Baclofen pump FAQ

[darrel]

how much return did you get back? I only got 30% on the side that has the drop foot.
I have to see the physiatrist on the 21st of this month I'll ask her about it.

[Lazlo]

My insurance company has denied my doctor's request for an overnight stay after my implant surgery. Should I be concerned about coming home immediately after the surgery?

[sjean423]

I don;t think it is that big a deal, the hospital that did mine treated it as out patient, but my physiatrist wanted me in rehab for 2 days. A lot of people went right home. I am a bit of a wuss, so it was nice to have nurses the first night.

1. Will someone be there? .... typical post o/p surgery stuff. It would be nice to have someone to fetch and carry for you, so you don;t have to get up to get a drink of water and such. Also do you have an electric bed at home? I don;t, and really appreciated the electric sitter upper the hospital bed had the next day! Be aware the surgery made it a little harder for me to sit up for a day or so. (The incision, not the pump effects, I think at least).

2. BE CAREFUL about how they are weaning you off the oral baclofen. You can;t go cold turkey! The pump doesn;t immediately replace it as far as your body is concerned. My doc decreased it a little too fast I think, and I had some nightmares, but nothing more serious. Discuss this.

3. This will make a big difference in your adls, especially transfers and showers. Any plans for some PT? And I would recommend you have someone with you, or at least w/in yelling difference the 1st couple times you transfer.

4. What are the plans for tweaking the pump? They increased mine about 3X before I went home.

5. Nothing to do w/ going home right away, but from my experience, the dose will seem just right for a bit, then slowly things will creep up. Dose gets increased, and it repeats. This is typical, it can take up to a year to get the right dose. I didn;t realize this at first and was concerned. (It took me about 6 months).

Good luck, feel free to pm me.

[darrel]

I had to travel 90 miles to get home after my pump was put in and I had no problem.

[bailey5774]

hi i've had my pump in for about a month now. I'm 8 months post op from injury and it has helped with the spasms for the most part ( i get here and there) but my tone is awful!! how long does it take to get the right dosage? i think i'm at 190 mcg a day. one day when i was on 100mcg they had me go into the hospital and gave me a bolus of an extra 50mcg over 15 min. that worked GREAT!!! it started working within the hour and lasted till 6pm i went in at 9:30am. but ever since then we keep increasing and i am still stiff and have some jumpyness. any suggestions? i see my surgeon tomorrow so i will also ask him. thanks

[sjean423]

They typically will increase it 10% at a time. It can take up to a year to get it tweaked just right. I found they would adjust it, and it would be fine, then the tone would creep up. Readjust, repeat. It took several months to get it where it is now.

Keep in mind when increasing it, you don;t want NO tone, you just want the tone decreased to the point that you can work with it.

I think 190 is still pretty low, so you have a big window to work with.

Good luck.

[thehipcrip]

I agree completely with everything sjean said. It took me about 16 months to get at a good maintenance dose, but I still had to get regular bumps after that -- it turns out there was a small hole in the tubing and I wasn't getting everything the pump was delivering. If you keep needing 10 percent bumps every visit or every other visit after a year or so of dosage adjustment, it probably wouldn't hurt to get a flouroscopy done to make sure there isn't a physical problem interfering with the delivery of the baclofen.

Be sure to tell your doc how much that bolus helped you. It should be able to help him/her get a better idea of what your ideal target dosage is.

190 is a relatively low dose, so don't fear too much -- you've got a lot of room to increase until you're at a level where both tone and spasticity are comfortable enough to live with but you're not so loose that you lose functionality.

And you will get there! For me, even my worst day with the pump has been a thousand times better than my best days without it.

Let us know how your appointment goes tomorrow.

--THC

[bailey5774]

thanks for the help! i did let them know how much the bolus helped and they increased my pump up 50. they did it over a 2 day period since it was a friday and they didn't want to send me home with such a big in crease for the weekend when my doctor wasn't going to be on call. but after increasing the 50 it hasn't helped and i've had several increases since then. I will let you know what happens tomorrow. thanks again!!

