4 replies to this topic

[JayBird]

Hi all… I’m glad I found this site! I’ve been a c4-5 incomplete quad for 35 years and have almost always had fairly strong muscle spasms but they were manageable by taking oral baclofen. I took it for at least 25 years till I was taking the max (80 mg/day I believe) and it basically stopped working. I tried at least 5 different muscle relaxers over a period of about 4 years but during that time my spasms increased to the point of being absolutely agonizing whether I’m in bed or in my chair. I haven’t been able to drive my 4x4 van since 3-4 years ago and have rarely chanced going further than one block in my chair for months now. Some days the small bump getting out of my house is enough to make my body try to stand up. It’s almost impossible to bend myself at the middle without help.

After all else had failed, I finally heard of the baclofen pump from my doctor. After I researched baclofen pumps (on this site!) and decided to try it, she sent me to a pain specialist who implants the pumps. He ended up telling me that he doesn’t implant the pump into quads because of the possibility of relaxing the breathing muscles too much. A few months later a physical therapist was fitting me for a new chair and recommended another “pump doctor” to me. He has no problem with implanting them into quads so after all this time and agony I finally had a baclofen pump implanted 5 months ago after the trial went well. After several adjustments the baclofen concentration is 1,000 ug/mL and my daily dosage is now 400 ug/day. He will be refilling it with a concentration of 1,500 ug/mL and increase the daily amount by 50 ug to 450 ug/day.

After 4 years of agony I was really hoping to be getting more relief by now after 5 months with the pump. After a couple of increases with no change, I had a test with dye to make sure the liquid baclofen made it from the pump and all the way out the end of the catheter which he’d been able to push almost all the way to my injury (c4-5). The test went fine and I was able to feel a “booster injection” he gave me within a little while that lasted maybe 10 hours. I have felt a slight benefit maybe twice from regular adjustments but after a few days it almost seems to go away. I’m able to lay on my side now for 6 hours without having spasms but by that time my body feels like a very tight spring wound up and it and my legs shoot out straight and stiff as a board as soon as I’m touched or even if I breathe too deep or move my arm too much. My body has almost finally stopped trying to stand up in my chair but I still can’t tolerate lying on my back for even 5 minutes without literally feeling like I’m being tortured with ice picks on my legs. The only way I can relax is having my leg raised way up to stretch my hamstrings.

I’d love to hear from anyone who has a pump implanted… I’m very interested about:

• How long did it take to get to the point that you didn’t need anymore dose increases?
• At that point was the pump relaxing your spasms as much as you’d like?
• How high is your concentration and daily dosage?

Thanks for any feedback…I appreciate it.

[amyW]

JayBird,

My husband had an ITB pump implanted almost a year ago. His doctor raises the dosage about 5% each time it's refilled. So far, he has had minimal benefit. He still takes 80mg/day of oral baclofen, and still has very strong & painful leg spasms. It's a slow and frustrating process, to say the least.

What has your doctor said about what dose he expects will be beneficial to you? My husband's doctor has said he expects a very high dosage before my husband sees a worthwhile benefit, but that there is protocol as to how quickly the dose can be raised. We're hoping for maybe another 6-12 months.

I'm looking forward to other responses to your question.

[JayBird]

 amyW, on 03 March 2011 - 02:33 AM, said:

JayBird,

My husband had an ITB pump implanted almost a year ago. His doctor raises the dosage about 5% each time it's refilled. So far, he has had minimal benefit. He still takes 80mg/day of oral baclofen, and still has very strong & painful leg spasms. It's a slow and frustrating process, to say the least.

What has your doctor said about what dose he expects will be beneficial to you? My husband's doctor has said he expects a very high dosage before my husband sees a worthwhile benefit, but that there is protocol as to how quickly the dose can be raised. We're hoping for maybe another 6-12 months.

I'm looking forward to other responses to your question.

Thanks for your reply Amy. My doctor has really only told me that I'm at the "average" dosage (400 ug/day). I've asked him how high the dose can go up to but it seems like he doesn't want to give me a specific number; and hasn't said how high he thinks mine will be by the time I won't need anymore increases.

I'll be having my 3rd refill next week and have had increases made at those times and in-between as well.... usually as soon as I can make another appointment after not feeling any change. He hasn't said anything about needing to wait a certain time between increases and increases mine by about +-50 ug each time. I still take 40-80 mg or oral baclofen. The protocol makes sense since the baclofen drips right into where the spinal fluid is. As my doctor put it "I have to be careful and not kill my patients..." (he has a great sense of humor!)

May I ask you how high your husband's "concentration" and daily dose is? Has he concidered getting increases more often? (BTW I'm a quad from a car wreck in '75)

[wheeliebar1]

 JayBird, on 03 March 2011 - 03:48 AM, said:

 amyW, on 03 March 2011 - 02:33 AM, said:

JayBird,

My husband had an ITB pump implanted almost a year ago. His doctor raises the dosage about 5% each time it's refilled. So far, he has had minimal benefit. He still takes 80mg/day of oral baclofen, and still has very strong & painful leg spasms. It's a slow and frustrating process, to say the least.

What has your doctor said about what dose he expects will be beneficial to you? My husband's doctor has said he expects a very high dosage before my husband sees a worthwhile benefit, but that there is protocol as to how quickly the dose can be raised. We're hoping for maybe another 6-12 months.

