going down into my face, again only on the right side. My throat also constricts, sometimes scarily so, again just on the right side (the other of end of my spine has my right glute regularly spasiming, but that I can live with). Any physical activity greatly exacerbates the problem, and has left me incapacitated occasionally over the last nine months or so.
This pain is at times worse than the burning I get throughout my body, but it's interesting, there is always one of two going on (I'm just lucky I guess), the pain gatekeeper only letting one signal into my brain at a time.
So we were thinking that a few strateically placed shots of botox might be of benefit. My doctor is serious research guy, not a cosmetic surgeon type, at a major hospital. I initiated this idea with my neurologist, and the botox guy sounds like he knows what he's talking about.
What I'm asking is, does anyone have any experience with botox? If so, did getting the shots make things better? Did they make things worse (a scenerio which weighs heavily upon me)?
-- Dennis
|
Hi Dennis,
I'm sorry you are going thru this very difficult situation and decision. I attended the RSDSA annual meeting this year and asked the Doctors and Scientist (the open question part) if there was a connection between my RSD -13 years and my trigeminal nerve disorder, diagnosed about 4 years ago. The TN pain is very severe and goes down in my face. They said 'no,' I'm just 'unlucky' At one time there was a RSD patient on the old forum that also had TN and had a surgical procedure to stop the TN pain and it got worse. He really went thru a difficult time.
I also have the swallowing difficulty at times. It is scary. Thankfully it is not all the time.
I'm going to try HBOT. My Dr. just built two clinics with one in each.
Physical Therapy, Massage Therapy, and Swimming are the things that have kept me mobile. My neuro, adjusting my meds, is also a phychiatrist and Pharmacologist. He has helped me the most, been seeing him the last 5 years..There was a post I believe, Friday, about inflammation and diet. I'm now trying that 4 days now, no glueten, milk products, sugar, caffeine, alcohol, building up the immune system. I also have fibromyalgia, so it makes sense to keep the inflammation down.
Hope you find some relief. Sorry can't help with the Botox question. Take care, loretta