[thehipcrip]

I'm not really surprised that the overall increase of 50 didn't help as much as the bolus dose did. Increasing your dose of 50 ucgs per 24 hour days ends up- with significantly less concentration of the baclofen in your CSF than having a boost of 50 ucgs delivered in a period of a few hours.

While I'm no expert, I would calculate that to get the same effectiveness you had from the bolus, you would need to increase your daily dose by another 190 or so ucgs from where you were when you got that bolus.

I arrived at that number by guesstimating that the bolus delivered about 10 extra units of baclofen every hour for five hours, for a total of 50 units. To get that same level of saturation all the time, you'd need to up the total dose of baclofen by 10 units every hour -- 10 ucgs X 24 hours, less the 50 unit increase you've already had = 190 to go. :-) Bear in mind that all this is PFA squared math (the numbers were Pulled From Air and if they work out, it will be Pretty F**king Amazing). Of course now that I've made this prediction, I would be ever so grateful if you'd let me know what dose you finally land at!

Since you can't really go up that amount in one shot safely, it's going to take several more tweaks for you to get to the level my PFA2 math predicts you need to be. Do you ever go for dose adjustments in between refills, assuming that you're not in need of refills every month?

[Lazlo]

I just got back from a pump dose increase appointment. I've had mine for just two weeks and I'm already at 250µg/day. I still haven't seen any improvement since before the implant but I'm being patient. My test dose of 75µg was very effective.

[sjean423]

Hey, I was just wondering about you. Just for comparison, my test dose was 50, and I am running around 180, so I am not surprised you are up there. The nice part of the fact that they kept me inpatient, is that they increased my dose 4-5 times in the 2 days post op. So it will get there. How often ar you going in for an increase?

[rdf]

I'm not really surprised that the overall increase of 50 didn't help as much as the bolus dose did. Increasing your dose of 50 ucgs per 24 hour days ends up- with significantly less concentration of the baclofen in your CSF than having a boost of 50 ucgs delivered in a period of a few hours.

While I'm no expert, I would calculate that to get the same effectiveness you had from the bolus, you would need to increase your daily dose by another 190 or so ucgs from where you were when you got that bolus.

I arrived at that number by guesstimating that the bolus delivered about 10 extra units of baclofen every hour for five hours, for a total of 50 units. To get that same level of saturation all the time, you'd need to up the total dose of baclofen by 10 units every hour -- 10 ucgs X 24 hours, less the 50 unit increase you've already had = 190 to go. :-) Bear in mind that all this is PFA squared math (the numbers were Pulled From Air and if they work out, it will be Pretty F**king Amazing). Of course now that I've made this prediction, I would be ever so grateful if you'd let me know what dose you finally land at!

Since you can't really go up that amount in one shot safely, it's going to take several more tweaks for you to get to the level my PFA2 math predicts you need to be. Do you ever go for dose adjustments in between refills, assuming that you're not in need of refills every month?

That's some pretty cool PFA math hipcripGirl . Do you think the bolus delivered over 5 hours is correct? I'm curious if that's how a bolus works - so many mcg's delivered over a certain number of hours.

I recently had a refill, and things went to hell. I went into withdrawals. They increased my pump in the ER by 15% at 10pm. At 10am, I was still going through withdrawals. The doc then increased my dosage by 50 units, which worked out to about 20%, at the same time he gave me a bolus of 75 mcgs. The bolus didn't hit me until 7 hours later, and it was heaven. I figure the 20% increase takes about 7 hours, and coupled with the bolus, that's what calmed my spasticity down. But that might mean the bolus is spread out longer than 5 hours, not sure. Could be 5 hours, and it stayed in my system long enough for the 20% increase to meet it in my spinal cord. I was spasm free for about 10 hours afterwards.

