baclofen pump?

[John1]

Well that's a good news/bad news story TxRR. Sorry that you ran afoul of insurance. Thank you for the update. I may seek out botox for my leg spasticity when I see my neuro this summer.

 

[peter57]

Hi John,

thanks for the info re links.

i have put the link to my tests below.

re me.
i have stopped getting the pump adjusted as we think we have it as good as we can.

i am slowly slowing down though.
might be time for another look this year.



https://www.alsforums.com/forum/general-discussion-about-pls/11586-baclofen-pump-tests-use.html


cheers

Peter

 

[John1]

....
re me.
i have stopped getting the pump adjusted as we think we have it as good as we can.

i am slowly slowing down though.
might be time for another look this year....

cheers

Peter

Peter, I'm sorry to hear you are slowing down. I am too. Overall, do you feel that the baclofen pump has helped significantly with spasticity? Would you get again knowing what you do now? One the problems I have with getting it is that having to carry some of its parts around externally sound like a real impediment. Do you find it a nuisance in that regard? So many questions!

John

 

[billbell52]

There is wide variation in the severity of symptoms in PLS. Some people are in a PWC after 4 years and some can use a walker after 20. I looked into this after my Dr. recommended it. At the time I was using a walker. Even small doses of Baclofen pills caused me to have weakness. I also got sleepy but the pump gets around this. It can also take a lot of adjustment. After a lot of research I decided it was not for me. I still take Baclofen at night for leg cramps. I may take some during the day but not often. I am in a PWC so weakness in walking is not an issue.

 

[golf4kev]

I am new to this site (Tifferbee's Mother) and I was wondering how many people are currently using a baclofen pump, and if you find it gives you some relief from your spasticity?

Hi Jean,
I had my pump implanted in January.
So far I as well as my docs, pt and ot have noticed significant decrease in tone and spasticity in my legs.
My Physiatry doc told me it could take months of adjusting to get the right dosage.
So far I am happy with my decision to go with the pump.

 

[peter57]

Hi all

John my pump is internal and the filling up is done via a needle in to the pump. Adjustments also from the outside.

When I did the trial they had the pump external



Is it working who knows, I am very stiff in the legs but not too bad in the upper part of the body.

the area that benefits from the pump depends on the location of the catheter In the spine.
breathing etc is more important than walking, so it was placed to give the upper body the most benefit.

I will continue to use it, even with the 800km round trip to have it refilled


Cheers

Peter*

 

[John1]

Hi all

John my pump is internal and the filling up is done via a needle in to the pump. Adjustments also from the outside...
Cheers

Peter*

So there is nothing outside your body? No wires or tubes? Does the internal pump bulge out or would an observer even know you had one? How often do you need a refill?

I guess one of my concerns is that it would in any way interfere with life's daily activities.

Thanks Peter.

 

[peter57]

Hi John,

My pump etc is totally internal.

there is a slight bulge of the pump when i lay down. No more than my ribs though.

Sitting up its ok.

With a normal shirt on you wouldnt know I had one.

with the refills it depends on the rate you are on and the strengh of the Baclofen.
i am on a reasonable high rate and have it refilled every 8 weeks

Cheers

Peter

 

[John1]

Thanks Peter.