Botox for Dystonia?
 

Hi Heather

I'm Frogga, I'm 21 and from the UK and I have full body RSD. I also have generalised dystonia. So does your foot twist and then relax? both my feet and legs are inverted and my feet have twisted upside down. We tried botox in them but my legs had been left too late. However I do have botox on my thumbs and my neck and it has helped. It hurts when the needle goes in and for a day or so after but it does help the spasm. However, I don't know if it would be worth going through the pain of having the botox done if your foot only twists for a day or so? only because botox will not work forever and once you start using it your body becomes accustomed to it apparently (which is why with me it works less well every time).

Hope this is some help

Love

Frogga xxxx

I had botox in my RSD leg a long time ago. I think it was either my sophomore or junior year of high school. They did it while I was under general anesthesia so I didn't feel anything. My foot was severely inverted and didn't get better on its own. The botox (and a tunneled epidural cath) seemed to work. It took lots of torturous PT, but it got better after that.

-Betsy

I had botox injections for my severely inverted foot!! They did it in the office, and only did one.. It ddint work or even do anything so they said it wasnt worth it to do more. But mine RSD and inversion has been going on for 5 years nad did it last year.. so maybe if yours is just starting to it might help!! Its not that bad of a procedure either.. !!

;)
Amber

Yeah when my foot turns in its for a few weeks. And then after taking muscle relaxers for a few weeks it stops. It inverts so I walk like just on the side of my foot so it forces me on crutches.

So you get used to botox and then it stops working??

It has been going off and on for about 4 years now, but I wish it was just starting RSD Angel!! :(


Thanks for the input everyone

i had dystonia in my r foot and they did botox...the out come was great. the injections were very uncomfortable but i went into the office on crutches and walked out. i had to have the procedure repeated once every 4-6 weeks. it was a good way to help me get through the time i needed before i could get my spinal cord stim

Heather,

My Inversion of my foot is permanent!! it never goes away at all. I always have those muscles cramps feelings and pullin on top of the RSD pain. I tried Botox only once and it did nothing for the inversion... The doc that did it, double cked the bottle to make sure he didnt give me saline or lidocaine, but it was botox and he said he never has seen a case so bad and one that Botox wouldnt even show some help to!!!

I walk on the side of my foot almost my ankle for 5 years!! about 3 mos after the surgery that triggered my RSD is when my foot started to turn inward. I went through PT and aqua therapy and nothing helped it at all!!

I would try Botox as it might help you since yours comes and goes!!

:D
Amber

whoa
 

Oh WOW

I woudl cut myu foot off myself if it was like that alllllll the time. I hate it for the few weeks it happens on and off. So maybe next time it does that, I should start botox treatments so it does not permantly go inverted.

Thanks!!

Mine are also permanently inverted and nothing can get them back.. and as time goes on they now twist upside down. So pretty! not.

Have you considered wearing a splint? you could always use an AFO when it twists.

Angel - sounds like you had the same issue with your feet I have - but I find that because the botox was started earlier in my thumbs and neck it still helps a bit.

love
rosie
ps heather were you on skips? xxxx

Skip
 

Hey Frogga,


Yea I am the same Heather as on SKIP. I posted to you about 2 weeks maybe ago but I don't think you must of seen it asking you the same thing. lol....