I'm looking forward to other responses to your question.

Thanks for your reply Amy. My doctor has really only told me that I'm at the "average" dosage (400 ug/day). I've asked him how high the dose can go up to but it seems like he doesn't want to give me a specific number; and hasn't said how high he thinks mine will be by the time I won't need anymore increases.

I'll be having my 3rd refill next week and have had increases made at those times and in-between as well.... usually as soon as I can make another appointment after not feeling any change. He hasn't said anything about needing to wait a certain time between increases and increases mine by about +-50 ug each time. I still take 40-80 mg or oral baclofen. The protocol makes sense since the baclofen drips right into where the spinal fluid is. As my doctor put it "I have to be careful and not kill my patients..." (he has a great sense of humor!)

May I ask you how high your husband's "concentration" and daily dose is? Has he concidered getting increases more often? (BTW I'm a quad from a car wreck in '75)

Hi, I have a baclofen pump, and I'm still titrating up the dose after 5 months. Right now I am at 874 mcg/day. I get the doses in boluses though, (much more effective for me) which means all at once. I get a bolus of around 150mcg every 4 hours and then I get a basal, or continuous, rate ontop of that. I have VERY strong spasms in my hamstrings especially, but now I can finally break the spasticity on my own to transfer with a slide board. I'm not sure about the 5% increases though, my physiatrist increases my dose by 20% about every week, so 5% seems very low and slow.

Jess

BTW I have a friend with CP who gets around 1700 mcg/day, and that's on top of taking oral baclofen as well.

Edited by wheeliebar1, 03 March 2011 - 09:38 PM.

[Hello]

 JayBird, on 03 March 2011 - 02:08 AM, said:

Hi all… I’m glad I found this site! I’ve been a c4-5 incomplete quad for 35 years and have almost always had fairly strong muscle spasms but they were manageable by taking oral baclofen. I took it for at least 25 years till I was taking the max (80 mg/day I believe) and it basically stopped working. I tried at least 5 different muscle relaxers over a period of about 4 years but during that time my spasms increased to the point of being absolutely agonizing whether I’m in bed or in my chair. I haven’t been able to drive my 4x4 van since 3-4 years ago and have rarely chanced going further than one block in my chair for months now. Some days the small bump getting out of my house is enough to make my body try to stand up. It’s almost impossible to bend myself at the middle without help.

After all else had failed, I finally heard of the baclofen pump from my doctor. After I researched baclofen pumps (on this site!) and decided to try it, she sent me to a pain specialist who implants the pumps. He ended up telling me that he doesn’t implant the pump into quads because of the possibility of relaxing the breathing muscles too much. A few months later a physical therapist was fitting me for a new chair and recommended another “pump doctor” to me. He has no problem with implanting them into quads so after all this time and agony I finally had a baclofen pump implanted 5 months ago after the trial went well. After several adjustments the baclofen concentration is 1,000 ug/mL and my daily dosage is now 400 ug/day. He will be refilling it with a concentration of 1,500 ug/mL and increase the daily amount by 50 ug to 450 ug/day.

After 4 years of agony I was really hoping to be getting more relief by now after 5 months with the pump. After a couple of increases with no change, I had a test with dye to make sure the liquid baclofen made it from the pump and all the way out the end of the catheter which he’d been able to push almost all the way to my injury (c4-5). The test went fine and I was able to feel a “booster injection” he gave me within a little while that lasted maybe 10 hours. I have felt a slight benefit maybe twice from regular adjustments but after a few days it almost seems to go away. I’m able to lay on my side now for 6 hours without having spasms but by that time my body feels like a very tight spring wound up and it and my legs shoot out straight and stiff as a board as soon as I’m touched or even if I breathe too deep or move my arm too much. My body has almost finally stopped trying to stand up in my chair but I still can’t tolerate lying on my back for even 5 minutes without literally feeling like I’m being tortured with ice picks on my legs. The only way I can relax is having my leg raised way up to stretch my hamstrings.

I’d love to hear from anyone who has a pump implanted… I’m very interested about:

• How long did it take to get to the point that you didn’t need anymore dose increases?
• At that point was the pump relaxing your spasms as much as you’d like?
• How high is your concentration and daily dosage?

Thanks for any feedback…I appreciate it.

Hi Jaybird:
I had really bad leg spasms from Multiple Sclerosis, and had the Baclofen Pump installed in 2006. It certainly has helped me, but it took a while to "get there." I sure am glad that you saw another dr. willing to help you. My doctor said that the FDA has some rules that the drs. are suppose to follow. From my understanding, the drs. are only suppose to increase your amount by 10% at a time--thus avoiding relaxing your breathing muscles too much, etc. And because this is a newer "gadget", and everybody is different, there isn't a set baseline amount. I could get "upped" 10% once every week or two. I would say by a year, you should have it where you want it.

You can have the doctor set a bolus for times when you know that you are extra spastic/stiff, so like 2 hours before waking up. I however have my own device, so I give myself the bolus when I need it. I like having that control, as every day is different for me. Weather plays a big part. The device is called a PTM, and the dr. sets it to how many times a day it can be activated, how much time between activations, and how much drug you get. You just put this handheld device over the pump, even over your jeans/clothing, and push a button. It (the PTM) makes a noise to tell you when it has delivered the message to the pump.

Connie