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Baclofen Pump Vs Baclofen Pill




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21 replies to this topic

#1 Kev-O

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Posted 04 August 2007 - 07:40 PM

Be for i got my pump put in my dr told me a great analogy. He said getting the baclofen to were it needs to be is like getting a baseball glove on a field going up in a helicopter and droping a a bunch of balls and hoping one lands in the glove. but the pump is like just droping a ball in the glove. i hope that makes since.

#2 drslim273

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Posted 06 September 2007 - 04:53 AM

I have a baclofen pump and I think it is a waste of space.

#3 Kev-O

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Posted 06 September 2007 - 05:34 PM

I have a baclofen pump and I think it is a waste of space.

same here but i dont kow how it would be if i didn't have it ya know.

#4 Nick's mum

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Posted 07 September 2007 - 01:28 AM

Nick's pump changed his life as his spasms were so severe. He was on max oral Baclofen and apart from not being enough it spaced him out. Nick could not participate in rehab and just before his op could no longer sit in his chair as his knees were working themselves up to his chin.

Ulla xxx
Ulla, mother of Nick (34) Injured in a fall late March 2005. Quad C5/6/7 incomplete. 1 year at King's College Hospital, London. Stoke Mandeville Spinal Unit since March 2006. Discharged 06/06/2007.

#5 Alin Steglinski

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Posted 07 September 2007 - 01:36 AM

Nick's pump changed his life as his spasms were so severe. He was on max oral Baclofen and apart from not being enough it spaced him out. Nick could not participate in rehab and just before his op could no longer sit in his chair as his knees were working themselves up to his chin.

Ulla xxx

dang it, do i have to wait till my legs are to my chin for a freaking pump... DAMN YOU DOCTORS, WHY CANT I JUST SIGN A LITTLE PAPER AND GET A PUMP AND PAY MYSELF... I MEAN I CAN FIND THE MONEY LIKE IM FINDING MONEY FOR A POWERCHAIR GEEZ... MEDICAL PISSES ME OFF

#6 knowthill

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Posted 11 September 2007 - 05:44 PM

My pump has been a trip for sure. First of all the pump was put in my side to shallow and worked its way out. I had a major wound for six months. Then it took a year and a half to set my new one. Finally it seems to work very well. Just wanted let you know nothing is a great as it is made out to be. At least that’s my experience.
Jeffrey H. Thill
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#7 Alin Steglinski

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Posted 11 September 2007 - 10:14 PM

My pump has been a trip for sure. First of all the pump was put in my side to shallow and worked its way out. I had a major wound for six months. Then it took a year and a half to set my new one. Finally it seems to work very well. Just wanted let you know nothing is a great as it is made out to be. At least that’s my experience.

well thats not the pumps fault that it was in too shallow, it was the surgeons fault!

these pumps can take a while to get completely set correctly, depending from person to person.

#8 darrel

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Posted 22 September 2007 - 01:16 PM

I am getting set up for the testing to have the pump and that does not bother me. I'd like to know how they adjust the dosage after the implant is in?

#9 4wheeljay

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Posted 28 September 2007 - 11:37 PM

I’m a newbie HERE, not to SCI (15yrs post original injury, in chair permanently 3yrs). I truly hope the horror stories are not the norm. I just had pump put in 8 days ago. My Doc and I agree it is my best hope. Because, I cannot take any more oral Baclophen, I am at the max with little to no relief, I was lethargic and missing half my life and still having constant spasms. Am I setting myself up for a big let down, thinking the pump will reduce or relieve the spasms? During the trial study my spasms became nearly nonexistent. does the pump not work like the trial study?
Jay

#10 Kev-O

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Posted 29 September 2007 - 02:40 AM

I’m a newbie HERE, not to SCI (15yrs post original injury, in chair permanently 3yrs). I truly hope the horror stories are not the norm. I just had pump put in 8 days ago. My Doc and I agree it is my best hope. Because, I cannot take any more oral Baclophen, I am at the max with little to no relief, I was lethargic and missing half my life and still having constant spasms. Am I setting myself up for a big let down, thinking the pump will reduce or relieve the spasms? During the trial study my spasms became nearly nonexistent. does the pump not work like the trial study?
Jay

No dont think your going to get let down. I am still new to the pump to but it just takes time to get every thing set to were you like it. the pump should be a big help trust me

#11 darrel

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Posted 29 September 2007 - 03:19 PM

I’m a newbie HERE, not to SCI (15yrs post original injury, in chair permanently 3yrs). I truly hope the horror stories are not the norm. I just had pump put in 8 days ago. My Doc and I agree it is my best hope. Because, I cannot take any more oral Baclophen, I am at the max with little to no relief, I was lethargic and missing half my life and still having constant spasms. Am I setting myself up for a big let down, thinking the pump will reduce or relieve the spasms? During the trial study my spasms became nearly nonexistent. does the pump not work like the trial study?
Jay

welcome to the sight, I can't answer your question,I'm going to be gettiig tested in a couple of weeks and with luck I'll have one also, but like you I worry about the horrors that I've read about, but I look toward the positive side, you don't hear to much about the success stories, but they have to be very efective the Dr.'s keep pushing for them. and I'm to the point now I'm willing to try any thing, even if it may cause some loss of mussle use it can't be as bad as the Botox. keep us up dated, we can all compair the results it might help all of us in the long run. later!

Edited by darrel, 29 September 2007 - 03:21 PM.


