Baclofen pump for pain & spasms - Page 2

D'Listd8181 · 01-21-2010, 11:20 AM

Ok so Tuesday was a very strange day for me. The weather was warm for the first time in GA. My spine threatened to swell. I could feel parts of it sticking out as I was driving around enjoying the sunny day. Around dinner time, I began to walk funny. I had more "nerve strength" in my left leg. My body even felt funny for a little bit. As always I tried to talk it away & say it's ok. It didn't work. A few hours passed until I went to bed. I was awakened by the horrible burning pain all over my upper torso. If anyone is wondering if I ate before bed, I only had a protein shake but sat up for 45 mins before lying down. It was nothing like heart burn I can say that. However, yesterday wasn't as sunny & warm feeling outside. I noticed that there was barely any swelling, however the horrifying burning pain came back. It was so bad I had to tell my friend what goes on. She had no clue.

From what I understand, the Baclofen pump is used for spasticity only. Spasticity is my main symptom without any of my meds. I take 20mg oral baclofen 3x a day & 150mg of baclofen split twice a day. However, the Baclofen clearly does not keep away the burning in my spine. Nothing seems to help except a 60mg shot of Toradol. I can't take it all the time. As we all know NSAIDS have a digestive system risk. The heat clearly exacerbates my condition. I love the outdoors beyond belief but I am not sure what to think about the upcoming summer. I had close to a dozen shots of toradol last summer. I estimate that this was between June & October...

I guess what I am trying to get at is if the baclofen pump is used for only severe spasticity. This burning pain is starting to get out of hand. If not, are there other treatments I can approach. My doc called in a script of Darvacet, but I'm not sure if it will work this time around. Not to mention a short while ago, the burning pain came back...

I felt better from the Darvacet, but I am going to discuss with my doctor that I don't believe in pain killers for long term pain management with the exception of conditions such as major accidents & cancer, etc. I'm not really sure if the baclofen pump is worth discussing with him...I forgot to mention I can't afford to go to the ER or the doc in the box everytime I need a shot. I have a 2500 deductible & I have to pay for the shots out of pocket...

D'Listd8181 · 01-29-2010, 01:41 PM

@SCI Nurse...
I have a post on the thread Baclofen pump for pain & spasms, which describes my scenario. I have a dilemma. The baclofen dose I am on now is starting to shut down my digestive system. Baclofen is the ONLY medication that works for me. My issue is that I very possibly have aspergers syndrome. This is on top of my spinal cord burning. It has become very apparent to me that the baclofen regulates my "circuit board" in my brain. Essentially the baclofen holds me together or at least half decently. I get sensory overload really bad & very easily. I get twitching in my head and my brain begins to reject things it is supposed to accept such as food & water. Thus making the problem with food worse I already mentioned above...
Temperature seems to be a problem for me as well as rain. It is hot here more than half the year. As a result my pain levels are often elevated. I guess what I am trying to get at is whether or not it is worth it for me to request information on the pump...

SCI-Nurse · 01-29-2010, 05:47 PM

Baclofen pumps are usually reserved for severe spasticity, but may also have benefits for some (but not all) for neuropathic pain. You would need to see a physician who is expert in the use of the pump, and identify who would do your programming and refills to be sure you have access to the resources you need once the pump is placed, and then find a good neurosurgeon who is experienced in pump placement, replacement and trouble shooting. Your physiatrist should be able to refer you.

What other anti-spasticity drugs have you tried and in what amounts?
What else are you doing to reduce your spasticity (standing daily, ROM/stretching exercises daily, proning or laying on your stomach daily)???

(KLD)

D'Listd8181 · 01-29-2010, 08:33 PM

The spasticity is gone. It is the burning pain that is awful. I get this horrible burning pain in my spine the warmer it gets out. I also am now getting a burning pain in my chest. The pain comes & goes. I've tried tizanadine. It makes me loopy during an episode. It does nothing when I'm not in an episode. Darvocet works but it makes me really mellow & not want to do much. This baclofen does so much for me it is unbelievable. It is literally the only thing that works. Not to mention, I have a sensitivity to medicine. I think its bec/ I have trouble breaking down complex foods/meds. I can't eat anything past hamburgers, steak, etc. No foods with a lot to it. Hope that makes sense. I have trouble with complex anything to be honest.

