Considering a Baclofen pump

[KylieGirl]

Hi everyone, thank you for having me! I have Cerebral Palsy and this is the only forum i have found that talks about the pump, so although i don't have MS, i hope its ok. Have had a read and it has been so helpful.

There are a few questions i would like to ask those who have a baclofen pump.

At the moment i can weight bear and transfer to and from my wheelchair. The neurosurgeon has said that they would give me an external pump for the test dose so they can monitor how it affects it so i can hopefully still have that bit of mobility. Has anyone here had the test and no longer been able to weight bear?

Secondly, the only part that worries me abould having it is that it can make you feel dizzy and sick - is this common?

Thank you so much for your time, your help would be so appreciated.

Love

KylieGirl

[rdmc]

Hi everyone, thank you for having me! I have Cerebral Palsy and this is the only forum i have found that talks about the pump, so although i don't have MS, i hope its ok. Have had a read and it has been so helpful.

There are a few questions i would like to ask those who have a baclofen pump.

At the moment i can weight bear and transfer to and from my wheelchair. The neurosurgeon has said that they would give me an external pump for the test dose so they can monitor how it affects it so i can hopefully still have that bit of mobility. Has anyone here had the test and no longer been able to weight bear?

Secondly, the only part that worries me abould having it is that it can make you feel dizzy and sick - is this common?

Thank you so much for your time, your help would be so appreciated.

Love

KylieGirl

Hey Kylie,

Of course you're welcome on the site.

I don't think any of us have dizziness or sickness from our pump (I shouldn't speak for everybody, but we've discussed issues a bunch and I don't think that's ever come up.)

Baclofen when taken orally can cause pretty severe drowsiness, and with it I imagine dizziness. Baclofen in the pump does not affect your whole body, like when you take a baclofen pill. Therefore, the normal side effects are almost non-existent (drowsiness, etc.)

Think of it this way, oral baclofen is measured in milligrams. Intrathecal baclofen from the pump to your spine is measured in micrograms, in other words 1/1000th of a milligram. The tiny amount needed is because it is delivered directly from the pump, through the catheter, and to your spinal cord. And because the drug is not ingested, it doesn't have whole body side effects usually.

I don't know if any of us had the test with the external pump. We mostly go get a "shot" of baclofen directly into our spine, and then the doctors see how we do over the hext several hours. They see if our spasticity decreases.

As far as transferring...one of our members, Blue Giraffe, has a baclofen pump, and she had some issues with upper body weakness due to her pump, so they adjusted her pump dosage.

I imagine other folks will chime in.

Are they treating you for whole body spasticity? With us MS folks, they concentrate mostly on relief from lower body/legs spasticity. Do you know where they intend to insert the catheter, in other words at which vertebrae they intend to insert it.

Two things...go to youtube and search baclofen pump. I'm pretty sure I've seen folks with CP on there showing their results of before and after the pump. Also there's a yahoo group called pumpsters, and they have lots of info on pumps, but most of those members have pain pumps, however, there are a people on that forum with baclofen pumps.

Keep asking questions, we don't mine

[hunterd]

"At the moment i can weight bear and transfer to and from my wheelchair. The neurosurgeon has said that they would give me an external pump for the test dose so they can monitor how it affects it so i can hopefully still have that bit of mobility. Has anyone here had the test and no longer been able to weight bear?

Secondly, the only part that worries me abould having it is that it can make you feel dizzy and sick - is this common?"

i have never experienced any dizzies or any sickness from this.
i can no longer weight bear, but my spasticity was so extreme that I had two choices that I could make, I could remain able to bear weight but along with that ability I would have to put up with the spasticity. My other choice was to eliminate the spasticity, but I would also have to eliminate my ability to bear weight. At the time I could barely walk at all so it was not a difficult decision for me to make.

[Kimba22]

Hi KylieGirl,

Welcome to MS World! We're glad to have you and hope the baclofen pump will also help you.

Some degree of spasticity also helps us to stand up / walk. When the dose of intrathecal baclofen was too high for me, I could no longer stand. That happened to me with the test dose, which as rdmc mentioned, was just a bolus dose of liquid baclofen injected into the lower spine (and completely wore off over the next day). For me, that meant the initial dose of medicine that was programmed in my pump was much lower than what I really needed. It was then adjusted over the next several months to see what dose was the most helpul for my legs. Again, for MS patients it's primarily used to help with spasticity in the legs. My dose would have to be a lot greater than it is to work on my arms.

Wearing an external pump sounds like an awesome way to find out how this will work for you. I've never gotten dizzy or sick from the medicine delivered through my pump. When I first started taking oral baclofen (which is a much higher dose), I remember it made me dizzy (but never sick). Eventually, that side effect went away for me as my body adjusted to the medicine. It's hard to know exactly how it will affect you, but if you feel sick, it will stop as soon as the dose is lowered.

I looked on Medtronic's site, and there is a section devoted to cerebral palsy patients. I hope it will also help answer your questions. http://www.medtronic.com.au/your-hea...rapy/index.htm

I hope you'll let us know if it helps you! Good luck.

[bluegiraffe]

Hi KylieGirl,

I've had my pump for almost 4 years and it's been very good for me, don't even really know it's there, except for refill appointments (every 6 months or so).

I was not able to bear weight in my legs before the pump, but it did not change my ability to use my upper body for transfers. The pain, spasms and spasticity relief eliminated my need for oral medications after getting the pump. Oral baclofen did not help my severe pain/spasticity and made me very sleepy and weak. I do not feel any negative symptoms like that with the pump.

The key is the dose for each individuals need. My dose was set and kept for quite some time and later after waiting a longer time before my next refill I felt much stronger in my upper body and surmised that maybe the weaken dose was the reason. My doctor thought I was crazy but lowered my dose to confirm. Long story short, the reduced dose did not make me feel as stronger as I did earlier, but no negative results in my legs either, so kept it with that dose. Your doctor will work with you to find the right dose for your situation.

I have joined many of the Medtronic sponsored webex/conference calls that cover the baclofen pump with various patient stories, many with CP and MS. I think some are posted here on MSWorld or maybe you can also contact your local chapter to get on the email mailing list for the next one. The seem to have fairly often.