Disabled people
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Baclofen pump for walking?

SaranoyaSaranoya Member Posts: 2
edited May 2014 in Disabled people
Hi everybody,

I'm twenty-seven years old and I have spastic diplegic CP. I also fell and broke my right tibia two years ago, which has left me with a pretty severe right knee contracture. Doctors can't seem to agree on the cause of this contracture. It might be scar tissue within my knee joint (I've had two arthroscopies to remove said scar tissue, but while the mobility of my knee is now marginally better than it used to be, I still can't put my right foot on the floor at all while in an upright position). It might be that when the original surgeon put the pieces of my shattered knee joint back together, he failed to align my upper and lower leg bones correctly, which would mean that my knee is now mechanically incapable of bending or stretching all the way. This theory seems to be supported by the fact that, since the original fracture, I've torn both the lateral and the medial meniscus in that knee, despite having been a near-fulltime wheelchair user all that time. But then, it could also "simply" be spasticity, and the associated shortened tendons, preventing me from stretching out my knee.

The last doctor I've seen about this told me that he thought the latter was my problem. He had a new night splint made for me, which has a spring in it to help stretch my knee out progressively. It doesn't seem to be working, but then I also can't seem to wear the splint all night with any regularity. It hurts too much, and not where you would expect it to hurt (which is to say, I am very used to what it feels like when a shortened tendon is being stretched, and it is *not* that kind of pain, nor is it anywhere near the spots I would expect to feel that kind of pain). Which leads me to think that there is still something mechanical going on. But no medical professional seems to put much stock in that particular theory.

Anyway, since the splint wasn't doing the trick, the doctor suggested trying Lioresal (the oral version of Baclofen). We ultimately decided against that. I took Lioresal for about two years in my teens, and around that time I also had a bout of severe depression. I was told back then that depression could be one of the side effects of oral Baclofen, and to stop taking it.

So that led to the tentative suggestion that maybe, a Baclofen pump might help.

I am unsure whether to go for this. The stories I read from people in the internet all seem to involve trying to lessen spasticity-related pain, making it possible for severely spastic people to be cared for adequately, and/or getting involuntary movements under control. I have none of those problems. If I were to go for a Baclofen pump, it would be in hopes of being able to walk without crutches again (perhaps just inside the house, but that would still be a huge improvement).

I've never heard of anyone who couldn't walk independently before the Baclofen pump, but could do it after. Does anyone here have experience with a scenario like that?

Thanks in advance,
Sara

Replies

  • nicebootsniceboots Member Posts: 196 Pioneering
    Hi I'm 25 and have diplegia cp. I had really bad spasticity around my left knee after breaking my thigh bone in a motorcycle accident.
    What helped me was being put on a low dose of diazepam at night, and stretching out with a leg gaiter. I was on the diazepam nightly for two 4 weekly periods, I still wear the gaiter as much as I can over night to give my hamstrings a good stretch, I also find it helps with the occasional night spasms, and I get a more restful nights sleep with it on. but that could be because I have wor them on and off since I was tiny....
    I am intrigued to find out more about the night splint you've described, I am looking for a new night splint as my gaiter needs replacing.
    hope this helps
    chris
Sign in or join us to comment.