I haven't been able to do much exercise. I also have this shock pain that I get in my chest. I feel like my chest has an electric charge to it when I start doing things that put a strain on my heart. I would like to work out but am not sure if this is a smart idea. Are you able to see the predicament I am in?

I'd really like to beat my intermittent drug habit. I've been known to smoke a little marijuana. Man, I know something is really wrong if mary jane doesn't even remotely touch the pain or phase me. I don't even smoke enough to "smoke myself sober"...

I'm afraid to tell my neurologist. I'm afraid he'll just blame my troubles on my bad habit. I already got funny twitches/flutters though before I ever started smoking...

I'm really in water over my head & I need to get out...

DustinB85 · 12-21-2010, 07:52 PM

I have Cerebal Palsy. I am 25 years old. My pump was put in about 6 months ago. It has definetly helped me with cramps and spasims. I do have to say it does take some getting used to. You can do most thinks you would normally do. You just can't ride on a inner tube on a back of a boat going fast slamming you up and down. Also, you can't get into fights or put yourself in danger. If your a peaceful person and you take it easy then the pump can really help you. I still take the baclofen tablets for spasims related to cold weather or sometimes I just overly tight. I hope this helps. God Bless.

my youtube CP videos

http://www.youtube.com/neverenough85

maggie~mae · 03-05-2011, 04:04 PM

I got my baclofen pump implanted December 2010. It's been a night and day difference since. Before the pump I was taking 30mg/3xday of baclofen, 2mg xanaflex and 2mg valium for my spasms and was a zombie. I am on a crap ton of other meds and have been weaning off of them since the pump was implanted.

Before the pump I couldn't get my right foot into neutral position or my right hand open, but that has since changed. My tone has decreased significantly along with my spasticity. I still have really bad chronic nerve pain in my back and hips though, but it might be because I am only receiving baclofen through my pump. My spasms tend to get worse as the day goes on, and the pump can be adjusted to give different rates throughout the day.

I would definitely recommend doing the trial to see if you are a candidate for the pump. I will be blunt and tell you that the test and surgery were horrible (at least for me) but it has been worth it. The month after surgery was hell, but I am doing so much better now that I have the pump, and would do it all over again for these results. Good luck!

el___chulito · 03-16-2011, 03:20 PM

hello all i have a two part question

i had a baclofen pump implanted in 2003. my question is how long does it take before the batteries run out? when they do, how will the batteries be replaced?

is the baclofen pump a permanet or temporary remedy to a spastic stroke victim? will i have to have this pump forever?
i had my stroke in 2001

thanking you in advance

rdf · 03-16-2011, 06:59 PM

You should have gotten it replaced at 5 years, at the most 7. They don't swap out batteries, they put in a new pump if the battery goes. But insurance will approve you a new pump right now because it's been so long.

Quote:

Originally Posted by el___chulito

hello all i have a two part question

i had a baclofen pump implanted in 2003. my question is how long does it take before the batteries run out? when they do, how will the batteries be replaced?

is the baclofen pump a permanet or temporary remedy to a spastic stroke victim? will i have to have this pump forever?
i had my stroke in 2001

thanking you in advance

el___chulito · 03-17-2011, 10:22 AM

Thank you very much. APPRECIATE YOR HELP RDF . VERY IMFORMATIVE INFORMATION TO KNOW. IM JUST CURIOUS AS TO WHY THE DOCTORS HAVENT MENTIONED ANYTHING TO ME. ONE WOULD THINK THE DOCTORS WOULD HAVE REPLACED IT 2 YEARS AGO. I WILL CERTAINLY INQUIRE. THANKS AGAIN.

el___chulito · 03-29-2011, 04:38 PM

is anyone here familiar with the multi vitamin called intramax? my question is am i able to drink intramax if i have a baclofen pump and i take chelesterol medication as well?

