Baclofen pump FAQ

[rybread]

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.

[sjean423]

Sounds good to me!

I would like to add

Before a pump is decided upon, you will have a trial to see how you react to the intrathecral Baclofen. They will administer 50 mcg of baclofen directly into the spinal fluid (similar to an epidermal), and your reaction to the medication will be monitored for approximately 24 hours. (The medication typically wears off in about 6-8 hours.) This will help determine if this therapy is appropriate for you.

[jessie.gray]

Sounds good to me!

I would like to add

Before a pump is decided upon, you will have a trial to see how you react to the intrathecral Baclofen. They will administer 50 mcg of baclofen directly into the spinal fluid (similar to an epidermal), and your reaction to the medication will be monitored for approximately 24 hours. (The medication typically wears off in about 6-8 hours.) This will help determine if this therapy is appropriate for you.

What signs are they looking for to see if the medicine in the pump works? My spasticity is particularly bad at nighttime, rather than the daytime. Do they look for your muscles relaxing or a reflex change?

You might also want to add something I read in a brochure about the pump: you have to be consistent in getting to your scheduled refill appointments on time, because its dangerous to let the pump run dry without any medicine in it.

Jessie

[sjean423]

A PT examined me before the trial. and rated my tone in various positions, I was 4-5 on a scale of 0-5 everywhere. After the trial injection, she monitored me, making notes every hour based on changes from her initial exam. I pretty much went down to a 0 everywhere.

After the surgery to implant the pump, it will take a while (weeks to months) to get the dose adjusted to what works best for you. In your case the computer can be programmed to give you more medicine in the evening, or even a bolus (larger does all at once) at a certain time (say 6pm).

[rdf]

What signs are they looking for to see if the medicine in the pump works? My spasticity is particularly bad at nighttime, rather than the daytime. Do they look for your muscles relaxing or a reflex change?

You might also want to add something I read in a brochure about the pump: you have to be consistent in getting to your scheduled refill appointments on time, because its dangerous to let the pump run dry without any medicine in it.

Jessie

Screw them, jessie. YOU will be able to tell how well it works. Have them administer the test injection in the afternoon since your spasticity is worst at night. You'll know if it works, or not, right away.

I knew immediately. I tried to transfer from the hospital bed into my chair after I woke up in the hospital bed, but I didn't have any spasms, and I fell onto the floor (didn't hurt myself). Up until that point, my legs would always stick straight out every time I'd transfer, finally loosening up after a few minutes just enough for me to transfer, but always spastic and muscles always flexed to some degree, from my feet to my chest. Every transfer was an adventure, with the outcome unknown. This was my life 24/7 before the pump. Without it, I'd still be tying bungee cords around my feet and footrest to keep my legs from spasming and knocking people around and such.

But all that went away after the test injection and subsequent pump implantation, and I had to relearn how to transfer without the accompanying spasms I was so used to. Took me a day or two to get used to not having the spasticity while transferring. But I have my dosage dialed in now where I get some small spasticity still, because I didn't like the complete lack of all spasticity. When I lie down in bed, I'll have the full body spasms for a few seconds. But then they stop and I can sleep in peace, something I was never able to do before the pump.

Also, they can program it for more baclofen delivered at night. I'd give it a try, it made my life actually livable.

I've used the terms spasticity and spasms interchangeably here...I know they have specific definitions.

[sjean423]

Agree with rdf here about wanting to keep some tone. I didn't realize that I use my spasticity as well. I need some for transfers, or like him, end up in a heap of spaghetti on the floor!

[McDuff]

If linking to other threads is ok for a Sticky, here is my short thread on getting the trial done, as well as immediately after getting my pump installed.

/forum/showthread.php?t=8007

[bookworm222]

baclofen pumps are great! i have spastic quad cp, and wouldn't live w/o m pump!

[sjean423]

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.

HEY!!

I just noticed that it HAS been made into a sticky! Thanks admins!

[Apparelyzed]

Just to add to the above.

I've had a Cordis manual pump ('92), and three medtronic pumps ('95-'05).

I now have a Codman gas powered pump which will not need replacing, as there are no batteries!

Any questions, just ask!

Simon

[knowthill]

Medtronic System sence 10/18/2005

Been throught the good ad bad with this system Medtronic so this is there web information page (Source)

[knowthill]

What signs are they looking for to see if the medicine in the pump works? My spasticity is particularly bad at nighttime, rather than the daytime. Do they look for your muscles relaxing or a reflex change?

You might also want to add something I read in a brochure about the pump: you have to be consistent in getting to your scheduled refill appointments on time, because its dangerous to let the pump run dry without any medicine in it.

Jessie

Had a physical Therapist do a range of motion before the spinal injection and one after. All I know is my spasms responded to the therapy and were within the guidelines required by Medicare.

Remember money is the main factor required to receive this treatment. The operation cost close to $60,000 and it cost approximately $4,000 to refill my pump every 6 months.

[knowthill]

You might also want to add something I read in a brochure about the pump: you have to be consistent in getting to your scheduled refill appointments on time, because its dangerous to let the pump run dry without any medicine in it.

Jessie

I take a small dose of oral Baclofen for just this reason. By small I take 10mg at 6:00am 10mg at 2:00pm and 20mg at 10:00pm. I need more at night too because of more activity at night. This oral dose lets me to always have fresh Baclofen and a prescription to use incase of a malfunction.

I had to ask for these consideration they were not offered. The down side it took 2 year of a weaker formulation in order to refine the dosage. Meaning I had to go in for a refill and reprogramming every 6 weeks, until my oral dosage and Infusion System were complimented.

[tigger74]

Just to add to the above.

I've had a Cordis manual pump ('92), and three medtronic pumps ('95-'05).

I now have a Codman gas powered pump which will not need replacing, as there are no batteries!

Any questions, just ask!

Simon

How long have you had this pump? Does it stick out a lot on your side? Any problems with it yet?

[dataow]

Travelling internationally with the pump

I have had 2 baclofen pumps since 1998. I like to travel, and in the near future may be in SE Asia for an undetermined amount of time. I would like to stay in another country for more than 6 weeks, and wondered what the best way to figure out how to get re-fills while I am there. Anybody know? I am a world traveller, which is a big accomplishment for me because I am a quadrapalegic with severe CP. So, I am ready to take my travels to the next level and stay away from Oregon for more than the 6 weeks that my pump goes between re-fills. Any online databases or something that list "service stations" for the pump?