Baclofen Pump question - BobOP ?

[snowy]

Hi,
Yesterday I went to the Doctor who manages my pump. He felt my legs were too loose. He turned the pump down once again. Does your pump get adjusted this much I forgot to ask him if adjusting the pump this much is normal.
Thanks

[rdmc]

Well as far as adjustments, I've not had to do that many, maybe one a month (and mine have been all up dosage because I'm only 6 months in.)

Not to discourage anyone, but I was thinking of getting an "uptick"this week because my spasticity had been pretty bad over the weekend. I figured it was the heat. But Sunday night I noticed a little swelling around my pump, so I called the physiatrist...he told me to come in on Monday afternoon. but by 10 yesterday morning half my abdomen was very swollen, so the physiatrist had me go straight to the ER. After some imaging studies it appears I've had a catheter failure and there's a lot of fluid (presumed med) under the pump causing the swelling. I'm very surprised at the amount of swelling, but the ER docs didn't seem to be. Maybe it's just a body's reaction...I have had no alarms go off, so I guess there's still some med still in the pump.

In retrospect I was having withdrawal symptoms for a few days. the increased spasticity and I was itching like crazy from my waist down.

So tomorrow I see the surgeon to figure out what to do. In the meantime I'm back on oral baclofen to keep from having a withdrawal crisis.

That being said, I told my husband I have received so much relief from the pump that even though I'm having to have surgery again, I'd gladly go for the pump if I was faced with the decision again whether to get it or not. From what I understand so far, this surgery will be easier than the first.

[bluegiraffe]

rdmc,
sorry to hear your experience, glad you got feedback quickly.
i am also surprised you didn't get the 2 tone alarm that the documentation relays you will hear if a catheter issue.
sounds like your symptoms were just as we've read spasticity and itching.

did you ensure you had the oral baclofen in case of an emergency ?

please continue to post and let us know how you are doing. will be thinking of you and wishing you the best and speedy surgery/recovery to get past it quickly.

take good care.

[rdmc]

Hey BG,

Well at this point, I don't really know if the catheter came off, or if there's a hole in it or if the pump leaked (highly unlikely.) The thing that has me puzzled is it went from slight puffiness to big time swelling in the course of 12 hours. I'll have to wait for
answers, I guess.

I didn't get an alarm of any kind, and really didn't clue in that there was a problem until my abdomen developed one sided swelling.

And, no, I didn't have baclofen on hand, but there again, I wouldn't have thought to take it because I've been taking Zanaflex for breakthrough spasticity, and thought that's what I was having. They gave me a Rx for the oral baclofen at the ER and have me taking about 60 mg a day, which is a little less than I took before I had the pump. It's handling the spasticity, but not as good as the pump.

Lots of questions, yet to be answered, hopefully the surgeon can figure out what went wrong. I'm still puzzled by the swelling. I actually thought perhaps I developed some late onset seroma from the surgery. I specifically asked the ER doc about that and he said no that wasn't it. Guess I'll know more tomorrow after I talk to the surgeon, or may not really know until they do the surgery....I'll update you on what I find out.

As to the alarm, funny thing is, last night (in the middle of the night) after it had finally dawned on me that there had been no alarm, I heard a noise and woke up from a sound sleep thinking that was the "late great" alarm. Instead it was my cell phone letting me know the battery needed to be recharged...I'm still smiling about that one.

I will say everyone, from the physiatrist's office whose service took my initial call at 10 PM on Sunday, the physiatrist who called me right back and then sent me to the ER the next day when they realized there was a problem, the ER personnel, the surgeon's PA who showed up at the ER, and the surgeon's scheduling nurse that's getting me in to see him, has been very accommodating, so I have nothing to complain about.

Today I've got a killer headache, but not sure whether that's a side effect from going on the oral baclofen, or sitting around on a gurney in the ER for 7 hours yesterday

On a lighter note, I went back and watched my favorite youtube videos last night (comic Brian Regan) about his ER experience, it always makes me laugh.

ER part 1 http://www.youtube.com/watch?v=k9m2FLHlEwA

ER part 2 http://www.youtube.com/watch?v=UM-HW...eature=related

[snowy]

RDMC,
Sorry to hear about the complications with the pump. Hope you get things resolved soon. I take oral baclofen with me whenever I am going to be away from home for any length of time, like going on vacation, etc. And I always have my card with me if any complications arise from the pump.

[rdmc]

RDMC,
Sorry to hear about the complications with the pump. Hope you get things resolved soon. I take oral baclofen with me whenever I am going to be away from home for any length of time, like going on vacation, etc. And I always have my card with me if any complications arise from the pump.

