Blue Giraffe...I have a question for you

[rdmc]

Hey BG,

Hope you're doing well. Never read if your reduction in dosage helped your upper body strength. I was wondering if it gave you more ability with transfers?

I know you and I had our pumps implanted around the same time, and if I'm not mistaken, yours was one of those on the recall list, as is mine.

I had a pump refill last week, and the pump doc and I were talking about the "threat" that was outlined in the recall. I've had mine 3 years, and the recall seems to state that around 4 years there is a possibility of battery failure, which would be early next year for me.

My physiatrist is going to talk to the Medtronics rep...who is the answer lady, for sure. She is very informed.

But I came home and once again checked my serial number to make sure my pump is one of those recalled, and it is. So I started researching what the recall involved, and it looks to me that they don't automatically substitute a new pump for a recalled one at the 4 year mark, unless you get alarms from the pump, or notice increase in spasticity, etc. (i.e. they don't replace them "prophylactically"...that's the term they used.)

That sure makes sense to me, because I told my doctor, I wouldn't really be interested in replacing it just because it "might" fail...I already had that one redo because the catheter came out. However, I've read on pumpsters that some folks did have theirs replaced at the 4 year mark just to be sure...I'm 99% convinced that wouldn't be my choice.

Just wondering if you've heard any info from your pump doc.

P.S. Shout out to Bob...do you have any info, and am I reading the Medtronics recommendations correctly when it seems to say take a wait an see approach.

[Kimba22]

Hi rdmc,

Mine is also on the recall list. It was implanted 6 years ago. I also heard they weren't being replaced unless there was a problem. I highly doubt my insurance would agree to pay for a replacement, anyway, unless it was recommended. So, the wait & see approach it is. (Like you, I have not been eager for any more surgeries, anyway!)

So far, so good! However, I am due for a replacement this year.

[bluegiraffe]

Hi RDMC,
Good timing - I have my refill appt tomorrow morning and will ask about it.

I remember your past post that informed me about the recall and my serial number was listed as well.

I too recall that it was not an automatic replacement. I never talked to my physiatrist about it but will bring it up to him tomorrow.

As far as the reduced dose it hasn't affected me negatively and maybe some (minimal) with upper body strength for transfers. Definitely not the positive experience I had rationalized was due to maybe a weakened dose past the 6 month refill timeframe (I was convinced that was the reason ). Anyway I went from 140 to 112 a year ago and didn't see any more spasticity so I left it at 112. Thinking may raise some as my knees are pulling in more lately. Drawback is the potential upper body weakness - the balancing act

How are you doing ?

[rdmc]

Hey Kimba and BG,

Kimba I didn't know you also had one of the recalled ones.

As to cost, I mentioned that to my physiatrist, and we assumed if a recalled defective pump needed to be replaced that Medtronics would certainly pick up some of the cost. I might be wrong, but if a recalled part on your car needs fixing it's not the customer who's liable for the cost. Crude analogy, I really have no idea how it would work.

Anyhoo, I'm all for waiting as long as possible. I picked up an infection on my redo surgery, and the 6 weeks of Vancomycin was a bit more than inconvenient.

BG, sorry you didn't get the effect you were hoping for from the step down in dosage. I've been stable with my dosage for the most part, not having to go in between refills to get it adjusted, but I did step it up about 5 % last refill. I think I'm around 170 mcg. My only ongoing issue I have is my pump has continued to float and seems to cause some muscle spasms when it does, but good news is I just put on a binder for a few days, and it seems to stabilize it.

I still believe the pump has been the best thing I've done in my MS journey.

Hoping we all don't hear the alarms and our pumps make it to the seven year mark...Kimba keep us informed when you go for your replacement surgery. Bob has us beat, I think he's said he's on pump #3.

[BobOP]

Hi All

I hope things are going well for everybody. I did a little reading. There are actually 2 recalls on our pump. One was issued in 2011 about the battery life & one was issued in July 2013 about dosing.

I can share my experience. I got my current pump installed in 2008. The plan is to replace it sometime this year. Yes, it is my 3rd baclofen pump.

