Baclofen pump FAQ

[StemCells&AtomBombs]

Baclofen (pump)

I have terrible spasms, my knees bend all by themselves, and I have clonus in my ankles that shake uncontrolably in my wheel chair when I hit a bump.

Currently I'm on only 30mg of oral baclofen (10,10,10 after meals). The doctor has talked to me about a pump but before I get a pump, I would like to try to increase the oral baclofen to see if maybe I don't need an operation.

Is 30mg a lot. I see that the recommended maximum is 80mg. Does anyone have any experience with this.

Also, will baclofen or the pump have any impact on the clonus?
Thank you in advance.

If you're interested, I also have a blog at www.stemcellsandatombombs.blogspot.com

[Entheos06]

Messed up bad.

Hi all,

I have now had the pump for over 6 weeks, and in all that time I've never felt good at all, but maybe for a moment or two. I've been adjusted up and then down, and now I'm headed up again. For most of this time I've had what turned out to be spasms in my diaphram. I'd thought that the reason that I had a hard time breathing was due to over-medicating, but after all it turns out to be spasms. And now, as for the last 3 weeks, I've had a real hard time getting any rest at all. Once I start to fall asleep whether in my chair or in my bed which is seldom due to fibromyalgia (that too is due to the spinal cord damage), I fall asleep for a second only to find myself: eyes wide open and gasping for air and in a state of shock. This is a subject for another day. So, here I am unable to sleep, hurting from the neck down and especially in my legs, and wondering if this pump is ever going to work at all. And, as I think about it, since now I am taking my oral muscle relaxers and pain pills at the rate DOUBLED from what I took them before I got the pump, I am beginning tonight to wonder if the pump is working at all!!!!!! I think that either it's off for some reason, or the catheter has been compromised one way or the other: a kink, or separation somewhere along the way. I have an adjustment scheduled for tomorrow at 10 am, so I'm pleased with that, but I wonder if there are any other complications I have to worry about from having the baclofen discontinued abruptly like that? Any help or suggestions would be greatly appreciated. Also, I was given a telephone # by which I could get in touch with my Dr. So far I've called them at least once a week and so far I'm lucky if they call back within 24 hrs.!!!! That's messed up!

[rdf]

The powder means it has to be compounded by a pharmacist into a liquid. That doesn't happen much anymore from what I've seen...it's usually now prepackaged liquid baclofen in a vial. You should be good to go.

ok thanks yall for the input. One more question; How much is the refills (round about). I called my ins. company to see if I was covered and she said something it having to be mixed or something cause it was a powder? If it came in a vile i was covered but if it was bulk and had to be pre pared I wasnt. I have searched and searched and to no avail found nothing. Thanks for the help guys.

[mik978]

@stems; I am currently on 120mg daily, 30mg every 6. as far as clonis I still get it periodically evn on that amount.

[rdf]

You should get a diagnostic dye study done to discover if the catheter is compromised in some manner. It's happened to me in the past, once only a month post surgery.

Also, you might ask your doctor about sleep apnea.

Hi all,

I have now had the pump for over 6 weeks, and in all that time I've never felt good at all, but maybe for a moment or two. I've been adjusted up and then down, and now I'm headed up again. For most of this time I've had what turned out to be spasms in my diaphram. I'd thought that the reason that I had a hard time breathing was due to over-medicating, but after all it turns out to be spasms. And now, as for the last 3 weeks, I've had a real hard time getting any rest at all. Once I start to fall asleep whether in my chair or in my bed which is seldom due to fibromyalgia (that too is due to the spinal cord damage), I fall asleep for a second only to find myself: eyes wide open and gasping for air and in a state of shock. This is a subject for another day. So, here I am unable to sleep, hurting from the neck down and especially in my legs, and wondering if this pump is ever going to work at all. And, as I think about it, since now I am taking my oral muscle relaxers and pain pills at the rate DOUBLED from what I took them before I got the pump, I am beginning tonight to wonder if the pump is working at all!!!!!! I think that either it's off for some reason, or the catheter has been compromised one way or the other: a kink, or separation somewhere along the way. I have an adjustment scheduled for tomorrow at 10 am, so I'm pleased with that, but I wonder if there are any other complications I have to worry about from having the baclofen discontinued abruptly like that? Any help or suggestions would be greatly appreciated. Also, I was given a telephone # by which I could get in touch with my Dr. So far I've called them at least once a week and so far I'm lucky if they call back within 24 hrs.!!!! That's messed up!