12-21-2010, 07:52 PM	#15
DustinB85 Junior Member Join Date: Dec 2010 Posts: 1	Baclofen Pump I have Cerebal Palsy. I am 25 years old. My pump was put in about 6 months ago. It has definetly helped me with cramps and spasims. I do have to say it does take some getting used to. You can do most thinks you would normally do. You just can't ride on a inner tube on a back of a boat going fast slamming you up and down. Also, you can't get into fights or put yourself in danger. If your a peaceful person and you take it easy then the pump can really help you. I still take the baclofen tablets for spasims related to cold weather or sometimes I just overly tight. I hope this helps. God Bless. my youtube CP videos http://www.youtube.com/neverenough85

03-16-2011, 03:20 PM	#17
el___chulito Junior Member Join Date: Mar 2011 Posts: 5	hello all i have a two part question i had a baclofen pump implanted in 2003. my question is how long does it take before the batteries run out? when they do, how will the batteries be replaced? is the baclofen pump a permanet or temporary remedy to a spastic stroke victim? will i have to have this pump forever? i had my stroke in 2001 thanking you in advance Last edited by el___chulito; 03-16-2011 at 03:45 PM.

03-17-2011, 10:22 AM	#19
el___chulito Junior Member Join Date: Mar 2011 Posts: 5	Thank you very much. APPRECIATE YOR HELP RDF . VERY IMFORMATIVE INFORMATION TO KNOW. IM JUST CURIOUS AS TO WHY THE DOCTORS HAVENT MENTIONED ANYTHING TO ME. ONE WOULD THINK THE DOCTORS WOULD HAVE REPLACED IT 2 YEARS AGO. I WILL CERTAINLY INQUIRE. THANKS AGAIN. Last edited by el___chulito; 03-17-2011 at 10:30 AM.

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01-21-2010, 11:20 AM	#11
D'Listd8181 Junior Member Join Date: Jan 2010 Location: Lake Oconee, GA Posts: 8	Ok so Tuesday was a very strange day for me. The weather was warm for the first time in GA. My spine threatened to swell. I could feel parts of it sticking out as I was driving around enjoying the sunny day. Around dinner time, I began to walk funny. I had more "nerve strength" in my left leg. My body even felt funny for a little bit. As always I tried to talk it away & say it's ok. It didn't work. A few hours passed until I went to bed. I was awakened by the horrible burning pain all over my upper torso. If anyone is wondering if I ate before bed, I only had a protein shake but sat up for 45 mins before lying down. It was nothing like heart burn I can say that. However, yesterday wasn't as sunny & warm feeling outside. I noticed that there was barely any swelling, however the horrifying burning pain came back. It was so bad I had to tell my friend what goes on. She had no clue. From what I understand, the Baclofen pump is used for spasticity only. Spasticity is my main symptom without any of my meds. I take 20mg oral baclofen 3x a day & 150mg of baclofen split twice a day. However, the Baclofen clearly does not keep away the burning in my spine. Nothing seems to help except a 60mg shot of Toradol. I can't take it all the time. As we all know NSAIDS have a digestive system risk. The heat clearly exacerbates my condition. I love the outdoors beyond belief but I am not sure what to think about the upcoming summer. I had close to a dozen shots of toradol last summer. I estimate that this was between June & October... I guess what I am trying to get at is if the baclofen pump is used for only severe spasticity. This burning pain is starting to get out of hand. If not, are there other treatments I can approach. My doc called in a script of Darvacet, but I'm not sure if it will work this time around. Not to mention a short while ago, the burning pain came back... I felt better from the Darvacet, but I am going to discuss with my doctor that I don't believe in pain killers for long term pain management with the exception of conditions such as major accidents & cancer, etc. I'm not really sure if the baclofen pump is worth discussing with him...I forgot to mention I can't afford to go to the ER or the doc in the box everytime I need a shot. I have a 2500 deductible & I have to pay for the shots out of pocket...

