Baclofen pump

[jazzgirl]

Question for all you pros...does somebody have to be there to help you after your surgery? My husband works constantly, my parents are older and live in another state, and my daughter has 3 LITTLE kids!

What do you do if you don't really have anyone to help? I know I'm not just going to have the surgery, come home, and everything will be hunky-dorey.

[rdmc]

I'm no expert, as I've only had mine about 7 weeks, but I'll answer those last few questions as best I can.

I was still mobile when I got the pump. A lot of the literature even mentions that it may help MS patients retain their mobility. They say it's for severe spasticity, so I kept doubting whether mine was severe...and I asked that question. the doc said, "Does it interfere with your daily life?" and when I started listing all the things I couldn't do because of the spasticity, I understood it's impact.

I have no idea what the trial cost as my insurance paid for it. I don't think you can get the pump these days without a trial (if you're an MS patient.). My insurance also paid for the surgery. During the trial they make a point of documenting the before and after and I think that helps with the approval process.

Jazz...since you've been in a wheelchair they might send you straight to in-house rehab like they did for BG. I was sore but getting around with a walker...my husband stayed home a couple of days, but I think I could have managed. But with transferring into a wc...I don't know how that'd work. You do have to be careful of twisting and bending for awhile. Maybe BG can let you know how she did.

Hopefully Bob or someone else with longer experience than me will give you more info.

[bluegiraffe]

Springowl
I work full time from home and my insurance covered the trial and surgery.
I have not been able to stand or walk for the past year and a half; mostly due to the spasticity, spasms and contractures that went from bad to severe. In hindsight; I should have gotten the pump sooner (maybe it could kept me mobile).
My understanding is that there are people that are ambulatory before the pump and remain so after (I'm sure others will pipe in with their experiences). Good luck & keep us posted.

Jazzgirl,
My experience was a little different. I was at the hospital (1st time since a little kid) as I went to emergency over the weekend to get steriods for what seemed to be attack. While I was there for a 5 day treatment; I asked about the pump and the neurosurgeon came one night to talk to me about it and was kind enough to schedule the trial on the day I was going home. So I was already there. Sense is you would be ok with being dropped off and picked up if the setup is similar to what I went through; as someone was watching over me during and after - in fact my husband stayed to see the results and then went back to work for a few hours before coming back to pick me up.

For the surgery; it was planned that I would stay in the hospital for a night in order to go to acute rehab. To go to acute rehab you have to go directly from the hospital. The rehab was not directly related to not being ambulatory as much as getting the intense PT and OT to gain some strength & independence. Depending on you; you might be ok going to/from surgery, your doctor would know best of course. I unfortunately got the spinal headaches that lasted a few days, other than that the surgery/incisions did not bother me.

My neurosurgeon specifically said there is nothing you can't do after the surgery (i.e. bending, twisting, laying on your stomach). And the way I try to move around have definitely put strain in those areas with no problem
I think a big key is to have a good neurosurgeon - I like mine alot !

Have had the pump for almost 3 months and one refill a couple of weeks ago (I have the pediatric size).

Hope this helps some.

[2Live]

Thanks for this thread. I go in for my pump trial in a little more than two weeks. Kaiser is my HMO and here in Northern California the trial is 7-10 days in the hospital. Looking forward to it and hoping that it can provide me some relief from my spasticity. I currently use a walker around the house and a w/c when I am out. Good luck to all.

[rdmc]

Springowl
I work full time from home and my insurance covered the trial and surgery.
I have not been able to stand or walk for the past year and a half; mostly due to the spasticity, spasms and contractures that went from bad to severe. In hindsight; I should have gotten the pump sooner (maybe it could kept me mobile).
My understanding is that there are people that are ambulatory before the pump and remain so after (I'm sure others will pipe in with their experiences). Good luck & keep us posted.

