Botox used for distonia on right side of body.

I had a stroke when I was 5 years old, noone knows why? I don't mind it but recently my distonic movements have torn my rotator cuff and has begun to affect my quality of life. So off to the Rehab I went, again, I was a defiant child. Rather independent and didn't feel I needed any help, the arm and leg would go limp while I slept, like every sleeping body does until the last couple years. It's been waking me up, twisted and usually looking pretty demonic, it's enough to scare Miss Independence right into the rehab center in Halifax NS. They did a full 2 hour, hands on exam and I can read Dr's like you wouldn't believe. I thought, "oh no they're looking at me like I'm a specimen." I laughed at them and said, "I'm not a fish in a fishbowl, feel free to discuss with me what you see.", as they were using medical jargon, using numbers to identify how tight everything was. So we came to the decision that Botox, a parkinsons drug that sounds like cinemet and another injection should help. I remember getting it done 22 years ago but they didn't really know they over did it and I never went back. I snarled at my poor Mom and now I'm a hurting unit lol. I had to feel it first I guess, my Mom tried her best to make it so I never felt it but sometimes you have to feel the pain to do something about it... I tore my rotator cuff so it is time lol. My question for you guys is; has anyone ever tried botox for chronic pain/distonic movements? Contractures? Or did I not describe it well enough? I call the movements "demonic", it makes me laugh and ya gotta laugh. I know it won't cure all my issues, Crohns and back injuries from a car accident 2 years ago but I know their not targeting that woopsie daisy. I flipped off the rd, black ice, hit a culvert head on and pitched end over end . I'm lucky to be alive, I can deal w compression fractures in lumbar 2 and a ruptured disc better than I can this arm as of lately lol. I wonder if the work they are going to do will calm the back pain as well? If the arm can't twist up behind me I bet it will help? I dunno, I'm just looking for answers :)

Welcome to Healing Well. Sorry to read what you have on your plate right now. Botox is used to treat many different medical issues & often used to help with severe muscle spasms. I think it would be worth trying the Botox. You have nothing to lose & possibly something to gain.

Let us know what you decide. Take care.

Welcome Bubba to the forum at HW. Love your sense of humor and it's a trait I have seen often when someone young experiences a catastrophic injury or illness and spends countless hours with medical personnel. Seems those kids either learn to laugh rather than cry. Too bad as adults we can't seem to learn that!

Sinemet, very old time med used to treat Parkinson or Parkinson like movements. Not sure how well it worked out. Know it was never a cure but intended to slow progression of those involuntary movements and it must of seen some success since other newer more advanced meds have come along they still revert to Sinemet at the onset of symptoms.

Our world of chronic pain is similar in any other rare disorders of the medical varieties that have no one fix magic pill or treatment. It's a trial and error situation for many of us. Rules usually what works for me won't for 2/3 of the others or what works once for me won't work but 1/3 of the times.

As Susie said what's to lose? You get to the point when dealing with CP and I have said this many times before, if someone says burying yourself in sand up to your neck would give you a few hours relief then I'm off to home depot to buy a shovel!

Non CPers and even most Dr's just don't get it.

Anyway good luck with your injections and keep us posted since every post here's archived your trial could be valuable to someone else down the road.

Merry Christmas to you too Bubba! Pats to your doggie!