3 replies to this topic

[wme1221]

A couple of years ago I got some advice on this forum about a baclofen pump my neurologist had discussed, and I decided to put it off and try some lifestyle changes. Now I've lost weight and gotten into better shape, but my mobility still leaves lots to be desired. I have cerebellar degeneration which shows up as spasticity and ataxia--I walk, but others think I'm drunk, an inconsiderate jerk, or a drunk inconsiderate jerk. Also I'm real slow. My neurologist never has quit mentioning the pump, and I'm considering exploring it further. I live 100 miles from my doctor and I'm real concerned about things like changing the dosage and getting it refilled. Thoughts?
Thanks, Bill

[brackman22]

I would kill for my pump, bill. It is truly a life changer. I was taking 80mg. baclofen and 30mg. valium every day before the pump. I have an extremely high dose but still only need refilled once per month. Most can go for almost two months. As for refills, I have a nurse that comes to my home to fill it. i would have it even if I had to go to my doc to get it filled.

BRETT

[wme1221]

Had a very successful trial last week and am going to have the pump implanted as soon as I can schedule it. I'm really looking forward to it--just hope I can avoid the headache I had after the trial!
Best to all, Wm. E.

[Big Valley]

I don't have violent spams but my legs and ankles will tighten up and want to extend if I have been in the same position for a while. So if I lean back in my chair and let my legs extend just a bit they will go ahead and straighten out and hold there for about a count of 10. I use this as a means of keeping tone in my legs.



14 years ago in rehab I hated it. Body was moving when I didn't want it to. Surgeon was all but ready to put one until I changed my mind. Glad I did back then. Now I know how my body better and the spasms are not a surprise when they will happen.



But it does sound like good idea in your situation.