Baclofen pump

[stephc10]

I started Gilenya recently and everything is going fine with that. I do have and have had spasticity in my legs that interferes heavily with my walking. It has gotten worse and my neuro is strongly recommending the baclofen pump. I take oral baclofen and have tried zanaflex I am also on clorazepam (sp?). Nothing helps significantly. Has anyone done the pump? Had good or bad results? Very nervous about this! I am 36 and have two small kids-not sure how much this will interfere with my life. Any info. would be appreciated!

[kmallory1]

I've had a baclofen pump for about 2 years. Come to think of it, 2 years tomorrow!

I put off getting the pump for more than a year, I just thought it was going to be too weird.
Now I don't even think about having it. It doesn't hurt, doesn't show (I'm 5'8" and 150 lbs), and keeps me from having pain in my spastic leg.

There's a good thread on here in the medications forum (I think) titled "how bad was your spasticity" that discusses the pump for about 5 pages.

[jazzgirl]

Here's the thread that kmallory is referring to:

http://www.msworld.org/forum/showthr...+baclofen+pump

It's chock full of great information!

[rdmc]

This Friday will be 4weeks since I had the pump implanted. I'm still in the process of getting the dosage tweaked, so I still have a good bit of spasticity. But the difference it's made is nothing short of amazing.

for years I walked funny, couldn't lift my right foot more than an inch off the floor. I was told I had foot drop and dealt with it using AFO or a brace. My right hip was spastic and I couldn't walk a normal gait...couldn't put my right foot in front of my left foot...so it was step with the left, bring the right up to meet it, etc. I limped too, and appeared pretty gimpy.

So here we are a month after the surgery and my gait is perfectly normal. It wassail spasticity that was causing the problems. I took a good bit of oral baclofen and zanaflex, but never really noticed a huge difference other than the tightness would ease some.

The surgery wasn't awful, but I was not prepared for the pain I experienced post op...and it wasn't from the surgery sites or incisions. It was from using my muscles normally again. I had pain pills though, and I used them, but now ibuprofen is all I need to deal with the aches.

Once you've had the trial, you'll know if it will work for you. that's the nice thing...you get to "test drive"the med before you get the pump

PS...typed this on my iPad, so excuse any spelling errors..it's not letting me go back and check the post

[stephc10]

Thanks so much for the info. It gives me hope that many have experience relief with the pump. The spasticity is the only reason I have to use a cane. I used to just have stiffness but now am having spasms in the legs. I had my neuro. appt today and am getting set up for my trial run! I am so nervous about this but so hopeful!

[bluegiraffe]

Hi stephc10,
I got the baclofen pump 6 weeks ago and it has completely relieved my severe spasticity and severe pain in my legs.

If your doctor thinks it can help you; the trial is the best way to see if you are a candidate.

I lost my mobility most likely from the spasticity and contractures and now wish I would have done it sooner (you never know though).

Both the trial and surgery went fine (and I am a BIG baby !), don't let fear stand in the way if it can help you. Make sure you have a good surgeon if you/your doctor decide it is right for you.

If you have any questions - just ask.

[rdmc]

Hi stephc10,
I got the baclofen pump 6 weeks ago and it has completely relieved my severe spasticity and severe pain in my legs.

If your doctor thinks it can help you; the trial is the best way to see if you are a candidate.

I lost my mobility most likely from the spasticity and contractures and now wish I would have done it sooner (you never know though).

Both the trial and surgery went fine (and I am a BIG baby !), don't let fear stand in the way if it can help you. Make sure you have a good surgeon if you/your doctor decide it is right for you.

If you have any questions - just ask.

StephC...don't worry about the test, it's not so bad. Takes the whole day, that's a drag. I don't know about everyone's test, but there was a Medtronic rep that hung out with me most of the day to answer any questions (so I fired away about all the concerns I had.) They'll probably videotape your range of motion before and after. I took a pair of shorts to wear under my hospital gown because they're doing all these range of motion tests, and I'm not modest, but I didn't want to be videotaped in just a hospital gown and my undies. So I had on plaid shorts, a flowered hospital gown, and striped socks...quite the fashionista that day

Not trying to hijack the thread...but BG glad to hear that you're still doing well with the pump.

They haven't tweeked mine high enough to completely get rid of spasticity pain but it's so much better, I'm still on a pretty low dose...maybe they'll be able to get it high enough to completely rid me of the pain, maybe they won't.