Jazzgirl,
My experience was a little different. I was at the hospital (1st time since a little kid) as I went to emergency over the weekend to get steriods for what seemed to be attack. While I was there for a 5 day treatment; I asked about the pump and the neurosurgeon came one night to talk to me about it and was kind enough to schedule the trial on the day I was going home. So I was already there. Sense is you would be ok with being dropped off and picked up if the setup is similar to what I went through; as someone was watching over me during and after - in fact my husband stayed to see the results and then went back to work for a few hours before coming back to pick me up.

For the surgery; it was planned that I would stay in the hospital for a night in order to go to acute rehab. To go to acute rehab you have to go directly from the hospital. The rehab was not directly related to not being ambulatory as much as getting the intense PT and OT to gain some strength & independence. Depending on you; you might be ok going to/from surgery, your doctor would know best of course. I unfortunately got the spinal headaches that lasted a few days, other than that the surgery/incisions did not bother me.

My neurosurgeon specifically said there is nothing you can't do after the surgery (i.e. bending, twisting, laying on your stomach). And the way I try to move around have definitely put strain in those areas with no problem
I think a big key is to have a good neurosurgeon - I like mine alot !

Have had the pump for almost 3 months and one refill a couple of weeks ago (I have the pediatric size).

Hope this helps some.

Hey bluegiraffe,

I didn't know you work from home...same with me, full time from home (thank goodness, couldn't do it if I had to go to the workplace everyday.

Wow, no restrictions. I think it was my physiatrist that put the restrictions on me, although I do think I read it in some literature they sent home with me. The key word I found out was "excessive." They said no "excessive" bending or twisting, and my PT made me go back to the physiatrist to have her define "excessive." She said I could bend 90 degrees, but only when seated, otherwise, use a squat position to pick something up off the floor. And the twisting was more restrictive, only 30 percent. But I don't know how long those restrictions stay in place. I never sleep on my stomach so that wasn't an issue. They did ask me before implanting the pump which side I slept on, and they put the pump on the opposite side.

Glad to hear you're getting along well with it. Three months....times flies, LOL.

My PT is killing me, even though the exercises are quite mild, I guess I'm stretching out muscles that have been inactive for a long time...so the aches are muscle aches, not the spasticity type pain. My spasticity is under control and range of motion are good.

[rdmc]

Thanks for this thread. I go in for my pump trial in a little more than two weeks. Kaiser is my HMO and here in Northern California the trial is 7-10 days in the hospital. Looking forward to it and hoping that it can provide me some relief from my spasticity. I currently use a walker around the house and a w/c when I am out. Good luck to all.

What kind of trial is it...I'm not familiar with a long trial like that? How does it work? Mine was check in in the AM, check out in the PM.

[jazzgirl]

Thanks for your answers, rd and bluegiraffe! I see my neuro in late May, but I may just call him to talk about a neurosurgeon and the surgery sooner rather then later. It's gotten so much worse within the last year!! Honestly, I never thought I'd be in this position. The disease was nice to me for such a long time.....

I still walk (with a walker), but it's easier, QUICKER and safer to wheel my sorry behind from point A to point B. .

[2Live]

In the trial I am doing the are going to put a catheter in my back and have the pump outside my body. That way they can test the different dosages and I will know for sure if the pump is going to work for me. I am not sure why they do it that way, but I guess I will have a week in the hospital to relax a little. I won't like being away from my wife and boys (ages 10 and 4) for a week, but hopefully they will get a dad that is a little more functional.

[bluegiraffe]

Hi rdmc,
Good to hear you are doing well too !
I too read restrictions; but my neurosurgeon said none when I asked multiple times. And he has been right for me

Still doing PT from home and no success so far with getting any use from my legs; which was expected, although I had hopes. Not having pain was my number one priority and I am thankful for that - what a difference !

I also have leg splints called 'dynasplints' that the rehab center ordered from the vendor who came and fitted me. The idea is to get a continuous stretch by wearing them at bedtime for 5-7 hours. They velcro on and are supposed to be more beneficial then a PT stretching you.

