Baclofen pump FAQ

[da lurker]

I got a pump a year and a half ago because i couldn't take baclofen orally. 10 mg would wig me out for a day or two. Moronton, lyrica, zanaflex and all the T epileptic meds turned me into a turnip that looked like Mr. Hyde.
My pump is at 200 mcg and is working very well with the spasms and fair with the spasticity but almost not at all with the pain in my legs. The pain becomes horendous when I move around and beings I'm a doped up walker I move around. The dope (hydrocodone) only helps the pain a little and for a short time. I have been leaning quite strongly towards trying ketamine in my pump. I see in this quote where morphine needs to be changed out frequently. I was wondering if anyone knows how long ketamine's "pump life" is. I see where numb1 and someone else in this thread are using it.

Sorry to the people who have been having proplems with their pumps. Everything seems to have went ok with the installation of my pump. It took what seems like a year to get it adjusted mostly because the efing pain wouldn't go away and i keep getting real depressed about it. Adjusted it up than down. Man i hate medical crap. Its getting to where I need anti-anxiety meds for shots. Anyway, thanks.

They can only change the concentration by refilling the pump. The amount pushed through the catheter can be increased by computer at any time.

Be aware that having morphine along with baclofen means you'll have to get refills every month or so, or even every two weeks. With baclofen alone, you can probably go 6 months between refills. Going every few weeks or every month can become quite costly, depending on your insurance and/or your copays.

[Zoso]

24 hour wait?

I finally had my pump put in and everything went well. I ate at Sonic as soon as I left the hospital They said the pump would start in about 24 hours and I thought that was odd.

So I'm in bed waiting for it to kick in not knowing what to expect. The incision is quite a bit higher than I expected and on my right side about even with my belly button. That's about my level so I'm pretty sore.

Hopefully everything will be fine and I'll let you know when I know.

[McDuff]

Maybe they meant you would start feeling the effects in 24hrs? I think they start the pump right away.

I get my new one on Wed so I'll se what they say soon.

Good luck on results of having your pump.

[SCI-Nurse]

The pump is turned on in surgery, but the catheter is usually filled with normal saline when it is inserted, so it may take up to 24 hours for the pump to push that through into your CSF and then for the baclofen (and any other drugs) to start reaching the intrathecal space. It would be very rare for you to feel the pump working or pumping. If you hear tones, those can indicate that the battery is low or the pump needs to be refilled.

Have you already stopped your oral baclofen? What did they instruct you about this?

Did they give you any pain medication for your incisional pain?

Just remember that it is very common to need fairly frequent pump adjustments over your first few months to find the right settings/timings for you. Work closely with your physician on this.

(KLD)

[rdf]

Maybe they meant you would start feeling the effects in 24hrs? I think they start the pump right away.

I get my new one on Wed so I'll se what they say soon.

Good luck on results of having your pump.

Good to hear McD. I know it's been a long time coming. Good luck buddy.

I've always come out of surgery with the pump working, as they bolus the pump to fill the catheter during the surgery, or shortly thereafter. But those have been pump or catheter replacements, I can't remember how it was the time I got the pump and the catheter both. It might be different for the first surgery to implant the pump and hook up the catheter. But looking back, I do believe it was working when I woke up from surgery even then.

[Zoso]

The pump is turned on in surgery, but the catheter is usually filled with normal saline when it is inserted, so it may take up to 24 hours for the pump to push that through into your CSF and then for the baclofen (and any other drugs) to start reaching the intrathecal space. It would be very rare for you to feel the pump working or pumping. If you hear tones, those can indicate that the battery is low or the pump needs to be refilled.

Have you already stopped your oral baclofen? What did they instruct you about this?

Did they give you any pain medication for your incisional pain?

Just remember that it is very common to need fairly frequent pump adjustments over your first few months to find the right settings/timings for you. Work closely with your physician on this.

(KLD)

My neurologist dropped my oral baclofen to 5mg-5mg-10mg. I'm still in pain and have a good bit of spasticity and spasms. They prescribed the same pain meds I already take.

At least I have the pump in now so we can tweak the dosage.

[thehipcrip]

Glad to hear you're now pumped, Zoso. By now, the IT baclofen should be hitting your CSF -- I had my first pump placed in the early evening, and by the next morning I was feeling the full effect. (Namely, my initial dose was so high that it made my right leg totally limp, leaving my with such bad noodle leg that I was more paralyzed after surgery than I was before. Everything came back after turning the pump off for 12 hours and lowering the dose.)