We're going slow because I'm starting PT, and from what they tell me you do need a degree of spasticity to walk...and I'm having to learn how to walk right and not let my body slip into old habits, i.e. posture, torquing, etc...just because it's used to walking that way.)

I seem to react pretty dramatically to the med when administered this way...don't know why I didn't get the same results from oral meds. Weird thing is I even have one arm where I had a small degree of spasticity and it's loosened up. I asked the physiatrist how that could be since the catheter is inserted well below the level of my arms, and she said sometimes it looses up rib and back muscles (names of those muscles, LOL, I think she said trapezius and dorsi...I don't know my muscle names) allowing your shoulder to move more freely, and that helps your arm as well.

BG, are you still doing PT?

[bluegiraffe]

Hi rdmc,
Yes; doing PT from home (very limited) and next would be outpatient which will be a challenge to get to - we'll see.

Getting my first refill next week (have the pediatric size pump).

Raised up to 140 as of last week during my post-op (a little late) visit with my neurosurgeon who did the implant - and yes agree if you are walking you most likely need some spasticity to avoid the noodles

My understanding is the dose can affect other parts of your body (weakness) besides your legs - I experienced some weakness in my torso when the dose was raised and then we lowered while I was in rehab to limit this.

stephc10,
keep us posted ! As you can see it helps us all to share our experiences and learn from each other

[SpringOwl]

Rdmc and bluegiraffe,

Your stories are so encouraging. I suffer from so much leg pain due to spasticity I am going to talk to my neuro next week about this.

I read your positive experiences several times a day to give me encouragement.

Sooooo happy for you both.

Amy

[erica1000]

I got my pump in April of last year. It has really helped with decreasing spasticity and the spasms have completely gone away. I could not take enough oral baclofen to make a difference without it being too high of a dose for me.

Since getting the pump the quality of life improved. I got the tone back in my leg muscles and I am able to walk again.

I am at a very low dose but my doctor doesn't want to take it too high and cause it to have the opposite effect by taking away too much of the spasticity.

I had the pump refilled in early Jan (I have the larger size pump). My next refill is in early Sept. I was nervous about the refill process but found it to be very simple and pretty much painless. I am having no issues with the pump and wish I had done the trial run sooner.

So for me the pump was a good move.

[stephc10]

Thanks again for all the responses! I have an appointment set at the hospital in 2 weeks for the test dose. I didn't realize I would be kept overnight so now I'm kind of freaking out. Is the spinal tap and test that bad? Doesn't sound like it from what you all are describing! I have done nothing but get worse with the spasticity. It's so bad and I can't take enough of any drug to relieve it. I am sooo hopeful that this will work for me!

[nappy]

A good book

Stphc10

It will 2 years in July that I had the pump implanted. It has made a huge difference. I have been able to do so much more- more easily that I have had to have the dosage increased.

My spasticity increases the more active I am so it really has allowed me to do more.

I decided on the bigger pump size and last refill switched to the higher concentration of med. It would last for a year now, but they want the pump emptied and refilled every six months.

I had been taking over the limit Baclofen, Zanaflex, Keppra and tons of Neurontin- I also did botox injections for two years and bi-weekly deep tissue massage to work out the lactic acid build up.

I now am only on 2100 of neurontin daily.

I hope your trial goes well. Take a good book or your ipod so the "down time" goes quickly.

Good Luck

[hunterd]

LOVE my pump!!!!! i no longer have the pains i use to get in my leg muscles or the stiffness in my legs either!!!!! and one of the sides of oral baclofen is it causes tiredness (like i need help with that!!!!!!!!!!). good luck.

dave

[SpringOwl]

Pump Trial May 3rd

I have a pump trial on May 3rd. My hopes are so high that I am worried. You know how things sometimes go when you get your hopes up.

I met with an MS Dr. today and she made it seem that most people she has seen with a pump are in a wheelchair.

I am not in a wheelchair but feel I could be soon without the pump.

For those of you with pumps - Are you walking or in a w/c?

I walk like Frankenstein's Monster and cry in pain all the time and that is why I want it. I was surprised when she said this.

[SpringOwl]

Cost of pump trial?

As my previous post indicates, I have an appt. scheduled for a trial on May 3rd. How much does it cost for the trial? Does insurance cover the trial?