Baclofen Pump Replacement

[bobtheisen]

Hi BG

Glad to hear things went well. You are right. It is an easier surgery when they don't have to do anything to the catheter. I still have the same catheter from 1999. Each time I get my pump replaced, they check it.

I wish my neurosurgeon would use something other than staples. I can't wait for the day that those come out. The last time he used over 20 staples.

Wishing you the best, Bob

[bluegiraffe]

Hello, In case this information can help anyone; for an update I did have my replacement surgery done last week. It was outpatient at the hospital, surgery started at 8:30 AM (was there two hours prior) and home by 11:30 AM. I had to complete some pre-op tests through my general practitioner within a month before the surgery date, to clear me for the surgery.

It was done with local anesthesia and sedation, it was a 'twilight' anesthesia using Propofol and something else (I can't remember the name).
The anesthesiologist explained that he would be monitoring me throughout and raising/lowing the d oseas levels fluctuated up and down.

I was given antibiotics through my IV during the surgery as my neurosurgeon told me during our consultation last month. I was not given any further antibiotics to take after. I think he did call in a prescription for pain pills but I did not fill it as I usually feel worse rather than better when I've taken them in the past (just me).

Just the pump was replaced nothing was done with the catheter which is why I think it was done as outpatient and much quicker than the initial implant six and 1/2 years ago.

Besides feeling weaker than I had imagined and having a very dry mouth and throat for 12 hours after (the anesthesiologist said that was from the second drug that I don't remember the name of), but I started feeling more like myself after a couple of days.

The incision area felt sore at first but again after the first two days I don't feel it anymore.
I have dissolvable stitches and a bandage with two layers, I'm supposed to take off the first layer and leave the second sterile strip layer for two weeks until my post op visit with my neurosurgeon.

Overall it went okay and was happy to be home the same day, because of my condition of not being ambulatory everything's a bit challenging and I just think the operation and anesthesia made me very weak at first.

[alanpgh]

Best Wishes Bob... We all hope all goes well!

Alan

[bobtheisen]

Hi All

I hope things go well for you BG with the pump replacement. All my pump replacements have been outpatient until the last one. My current pump dr kept me for a 1 night stay.

Take Care, Bob

[kmallory1]

I thought a local anesthetic just affected the area to be operated on, without putting you to sleep. That would be scary.

[bluegiraffe]

Thanks kmallory, I did see that you said you had your replacement as an outpatient earlier in this thread.

I'm not certain of how the local anesthesia works, he mentioned I would be sedated as well.
I did have a general for the initial implant seven years ago, I will be making sure with the surgery coordinator what it actually means.

Years ago I had a colonoscopy I'm pretty certain they did a local anesthesia for that and I was definitely out, but woke up quickly.

[kmallory1]

My pump was replaced under general anesthesia.

The surgery was outpatient at the hospital and took about a half day, from getting there to leaving.

[bluegiraffe]

Met with my neurosurgeon today and learned that my pump replacement surgery next month will be outpatient surgery with a local anesthesia.

If anything with the catheter is found, it would require another surgery.

He said he will replace the pump and possibly a valve if needed.

This seems much simpler then I expected.

Being my 1st replacement of the pump, have others had an outpatient replacement with local anesthesia? I better be out of it !!!!

[bluegiraffe]

Met with my neurosurgeon today and learned that my pump replacement surgery next month will be outpatient surgery with a local anesthesia.

If anything with the catheter is found, it would require another surgery.

He said he will replace the pump and possibly a valve if needed.

This seems much simpler then I expected.

Being my 1st replacement of the pump, have others had an outpatient replacement with local anesthesia? I better be out of it !!!!

[bobtheisen]

Hi All

Sorry for coming in late on this. Since I have been using this generation of the pump, the first pump I replaced was after 6 years. This is what my physiatrist does. The pump lets us know how many months are left before replacing the pump. The battery lasts 7 years but once I hit 6 years, she sets the wheels in to motion, to change out the pump. I am just past 2 years with my current pump...So, I will ask off from work now for July, 2020 for my next pump...LOL

Take Care, Bob

[Kimba22]

Hi rdmc,
Glad you posted this, I've been thinking the same regarding planning (and getting a head start on getting nervous too ).

Since we got our pumps in a close timeframe we will likely get replacements close too.

I've kept a close eye on the printout at each refill to see the estimated remaining months of battery life. I called Medtronic who relayed you have 3 months to get it replaced after the printout time. I mentioned the beep also, which your physiatrist would of course turn off.

Last time I asked my physiatrist, he said he would coordinate the surgery. I plan ask more at my upcoming refill also.

It would be good to just have the pump replaced and not the catheter. My only question is I don't know the actual position of my catheter and wonder if it is a contributor to my upper body weakness. I plan to ask on it as well.

I also wonder if I should expect to go to rehab after as I did initially after the surgery. I wouldn't think so, but not sure.

Keep me posted if you get more from your appt, I'll do the same.

Hi bluegirraffe,

Sorry about your upper body weakness. Not fun if you need the catheter moved, but would be great if that were to help.Since you are already adjusted to having the pump, not sure you'd need rehab afterward either.

