Hi It has been recommended that I get a baclofen pump as I have CP and have increasing stiffness/spacticity. Over time I have gone from not needing assistance to walk to using a cane all the time and walking very slowly and unsteadily. I am worried that reduction in spacticity will decrease functional mobility and also bladder and bowel issues as I already have some constipation issues and nerve damage so don't get much notice that I need to go to the bathroom so it needs to be predictable ie at home before work. Also concerned after reading all the horror stories. Thanks in advance.
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Baclofen Pump Benefits With Cp
Started by
DebbieD
, Jan 16 2012 01:31 AM
4 replies to this topic
Top#2
Tetracyclone
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Posted 16 January 2012 - 02:10 PM
Doctors should be testing your response to oral dosage. Has that been done?
Look! It's a snail! It's a sloth! Able to creep short distances before lunch!
#3
megatrig
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Posted 16 January 2012 - 04:32 PM
It is INVASIVE!
A pump can be great ... BUT .. it has sideeffects!
It can/will relax muscles and spincters below T10. Where intathecal baclofen ius introduced to the spinal canal.
So bladder and bowels MAY be affected.
If you use spasticity to walk ... your spasm will be reduced so walking will be affected!
Oral medication seems a first and better step
A pump can be great ... BUT .. it has sideeffects!
It can/will relax muscles and spincters below T10. Where intathecal baclofen ius introduced to the spinal canal.
So bladder and bowels MAY be affected.
If you use spasticity to walk ... your spasm will be reduced so walking will be affected!
Oral medication seems a first and better step
Life is just to short not to have fun!
#4
davebahm
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Posted 16 January 2012 - 08:21 PM
Hey Debbie!
Your disability and functioning sound very similar to mine, though CP does affect each person differently. That being said, be very careful about this decision. Can they do a test run first? When I first considered getting the pump, the doctor injected Baclofen directly into my lower spine. An hour or so later it started to take affect, and I didn't like what happened. My legs were more flexible, but I couldn't move them very well and felt weak. After about 24 hours it wore off and I was back to "normal". For some reason I was convinced that having the pump would work well, because the Baclofen flow would be regulated and steady. Also, with exercise and stretching I would regain strength. Well, in looking back over the past five and a half years, I was wrong. All this time we experimented with the flow, which has been relatively low to what some others' pumps are set at, but I've never been happy with this decision. I've uttered more profanity in the last five years than in the rest of my 44 years, and have wanted to die so many times. If it wasn't for my wonderful wife, I probably would have attempted suicide during the first six months after the surgery because I lost so much function and felt trapped. My bowels were unpredictable, urinary functions affected, and problems with sex.
I've learned to deal with all the limitations, but pretty much everything that involves moving my arms, legs and stomach muscles has become more difficult, even impossible, compared to pre-surgery. Still, I've wanted to give this pump a chance. But not anymore... I'm done.
A couple of months ago, I fell down in my house and nobody else was home. I tried every trick I knew to get off the floor and couldn't, mainly because I couldn't move certain muscles in my legs. My cell phone was in another room on my desk, so I was trapped until my wife came home over an hour later. At that point I decided I was done with this stupid pump. However, I'm a patient person and wanted to get started on physical therapy for stretching first, then tell my neurologist (she has been anything but helpful the last few years, and only recently has admitted this treatment works better for kids than adults because kids' nerves can work around the weakness). Then the holidays hit, my insurance switched, then I realized my pump refill date is later this month (my original goal was to have it removed before this refill). So, my goal is to have her slow my pump down gradually, then have it removed before the next refill, which would be around June.
Of course, if I completely stiffen up once the pump rate gets reduced (and the stretching doesn't help), then I'll have to change my plans. But I think that any benefit this pump offered came early on. My muscles are just as stiff now as pre-surgery, and I can't move very well. Also, I feel tired and weak almost all the time.
David
Your disability and functioning sound very similar to mine, though CP does affect each person differently. That being said, be very careful about this decision. Can they do a test run first? When I first considered getting the pump, the doctor injected Baclofen directly into my lower spine. An hour or so later it started to take affect, and I didn't like what happened. My legs were more flexible, but I couldn't move them very well and felt weak. After about 24 hours it wore off and I was back to "normal". For some reason I was convinced that having the pump would work well, because the Baclofen flow would be regulated and steady. Also, with exercise and stretching I would regain strength. Well, in looking back over the past five and a half years, I was wrong. All this time we experimented with the flow, which has been relatively low to what some others' pumps are set at, but I've never been happy with this decision. I've uttered more profanity in the last five years than in the rest of my 44 years, and have wanted to die so many times. If it wasn't for my wonderful wife, I probably would have attempted suicide during the first six months after the surgery because I lost so much function and felt trapped. My bowels were unpredictable, urinary functions affected, and problems with sex.
I've learned to deal with all the limitations, but pretty much everything that involves moving my arms, legs and stomach muscles has become more difficult, even impossible, compared to pre-surgery. Still, I've wanted to give this pump a chance. But not anymore... I'm done.
A couple of months ago, I fell down in my house and nobody else was home. I tried every trick I knew to get off the floor and couldn't, mainly because I couldn't move certain muscles in my legs. My cell phone was in another room on my desk, so I was trapped until my wife came home over an hour later. At that point I decided I was done with this stupid pump. However, I'm a patient person and wanted to get started on physical therapy for stretching first, then tell my neurologist (she has been anything but helpful the last few years, and only recently has admitted this treatment works better for kids than adults because kids' nerves can work around the weakness). Then the holidays hit, my insurance switched, then I realized my pump refill date is later this month (my original goal was to have it removed before this refill). So, my goal is to have her slow my pump down gradually, then have it removed before the next refill, which would be around June.
Of course, if I completely stiffen up once the pump rate gets reduced (and the stretching doesn't help), then I'll have to change my plans. But I think that any benefit this pump offered came early on. My muscles are just as stiff now as pre-surgery, and I can't move very well. Also, I feel tired and weak almost all the time.
David
#5
DebbieD
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Posted 30 April 2012 - 01:47 AM
Hi David
Thanks for your response - it makes me even more reluctant. Where are you at now ? I am still waiting for the trail because there was a mess up with the referral but that is another story.
Thanks for your response - it makes me even more reluctant. Where are you at now ? I am still waiting for the trail because there was a mess up with the referral but that is another story.
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