Blue Giraffe...I have a question for you

[bluegiraffe]

Hey rdmc,
Just seeing your post now and sorry to hear. I hope you have gotten some answers.

I 've always been concerned regarding 'emergency situations' - my physiatrist says to contact the hospital his office is located near and they would page him. For the neurosurgeon - I'm sure you tried, I would get a person (I always keep pressing 0 for those recordings) and explain that you need attention at least to speak with someone as soon as possible. But again I'm sure you've done that.

I too would avoid the ER when possible. The more I think about it I would think your physiatrist would be the one to push. Hopefully Bobs suggestion got you some answers.

Keep us posted, I hope you are doing ok with the binder.

[rdmc]

Hey rdmc,
Just seeing your post now and sorry to hear. I hope you have gotten some answers.

I 've always been concerned regarding 'emergency situations' - my physiatrist says to contact the hospital his office is located near and they would page him. For the neurosurgeon - I'm sure you tried, I would get a person (I always keep pressing 0 for those recordings) and explain that you need attention at least to speak with someone as soon as possible. But again I'm sure you've done that.

I too would avoid the ER when possible. The more I think about it I would think your physiatrist would be the one to push. Hopefully Bobs suggestion got you some answers.

Keep us posted, I hope you are doing ok with the binder.

Oops, sorry I forgot to update this.

Well I took Bob's suggestion and got my Medtronics rep involved (actually my physiatrist had already contacted her, and told me to also give her a call.) She made some calls, talked to "real" people and it turns out the neurosurgeon was out of town.

But since I had had some swelling, and pain associated with the position of the pump, his office advised me, through the rep, to go to the ER.

The ER doc was clueless about the pump, I told him what they usually do to check it, but it was nice that he was honest and said he wouldn't know what he was looking at (I had brought x-rays with me from right after the pump surgery for comparison.) I did get a lecture from one of the nurses about me waiting so long to get it checked out, by the time I got to the ER it had been a week since I saw the physiatrist, but I told her I was following dr's orders.

In my experience with ERs I always feel like an errant child. I get the "why have you waited this long to come in" lecture, or on other occasions, they trivialize the complaint and that makes me feel like I've overreacted...Catch 22, darned if you do, darned if you don't.

So he put a call into the neurosurgeon and they advised him to admit me, after running a CAT scan, I think they wanted to make sure nothing was leaking.

Next day, the surgeon was back in town and confirmed although everything is working (pump and catheter) the pump has moved out of the area it was in and was sitting low (he said it was on my "ischial tuberosity" which meant nothing to me at the time, but it sounds funny when I say it .) I've since looked it up and it's the lowest part of the pelvis and various muscles are attached there.

So I have to have surgery to make a new home for the pump. I'm supposed to be getting a call from his surgery coordinator. I'm having a hard time walking because where the pump sits when I'm standing is impeding my gait (plus it hurts)...but if I put a hand under the pump and lift it off the muscle band, I can walk much better (I remind myself of those teenagers who wear the baggy pants and have to hold them up with one hand, LOL)

Mostly, I'm just hanging out in a recliner, or with my wedge system, propped up in the bed. Still working, in fact worked from the hospital, glad I work from home because it gives me something to pass the time.

I'll let you know how it goes after I have the surgery, oh, and I already mentioned I have a recalled pump, so I imagine they'll swap it out for a new one. 3 years on this one, and that battery recall says they can fail at 4 years, so makes sense to swap it out in case it were one with a battery defect.

Thanks to all you fellow "pumpsters" for your suggestions and concern.

[bluegiraffe]

Hi rdmc,
Happy to hear the pump is working and if the surgery is 'to find a new home' maybe they can leave the catheter as is.

Sorry to hear you are going through the surgery again and had to go to the ER. My concern has been (which you confirmed) that if there is a need to go to the ER most will most likely not know about the pump. I worry about that too.

Hope you can get this behind you quickly and not have a need for the binder.

Keep us posted and be well.

[Kimba22]

Hi rdmc,

Glad to hear the catheter and pump are working fine, but sorry you needed to go to the ER and have to have surgery to find a new 'home' for your pump. I hope it will stay put after this, and you won't need to wear a binder anymore. I would cetainly hope your recalled pump gets replaced now, since you have to have surgery, anyway. I'm sure this was the furthest thing from your mind when you started this thread! Guess you will beat out Bob & me for the next surgery, after all ...