Talked with my doctor beforehand about possibility of rehab after my surgery because of my history of complications (and a major flare) after surgeries, so was kept overnight for observation. Had another flare, so spent a few months in inpatient rehab.

Please keep us updated and hope all goes well with your surgery, too!

[Kimba22]

Hi rdmc,

My replacement surgery was just before 6 1/2 years. (My pump was also one of the recalled ones, but my doctor who was new to me at the time, didn't mention anything about that). The ERI (Estimated Replacement Interval) is what kmallory and bluegiraffe were referring to, and mine was actually a few months later than the month it was replaced. But, my doctor's "window" was 4 - 6 months prior to that date.

The printout they get each time they check our pump has all the info about our pump and catheter on it - serial numbers, settings, low reservoir alarm date, number of months to ERI date (which can change), even the depth implanted and length of our pump, and more. They keep it for our records. I always ask for a copy of it when my pump is refilled. (Guess that's because I was always given a copy with my first doctor) According to my current reading, the ERI of this one would make it less than first one by 2 months. So, would have had this pump exactly 6 1/2 years. (Have had it over 2 years now.)

The pump lasts 4-7 years depending on how much medicine the pump delivers each day, according to the Medtronics web site. So I gather from that, it depends on your dosage.

I'm at 100 micrograms, and made it the full 7 years.

I've stayed around 220 mcgs since this one was implanted, up or down 5%. (Although last visit it was upped to 231 mcgs, and will probably have to go higher. )

I thought I had up to my ERI date (which would've been in August that year) to have mine replaced, so had planned on having surgery in July. Silly me. Imagine my surprise when my doctor wanted surgery scheduled already at our very first meeting in February! I was able to push out the surgery to the end of May, but that was my doctor's absolute limit. The reason he gave was that the ERI was only an "estimated" date, and the pump didn't always make it that long. So, maybe his reasoning did have something to do with the recalled pumps, IDK. I've since read the 90 day thing, too, but my doctor was adamant about replacing mine sooner. (Took over a year - with plenty of persistance - before I could schedule my refill dates beyond 3 months. Even though with the more concentrated Gablofen, my refill alarm date was closer to 6 months; went round and round with that one ...)

I suppose it all depends on your doctor. I know what you mean about not looking forward to another surgery, my MS didn't fare well after the last one was implanted. And you've certainly had more than your fair share of complications! Keep us updated and best of luck with your surgery!

[bluegiraffe]

Hi rdmc,
Glad you posted this, I've been thinking the same regarding planning (and getting a head start on getting nervous too ).

Since we got our pumps in a close timeframe we will likely get replacements close too.

I've kept a close eye on the printout at each refill to see the estimated remaining months of battery life. I called Medtronic who relayed you have 3 months to get it replaced after the printout time. I mentioned the beep also, which your physiatrist would of course turn off.

Last time I asked my physiatrist, he said he would coordinate the surgery. I plan ask more at my upcoming refill also.

It would be good to just have the pump replaced and not the catheter. My only question is I don't know the actual position of my catheter and wonder if it is a contributor to my upper body weakness. I plan to ask on it as well.

I also wonder if I should expect to go to rehab after as I did initially after the surgery. I wouldn't think so, but not sure.

Keep me posted if you get more from your appt, I'll do the same.

[rdmc]

I know people that have had their pump for over 10 years and have no intentions of replacing it until it starts beeping.

My doctor uses the print outs for all maintenance items.

Wow Marco...those are brave souls. But I have to agree that the less surgical procedures, the better. After one of my revisions I ended up on IV drugs in the hospital and at home for the MRSA I picked up in the hospital. Luckily it was confined to my skin, never made it to the pump. If it had, the pump has to come out for months before it can be reimplanted. The neurosurgeon said she's seen grown men cry when they had to have the pump removed due to infection, or other cause.

Six months after I had the pump implanted, the catheter came loose and I was without the use of the pump while they waited to fit me into the neurosurgeons schedule, I spent the entire week in the hospital, and in pain. The catheter had snaked back to the pump and was coiled (like a snake) beside it, the pump never quit working. So there was liquid baclofen in my body, a whole puddle of it, but not in the right place. I felt super weird too and my legs seized up, so they had me in the hospital on oral baclofen and some other iv med, I think it might have been a diazepam. When the catheter was reimplanted and was working again, blessed relief. So I'm a little freaked out about the possibility of doing without.

And with this battery recall, it's not that the battery's low, it just quits, and the machine quits. But I looked at the odds of it happening. They're pretty minuscule.

If battery life is measured by the amount of med pumped, I'm at a pretty high dosage. I use 250 mcg a day and am planning on upping that a little more. I've been over 200 for the past couple years.

I see my physiatrist on Tuesday, to "up the pump", but I'll see what her take is on the battery and replacement scenario.

[Marco]

I know people that have had their pump for over 10 years and have no intentions of replacing it until it starts beeping.

My doctor uses the print outs for all maintenance items.