In October , we started doing my dosing differently to help with my night spasms. I get more baclofen from 11pm-7am. My dose is now 119 mikagrams a day up from 117 mikagrams a day. The extra 2 mikagrams is in the 11pm-7am dosing.

It has worked well for me.

RMDC & myself have the same Medtronic rep. I am a little biased but she is great.

My physiatrist is also very good & she is very cautious. We work as a team. I let her & my rep know if something weird is happening & then we handle it.

Take Care, Bob

[bluegiraffe]

Hi,
Ok I asked my physiatrist and he called his Medtronic rep on his cell and she confirmed an alarm will sound if the pump does in fact need an early replacement due to the battery. He also said it is the similar to the situation if you go past the date for your refill, where the alarm will go off.

He checked my battery life remaining and says I have 45 months left (on the printout).

rdmc,
I wonder what causes the float you experience sometimes ?

Even though I didn't experience the very positive upper body strength again (wish I knew how that happened that one time) I am happier with the reduced dose at 112 mcg and we left is at that today as he thinks my knees tightening some is due to my hamstrings and suggested my physical therapist focus on stretches (which I think we already do). He also gave me a prescription for oral baclofen and suggested taking 10/20 mgs before PT sessions.

Kimba,
Good to hear your pump doesn't sound affected.
I'll be interested from you and Bob about the pump replacement surgery, I hear it's easier since the catheter stays in place, but wonder if the spinal headache (I unfortunately got) is still possible and how you avoid underdose risks. Maybe oral baclofen during surgery ?

[Kimba22]

Blue Giraffe,

Sorry to hear your not seeing much increased strength in your upper body and about your knees. I hope the stretching will help.

Heard & read the same thing about the alarm. Withdrawal sounds horribly painful (not to mention, the nurse who's refilled mine always stressed sudden withdrawal could even be fatal with my dosage), and I do have oral baclofen on hand just in case.

As long as nothing is being done with the catheter, I don't believe there's any risk at all for a spinal headache. Replacing the pump just involves opening up the pump's incision site. Scar tissue forms around the unit (which is what also helps keep it in place - wonder why your's still moves, rmdc?), so there's a little effort to get it out. Supposedly, still not a big deal (um ... as long as I don't feel it! Had some ports removed before, and the tugging sensation was wierd ... but nothing I couldn't handle, although one time it took the surgeon quite a bit of effort to finally get it out - in the process, heard a story about one of his last patients requiring to be anesthetized for a less difficult removal) I'm just a bit more concerned about the 3" incision site & any pain afterward. I was a lot more mobile the first time.

Haven't talked to the doc yet about it (I just transferred to a new one), both of the other docs I used see thought I should've gotten the smaller pump. I know there's a more concentrated baclofen available now, which help a lot as far how often I would need to get mine refilled if I get the smaller pump. My daily dose is higher than the rest of you guys (220 mcg/day), and honestly don't really want to have to get it refilled much more often than I do.

Not sure if they have you take any oral baclofen or not before surgery? I know after my MRI, I have to go immediately to my pump doc's office where it's checked to make sure it came back on. I guess it's OK to have a 'slight' delay receiving the medicine, otherwise, I think there would me more urgency immediately following an MRI?

rdmc,

I know the doctor's were all supposed to be notified about the recall, but mine never mentioned it until I said something about it (after reading your post). Never really got much of a reaction from him, just not to worry because of the alarm (& do I have oral baclofen on hand?).

I also read another reason the pumps weren't automatically being replaced was due to the risk of infection. Didn't you end up with MRSA last time? I remember what an awful experience you had. I can relate a little bit to you after my 6 weeks of Vancomycin and Gentamicin when I had endocarditis. Definitely not fun.

Bob,

Good luck to you with your next surgery, too!

Anyway, let's hope no one hears their alarms go off!

Take care everyone .

[rdmc]

Bob...I had forgotten that we have the same Medtronic rep...she is so nice and so informed.