But now I'm back on the 10% increase every two weeks. I'll be at 500mcg this a week from today, prepogrammed (I'm at 450 now). Then a week later, I go back to the doc. According to your PFA math hipcripGirl, I reckon I'll have to get to about 600mcg to reach the relief I got from the bolus. I hope you're right, because I think I can talk the doctor to increase me by 20% when I go in. 20% of 500 is 100, which would put me where I want to be.

Funny thing is, I was on 360mcg for 13 years. My catheter came dislodged, and last December they patched me up with a new one. The doc lowered my dose to 214mcg, and that worked just fine for me even after being on 360 all those years. Then two months later, I went in for my 6 month refill, and 2 days later I was in the ER with the above stated problems.

I called Univ of Iowa where they have much experience, and they told me that two of their patients have had to increase their dosage by 3 to 400mcgs per day recently. They don't know what's going on, what's causing it. I hope somebody figures it out soon.

I may have broken my tibia or fibula, which I didn't even notice until after all this had happened. There's a big bruise and it's a little hard to the touch on my lower leg. I'm going in for an x-ray this week. This may be my problem, least I hope it is. I hope to get back to at least 360mcg per day. In the ER, my wbc count was really elevated. They said it was because my whole body was constantly flexing and extending every half second. They were worried my muscle tissue was being damaged.

Anyone know if a fractured lower leg would elevate the wbc count? Anyway, I hope your bolus guesses are close, or at least in the ballpark. Thanks hipCripgirl.

[rdf]

I just got back from a pump dose increase appointment. I've had mine for just two weeks and I'm already at 250µg/day. I still haven't seen any improvement since before the implant but I'm being patient. My test dose of 75µg was very effective.

Mine was also 75ug. It lasted 24 hours or more. Then as they adjusted the pump, the magic number ended up being 360. You'll get there. My doc has patients who are on 800 mcg/day, a few even on 1300 mcg/day.

[darrel]

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]

Zero -- hang in there. My test dose was a one shot injection at 50 ugs and it worked great. But when I had the pump placed, that same rate was so high that it literally paralyzed my right leg -- I had to have the pump turned off for 24 for hours to get the little control I have of that leg back. After that, my dose was reduced to 25 ugs/day, which stopped being effective after a week or so and I started a series of monthly increases that lasted for well over a year. Right now (eight years and one pump later), I'm at a rate of 690 units per day and have been for the last year, but will probably need a 10 percent bump up when I go in April for a refill. You will get there!

rdf -- a bolus is exactly what you described: a certain number of units delivered over a certain period of time. I'm not surprised that your bolus took seven hours to hit you -- remember that even after the pump releases the higher amount, there's still going to be a time lag before the meds hit your CSF because there's already a certain amount of lower level dosage left in the tubing between pump and CSF that has to be delivered first. Now you see why I call it PFA2 math -- there are so many variables to take into account. I sure hope that the 600 estimate is right on and that you can get there in one increase.

Your withdrawals sound like hell. I ended up with the opposite problem when I had my pump replaced three years ago. At the time of surgery, I was at a dose of 980 ugs/day. During the surgery, they discovered either a kink or a small hole in the tubing near the pump (different docs and records contradict each other), which apparantly kept the full dose from reaching my spinal cord. When this kink/hole was repaired and I started getting that whole 980 units/day (about 24 hours post op), I went into a coma. I was blessed that one of the true pump experts was part of the medical center I was at, and that they called him in as soon as the OD was discovered. Several doses of Narcan and turning the pump off for a time thankfully brought me back. After that, this doc started me out at 250 units/day, and over the next five days he gradually upped my dose to 450 units, which worked pretty well. As I mentioned above, my dose is now up to 690/day and on its way higher, but that's to be expected given the degenerative nature of my SC damage.

One thing is for certain based on both of our experiences, suddenly getting too much or too little baclofen is NOT.a.good.thing.

I've got my fingers crossed that you, and all ther others wh haven't reached it yet, find your sweet spot quickly.