does the baclofen pump work?

chester · 12-06-2002, 12:56 PM

i am t 6-7 complete, and my doctor would like me to consider the pump. i take 120 mgs of oral baclofen and 24 mgs of zanaflex a day, the doctor said she don't want to increase my meds because i have problems staying awake as it is now, and i have difficulty with memory, she feels is from the dose i am on now. she said the pump would be very beneficial so i wouldnt be so drowsy. my legs spasm from stimulation, my legs will not cooperate when i transfer into a car, etc. are you happy with the pumps and how long does it take to show an improvement ? any advice will be great thank you

TD · 12-06-2002, 02:00 PM

I am a T4 incomplete and have had my pump since 1995. I suffered a tremendous amount of stimulated spasms (I believe the medical term for what we have is allodynia) before getting my pump. Does it work? Most definitely!! For spasms AND for pain. I was taking 160 mg of oral baclofen a day and can attest to the fact that it messes with your thinking processes. Confusion, memory problems, and drowsiness are just a few of the side effects I did not like. My wife says it made me mean as well.

It took me around 6 months of raising the pump dosage before I began realizing its beneficial attributes. Over that period of time I went from 160 ug (that is micromilligrams) to around 420 ug before my spasms became manageable. Over the next 24 months I slowly raised the dosage, keeping it at a point where I still had some spasms but was able to transfer and sleep with only mild difficulty. I leveled off at about 700 ug and was at that point until recently when I had to raise the dosage to 800 ug. From what I am told I still have a long way to go before I reach maximum effectiveness.

If you have any other questions just post them here and if I do not have an answer there are other pump users here who may have them.

"And so it begins."

whiterabbit11 · 12-06-2002, 06:18 PM

Chester,
I'm just another satisfied customer. My spasms became uncontrollable after 30+ years. I was hospital bound for the last few weeks cuz my BP went up out of sight and I had to live on Demerol. As soon as I fired my Dr.my new one put me onto the pump right away. I had no life until the pump. I hated the side effects
of all the oral bac. and other stuff he crammed down me. All that worked was a big dose of Demerol.I miss the "normal" spasms cuz they helped in some situations and I never had a gut before pump, but I can't live w/o it.Good luck.WR

SCI-Nurse · 12-07-2002, 02:13 PM

Chester -- I have been working with baclofen pump patients since 1988 when it was still in the research phase. Over the years I have had dozens (over 100) of happy patients who report that it changed their quality of life for the better. There were only a few that did not like its effects. These were folks that could ambulate and actually required some spasticity/rigidity to stand and ambulate.

The beauty about intrathecal baclofen therapy is that you get to trial it first with a test dose injected into your lower back (lumbar puncture or spinal tap). If you like what you experience and there is a reduction in your spasms/rigidity then you can discuss having the pump placed with your MD. It is totally elective.

The initial pump dosing is dependent on how well you did in the trial and if it lasted less than or greater than 8 hours. I instruct patients that it can often take 30-90 days to adjust the pump to the maintenance dose that will be needed to control the spasms/rigidity while still maintaining function. Some muscle tone is still optimal for many daily activities. You will be carefully monitored by your clinic MD and RN for needed dose adjustments. Refill frequency is dependent on what your daily dose is. Most folks get their pump filled once every 30-90 days depending on this daily dose.

The pump has a battery that lasts about 7 years now. When the battery fails it usually only takes a 1-day outpatient surgical procedure to get it replaced. The initial pump usually requires a 2-3 day stay in the hospital depending on your other needs. Some patients also benefit from a short stay in rehabilitation following the pump placement to receive therapy while having the dose adjusted frequently.

I wholeheartedly believe in the benefits of the baclofen pump. Good luck in your decision. PLG

offthahook · 12-18-2002, 12:48 AM

The Pump > oral meds. End of story.

My phat site (Not SCI related)

marmalady · 12-18-2002, 02:41 AM

Another firm YES, from a caregiver! My son was on 160 mg of oral Baclofen; Zanaflex didn't work for him. Yes, there are risks; yes, there can be problems. But overall the benefits are much, much greater than the risks.

We've had lots of discussion here about the pump; you can do a search to see some of the many topics and opinions from other folks.

If you decide to go ahead with the implant, be absolutely sure that the neurosurgeon who does the operation knows what he's doing, has done many, many implants before, has the knowledge to handle complications, and has the backup available for you to get your pump refills, through a nursing agency or a clinic.

You can get up on the Medtronic website (the folks who make the pump) for more info. www.medtronics.com

Good luck!