So you're having another surgery, hope you have a speedy recovery. How did they determine to do it this year?

Kimba and BG, I, too, take oral baclofen, 10 mg 3 x a day, to help with upper body spasticity.

As to the float issue, my physiatrist was not concerned in the least when I mentioned it to her a year or so ago. She just said it was a "floater." They evidently make a sac like area to implant the pump and mine escaped the sac I guess. I think it makes refills a little more challenging, but I'm always amazed at the way they're able to feel the pump and locate the port without actually seeing the pump.

As to withdrawal: when my catheter came out, I imagine it was more than 24 hours before I noticed any symptoms that got my attention. I had had increased spasticity, but that happens sometimes even with the pump so I didn't pay it any mind. I was itchy (which turns out is one of the symptoms of withdrawal)...but it wasn't until my abdomen swell because of the pooling baclofen that I went to the ER.

After the problem was confirmed (all it took was an x-ray) I was checked in and waited about 5 days to get on the neurosurgeon's schedule. I took oral baclofen in the hospital while waiting, but the main treatment for withdrawal seems to IV benzodiazapine...and that's what they gave me ( the paper they give you to carry in your wallet in order to inform a physician not familiar with the pump or withdrawal symptoms does say that if withdrawal is suspected you can't count on oral baclofen alone, and IV benzos are the complement to the oral baclofen until the pump is hooked back up.)

Kimba, I remember you being really sick and hospitalized for an extended period, I think it was when you were having your pacemaker replaced to get one that allowed you to get an MRI. Was that when you had the infection?

Fortunately, mine remained localized on the skin of my abdomen, in and around the incision site. If it had gotten to the pump, or bloodstream, they were going to remove the pump and wait a few months till the infection is cleared up in order to replace it...that would be a bummer.

So I'll keep my ear "peeled" for sirens...only actual time I've heard the alarm was after an MRI and it was giving me the "European Ambulance" warning, LOL, that's what it sounds like to me. But I was headed to the physiatrist any way because of the post MRI check, and it resolved on the way, must have restarted itself...but the physiatrist confirmed it was working.

[Kimba22]

Hi rdmc,

Thanks for all the info about baclofen withdrawal. Never thought about it, but makes sense adding IV benzos. The dosing of oral baclofen doesn't really compare to getting it through the pump.

I remember now you didn't have to have your pump removed. I was thinking you did. One time when I was in the hospital, found out my roommate also had a pump (but was for pain medicine). Don't remember all the details, but I think her abdomen was swelling, too. Turned out she also had MRSA, and it had gotten to her pump. I felt bad for her, I remember her crying when they told it it had to be removed and they weren't sure how long it would be when or if she could get a new one.

My infection followed a few months later from that surgery, I had sepsis (from a UTI) and it went to my heart. The urosepsis turned into endocarditis really fast, and of course, wouldn't you know it, the bacteria colonized on a lead of my spanking new pacemaker. So, out it had to come. Both my dad & I ended up in the same hospital at the same time, both on the cardiac floor. He had a heart attack and needed open heart surgery to have his damaged mitral malve replaced. I had to be transferred to another hospital to have my pacemaker removed. The surgeries for both of us were even scheduled on the same day. Neither one us had much time to think about it. But, it was a bit stressful for my family!

I've dreamt my alarm has gone off and didn't know what the sound was at first. Of course, turned out it was my husband's alarm clock! lol Guess I'll be dreaming next it sounds like one of those European Ambulances!

[rdmc]

Well Kimba, I knew you were sick, but that sounds awful, especially when you got the new pacemaker in order to get MRIs. I think you were absent from the forum too, probably why all that was going on, because I looked for any posts you might have made and didn't find any, so I figured something was up.

My neurosurgeon's PA has told me she's seen grown men cry when she tells them they have to take the pump out (usually due to infection) for a few months.

I think I'd probably be boo hooing too because even in that short time I was off the pump, while waiting for the surgery, all the spasticity symptoms and mobility problems, and pain, returned in such a short amount of
time, and vice versa, pump back in, and spasticity, pain, and range of motion eased right away.