[mik978]

thanks rdf. I am still questioning getting it due to all the horror stories I been reading on it.

[icberry]

Baclofen pump facts
The baclofen pump is used to provide medication directly to the spinal cord, typically baclofen, when the oral dose exceeds the recommended maximum dosage. It is produced by Medtronic and is about the size of a hockey puck. A catheter runs from the pump along the abdominal wall where it is anchored to the spine and punctures the spinal cord. It is possible for the catheter to be placed above the point of injury. I have mine placed at C-4. It can provide medication both continuously or in bolus amounts (large amount at a time) and is typically delivered in micrograms. The pump itself is located just below the skin somewhere in the abominable section. Mine is located on my right side. The battery lasts anywhere from five to seven years at such a point when they need to replace it, but not the catheter. To fill the pump, a needle gets stuck through the skin and a port in the middle of the pump. To reprogram it, a scanner is placed directly over the pump to scan the pump and get the settings at which point they can change them and program the new settings into the pump. MRI's are not a problem with it as it automatically shuts down as soon as it senses the magnetic field. If anyone has any information to add to this, go for it.
As far as medications that can go in it, baclofen and clonidine are a typical mix to help with spasms and some pain. You can add Dilaudid or a number of other liquid medications although I found they aren't very effective for central pain, at least not long-term. And for me, a lowered my testosterone level and I put on a ton of weight.
I have a lot of experience with this thing so if you have any questions that aren't answered here by me or others or doing a search, feel free to ask.

Will someone please make this a sticky post. There are a lot of questions about it and I think it would be good to have them all answered in one place.

I'm 21 years old with spastic CP, the CP affects my legs for the most part. It also affects my fine motor skills in my upper body. I am taking 15mg of valium daily. The valium works but is also making me somewhat tired in class and effects my ability to concentrate. I have been on valium for 8 years or so. I have been on baclofen before at the age of 5 until about the age of 13 at which point I was taking the max daily dose. I have tried it again recently and was to fatigued after getting to 5mg daily at which point I stopped using baclofen. I'm at a point in my life where, I need to be able to concentrate in class and in daily life. I have some reservations about getting a pump the first is how well will it work for me since it didn't work well orally. The second issue I have is, somewhat superficial, but I don't like the idea of a visible pump in my body. Another concern is what is the initial recovery like, I've had numerous surgeries and that part dosen't phase me I just don't know how long it takes to start feeling somewhat normal.

If anyone could answer these questions or has some advise that would be great to hear.

[rdf]

You need to set up a test dosage, to judge the efficacy. Intrathecal baclofen is much more powerful, even in minute amounts, than oral baclofen. That's why most probably go to the the pump, because the oral med isn't working.

It's an easy surgery. I had it done on an outpatient surgery basis. Takes a couple weeks for the staples to be pulled or what have you, but it's not really that difficult.

It would be nice if you could get off the Valium, to help you better concentrate. I'd ask my doc for the trial dose. The aesthetics don't bother me, and probably won't bother you, after a week or so. It's hardly noticeable even with just a tight tshirt on - at least in my case.

Good luck.

I'm 21 years old with spastic CP, the CP affects my legs for the most part. It also affects my fine motor skills in my upper body. I am taking 15mg of valium daily. The valium works but is also making me somewhat tired in class and effects my ability to concentrate. I have been on valium for 8 years or so. I have been on baclofen before at the age of 5 until about the age of 13 at which point I was taking the max daily dose. I have tried it again recently and was to fatigued after getting to 5mg daily at which point I stopped using baclofen. I'm at a point in my life where, I need to be able to concentrate in class and in daily life. I have some reservations about getting a pump the first is how well will it work for me since it didn't work well orally. The second issue I have is, somewhat superficial, but I don't like the idea of a visible pump in my body. Another concern is what is the initial recovery like, I've had numerous surgeries and that part dosen't phase me I just don't know how long it takes to start feeling somewhat normal.

If anyone could answer these questions or has some advise that would be great to hear.

[icberry]

Test dose a success on to the surgery

I had the test dose done on the 14th, it was a great success. I had increased mobility when I was able to walk with my doctor for a few minuets. I experienced a point durring the test dose of 95% spasm relief. It was a very weird, but great, liberating feeling due to the fact I have been dealing with spasms throughout my life due to, my CP. I got a couple hours of my life with almost no spasms. My Mom was almost in tears when she saw me walk with the the increased mobility. Needless to say I'm going forward with the surgery it's scheduled for Aug.2nd. I'm quite nervous about the fact I will have a pump in my body. I'm the most nervous about getting off of valium witch I've been taking for about 9 years. I was wondering has anyone had to get off of valium after they had their pump implanted? If so what was that experience like? Also what have other people experienced post op? Any responses would be greatly appreciated.