01-29-2010, 01:41 PM	#12
D'Listd8181 Junior Member Join Date: Jan 2010 Location: Lake Oconee, GA Posts: 8	@SCI Nurse... I have a post on the thread Baclofen pump for pain & spasms, which describes my scenario. I have a dilemma. The baclofen dose I am on now is starting to shut down my digestive system. Baclofen is the ONLY medication that works for me. My issue is that I very possibly have aspergers syndrome. This is on top of my spinal cord burning. It has become very apparent to me that the baclofen regulates my "circuit board" in my brain. Essentially the baclofen holds me together or at least half decently. I get sensory overload really bad & very easily. I get twitching in my head and my brain begins to reject things it is supposed to accept such as food & water. Thus making the problem with food worse I already mentioned above... Temperature seems to be a problem for me as well as rain. It is hot here more than half the year. As a result my pain levels are often elevated. I guess what I am trying to get at is whether or not it is worth it for me to request information on the pump...

01-29-2010, 05:47 PM	#13
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,362	Baclofen pumps are usually reserved for severe spasticity, but may also have benefits for some (but not all) for neuropathic pain. You would need to see a physician who is expert in the use of the pump, and identify who would do your programming and refills to be sure you have access to the resources you need once the pump is placed, and then find a good neurosurgeon who is experienced in pump placement, replacement and trouble shooting. Your physiatrist should be able to refer you. What other anti-spasticity drugs have you tried and in what amounts? What else are you doing to reduce your spasticity (standing daily, ROM/stretching exercises daily, proning or laying on your stomach daily)??? (KLD)

01-29-2010, 08:33 PM	#14
D'Listd8181 Junior Member Join Date: Jan 2010 Location: Lake Oconee, GA Posts: 8	The spasticity is gone. It is the burning pain that is awful. I get this horrible burning pain in my spine the warmer it gets out. I also am now getting a burning pain in my chest. The pain comes & goes. I've tried tizanadine. It makes me loopy during an episode. It does nothing when I'm not in an episode. Darvocet works but it makes me really mellow & not want to do much. This baclofen does so much for me it is unbelievable. It is literally the only thing that works. Not to mention, I have a sensitivity to medicine. I think its bec/ I have trouble breaking down complex foods/meds. I can't eat anything past hamburgers, steak, etc. No foods with a lot to it. Hope that makes sense. I have trouble with complex anything to be honest. I haven't been able to do much exercise. I also have this shock pain that I get in my chest. I feel like my chest has an electric charge to it when I start doing things that put a strain on my heart. I would like to work out but am not sure if this is a smart idea. Are you able to see the predicament I am in? I'd really like to beat my intermittent drug habit. I've been known to smoke a little marijuana. Man, I know something is really wrong if mary jane doesn't even remotely touch the pain or phase me. I don't even smoke enough to "smoke myself sober"... I'm afraid to tell my neurologist. I'm afraid he'll just blame my troubles on my bad habit. I already got funny twitches/flutters though before I ever started smoking... I'm really in water over my head & I need to get out...

03-05-2011, 04:04 PM	#16
maggie~mae Member Join Date: Dec 2010 Location: IL Posts: 56	I got my baclofen pump implanted December 2010. It's been a night and day difference since. Before the pump I was taking 30mg/3xday of baclofen, 2mg xanaflex and 2mg valium for my spasms and was a zombie. I am on a crap ton of other meds and have been weaning off of them since the pump was implanted. Before the pump I couldn't get my right foot into neutral position or my right hand open, but that has since changed. My tone has decreased significantly along with my spasticity. I still have really bad chronic nerve pain in my back and hips though, but it might be because I am only receiving baclofen through my pump. My spasms tend to get worse as the day goes on, and the pump can be adjusted to give different rates throughout the day. I would definitely recommend doing the trial to see if you are a candidate for the pump. I will be blunt and tell you that the test and surgery were horrible (at least for me) but it has been worth it. The month after surgery was hell, but I am doing so much better now that I have the pump, and would do it all over again for these results. Good luck!

03-29-2011, 04:38 PM	#20
el___chulito Junior Member Join Date: Mar 2011 Posts: 5	is anyone here familiar with the multi vitamin called intramax? my question is am i able to drink intramax if i have a baclofen pump and i take chelesterol medication as well?