Question for Bob or others re: Drs and Baclofen pump

[BobOP]

Hi Rdmc

I am glad to hear things went pretty well with the pump implanting.

Sorry you had the " headache" but I am glad it was actually pretty short.

I am happy to hear you are walking a little better already. I wish you the best.

Take Care, Bob

[bluegiraffe]

Hi Rdmc,
Glad to hear it went well - keep us posted. Interested to hear why the 3rd incision (?). The headache sucks ! I had it for a week

I'm getting a bit stronger - it is so nice not to have pain - just need to hopefully get past the weakness.

Timing wise we are both just 1 month into this - would love to hear your updates/progress.

Bob,
Since I have the pediatric size pump I believe I will be due for my first refill in March. Is the headache a potential side effect with refills ? Do you know how long it takes and is it painful ?

thanks

[BobOP]

Hi Bluegiraffe

I hope you are doing well. I can say I haven't had any issues with migraines since I got my original pump implanted. Even when I got my new pumps, headaches was not an issue. That is because they don't have to do anything to the catheter in the spinal column.

As for the refill, they are pretty uneventful for me. My dr interigates the pump with the handheld device. She finds out how much baclofen is left in the pump along with other info. My dr then locates my pump. We know where it is...LOL. She has reference points she is looking for. This allows for her to know where to place the template to find the refill port in the middle of the pump..

She then sterilizes the area & draws out the old baclofen in the pump. I feel like the needle that is used is sort of like the needle used for a blood draw.. My dr is very good & I really don't feel the needle going in.

After checking to make sure she got all of the old baclofen out, she then puts in the fresh baclofen. She then interigates the pump changing the amount in the pump, which in turn gives us the new refill date.

I would say the process takes about 25 minutes total for me.

Take Care, Bob

[bluegiraffe]

Thanks much Bob.

One last question (for now ), I have the pediatric pump and understand the refills are approx every 6 weeks. Also understand the unit will beep when a refill is due - do you know if the beep occurs at a specific level where there is x amount left before it requires the refill ? Meaning does the pump provide an advance warning ? My concern is that unless the doctor gives me a precise date and I learn more with time then I could be at risk of not getting a refill in time ?

thanks again for all your insight.

[rdmc]

Hey Bg,

From why I was told, the beep alert gives plenty of time to get into the physiatrist before it completely runs out. New to me was the other info about the two tone alert should something go wrong with the pump and/or catheter...that's a good idea.

I went to the physiatrist this AM because of lots of pain and tightness on my good side. They upped the dose a little, but there's some thinking it might be muscle soreness from walking more normal and using muscles that I haven't used in awhile...they upped my dose a little though. I got a print out saying I had enough med for something like 300 days...they said I got a pump with a big reservoir.

Can't shower for a few more days...bummer...can't take ibuprofen, still...I have pain pills but would prefer trying ibuprofen...I have a low fever but no UTI (they checked) so maybe that's just surgery related.

And from being up out of the bed for most of the morning the headache came back...so I'm lying flat and it does help.

Found out the third incision had to do with getting the catheter to the pump.

Hope you get some answers...how is the PT going? Are you still in the hospital?

[bluegiraffe]

hi rdmc,
no, been home from the hospital and rehab since 2/1. have not started the pt from home yet but will start next week. still trying to adapt some due to no mobility still and weakness in my legs. still much better than pain and the above. learning to use a transfer board better and hopefully will be able to be somewhat independent with time. been riding a bike pedaler with a motor to get movement going.

yeah - the headaches and throwing up went on for close to a week for me - as soon as I laid down I felt better. just staying in bed is not a good thing but till it gets better its a good idea.

surprised you can't take tylenol - i was resistent to the pain meds while in the hospital due to them making me feel worse overall. i took tylenol starting the second day after surgery, although i didn't have much pain - it was more for the headaches.

are you saying there is a 2 beep signal to relay an issue ? never heard about that one - although i haven't read all the material yet. and why would your resevoir be higher ? what dose are you currently at ? I am at 130 mcgs.

any idea why a third incision was needed ? thought the incision in the back was for the catheter ? maybe anatomy plays a part ?

what are your plans next ? do you think you need PT or can do what is needed on your own ?

thanks for the update - hope you continue to feel strong and the headaches subside.

[BobOP]

Hi BG

The only pump alarm I have heard of is for when the amount of the baclofen gets to low in the pump. I believe the alarm dose is set at 2 micagrams. I know it is on my pump. When they went to the current version pump, they changed the alarm from a very lite beep to what sounds like a german ambulance...LOL.

I did get to hear it once when my medtronic rep turned it on at a program. However, the only reason she did that was I was getting a new pump a few weeks later. Setting off the alarm does cause a little strain on the battery.

When you get a pump refill, the dr will get a print out of when is the next refill date. That is the day the pump alarm could go off. We always do the refill at least a week before the refill date.

I have the 40 cc pump & my refill's are done every 4 & 1/2 months. The longest you can go is 6 months due to the shelf life of the liquid baclofen.

Take Care, Bob

[rdmc]

The Medtronics tech told us there is a non-critical and a critical alarm tone. I looked it up in my manual and it says the same thing. I think the German ambulance one is the critical one that sounds if the pump quits working or the med gets critically low. The regular beep one just sounds at the regular refill interval...I'll mauve to ask the rep.

As to refills I was just getting my info from the printout. It says my refill interval is 337 days...I'm on a low dose to start. It also says the low reservoir alarm date is 1/19/2011. I hadn't heard about the shelf life issue.

The third incision is on my side and evidently there was an issue getting the catheter threaded to the pump.

[rdmc]

Oops, the refill date on the printout says 2012, not 2011