I've had times where I thought I might be getting an alarm, some sound I hear and trying to locate it, I wonder
if it's the pump. It tickles me because the term for introspection "navel gazing" for us pump folks need to be altered to "navel listening"

[rdmc]

I resurrected this thread because I didn't see the need for a new one. There aren't that many pump people on the site.

Revolting development, my pump always seemed to have a lot of movement/float yet it stayed in the general vicinity of the implanatation site, but it's evidently decided to take a "walkabout" and is sitting just above my groin.

I started having some muscle spasms on that side a few weeks ago, not really paying them much mind, but they got worse, and that's when I noticed the pump had gone to look for a new place to live.

I think there must be a no trespassing sign where it's decided to settle. Fortunately, it's obviously still working and the catheter hasn't come loose because I'm still walking, and able to lift my legs.

Not sure what my next step is. I saw the physiatrist last week who confimed what had happened. It gives me quite a bit of pain if I'm not reclining or lying down (so I'm spending a lot of time reclining and/or lying down)...still working but from the bed or recliner.

Put a call into the physiatrist this morning (we had decided last week to try a binder to see if that could help, but it hasn't), so I'll let you know where the road leads next.

I found my x-rays taken at the time of the last surgery and saw where the pump was back then, and when I see/feel it is today, the Biblical quote from Revelation came to mind "It has fallen, Babylon the Great has fallen"...paraphrased for my situation: It has fallen, Medtronics the Synchromed has fallen.

Waiting game now to hear back from the physiatrist what I do or where I go next.

Anybody have their pump move?

[Kimba22]

Hi rdmc,

Oh no! That doesn't sound comfortable at all! I'm so sorry to hear this.

For whatever reason, this topic even came up when I saw my new doctor a few weeks ago. I think he made a comment something to the effect that mine was secure in it's location. Of course, only because of you did I have a clue what it was he was talking about. So, I said I knew of someone who had a 'floater.' He just said that happens sometimes, and that wearing a binder usually helped.

Let us know what your doctor says. I'll be thinking about you.

[rdmc]

Hi rdmc,

Oh no! That doesn't sound comfortable at all! I'm so sorry to hear this.

For whatever reason, this topic even came up when I saw my new doctor a few weeks ago. I think he made a comment something to the effect that mine was secure in it's location. Of course, only because of you did I have a clue what it was he was talking about. So, I said I knew of someone who had a 'floater.' He just said that happens sometimes, and that wearing a binder usually helped.

Let us know what your doctor says. I'll be thinking about you.

Hey Kimba,

Glad you've got a secure pump

I've worn a binder for almost the entire time I've had the pump, so I'll be interested to find out what's going on now. I've put a call in to the neurosurgeon's office, and had to go through one of those complicated voicemail options. I picked the one that said previous patients...and the recording said to leave your info and problem and you will receive a call with 1-3 days (that surprised me.) So I called the physiatrist and they were going to send over a fax about the problem. But here I wait...I think they must figure if it's really bad you can go through the ER, but I'd rather avoid that.

We do seem to have long waits in Florida for doc's appts. I have the kind of insurance where I can go to anyone without a referral, but the waits are ridiculous. My GP takes 6 weeks to get into, if it's urgent you see an NP. The MS neuro took 6 months and I only saw him on the first visit after that it was usually a NP, and my regular neuro is about a 3 week wait, not sure what you do in regard to an urgent problem, I'm sure they have a way to see you sooner, I just haven't had to.

[BobOP]

HI RDMC

I am sorry to hear about the issue with the pump. Do you have the contact info for the Medtronic rep? That might speed up the process for you.

Take Care, Bob

[rdmc]

HI RDMC

I am sorry to hear about the issue with the pump. Do you have the contact info for the Medtronic rep? That might speed up the process for you.

Take Care, Bob

Hey Bob,

Thanks for the suggestion, I hadn't thought of that. I'll get in touch with her tomorrow. Still haven't heard from the neurosurgeon, and myself and my physiatrist are both working on it.