12 replies to this topic

[ericr]

I have been fighting muscle tone in my right leg. today i went to the dr. and discussed my options to help reduce the tightness i have. he urged against a baclofen pump and increasing my oral baclofen will just make me more sleepy. he did suggest botox injections. has anyone had this procedure done and has it helped reduce spacticity?

[COOL Mobility]

I know of a number of CP friends who have had botox every six months or so in muscles with contracture spasms. Makes a huge difference for them, save one from surgery on her neck due to spasm pulling head over and inching nerve roots.

I'm interested in investigating it too to aleviate atight muscle in hip after hip surgeries.

[Smileyblue]

Thanks for bringing up this topic.. I am very interested in the responses too, as my Neurosurgeon also discussed this option with me, but is still pushing for the baclofen pump..

[wheeels]

I have been having botox injections in both my calves for about 5 years or so, I get them every 3 months as that seems to be the cycle.

I no longer use baclofen anymore, I have spasms still sometimes as the injections wear off over the three months but they are mostly reasonable.

I did go off botox for a year for some drug trials and could totally tell the difference.

[pistol_pete]

wheeels, on 23 June 2010 - 06:39 PM, said:

I have been having botox injections in both my calves for about 5 years or so, I get them every 3 months as that seems to be the cycle.

I no longer use baclofen anymore, I have spasms still sometimes as the injections wear off over the three months but they are mostly reasonable.

I did go off botox for a year for some drug trials and could totally tell the difference.

So would botox work on large muscles like Hip flexors and Quadraceps?
I'm on 100mg a day for spasms, and judging by a lot of other posts on baclofen topics that is quite a lot.
Bloody spasms stop me from accomplishing difficult transfers like floor to chair. I know I'm strong enough, but my legs want to do their own thing.

[Shrike23]

I'm glad I found this topic today. I just called my doctor about the possibility of getting Botox shots for my right side. The last time I was there they suggested that I might be a candidate for them because of my tightness there. The spasms seem to get worse all the time, pulling me off balance in my chair and causing a curvature in my spine.

They are supposed to call me tomorrow to set up an evaluation and hopefully to start injecting the Botox. So far in my bit of research I haven't seen too many bad side effects, does anyone here know of any that would discourage me from getting this done?

Thanks for the help.

Greg

[ericr]

I wanted reply to thisolder post to say I went down to University of Miami/Miami project to see Dr. Rubin a Neurosurgeon who specializes in muscle spasticity. He will be treating me on both my legs with botoz injections in both ankles, my right hamstring and quad and inner thighs. He feels this should really help loosen the muscles and transferring,walking and functioning easier. I spoke with him for over an hour this guy has so much knowledge with sci. i will keep you posted my appt for the injections is sept 14.

[Tetracyclone]

ericr, on 10 August 2010 - 04:36 AM, said:

I wanted reply to thisolder post to say I went down to University of Miami/Miami project to see Dr. Rubin a Neurosurgeon who specializes in muscle spasticity. He will be treating me on both my legs with botoz injections in both ankles, my right hamstring and quad and inner thighs. He feels this should really help loosen the muscles and transferring,walking and functioning easier. I spoke with him for over an hour this guy has so much knowledge with sci. i will keep you posted my appt for the injections is sept 14.

I would like to follow your progress closely as the configuration of difficulty sounds similar.

[warnova]

I'm actually getting them done on Wednesday. Right quad for sure maybe right calf, left quad and or left calf. I don't have much for spasms but spacity is quite severe. Will update ya soon and wish me luck.

Tetracyclone, on 10 August 2010 - 12:19 PM, said:

ericr, on 10 August 2010 - 04:36 AM, said:

I wanted reply to thisolder post to say I went down to University of Miami/Miami project to see Dr. Rubin a Neurosurgeon who specializes in muscle spasticity. He will be treating me on both my legs with botoz injections in both ankles, my right hamstring and quad and inner thighs. He feels this should really help loosen the muscles and transferring,walking and functioning easier. I spoke with him for over an hour this guy has so much knowledge with sci. i will keep you posted my appt for the injections is sept 14.

I would like to follow your progress closely as the configuration of difficulty sounds similar.

[pinkcloud]

[quote name='warnova' timestamp='1285596308' post='184965']


i have been told be a reliable consultant who gives botox that this is most brilliant - and here i was hoping i could have it - but my local nhs hospital have stopped giving them as treatment as its too expensive. Which is absolutley shite....if you can get them - go for it I say. You are very lucky :-)

If it was for cosmetic reasons then yeah I would understand - but for a result of sci? Shocking. Beware of more cuts at an NHS hospital near you.....mind you i am lucky as the cost of my operation would have cost the hospital a lot so I am lucky i wasnt hid in a cupboard and given an injection of lethal-ness

[ulsterkeith]

I am having this procedure done next week,And it occurred to me than when I'm about to have an orgasm my left leg goes into spasm,this might sound stupid but will getting the botox injection stop me from being able to have an orgasm due to the close relation to the spasm and the orgasm ?I will have to ask the doc before this gets done but if any of you have any advice let me know.

[megatrig]

Smileyblue, on 23 June 2010 - 09:09 AM, said:

Thanks for bringing up this topic.. I am very interested in the responses too, as my Neurosurgeon also discussed this option with me, but is still pushing for the baclofen pump..

DEFINATELY try botox prior to a pump!! A pump can be INCREDIBLY!! invasive!

Botox can pick out tiny muscles and big ones so it is very versatile. You need someone who really understands it and can target the rightmuscle groups.

[lonebobseytwin]

on top of my SCI, I also have Cervical Dystonia (Spasmotic torticolis) which pretty much means that I no longer have control over the muscles in my neck and they spasm terribly and get so tight I can no longer move my head.

The only experience I've had with botox wasn't the greatest. You have to remember that they are injecting botulism into the body.
I had it injected into my neck for the dystonia - 24 injections.

I found the botox to hurt more than my dystonia does by its self, which lasted about 2 months, I also couldn't hold my head up for the duration of the 3 months, which made moving or eating not so fun.
They had to place me on steroids because I had so much pain, i think it was too many injections and my body felt it was being assulted.
and injecting in is not an exact science, and they must inject the muscle in several places and it does not move through the muscle as other injectables do like lidocane.
so remember if you decide to do the botox any side effects will be yours until the 3 months is up.

and it was one of the worst 3 months I've had, needless to say I will not be doing it again.