Just wondered if anyone here has any experience with the Intrathecal Baclofen Pump?

Had an appt with my Pain Management Dr today to discuss my pain and collapsing and he has basically said that there's nothing more he can do for me in the way of pain medications as I have had almost everything.

The only option I have left now is to have the intrathecal pump implanted. It was mentioned a few weeks ago at a PT appt that he was wanting to inject into my spinal cord with Baclofen to see if it worked but that was all - there was no mention of the pump so it came as a bit of a shock and upset me a bit that we are having to consider such drastic options!

I'm booked in to have an MRI scan of the brain in 4-5 weeks as my Dr basically wants to rule out any other possibilities for the Dystonias I am having before deciding to go ahead and then depending on the results of that, I will have to have a lumbar puncture and epidural with baclofen in and see how my body responds to that. If all goes well, he will then ask the pharmacy to mix up a baclofen or placebo injection to check that the results were definitely from the baclofen and then proceed with the pump should we wish to do so.

Just wanted to get input from anyone who's had a pump whether good or bad before we decide to make a decision. My nanan had one for spasms due to MS and it worked well but she had lots of complications from it so want to make sure we are making the right decision.

Also my dr thinks i'm collapsing due to pain - does anyone else do that?? I've been collapsing lots during the day now and it is really scary!

Any input would be greatly appreciated!

Alison

Dear Ali,

There's a new Pain Pump/SCS section of the board here. See Lost Mary's story about her pain pump. It is so inspiring. For me, I am reserving it as my "Plan B." My pain mgmt doc in Boston has told me that he has excellent results with intrathecal baclofen for spasms.

I think it's exciting that you finally has a doc that is talking about a solution other than meds, which you have tried for a really long time without success. You have to keep plugging away until you find something that helps you get your life back. Don't ever give up!!

The very best of luck to you. I am fairly certain that the Pain Pump section of the board is located under Health Conditions - Medications - Pain Pumps/SCS. But if I messed that up hopefully someone else will come along and correct things for you....

XOXOX Sandy

H i Ali,

I have missed you, when Lindsay went in for her Ketamine Infusions, an implanted pain pump was discussed. There is a lot of controversy related to implants in children...due to there is still growth to be done. So before
you go and have something like that done, make sure that you weigh all options. Another reason for you collapsing, is part of RSD, your blood pressure could be dropping, (hypotension). sometimes depending on the meds that you take, your sodium level could be low. Which can be check in blood work. They need to check your bloodpressure while laying down for a while and when you stand up they should check it again.
Lindsay had problems with collapsing and it was her blood pressure dropping.

When are you collapsing? Is it when you first stand up after laying down or sitting for a while?

I am so sorry honey, I was hoping that you were doing well. Also, I posted a while back about some vitamins that Lindsay's doctor has put her on for anti inflammatory. They are anti oxidents. They seem to be working, you should check with your doctor about these as well. I wish there was something I could do for you.

Let me know what you decide to do.

Love Sandy