_____________
Tough times don't last - tough people do.

12-06-2002, 12:56 PM	#1
chester Member Join Date: Jul 2002 Location: minnesota Posts: 75	does the baclofen pump work? i am t 6-7 complete, and my doctor would like me to consider the pump. i take 120 mgs of oral baclofen and 24 mgs of zanaflex a day, the doctor said she don't want to increase my meds because i have problems staying awake as it is now, and i have difficulty with memory, she feels is from the dose i am on now. she said the pump would be very beneficial so i wouldnt be so drowsy. my legs spasm from stimulation, my legs will not cooperate when i transfer into a car, etc. are you happy with the pumps and how long does it take to show an improvement ? any advice will be great thank you

12-06-2002, 02:00 PM	#2
TD Senior Member Join Date: Aug 2001 Location: Phoenix, AZ, USA Posts: 649	From a pump user I am a T4 incomplete and have had my pump since 1995. I suffered a tremendous amount of stimulated spasms (I believe the medical term for what we have is allodynia) before getting my pump. Does it work? Most definitely!! For spasms AND for pain. I was taking 160 mg of oral baclofen a day and can attest to the fact that it messes with your thinking processes. Confusion, memory problems, and drowsiness are just a few of the side effects I did not like. My wife says it made me mean as well. It took me around 6 months of raising the pump dosage before I began realizing its beneficial attributes. Over that period of time I went from 160 ug (that is micromilligrams) to around 420 ug before my spasms became manageable. Over the next 24 months I slowly raised the dosage, keeping it at a point where I still had some spasms but was able to transfer and sleep with only mild difficulty. I leveled off at about 700 ug and was at that point until recently when I had to raise the dosage to 800 ug. From what I am told I still have a long way to go before I reach maximum effectiveness. If you have any other questions just post them here and if I do not have an answer there are other pump users here who may have them. "And so it begins."

12-06-2002, 06:18 PM	#3
whiterabbit11 Senior Member Join Date: Feb 2002 Location: middle of nowhere Posts: 565	pump Chester, I'm just another satisfied customer. My spasms became uncontrollable after 30+ years. I was hospital bound for the last few weeks cuz my BP went up out of sight and I had to live on Demerol. As soon as I fired my Dr.my new one put me onto the pump right away. I had no life until the pump. I hated the side effects of all the oral bac. and other stuff he crammed down me. All that worked was a big dose of Demerol.I miss the "normal" spasms cuz they helped in some situations and I never had a gut before pump, but I can't live w/o it.Good luck.WR

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12-07-2002, 02:13 PM	#4
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,514	Chester -- I have been working with baclofen pump patients since 1988 when it was still in the research phase. Over the years I have had dozens (over 100) of happy patients who report that it changed their quality of life for the better. There were only a few that did not like its effects. These were folks that could ambulate and actually required some spasticity/rigidity to stand and ambulate. The beauty about intrathecal baclofen therapy is that you get to trial it first with a test dose injected into your lower back (lumbar puncture or spinal tap). If you like what you experience and there is a reduction in your spasms/rigidity then you can discuss having the pump placed with your MD. It is totally elective. The initial pump dosing is dependent on how well you did in the trial and if it lasted less than or greater than 8 hours. I instruct patients that it can often take 30-90 days to adjust the pump to the maintenance dose that will be needed to control the spasms/rigidity while still maintaining function. Some muscle tone is still optimal for many daily activities. You will be carefully monitored by your clinic MD and RN for needed dose adjustments. Refill frequency is dependent on what your daily dose is. Most folks get their pump filled once every 30-90 days depending on this daily dose. The pump has a battery that lasts about 7 years now. When the battery fails it usually only takes a 1-day outpatient surgical procedure to get it replaced. The initial pump usually requires a 2-3 day stay in the hospital depending on your other needs. Some patients also benefit from a short stay in rehabilitation following the pump placement to receive therapy while having the dose adjusted frequently. I wholeheartedly believe in the benefits of the baclofen pump. Good luck in your decision. PLG

12-18-2002, 12:48 AM	#5
offthahook Senior Member Join Date: Feb 2002 Location: Midwest Posts: 299	The Pump > oral meds. End of story. My phat site (Not SCI related)

12-18-2002, 02:41 AM	#6
marmalady Senior Member Join Date: Aug 2001 Posts: 3,988	Another firm YES, from a caregiver! My son was on 160 mg of oral Baclofen; Zanaflex didn't work for him. Yes, there are risks; yes, there can be problems. But overall the benefits are much, much greater than the risks. We've had lots of discussion here about the pump; you can do a search to see some of the many topics and opinions from other folks. If you decide to go ahead with the implant, be absolutely sure that the neurosurgeon who does the operation knows what he's doing, has done many, many implants before, has the knowledge to handle complications, and has the backup available for you to get your pump refills, through a nursing agency or a clinic. You can get up on the Medtronic website (the folks who make the pump) for more info. www.medtronics.com Good luck! _____________ Tough times don't last - tough people do.