Found out I need to have my pump replaced sooner than I expected. My doctor said there is a high risk for battery failure within 3 months of the ERI alarm date. Not looking forward to it, especially with some of my other experiences, and was hoping I had up to my ERI date to have my pump replaced. I'm glad I got 7+ years from this pump, though.

My doctor told me he'd make a new 'home' for my pump, too, which didn't surprise me, since it is too close to my pelvis (lol ... my iliac crest ). Something I discovered within weeks of having this pump implanted, since it hurt when I bent over. Have no idea why that neurosurgeon placed it so low, and my physiatrist was not at all pleased. I don't know if the neurosurgeon was just inexperienced with them or what (he was young and a relatively new neurosurgeon on staff). Anyways, I learned pretty quickly not to bend over too far, since I wanted to avoid another surgery if I could help it. That's helped me live with it where it's at all these years, even though I've seen 3 doctors that have offered to move it (including the one who placed it too low to begin with ... uh, no, especially after he told me he'd need to move it under my ribcage ) Does make me wonder what happened to him, though, since he was no longer at that hospital a year later, when my new pump doctor tried to contact him.

Just thinking about where yours is at makes me want to cringe. Glad you can still find some humor in all this. I'm sure you'll be more than happy not to have to hold your pump anymore so you can walk! Keep us posted and I'll be watching for your updates. I'll be thinking of you.

[rdmc]

Hey Kimba and BG,

Yeah who would have thought when we discussed pump recalls earlier in this thread, I'd be having to have surgery because of the pump.

I should have added a "knock on wood"....(there must be a virtual way to do that and if not, maybe they should make an emoticon with a table and a fist to symbolize it) when I said I would wait the life of the pump and not do anything ahead of the 7 years unless the battery failed.

Good news is surgery is Friday and I'll be glad to get this thing moved. He mentioned maybe moving it more to the center...which got me to thinking, if you have an "innie" belly button and you implant a baclofen pump under it, would that result in an "outie."

As to replacing the recalled pump with another. Evidently it's not a cut and dried thing. I'm not sure if I'll get a replacement or not. Evidently Medtronics policy is not to replace them prophylactically since there is only a fraction of a percentage point that have had the battery problem.

I advocated for a new pump to replace the old because we're having to open me up, and although I'm not having battery issues, what if in another 10 months (which will be four years) I am one of the small percentage that has a battery problem, then that means another surgery.

I am sold on the pump, and I'd do whatever necessary to keep it, but this will be my third surgery (original surgery, catheter migration surgery, and now pump movement surgery) in 3 years, and if I'm one of the unlucky ones, and the battery did fail, that'd be 4 surgeries in 4 years.

But I didn't ask for a commitment as to whether or not I'd get a new pump, I just made my case to all parties involved. I've got to have the surgery, and I just can't let that detail bother me, nor waste emotional energy over it. I'm more like "whatever...it is what it is" and I'm not a doctor, so I'll leave that decision to the neurosurgeon and the Med rep.

I've said it before and will say it again, that I don't think doctors can identify with the extra issues of recoup times we MSers deal with when we have surgery or another illness for that matter.

I'll get to join Bob in the "day surgery" club if things go smoothly. They can keep me up to 24 hours and still call it day surgery, and that's what they're going to try to do. Before I've always had to stay a few days but that might be because of the spinal surgery which this won't involve.
Any day you don't have to stay in the hospital is a good day!

[Kimba22]

Hi rdmc,

I hope your surgery goes smoothly Friday! Yeah, if Medtronics is the one paying for a new pump, they may not cover it. The only other alternative is your insurance company, but not much time between now and Friday to get something like that approved. I guess all you can do is leave that up to the neurosurgeon and the medtronics rep to hash out. Hopefully, with your history of 3 surgeries in 3 years, you'll be considered for a new one.

I do agree that most doctors don't identify with the extra issues we deal with when we recoup from surgery or have an illness. Glad to hear they already plan to keep you up to 24 hours. That's an issue I already addressed with my new doctor, and he said they will do the same. The nurse told me they are already trying to get pre authorization to keep me a couple of days. I'd rather have that option open just in case I need it.

