Baclofen pump FAQ

[knowthill]

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]

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?

[Chari]

I would like to add a short response. Prior to getting my baclofen pump, of course I was on oral baclofen and found out that oral baclofen destroys your liver. I was upset not having been told this information before I was on it for several years.

I am very pleased with the baclofen pump, I just wish they lasted for more than five or six years.


Chari

[Lazlo]

I would like to add a short response. Prior to getting my baclofen pump, of course I was on oral baclofen and found out that oral baclofen destroys your liver. I was upset not having been told this information before I was on it for several years.

I am very pleased with the baclofen pump, I just wish they lasted for more than five or six years.


Chari

I asked a question here recently about the effects of baclofen on the liver. According to Dr. Wise, baclofen "is not known to be hepatotoxic or renal toxic at 120 mg/day". Who told you that oral baclofen destroys the liver?

Another question for those who've had the pump for a while. Does having the pump restrict your range of movement at all? If you twist around a lot or are very active, is the catheter more likely to slip out of the spine?

[rybread]

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.

They can have it deliver bolous amouts any time in any amount to get you off orall dose at bedtme or whenever

[Apparelyzed]

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

Hi,

So far the Codman pump has been fine, and is not noticeably bigger than the Medtronic pump.

I have not found any of the pumps restrict my movement, however, if you have sensory sparing, the pump may make sleeping on the same side as the pump is implanted a little uncomfortable, but you do get used to it.

In the UK, these pumps, Medtronic and Codman and the refills are fitted and maintained for free under the NHS.

Regards

Simon

[alhavel]

Ohhhhhhhhhhhh,,,,,,,
The pump, I have a Meditronic, it does stick out some, it does get in the way if you can bend over, but,,, it does help, and it is easier than taking oral Baclofin. I've turned mine down {had it done} as low as I can go. Believe me I know it, it is a double edged sword, more strength, more spasticity. I'm on the edge right now, my goal is to come off of it someday, today is not the day. It's made me progress the way I am today I can't really get that mad at it.