Help
Stumbled on this forum in the course of doing some research. I'm a little hesitant to post here, because I feel out of place. I have a mild neurological condition (cerebellar degeneration) that shows up as spasticity and ataxia--affects my speech, balance, and mobility. Am able to walk pretty well unaided (my doctor's told me I have a cane in my future), but I have pretty frequent discomfort and mild spasms in my lower back and legs. At any rate, my condition's luckily not debilitating yet.
Monday I told my neurologist that I'm unable to tolerate oral baclofen. He mentioned a pump--said on one hand he was hesitant because I'm doing pretty well, but on the other he'd had patients similar to me that had good results after getting one. I know nothing about that treatment except what I've learned since then, but my initial response was that the pump sounded like a mighty extreme response to a less-than-severe problem. What I've learned since then hasn't changed my mind much. We left it that he'd discuss it with some of his colleagues and we'd wait and see. Anybody know anything that might be of benefit to me? Any input will be appreciated. Thanks.
Best, Bill
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Seeking First-hand Info On Baclofen Pump
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#2
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Posted 04 September 2005 - 01:19 AM
Hi Bill....and welcome.... 
I hope your 'out of place' feeling will soon disappear. If you have spasms and are considering a pump, then I know you'll get a lot of good first-hand testimonies from the members here. I, however, don't use a pump, but I wanted to be sure to welcome you and assure you that you've come to the right place.
There is one bit of wisdom I can pass along, however, coming from a lifetime experience with spinal cord problems and surgeries/procedures, and that is...if it feels like overkill...or the 'cure' seems worse than the 'ill'...then it probably is. Ultimately, only you can know and decide what is overkill.
Don't you just hate those life decisions when you're the only one who can know which road to take?
I hope your 'out of place' feeling will soon disappear. If you have spasms and are considering a pump, then I know you'll get a lot of good first-hand testimonies from the members here. I, however, don't use a pump, but I wanted to be sure to welcome you and assure you that you've come to the right place.
There is one bit of wisdom I can pass along, however, coming from a lifetime experience with spinal cord problems and surgeries/procedures, and that is...if it feels like overkill...or the 'cure' seems worse than the 'ill'...then it probably is. Ultimately, only you can know and decide what is overkill.
Don't you just hate those life decisions when you're the only one who can know which road to take?
* * * * * * * * *
Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.
Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.
#3
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Posted 05 September 2005 - 02:53 AM
Bill
I have a fairly new pump and have had problems adjusting to it.
My advice, look into it and don't discredit it yet. I had trouble taking oral baclofen too.
If you want- do a trial and see if it works for you. That is the first step.
Good luck.
Lori
I have a fairly new pump and have had problems adjusting to it.
My advice, look into it and don't discredit it yet. I had trouble taking oral baclofen too.
If you want- do a trial and see if it works for you. That is the first step.
Good luck.
Lori
#4 *Bill Baldwin*
Posted 05 September 2005 - 01:22 PM
Yeah, I do hate decisions that I'm the only one who can make. That's why I'm trying so hard to gather info up front. Another question that's crossing my mind--does waiting make the treatment less effective later? Thanks for the input I'm getting--
#5
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Posted 05 September 2005 - 03:29 PM
Lori's right,
Investigate it and then consider doing the trial because it will really give you some insight into what having the pump could be like especially since its a decision you have to make. If you decided not to do it now but want to do it later the Baclofen will be no less affective.
Gretta
Investigate it and then consider doing the trial because it will really give you some insight into what having the pump could be like especially since its a decision you have to make. If you decided not to do it now but want to do it later the Baclofen will be no less affective.
Gretta
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Posted 17 September 2005 - 05:43 PM
Thanks for everybody's input. FYI, I've decided not to get the pump at this time. I'm doing pretty well without it, and I feel like it'd be best to wait until it adresses a major quality-of-life issue (if that ever happens--hope it doesn't). Best to all--Bill
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Posted 25 March 2006 - 03:18 PM
Update of sorts--I had a routine visit with my neurologist last month and told him I've decided not to get the pump now, if ever. Just seemed like the problem wasn't severe enough to justify the potential downside. I'm still able to get a fair amount of exercise (but I'm not going to the Olympics) and feel like that helps me a lot.
--Best to all, Bill
--Best to all, Bill
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