Something else I remember from when I had my pump implanted was being told I had to leave soon after I came out of anesthesia, because they needed my bed for another patient. I can't remember if the nurse and/ or family got me dressed, but do remember being groggy and sore and not at all ready to leave. Good thing I had help once I got home, since it was all I could to just to get to the bed.

Back then, my family believed if I was told to go, I had to go (since I must really be ready to go ). I never even thought of telling my physiatrist about that. Seemed more like 'kick you out' surgery than outpatient surgery. Learned a lot since then, and now on the flipside, I am required to stay for observation for an hour after my pump gets refilled at my new pump doctor! I guess this a precaution they take if, for whatever reason, all the medicine doesn't end up inside the pump.

Wishing you the best on Friday along with a fast (and uneventful) recovery.

[bluegiraffe]

Hey onRDMC,
I would be more inclined to push for a new pump to get a new start on the 7 year battery life. I'd be less concerned about the recall and want to avoid the unavoidable of another surgery 4 years from now (if you can).

And not sure if it would make a difference for you (or not), but as you know I have the smaller pump My pump is located to the right of my belly button and I really cannot feel it.

The drawback with the smaller pump was the more frequent refill - but my physiatrist refills with the higher concentration of baclofen and it allows me to go the 6 months (can go much longer duration too).

Not sure this will help - as we are all different - but something to consider.

Wish you the best!

[rdmc]

Kimba,

I didn't know you had had the day surgery treatment too.

I know BG went from the pump surgery in hospital recovery straight to the rehab floor.

My first surgery I stayed 3 days, my second surgery when the catheter had migrated I stayed quite awhile because of complications.

If I remember correctly you had one of those deals where you were "stuck" in the hospital with complications (not from the pump but from your pacemaker, right.)

My main dislike in hospitals is the noise, especially if you have a roommate. I always pack earplugs because even with the door to my door closed, and the TV off, the noise makes me crazy, well crazier than normal.

Well, I can say I've never been sent home drowsy Funny how the more we deal with hospitals and medical practices the wiser we get.

As to waiting after a refill, have they made an explanation as to what they're looking for in that hour you have to wait. Do they have trouble accessing the port? It would be interesting to understand how they would tell if they had not gotten the med into the pump.

[bluegiraffe]

Looks like we posted close together rdmc, see post just before yours in case it can help.

[rdmc]

Hey onRDMC,
I would be more inclined to push for a new pump to get a new start on the 7 year battery life. I'd be less concerned about the recall and want to avoid the unavoidable of another surgery 4 years from now (if you can).

And not sure if it would make a difference for you (or not), but as you know I have the smaller pump My pump is located to the right of my belly button and I really cannot feel it.

The drawback with the smaller pump was the more frequent refill - but my physiatrist refills with the higher concentration of baclofen and it allows me to go the 6 months (can go much longer duration too).

Not sure this will help - as we are all different - but something to consider.

Wish you the best!

Hey BG,

Yeah "great minds post at the same time." Yours wasn't there when I posted.

As to the pump, I covered all angles with everyone involved. I checked with the Medtronics rep, and as of this afternoon, no decision had been made one way or another. But my surgery did get postponed until Monday due to the doctor's schedule.

I'm not allowing myself to get too worked up or emotionally invested in it. I think replacing is the right thing to do, I think it's the logical thing to do, but I'm not the one who'll decide, and I need the surgery so I can get back to "my normal."

I don't go out a lot, but all activity has pretty much been curtailed, even around the house, because neither standing, nor sitting is comfortable, I have to be in a reclining position to get pain relief. Getting to the pre-op surgery tests was a Herculean task (If I want to go out, maybe I need one of those chaise type get ups that are carried....the kind you see in old movies about Egyptian pharaohs or Cleopatra...besides the rig, I'd need to find 4 strong volunteers to do the carrying, LOL)

If I had more time, maybe I could push for a decision and then appeal it if I didn't think it was right, but I don't have time, so if it happens, it happens, and if it doesn't, it doesn't.

MY DH is a more worked up than me about it, and if mine is not replaced and happens to be one of the few that need to be replaced early due to battery issues...well, we'll cross that bridge when we get to it.

Thanks for the advice though, I really appreciate it.

[BobOP]

Hi RDMC

Sorry for your delay in the surgery. I hope things go well on Monday.