Jazzgirl,
Same for me, I did well for the first 10 years and progressed over the past 2, never thought I'd be where I am now either
Good luck if you go forward with the pump, keep us posted.

[rdmc]

In the trial I am doing the are going to put a catheter in my back and have the pump outside my body. That way they can test the different dosages and I will know for sure if the pump is going to work for me. I am not sure why they do it that way, but I guess I will have a week in the hospital to relax a little. I won't like being away from my wife and boys (ages 10 and 4) for a week, but hopefully they will get a dad that is a little more functional.

That's really interesting! So if it's a successful trial will the catheter part of the surgery already be done, and then they'll implant the pump and hook it up to the catheter. Or will they remove the catheter and reinsert it at another time when you have the surgery?

[BobOP]

Hi Jazz

I can say I have been pretty much on my own after my pump surgeries. I did have a friend take me & bring me home...If I could have driven myself, I would have...LOL

My first one was in 1999. Back then, we did the surgery out patient...My pain management dr gave me no instructions to go home with...I was actually feeling great because the spasms were gone...No Mention of laying flat for awhile after having the catheter put in.

I had migraines for 2 weeks & then realized my legs were very weak. I called my dr on sunday afternoon & on monday, we lowered my dose...I was good to go.

I can say getting my replacement pumps was a piece of cake. As long as they aren't dealing with the catheter it is like getting an "oil change". They take the old pump out & put in the new one. After my first replacement pump, I was horseback riding the next morning.

Wishing you the best Jazz

Take Care, Bob

[2Live]

That's really interesting! So if it's a successful trial will the catheter part of the surgery already be done, and then they'll implant the pump and hook it up to the catheter. Or will they remove the catheter and reinsert it at another time when you have the surgery?

RMDC,
The catheter part won't be done as it going to be outside my body. If the trial is successful we will plan the implant surgery a few weeks after. It will probably be in mid to late May as I have my next Novantrone infusion in early May.

[stephc10]

I am excited! Test dose went well and could actually lift my right leg all the way up which hasn't happened in a long time. Now just waiting to get surgery scheduled. I am VERY nervous about surgery but am willing to do anything at this point!

[rdmc]

I am excited! Test dose went well and could actually lift my right leg all the way up which hasn't happened in a long time. Now just waiting to get surgery scheduled. I am VERY nervous about surgery but am willing to do anything at this point!

Great news, it truly is amazing. I was like you, the oral baclofen wasn't doing squat, and just a small dose of the ITB and voila, things worked.

Surgery wasn't bad, but for me the hardest part was using muscles I hadn't in a long time. For instance my hips were screaming because they'd been so spastic for quite awhile and then were getting stretched as I walked normally.

Make sure you ask for a binder afterwards (they'll probably give you one.) I found it really helped in the recovery and my pain level at the incisions. Let us know when the surgery is scheduled for.

[erica1000]

For me getting the pump was the best thing that happened to me in a while. I got my pump about a year ago while I was an in-patient for acute PT after a horrible relapse. I was experiencing severe leg pain and had lost the ability to walk.

I did the 1 day trial and had great results. I was required to stay flat on my back for the day. They may have been a bit more cautious because it was a rehab center. The doctor and PT checked the tone in my legs before and every couple hours after the trial.

The pump was implanted the following week while I was still in rehab. Recovery was typical for any surgery. Had to stay in bed with no more than a 30 degree incline for 24 hours. On the second I was able to get up into my WC. By the 3rd day I was back into PT. On day 6 I was walking with a walker and by the 10th day I was able to walk independently.

The pain was not removed completely but has been greatly reduced. I have had it adjusted slightly a couple of times to help with spasticity. I hesitate to make a huge jump in the amount as if it is too high the results could be the opposite and cause me to not be able to walk. I can handle some pain if I can continue to walk.

My insurance covered the cost of both the trial and the implant.