Hello all, I hope you are well. This week I saw a neuro-rehabilitation specialist in Seattle for the first time. She wasn't able to give me any new recommendations for pain management, but she recommended botox injections in my leg muscles for spasticity. She said that the botox should be able to reduce leg spasms or myoclonic jerks, without jeopardizing my ability to walk.
Has anyone had this done? In what parts of your legs/feet? I'm not opposed to trying it, but I am a little concerned that it could make my mobility worse. She also recommended that I try leg braces, which I'm absolutely not opposed to trying. Thanks for your input!
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Aaron98
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My spasticity specialist, who does do Botox injections, recommended an AFO, which I have but haven't used, and through the gate analysis they determined that this would help on one leg, that locks with each step currently, and a knee brace for the other leg which locks when I stand still. But he didn't think I needed the Botox because my general spasticity isn't too bad, fortunately for me. My mother, who the defective gene came from, had to have Botox injections following her second knee replacement because her leg spasms were so bad they pulled the knee out of joint. But, from what I saw, the Botox had not very nice side effects and didn't do what it was supposed to. This was back in the 90's though so things are a lot more advanced now! Of course everyone's experience with it is going to be different, and if the Doctor doesn't get the shot in the right place it won't work. I just thought I would let you know my thoughts.
I just got the botox shots the first of the month. I had big hopes for them. I had them in both legs and lower back. That first and second day was great , I was able to walk without a cane and felt balanced. But the next week or more was using a walker had hardly any movement in either leg and walking took slot of effort. I'm scheduled to do this again next month but have decided I don't think it would be a good thing.
I had Botox in both legs nearly 10 years ago and it definitely wasn't for me. It made my legs very weak and it took about 6 months before I felt better. I have used use FES here in UK for 9 years. It has helped my walking and initially some of my back pain which was due to the bad way I was walking. Unfortunately it has stopped helping my back pain now but still helps lift my feet so I don't trip as much as I would.
I take Lyrica at night but am unable to take it during the day due to the side effects so I haven't found anything that relieves the pain as yet.
I had this done twice! The first time they injected 100 CC's into each leg. It works for about 3 weeks and 1800 owed after insurance, I was in a little shock. I went to a different doctor at a pain management place in Grand Rapids, MI. She did 100 CC's per legs again and I stressed to them I had no money to pay them for the services.. They told me no no it is all going to be covered.. To say the least, it was not covered, I had zero relief and another 2000.00 dollar bill.. If your insurance is going to pay for it or if your deductible is covered then I would for surely try this, as it helped me for 3 weeks or so..
The other issue is that insurance only allows you to go in every 3 months or something I can't remember..
I could go up and down the stairs with no issues at all! and it was like nothing ever happened..
Although just remember insurance only covers this every 3 months.. So to me having 3 weeks or soo of relief wasn't really worth 2,000 dollars, because I couldn't go back every three weeks for more because all insurance plans will not cover it.. then it is over 5,000 every time..
Thanks for all the replies, everyone! For those of you who mentioned that it made your legs weaker, could you please elaborate on this? Were you still able to stand and walk, or did it dramatically affect mobility?
At this point, I think I'm willing to give it a try. I just hope that it doesn't make my leg muscles weaker than they already are. I cannot afford to have significantly worse mobility for a few weeks or months (or however long until it wears off).
I also wanted to ask, was it helpful for pain? Or does it really just help with spasticity?
I could stand but it relaxed my muscles too much. I only had 50cc in each leg. I was walking with 1 stick at the time but it greatly reduced my walking distance and made me very fatigued.
Thank you for the reply, Cherie. I am scheduled to get the injections on Friday of this week. I'm a little nervous, just because of what has been mentioned here about leg weakness afterwards. Hopefully it will not be too bad.
Were you able to drive your car fine after the injections?
I’m not sure why this popped up in my email but I was not diagnosed at the time of this posting. I currently get injections in my legs every 3 month. I’ve been doing it for nearly 3 years. I get the treatments from a clinic at Vanderbilt University. The injections are administered in multiple locations on my legs, front and back. I’ve had a couple rounds that were not as beneficial but I attribute that to what I was doing physically during that cycle. I’m at a point where I can feel the tightness affecting my gate and the turning in of my legs, not just my feet. The needles are very small and about 3-4” long. Due to the hardness of my muscles, it’s not uncommon for them to bend at least one needle when penetrating. I don’t really feel much but if they hit a nerve or a spot that’s sensitive I will have a serious leg jerk. They use an ultrasound type machine to see exactly where they are injecting the Botox. I’m at the end of my current cycle and have fallen multiple times this week due to my right foot hooking my left leg. The curvature of my legs when I lay on my side is really bad from the knee down to the point my foot is suspended about 4” off of whatever I’m laying on. It’s substantially better the first 3 weeks after the treatments. I highly recommend the treatment but by a specialist that can be precise in where they are injecting.
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