Snowy,

I think that's a great idea to carry oral baclofen. My neuro weaned me off the baclofen, then just gave me a Rx for Zanaflex.

I have the card and that wallet sized packet of instructions for the ER in case of an overdose or withdrawal.

The Er docs seemed pretty informed, but the ultrasound tech had never imaged a pump before, so I had to bring her up to speed on what she was looking at. Also when the surgeon asked the ER for a specific x-Ray view, I had to educate the x-Ray tech on where the pump was and why the doctor wanted the view he had asked for. But I think they just don't see that many pumps in the ER.

[bluegiraffe]

Hi rdmc,

It will be good and interesting to get all the answers on what actually occurred. And glad to hear all your docs and the ER handled it all well for you. Must have been alarming re: the swelling. And I can imagine you would have a headache from the past 24 hours.

I had been thinking about proactive measures in case of an emergency to be semi prepared and raised some questions with my physiatrist just last week during my refill visit. With the xrays nothing had to be handled differently correct ? I have the medtronic id card, what is the wallet size ER packet you referenced ?

It will interesting to hear what your surgeon says tomorrow.

Look forward to hearing your update.

PS - love your youtube videos

[snowy]

RDMC,
It's my understanding that if there is a problem with the pump when you are out of town and can't get to your own Dr. who is managing your pump you call the # on the card and they will locate a facility close to you that is familiar with the pump.

[rdmc]

BG and Snowy,

Medtronics sent me this nice packet to carry with Emergency Instructions...I'm sure if you ask your rep you can get one. It's not the card with your serial number and info.

It's specifically designed for if you go to an ER with a withdrawal or overdose problem. It comes in a clear plastic sleeve (the right size to fit in your wallet) and says Emergency Medical Instructions on the plasticized card (there's also a place to put your
"pump" doctor's name and phone.)

Anyhoo, also included is the sleeve are folded up info pages ...and instructions for dealing with a Baclofen pump emergency. I think it's a really good idea to carry one, for exactly the same reason that Snowy mentioned, if you were out of town, or in an ER not familiar with pumps.

My physiatrist had already told me it's a good idea to always give them a call before going to the ER with a pump problem. They have a service that answers 24/7 and are really quick to get back to you.

And while we're on the subject of emergency measures, I already had a Medic Alert bracelet I wear because of medication allergies, but when I updated with Medic Alert, and told them I now have a pump, they insisted on changing the inscription on my bracelet. They said I needed to list the ITB pump first, so they sent me a new bracelet inscribed that way.

I'll update on what info I get from the surgeon tomorrow.

P.S. This whole episode has convinced me the effect of the pump is really miraculous. I'm popping lots of oral baclofen (and because of that feeling like I have a hangover, LOL), but am back to walking with a limp, no dorsi-flexion in my foot, and I can't lift my bad leg more than a couple inches...all after just being w/out the pump for a few days. While using the pump, all those things had resolved for the past 6 months. If I want to "look on the bright side" this has helped me remember how much relief the pump gives me (something I think I was beginning to take for granted because I hadn't experienced the bad spasticity since the pump was implanted.)

[BobOP]

Hi RDMC

I am sorry to hear of your issues with the pump. I hope they get things taken care of soon.

Take Care, Bob

[snowy]

rdmc,
It's wonderful that the pump is doing wonders for you. I too sometimes try to remember how I walked before the pump. The Dr. did take a video of my walking before the pump. I should ask to see that during one of my visits.
I will look into that packet you mentioined. Thanks for that info.

[rdmc]

So as they say over at the hyster sister's site: The princess has checked into the case. Actually been here since yesterday because I was having arch rebound spasticity and feeling "weird."

surgery is tomorrow...they can't read the pump...too much swelling, but they believe the culprit is fluid med leaking out of the catheter and pooling under the pump, swelling around and above is reaction to the pool of med. Interesting part, they don't know how much baclofen is being absorbed systemically, so it's hard to Rx a certain amount of baclofen to make up the difference, sort of playing it by ear.

As to alarms...the physiatrist said the alarms don't sound because the pump is working fine and has no idea the med isn't going where it's supposed to go, so no alarm. I'll talk to the Medtronic tech for more info.

[rdmc]

Should have said "castle" in last post...dang iPad. well the surgeon just popped by...good news it's fixable...bad news, from what he's seeing on the images I need the whole surgery again, that means back incision and belly incision. So keep me in your prayers tomorrow afternoon.

[snowy]

rdmc,
You will be in my prayers tomorrow. Hope everything goes well for you. Let us know how things go.

[BobOP]

Hi RDMC

I wish you the best with the surgery.

Bob