If you're not feeling any positive effects, Zoso, it probably means you already need your first dosage tweak. I'd call your doc first thing Monday morning and let him/her know that you've noticed no improvement.

If your incisions are hurting, I'd also demand some better pain management, getting the hospital's patient advocate involved if necessary to get it. Expecting your baseline, daily meds to manage the added pain from this surgery is unrealistic.

McDuff, HOORAY that your surgery day is finally here. Got my fingers crossed that you'll be feeling spasm relief by Thursday morning!

[McDuff]

Rdf & Hipcrip,

Thanks for the good words. Yeah, I am soooo ready...

Got into my s-i-l's car today, an unusual xfer, man my spaz was nutso. I want to be able to move my legs myself again instead of having someone else "break" the tension in them.

tick,tick,tick, Are we there yet dad?

[rybread]

It took a few weeks of increasing dosage for me on my first pump. The initial baclofen in it was much less concentrated than the stuff I use now. They'll probably change that also once they get the dosage somewhat right.

[LisaBirson]

I was tested at a 100 mcg/day and had 2 increases the first month then I started having a home nurse come and increase each month. It took a year to get my dosage leveled out I am now at 554mcg during the day and 600mcg at night. I was put back on Zanaflex 150mg 4 times a day for my arms about 2 months ago. Just remember the Baclofen only helps from the point of your catheter and below. I feel that I am at my level of dosage of Baclofen, and it feels good to be spasm free.

[thehipcrip]

Prayers and good wishes go out to you, this morning, McDuff -- pump surgery day is FINALLY HERE! I'll be watching and hoping for an update filled with news that you're feeling great and your legs are finally staying where *you* put them!

Love ya, McD!

[McDuff]

Just got home. Surgery went well, no complications, so that's a good surgery.

Bad news, doesn't seem to make a difference. In case there was going to be a difference, they dropped my dosage in half, from 900 to 450. They were going to take it to baseline of 100, but when they took the cath out, they could not see any problems with it. So they were worried I would hit withdrawals bad if they took me to 100.

I think I had some withdrawals last night, did not sleep for shit, kinda felt like crap, and I was running a mild fever until this morning. But it all subsided by this a.m. luckily.

I already had my pump nurse in today to up my 1/2 dose by 20%, at 540 now. My legs fought her bad when she pumped them. And my gut muscles were spasming too. I at least now know, that the pump is doing something, because I am way worse at 1/2 dose.

But we shall see, maybe having the cath in a slightly different spot will help some. And I was gonna have to have the pump replaced in a year or so anyway, now it is overwith. I am pretty sore, and they have me wearing a binder for weeks, arrggghh.

Bummer, but oh well. Thanks for all the well wishes, love you too Hipcrip.

[sjean423]

Sorry that didn;t do the trick McD. Glad the didn;t drop it all the way to 100. Just keep bumping it back up I guess.

[thehipcrip]

Aw, McD, while I'm very relieved to hear that the surgery iotself went so well, it just bums me out that you're still suffering from the severe spasms. Like sjean, I'm so glad they didn't drop it down to 100!

While it sucks that you're going through this period of way worse, there's a big part of me that's relieved that they were cautious and dropped your dose by half after putting in the new parts. Turned out that my last pump replacement also fixed a small leak in the tubing, which had been preventing the full 960 ugs the pump said I was getting from reaching the cord. When that leak was fixed and that whole 960 dose did hit me full on, I lapsed into a coma, went into respiratory arrest, and almost died. These more severe spasms mioght be awful, but are highly preferable to the overdose alternative.

So how soon can you get your next bump up?

And sorry to hear that you've been condemned to the binder. That's was a real PITA.

Rest up well, dear friend. I'm still hopeful that your spasms will fade away, right along with your soreness.

[McDuff]

Thanks Ladies.

Yeah Sjean, now I know to just keep taking it up...

Damn Hipcrip, that is the exact scenario they wanted to make sure and avoid. Glad you came out of it ok, that was nasty OD.

I am going to see her on tuesday to get another bump. She wanted me to rest and heal a little before doing it again, so I'll give it a few days.

This binder blows. First off it is way too wide. Hell, it goes from almost to my nipples to my crotch when sitting, my incision is horizontal and the pump is only a few inches wide. I asked the neuro nurse why I needed a binder, she said that they have seen cases where spinal fluid leaks around the cath tip(til it seals well) and runs down the cath and pools in the pump pocket, the binder stops that somehow.