baclofen pump

[LesLL]

My daughter is 45yrs. has progessive and her Dr. wants to put in a pump. We need someone in the NW OKC, OK. area to take care of this. She has medicad, and is on the Advange Wavier program. Can you help? Her MS is getting bad. Thank you all, Nana Judy

[Lulu54]

Hi Jason, you may not have noticed that this is a really old post and most people won't stop to read it because of the age.  Can you copy your question and put it into a new post where everyone will see it and help with answers?

you might also do a search here and see what you find in our archives.

I do not have personal experience with the baclofen pump, but I believe others here might be able to share their own personal experiences.

Welcome to the forum - I hope we see you around more.
Lulu

[jaytag]

My name is Jason and was diagnosed with MS back in  aug 2002. Since that date I have had severe spasms in my left leg, reduced movement of my arms, spasms at night, and a number of other times too. I have waited for about 2ys for this operation and have now had a consultation to proceed with it. I am so pleased that this has now been actioned and just waiting for a date.
I do however have a few concerns, what does it feel like?, how is it topped up?, will I be able to take steps?, even walk?. Who know ehh? if anyone has input please feel free to leave a comment. My deepest thanks Jason

[Heather3418]

The Baclofen pump is used quite often in person's with uncontrollable spasms.  Especially spasms that are not helped by conventional medications, as is my case.  I am waiting until I feel I cannot do without it, to then give it consideration.

So by all means, Honesty...post the information you have.  Perhaps it would be good to start a brand new post discussing the pump and what it is used for.  I am sure that many forum members would be interested to have the facts from someone whose life is touched by it's use.

Thank you again for posting this important information.  

All the best to you and your son  You are in my prayers....

Heather

[honestyb4greed]

No problem.  I hope the information will help others and as I said if anyone would like any additional information that I could possibly help with- I would be most happy to try  to help. My wishes for a safe, healthy, and Happy New Year  to everyone!

[Heather3418]

Thank you SO MUCH for posting YOUR personal experiences with the pump.  I believe this is very helpful information for all that could be facing the baclofen pump or for that matter a pump that delivers pain medication, right to the spinal cord.

It has been suggested to me that I have one implanted, but decided it wouldn't look good with my bikini....just kidding, I am long past the bikini stage of my life after a few kids and all these stretch marks.

But I sincerely do thank you for posting.  This is invaluable information.

Heather

[honestyb4greed]

My 21 yr old son has this pump. It is very helpful for pain mgmt or muscle spasticity. My son has cerebral palsy and uses it for spasticity.  However the principle is still the same regardless if med is for pain or spasticity. A small pump is implanted in abdomen (side,usually) and a small catheter leading from it is placed into the spine which releases minute amounts of the medication which goes directly to the source of the pain, without affecting the mind.  It typically helps the lower body more so than the upper, but individual responses may vary.  I do know several people who have had them for pain mgmt and are happy with the results.  As with a spinal tap be very cautious to follow Dr's orders to lie flat after surgery as to prevent a spinal headache (which my son got,even after following orders). Overall we have had good results and have had a 2nd one implanted as the battery life only is good so many yrs (not sure but I think 7-10 yrs). Most importantly- do find a good Dr. to follow up and refill the pump. We did have a bad incident where the Dr messed up and did not schedule refill in time.  My son went into withdrawals and it was pretty scary. But those things are not normal -we just always seem to have bad luck!  And of course we did change  doctors.  Best of luck to you and your daughter.  And let me know if there are any more questions or concerns I can help you with.

[kitten o]

THANKS ALSO, THAT ANSWERED MY QUESTION.
KITT

[LesLL]

Yes it does help. Thanks , Judy

[Quixotic1]

The baclofen pump delivers the medicine directly to the space around the brain.  The med is very active there and it can give control over spasticity without the peaks and valleys of oral meds which allow the spasticity to get out of control.  Control over the spasms and tight muscles is better with the pump.  Downsides - and again this is not complet, because it is not my field - include potential for infection in the CNS (meningitis.  And this does not happen commonly) and if the pump is putting too much med out it will temporarily cause muscle weakness until it is regulated.

Neurosurgeons place pumps and shunt regularly.   You would want a neurosurgeon with a lot of experience in placing them, like at a university medical center, or the one affiliated with a large neurology clinic or department that sees large numbers of people with Cerebral Palsy and Multiple Sclerosis.  In my opinion.

Does this help

[LesLL]

Maybe  I did not understand. That sounds like a simple part of the pump thing. Having it done and what the benifits would bring seem to me the big ??  Our Neuro, well sometimes I feel that Les isn't given enough time at appointments.  Thanks to all of you who are talking to me about this. Judy

[Heather3418]

My old boyfriend had his pump filled at the Pain Management Center where he lived in Norfolk, VA.  Doesn't you Neuro know where the pump can be filled and checked?

[LesLL]

I am new to this forum. Thanks so much. You are better than the Doc. We just need someone to service the pump. Why it would be so hard to have this taken care of living in the large city like we do? Everything is going wrong at once. Pig suckin' !!!!!  Lesll is about to let the Ol' gal out and have a big fit!! Nana Judy

[kitten o]

WHAT IS THE BACLOFEN PUMP?
WHAT DOES IT DO FOR  MS ?
SORRY FOR YOUR DAUGHTER,
I HOPE SHE FEELS BETTER.
SORRY I CAN NOT HELP.
KITT

[Quixotic1]

Are you looking for a competent neurosurgeon?  Or for people's experiences with the pump?

Quix

[Heather3418]

What exactly can we help you with?  Do you need advice about the Baclofen pump?

I dated someone with MS that had the pump for his spasicity.  It really helped him but I always felt that he was on too high of a dose, which made it very difficult for him to walk.  He needed some spasicity to get those legs moving.

They will do a test of Baclofen into the spinal space first, to see if it would be beneficial to even implant the pump.  My ex boyfriend, has a small, round device implanted in his lower abdomen, which is refilled at 3 month intervals. He said the hardest part is having that little injection through the skin to get to the pump to refill it.  But yes, it has helped him tremendously.

Welcome to our group by the way. I hope that you will get your daughter to drop by our forum.  We would love to hear her story.  Everyone's story has helped so many.  We learn so much from the experiences of others.

Thanks for posting.

Heather