Baclofen pump - yeah or nay

[momofsixkids60]

I looked all over for this thread and couldn't find it, so here goes. I suffer from severe spasticity in left arm and neck area as well as in both legs starting from toes to the back of both legs.

I am dosed out on Baclofen 20mg 4X a day, along with Flexeril, Soma and Zanaflex not counting my night time meds. Going to clinic next Wednesday and would like opinions on those who have opted for the pump. I want the Good, the Bad, and the Ugly. Don't hold anything back! Thanks for your help in advance.

Keeping everyone in my prayers,

Kimberly

 

[LizT]

i dont know any PALS who have it. I did take care of a young man with severe CP who had one. This guy was so tense all the time that his muscles were actually huge! Anyways... with him, I noticed that when it was getting close to have it refilled, he would be more spastic and sometimes cry because of them. He did have to go into the drs to have it injected into the pump.
This may be a good thing now, but depending upon how far you progress, it may become a pain in your A$$ to have to go in to have it filled. Thats my two cents.
I love ya Kimberly Lady!

 

[momofsixkids60]

I guess thata a nay znd a yeah. So 1 to 1. I just want some relief. I mean I haven't ceen able to stretch my legs out in months and the toes, well that's another story. They are frozen in the perfect Babinski mode for about 18 mos now.

 

[LizT]

i dont want to burst your bubble Kimberly, but they may not ever straighten out again. With them in that position for so long, the tendons and ligaments shrink.
Im sorry hon. You may still get relief though.

 

[BLPhill]

Hi Kimberly

I'm at 20mg five times a day! The baclofen pump is a process, takes forever! I met with all the necessary drs I needed for the evaluation. Plus I got all the information from medtronics. I'm just not sure it's worth it. There are numerous things that can go wrong with that pump. I am now at the point where I have to let my neuro know if I want to proceed with the trial.

One has to do the trial first to become eligible for the pump. Problem is, I'm having a hard time wondering wether or not I want a needle in my spine. I'm undecided at this point in time.

 

[momofsixkids60]

Liz, my bubble burst a looong time ago. Just want some relief. It sucks when the spasms move to the back of the thighs and you can't sit in your chair because of the pressure.

 

[LizT]

"dislike" (someone needs to make a dang dislike button)

 

[momofsixkids60]

Thank you Liz, I have asked for a frowny face one whn someone posts sinmething that is sad. You don't want to like it because it mad you dad or angry.b we need somebody to add tghe sad fsce nect tgo the like button.

Helen this one is for you to figure out and make it right1

 

[peter57]

Hi Kimberly

I have had a pump fitted , please see my thread called

Baclofen pump test / use

Currently no improvement .

I am heading back to have a top up and a check to see all is ok with it next week.
Will keep informed of outcome

Cheers
Peter

 

[momofsixkids60]

Peter.

Thanks for the info. How invasive was the procedure? Outpatient? Sedation used? Where is it placed? Is it similar to a diabetic's pump?

I'm just so unsure but want relief!

Thanks for the info and any updates you get.

Much Love to You,

Kimberly

 

[momofsixkids60]

Betty.

Somehow you snuck in on me between Liz's posts. So I can go up to 100 mg a day. The docs told me no more than 80. Maybe I should push for more drugs and I also didn't realize you had to go through a process.

Hmmmmm, needle in the back, you say! Well I had my 6 children natural with no epidural because I didn't want a needle in my back. Now here comes problem #1. I don't mind it anywhere as long as I can see it.

Thank you for this info, starting to shy away a little bit!

Much Love to You,

Kimberly

 

[Alyoop]

Kimberly, your insomnia is contagious. It's given intrathecally ( like an epidural ). Peters the expert as I said, and I see he has joined in the post.
As for the baclofen dose.....Hubby has headvinjury patients on huge doses of baclofen! The sedative side effects can of course be an issue.

 

[Okie2]

Just a ? Do you do any streches? I know it may be painful, but they did seem to help get me past that point. I no longer have that issue unless I cause them. I am in a power chair but can still walk short distances. I take baclofen 20mg at night. I hope you can find the relief you are looking for.

 

[Whitsend]

I've had the pump since 2008.. If I had it to do over again, ? ? ?. Perhaps if I hadn't, I might be like you and having problems sitting. It wasn't an easy process, but I've experienced no issues. And the drug is a steady level, so there is no difference from the beginning of a fill-up to when you get the next fill-up. Just get the refill before the alarm date. They make next appointment before I leave so we alwys know its well before the alarm date.

I see you are in SC. Where would you be having the procedure done?

I get it refilled every six months. No big deal. Some things I will warn you about:

- If you think you will want to volunteer for the stem cell trials , forget it. Having that needle in your spine makes you ineligible.

- The drug will only work on your lower limbs. They can't place the catheter high enough to benefit the arms.

- You may notice an acceleration of the ALS after the surgery. This is not due to the pump or the baclofin. Just having the anesthesia can cause that.

It's a big decision, think long and hard about it.

 

[momofsixkids60]

Thanks for all the info! I guess I will discuss it with neuro next Wednesday and wait for decision with the Mayo Clinic in January. I am not a big fan of needles, I really thought it would be similar to the terbutyline pump I had for some of my pregnancies.

And then again surgery and sedation....hmmmm, right now I have had my fill of hospitals! Maybe choking the pills down might be the only option unless I have lost any weight by January.

Much Love to All.

Kimberly