Thanks

[Overdoseaxium]

clyndamycin after my fourth pump and other things...

Well Hi there everybody who reads this.

I am a c7 with a baclofen pump and was wanting opinions from yous guys. I am new to this forum, and can honestly say this place is a very nice tool to have if situation requires.

I just recently had my fourth surgery on my pump. I have had multiple surgeries do to leaky catheters and out of date batteries. This round of surgery has been the most troublesome, though. My pump resides on my right side, next to my belly button. I am 6'1 and 135 pounds, very skinny. I am so skinny in fact, I can feel the refill port through my skin. So here is the first question:

1. Regarding the rotation and placement of the the pump... Before this last surgery, the access port was point toward my hip bone; in other words, the catheter connection (for those who know EXACTLY what the pump looks like) would be pointing roughly of at my right nipple. I dont the model number of it but it was exactly five years old. Do to the battery going out, I got the brand new model installed. Now however, the access port is roughly pointing at my left nipple (rotated 180 degrees from afore mentioned.)

How are these things supposed to be inserted? Access port to the hip bone, or left nipple?

2. They gave me Avelox and Clyndamycin, and now my bowels are messed up. I am bloated and feel like I have to go to the bathroom all the time. I dont know the extent of the forum rules, so I'll answer any questions that might be asked. I was wandering if anyone else has gone through this, and any advice would be appreciated.

[McDuff]

Re: #1 I don't think there is a set position for the pump, seems to be up to the surgeon. I'm on my 2nd pump, implanted to the right side of my belly button. My first "pointed" to my right hip bone, the 2nd points to my left nipple. I much preferred the 1st, it seemed to be less interference with my ribs.

You are skinny, I could see where this could interfere with you even more. I'm 5'10 @180.

No idea of the drugs in #2, sorry.

[Overdoseaxium]

Thanks for the reply. I have reviewed an x-ray, and it seems that since the connection point is at the access point, the catheter has to double back on itself to continue its path to my back. The catheter seems to be getting stressed on its journey but I cannot be certain, I dont know how durable they are.

Any insight is welcome. I am also talking this over with my pump doctor and would enjoy any response. I will post what my pump doctor has to say about the matter and will share the results with yous guys/gals.

You can also PM me with any concerns/questions.

Overdoseaxium

[Overdoseaxium]

I have talked to my pump doctor and my surgeon and these are the responses:

pump doctor: he says that most of the time, the pumps are installed wherever the patient requests as long as it makes sense based on weight and living habits. They are usually installed in a manner in which there is a loop of some sort, I guess in case it moves around a little during normal moving around. The medtronic guy also agrees.

surgeons nurse: she says the reason they did it in that manner is because my suture spot had healthy tissue so they used the same one. Which makes sense to me.

Overall I am happy that it is working, although it is very uncomfortable. I will be going back in to get it turned around soon I hope, and will post how that goes.

Boy, that clindamycin and avelox sure makes things difficult, but I'd rather go for that ride than get an infection. Hopefully they can prescribe some other antibiotic that doesn't make me sick like that.

[rollin64]

I have talked to my pump doctor and my surgeon and these are the responses:

pump doctor: he says that most of the time, the pumps are installed wherever the patient requests as long as it makes sense based on weight and living habits. They are usually installed in a manner in which there is a loop of some sort, I guess in case it moves around a little during normal moving around. The medtronic guy also agrees.

surgeons nurse: she says the reason they did it in that manner is because my suture spot had healthy tissue so they used the same one. Which makes sense to me.

Overall I am happy that it is working, although it is very uncomfortable. I will be going back in to get it turned around soon I hope, and will post how that goes.

Boy, that clindamycin and avelox sure makes things difficult, but I'd rather go for that ride than get an infection. Hopefully they can prescribe some other antibiotic that doesn't make me sick like that.

i "had" a pump and the dr,s i talked to also there being a loop to compensate for twisting around and bending over, etc.

[Overdoseaxium]

Yeah, I can see how that would be beneficial.

Are there other people on here that have had a baclofen pump removed? I am curious as to what procedure was done to correct the spasticity problems.