#12 4wheeljay

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Posted 29 September 2007 - 07:15 PM

Kev-O & Darrel
Thanks, for the welcome. I am staying positive about the pump. As I stated before the trail went extremely well and if I can get the same or better results I will be happy.
It is 8-days post-op and the Dr has already adjusted the daily dose.(grant it i am still taking an oral dose for break thru spasms.) Howevr, I’m already noticing some mild changes in my lower level activity. I have a very good feeling and did not want to lead myself to a big letdown. I don’t know about anyone here but I and tired of lifting my hopes so high just to see them crash and burn.
Darrel, I to would prefer my legs to be totally limp vs. the spasm pain. Best of luck with the test, I will be rooting for a positive outcome
Jay

#13 Julie Bakke

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Posted 02 October 2007 - 03:22 PM

I've had my pump for 8 months now and I was frustrated at first but let me tell you, once you get your dosage set and you've done your physical therapy you will see a definite improvement. my muscles are so relaxed and my quality of life has definately improved. My doctor said don't make any judgments about the pump for about a year and I think that is good advice because things get better as time goes by... it's not an immediate fix.

When doctors and physical therapists test me for tone they tell me the medicine has completely turned it off. My legs don't shake.

good luck.

#14 darrel

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Posted 02 October 2007 - 04:11 PM

can any one tell me if it helps with the cramps? I wake up in the morning with severe spasms in my calfs then they turn to cramps it is all I can do to get out of bed and wrestle to stand to get rid of them, I've been dreeding to go to bed because I know what I'm going to wake up to. the Dr. has me scheduled for testing on the 16th,I'm just curiuos now and I know by then I'll for get to ask this.

#15 alex1

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Posted 04 October 2007 - 01:33 AM

does anyone have any experience with stiff person syndrome and the use of a baclofen pump to minimize the spasms? any shared experience or advice would be helpful. thanks.

#16 darrel

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Posted 04 October 2007 - 04:48 AM

alex1, If you go over to care cure commuity they have their own medical personell ---nurse and Dr. they woud be more than happy to answer your questions, you are welcome to come back,

#17 Ray_Max

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Posted 18 October 2007 - 04:39 PM

I'm new to this forum but not to being disabled. I had a diving accident in June, 1990 that left me a C-6 quadraplegic. I've had severe spasms since and have been taking oral meds to control them until recently. Last August I had the pump installed and since then have had severe abdominal pain as a result. The weird thing is that I have no sensation below my nipple line so it's kinda nuts that I would be in pain in my stomach area where they put the pump. Anyway, since the pain was not subsiding the Docs decided to reposition the pump. I had the repositioning done three weeks ago and the pain is still there. They then attempted to 'break' the pain by injecting steroids in the area to no avail, the pain persists to this day.

The pump has done as intended by controlling my spasms but now I'm left with a new malady, severe abdominal pain. I'm now entertaining the idea of removing the pump altogether but don't really want to because of it's effectiveness and all the trauma I've gone through to get it installed. Has anyone else experienced anything close to what I'm going through? If so, how have you dealt with the persistent pain and discomfort? Any and all responses welcomed and appreciated. Thanks for listening...
Ray

#18 darrel

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Posted 18 October 2007 - 05:43 PM

raymax,
sorry to hear that, did the doc's say what the pain was that you are experencing? I am C6 incom. and had the botox shots in the calf, normally I can't feel down there but I saw the length of the needle that was being used and I don't know if it was a mind thing or what but that thing hurteach time but I was not able to tell were it was.

#19 Kev-O

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Posted 18 October 2007 - 06:25 PM

I'm new to this forum but not to being disabled. I had a diving accident in June, 1990 that left me a C-6 quadraplegic. I've had severe spasms since and have been taking oral meds to control them until recently. Last August I had the pump installed and since then have had severe abdominal pain as a result. The weird thing is that I have no sensation below my nipple line so it's kinda nuts that I would be in pain in my stomach area where they put the pump. Anyway, since the pain was not subsiding the Docs decided to reposition the pump. I had the repositioning done three weeks ago and the pain is still there. They then attempted to 'break' the pain by injecting steroids in the area to no avail, the pain persists to this day.

The pump has done as intended by controlling my spasms but now I'm left with a new malady, severe abdominal pain. I'm now entertaining the idea of removing the pump altogether but don't really want to because of it's effectiveness and all the trauma I've gone through to get it installed. Has anyone else experienced anything close to what I'm going through? If so, how have you dealt with the persistent pain and discomfort? Any and all responses welcomed and appreciated. Thanks for listening...

I was told that we can still feel our insides (guts) maybe the dr is placing it wrong, were is yours placed

#20 4Wheels

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Posted 19 October 2007 - 01:07 AM

I've been on the pill for 26 years, and I haven't got Pregnant Yet!


What pill were we talking about?

Jim for President......


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For Those About to Rock, I Salute you!

#21 iOserV

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Posted 27 October 2007 - 06:19 PM

Im a newly injured para (Feb 07)and when i woke up from ICU I had to take the 20mg pill 3 time a day. Now I am taking the max (and sometimes even more when i cant sleep) 30mg 4 times a day is still not doing it. The pump trial is set up soon. Ill let yall know when I get it. The doctor says I wont have any spasms- Hope so.

#22 roo

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Posted 27 October 2007 - 06:55 PM

I am getting set up for the testing to have the pump and that does not bother me. I'd like to know how they adjust the dosage after the implant is in?

hi darrel its all done by a computer they will put a paddle on your pump which is linked up to the computer and by preesing a few keys on the keyboard they can higher or lower dosage that simple if you want any more questions anwered about these pumps feel free to email us as i was the 1st person to have 1 fitted at southport spinal and was also the 1st to get the pump removed roo

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