I can share my experience with my current baclofen pump. It was implanted by a pain management dr in 2008. In 2009, the pump was relocated by a neuro surgeon. This was due to the pump being too close to the skin.

After the surgery, the pump stopped working. I was told it was due to the former dr. He used a "compound" liquid baclofen versus the liquid baclofen straight from the manufacter. At this time, I also got my current physiatrist. She changed out the liquid baclofen & thinks have been fine.

I still have the same pump since 2008.

Take Care, Bob

[Kimba22]

Hi rdmc,

Sorry to hear your surgery has been postponed until Monday. I'm sure you are more than ready to get this done & over with. I hope that by having to wait, you'll get a new pump after all. Just seems like the right thing to do, especially with your history.

IMO, it was bad medicine to discharge me (or anyone else, for that matter) before I even had a chance to get my bearings again after my first surgery. Never mind if I would have fallen with my balance issues from the MS. And like you said, most doctors have no clue of the additional issues many of us face with MS. Good thing someone could stay with me 24/7 for a week afterwards. I've learned to speak up beforehand, if at all possible. Even with that, I've found lack of communication between the nursing staff and my doctors, and even between some doctors, during some of my hospital stays. So incredibly frustrating when you are basically at their mercy.

And yes, I ended up with a really long hospital stay after my pacemaker surgery, not the pump. The surgery made my MS very unhappy, and all the complications that followed made for a very rough year. Sure was an awful experience, which is why I'm so gun shy of another surgery, no matter how 'simple' it may be.

As far as the wait required after a refill, this is a large practice (10 doctors & 5 PA's), and I was told this is standard practice for all their pump patients. I guess there was an issue before, where a patient went home and medicine had pooled outside their pump. I was taken to a recovery room, where I had to lay on a gurney and wait for the PA to recheck my pump before I could leave.

Seems to me they are bit overzealous there, like when the PA put on one of those sterile, yellow gowns and a face mask before she filled it ... and made me wear a mask, too! When I mentioned that was all new to me, she replied, "Well, it is considered a surgical procedure" (Although, I think I prefer that to the doctor who wanted to cut open my arm to remove my mediport at my bedside ... uh, no, especially with all the traffic that came through that hospital room between my roommate & I!)

My new doctor also thinks I should get the smaller pump, since I'm not a big person. (Remember when my physiatrist sent me back to the neurosurgeon who implanted my pump to begin with, he said the same thing ... as if it was suddenly a new revelation .) Will seem odd at first, but I'm sure I won't miss having such a large lump sticking out there. BobOP, you brought up another concern I have with the larger pump, since there's not much fat under the skin to bury it under.

BlueGiraffe, I haven't gone more than 90 days before my pump has been refilled with new baclofen (regardless of what's still in there), because my doctors have concerns that the medicine begins to loose it's effectiveness after 90 days. I've asked about using the higher concentration so I could go longer between refills, but both my last and current doc told me the same thing. The good news is that my refill schedule shouldn't change by using the higher concentration with the 20 cc pump. But, these are all things I plan to discuss with my doctor before I have the surgery.

Anyways, best wishes with your surgery, Monday, rdmc. I'll be thinking about you.

[rdmc]

Well, here I am, post revision surgery. I'd like to say I'm alive and kicking, but, for now, I'll leave off the kicking part

Surgery was pretty uneventful. Went to the hospital around 5:30 AM, registered, went through all the pre-op deals like blood typing, IV, talked to all kinds of people (the nurse assigned to pre op care, the OR nurse, the neurosurgeon, the Med Tec rep, the anesthesiologist, the charge nurse in pre op, and I think there were others. I sort of liked having to repeat my story over and over, because it took my mind off the upcoming surgery (btw, my BP was superb which for those who know me know how long it took me to hit on a combination of BP meds to keep it normal in stressful situations due to an MS lesion...that was really encouraging.)

The OR was bright, as usual (it always surprises me when I get into the OR) and I thought I heard them playing the sound tract from "Frozen" in the background.

I've had the same anesthesiologist for probably 5 different surgeries, so he remembers me, and he's quite a nice guy, funny too. Then off to slumber land I go.

They weren't sure about where they were going to place the pump before the surgery, so I was kind of "excited" to see where they were going to put it (obviously I live one uneventful life when the placement of my IT pump causes major anticipation.)

