Best Treatment for the "Claw" & Bac. Pump

[manderson]

What are your experiences with the "Claw?"

I'm on the max dose of Baclofen my Dr. is willing to give me. I also take Tizanidine and Klonopin. I am considering a Baclofen pump, mostly to keep my legs working and for back spasms. I also know it's best to start the pump when your still ambulatory.

The, "claw," is a big concern for me because I'm a musician, so, my concern with going to a pump is that I won't be able to keep the claw at bay. I fear that, with the pump most effective on areas below the place of the catheter, I won't be able to take enough oral Bacloen to loosen my hands without making my legs collapse.

[rdmc]

What are your experiences with the "Claw?"

I'm on the max dose of Baclofen my Dr. is willing to give me. I also take Tizanidine and Klonopin. I am considering a Baclofen pump, mostly to keep my legs working and for back spasms. I also know it's best to start the pump when your still ambulatory.

The, "claw," is a big concern for me because I'm a musician, so, my concern with going to a pump is that I won't be able to keep the claw at bay. I fear that, with the pump most effective on areas below the place of the catheter, I won't be able to take enough oral Bacloen to loosen my hands without making my legs collapse.

I have a pump, but take baclofen orally as well to help with facial spasticity. However, I do have a claw on my left hand (not severe, but there), and was amazed that my pump actually helped with that as well.

I asked the physiatrist for an explanation, and she said it is assumed that the relief from a baclofen pump is below the level that the catheter is placed (mine is T9), but they often see that it loosens up muscles in the back and shoulder area, and can also help with claws. Also, you may find a neurosurgeon who is willing to put your catheter higher than T9 which could give you some upper body relief as well.

I know most MS patients have their catheter placed at T9, but I've read about CP patients and quads who have theirs placed higher.

Do the test, talk to the neurosurgeon, see what they say about your claw.

[manderson]

Thanks!

Good to know you can still do oral Baclofen, even with the pump. My neurosurger just got back from deplyment, so it wlll take me a while to get in with him

[manderson]

I'm getting the pump sometime in November. I actually had the test a little overa year ago. At the time, it was no better or worse than just using oral Baclofen so, I decided to put it off, but it's time. I could have it done as early as the 16th of Oct, but I have obligations that will put it off until mid November.

I'm going to try for the smaller pump for a couple resons. One, I'm skinny, and two, I play guitar a lot, and it looks like the position will make my guitar rub on the site, especially with a larger pump.

[bluegiraffe]

I have the smaller pump.
The initial disadvantage was that it needed refills more often then the larger pump.
But it ends up not the case; I get a higher concentrate of the baclofen during my refills that lasts many months to where the smaller pump worked out perfect for me.

[manderson]

Cool, thanks!

So, with the normal concentration Baclofen, isn't it usually about 3 months between fill-ups?

[rdmc]

Cool, thanks!

So, with the normal concentration Baclofen, isn't it usually about 3 months between fill-ups?

When I first got my pump, and was using a pretty small amount...it was about 6 months (that's the longest you can go.) As my dose has been upped, I'm at about 6 months now, but I have the larger pump.

[rdmc]

oops, just as I submitted that I noticed a typo, I think...it's about 3 months for me now.

[bluegiraffe]

I think it was closer to 2 months for refills for my first few - then my physiatrist suggested the higher concentration and now need refills at 6+ months.