Anyhoo...here are the highlights:

1. I was at the hospital at 5:30 AM, Surgery at 7:45, Recovery (no idea how much time because it's always a hazy time for me), but my husband said I showed up back in my room in the day surgery wing around 11:30 and was allowed to leave at 1:30. That was pretty good time IMO.

2. Pump evidently has suture anchors on it in order to keep it in place, all my sutures had broken and that's why it was floating down in my lower abdomen, but catheter and pump were working fine, just out of place.

3. I learned that the Medtronics tech (my regular Med rep wasn't there) comes to surgery with all parts of the pump that might need correcting, or that might be needed in a revision, so the surgeon has on hand all he needs if he has to change out something.

4. After removing my pump from it's "fallen" state, the surgeon cleaned up the area (whatever that means) and moved the pump up high, above my belly button and a little off center to the left. Seems like it will be a good place.

5 I am sorer than I remember being with the other surgeries, but for one reason, I'm not in the hospital and only taking Lortab, and I'm probably moving more than I did in the hospital, post surgery.

6. The incision looks bigger, but can't really tell because
until the bandage (which is stapled on) comes off in 2 weeks. I have a binder I'm wearing, and it is much more comfortable than the binders I've had in the past.

Yet I have 2 gripes, or things that I found extremely troubling through this experience.

One of the "questioners" (I never really did figure out where he fit in the picture)...but he was asking me about my BP and SVT and I told him it had been determined to be part of my MS symptoms due to the medulla lesion. He said something to the point that MS can't do that. I didn't answer him back, figured what was the point.

And last, but certainly not least was the talk about the "recall" of the baclofen pump. Mine wasn't replaced, and that is not what bothers me. What bothers me is the new Med tech came in and I mentioned the recall to him. He proceeded to tell me there wasn't a recall that he was aware of. But said he'd go check on the issue. When he came back, he said it wasn't really a "recall" but a warning, and that the occurrence was in such low numbers that Medtronics wasn't replacing them unless they actually failed. What could I say, not much, in fact he made me think that perhaps I had read the info wrong in the FDA bulletin. So just this evening, I read the notice again, and I am very disappointed by what the Med tech told me...I don't care that they didn't want to replace the pump...but I would have expected him to be informed, forthcoming with the real info. Here's the notice:

http://www.fda.gov/MedicalDevices/Sa.../ucm271492.htm

But as I've said before, and will say again, the pump, for me has been the best decision I've made in my MS history. Every complication I've had, and every surgery has been more than worth the occasional "blip" on my MS journey.

".....And now you know the rest of the story"

[bluegiraffe]

Hi rdmc,

Happy to hear it was uneventful !

And the new home sounds better.
Did they leave the catheter alone and soley move the pump?

Interesting to know the Medtronic rep is there with parts if needed. Good to know. It does sound fast to going home by 1:30 (my favorite part ).

Understand your frustration re: communication on the recall - I first heard of it from you a while back and my doctor confirmed on the phone with his Medtronic rep (during my appt) - that yes re:recall and replaced only if needed.

Anyways happy your done with this and home.

Thanks for the update and info.

BTW - Medtronic had a good conference call re: the pump - with good speaker and Q/A if you didnt know - maybe they have a replay.

[Kimba22]

Hi rdmc,

Thanks for the update and glad to hear you are home!

The OR was bright, as usual (it always surprises me when I get into the OR) and I thought I heard them playing the sound tract from "Frozen" in the background.

Plus they are always cold! Maybe that's why you were hearing the soundtrack to "Frozen?" lol

Pump evidently has suture anchors on it in order to keep it in place, all my sutures had broken and that's why it was floating down in my lower abdomen, but catheter and pump were working fine, just out of place.

If you look at a picture of the pump, there's a part that sticks out where the surgeon threads the sutures through. For whatever reason, the neurosurgeon has mine down toward my pelvis. My last doctor couldn't believe he did this, and got out an actual pump to show me what he was talking about. All the things you learn when you would rather have not have any reason to learn ...

Makes you wonder sometimes how informed some of these people are ... clearly, the word RECALL was used! You probably wished you had access to a computer when he told you that.

I hope you are feeling less sore every day and your pump will stay put in it's new home.