Hey Blue Giraffee, I have a time frame for the replacement

[rdmc]

So they said I had till September to get the pump refilled, but they'd like it by August and not push the envelope so try to get it done sooner.

I had my appt. with the neurosurgeon and he said they'd get me on the schedule now, however, my kiddos and grandson are coming for a visit in May and around the 4th of July. My grandson is 1 and it would be so hard to handle stitches and a little guy who likes to crawl into your lap to get books read, etc...so we're waiting till 2nd half of July. They didn't have the surgical schedule for that this far ahead, but once it comes out for July, his surgery scheduler will put me down. I'm glad because the thought of recovery and visitors won't be an issue.

Now for some "stinky" news he brought up which I never would have thought about...ignorance is
bliss.

He mentioned that with replacement they just go in, replace the pump (they're going to have to reposition mine because of this crazy scoliosis brace I wear that right now seems to push the pump the wrong way and can cause the muscles around the pump to hurt.

So he informed me that they'd hope it'd be one belly incision deal, and that they do usually keep you over one night when they're replacing the pump. When they repositioned mine, last time, it was day surgery, but that was because we were using the same pump. I guess they want to make sure the thing is working okay.

Now for the depressing part. I have a pretty large dose I'm on 250 mcg...and he said that may be the dose I need. But to remember that even though I'm enjoyng no spasticity in my legs with the pump and doing fine with that dosage, there still may be a catheter issue, in which case you get the double whammy surgery...belly incision and back incision. Sometimes he said there's a leak in the catheter, and enough is being delivered through the catheter to keep spasticity in check, the catheter can still be leaking some of the baclofen, and so they have to do the back surgery too.
He said it was an unusual presentation, but more common that one would think.

So I'll put on my ruby slippers and tap them together three times before the surgery and say
"there's only going to be one incision...there's only going to one incision."

Either way, been there done that. I've had the double incision twice, once when it was put in and later during a revision. And I've had the single incision once during a revision...so either way,
"it is well with my soul." I'm not going to fret about something I have no control over, it is what it
is, or it will be what it will be.

Did you hear yet about a date?

[bluegiraffe]

Hi rdmc,

Glad you let me know, as I am trying to get my replacement surgery planned out too.

That does stink and fingers crossed you only need the pump replaced!

Like you said you don't have control, but wouldn't they be able to check for a leak prior to surgery? Or maybe a very small leak that can't be detected?

Was your September time set by the date the printout lists as your ERI date?

I've read and called Medtronic who confirmed we have 90 days after the ERI date listed, but it does seem like many doctors (mine included) want to do the surgery sooner. Like my sister said they probably want to make sure your car gas tank is filled up before running out gasoline!

I want to push it out as far as I can, but not sure I'll have the option. My next refill appt is next month so I'll get more info soon. Last refill my physiatrist said the surgery needed to be sooner then even the ERI date

I called my neurosurgeon's office to make sure he could do my replacement and the scheduler told me yes, and to call back and schedule an appointment within a month or so before I need to schedule.

I am at 110mcgs and because I get refills with the higher concentration baclofen, I can much longer than 6 months before needing a refill. I am trying to even avoid going into surgery with a full pump, but not sure I can pull that off.

It s great you are at 250mcgs and still ambulatory, I'm always surprised when people have higher doses and are doing well on it. For me any increase causes me upper body weakness that I can't afford. Since my femur surgery 6 months ago my spasticity has increased some at night, last refill we upped it 10%, which is still minor. I likely do need the dosage upped some but have been reluctant to do so. I plan to talk more regarding the position of the catheter with my neurosurgeon to see if that's the reason. But like you, would of course not have to deal with the catheter part too.

Is your neurosurgeon the same that did your previous surgeries?

I never look forward to the hospital, but do anticipate being there for a couple of nights and maybe rehab again after, due to not walking. Time will tell, like you said not much control over it. But still sucks!

Enjoy your family time, I bet your time with your grandson is fun, and good you could work around it!

Not sure how, but am happy to exchange contact info to talk sometime.

[rdmc]

Well you've got all the questions I had, spinning around in your head.

My physiatrist said that I had 8 months (she was looking at the readout) but I don't think she meant 8 months till the battery was absolutely gone, but to be on the safe side. So I thought that would be October. However when I called the other day, they said no later than September, and preferably sooner.

I'm beginning to think the readout must not be extremely reliable...and they know it, LOL. I know
from when my catheter came out it turns into an emergency situation and they have to hospitalize you and give you ativan and oral baclofen to prevent the extreme withdrawal that evidently can become a fatality. So I guess they're trying to avoid that.

Yep same neurosurgeon. I think I'm his favorite patient...NOT. But I was a bit of a puzzle for him when the catheter snaked into my abdomen and made my belly look like I had swallowed a watermelon, I asked him how often it happened, and he said it had never happened to him (at least not in that order.) And then I had him operate again when the pump went on walkabout.

I knew this, but I hadn't mentioned it to him, but when he examined me this time, he realized my pump has migrated some, and he did notice it, I wondered if he would. It's still living in South Dakota but sometimes likes to take a little jaunt over to Montana, and sometimes as far as Washington and Oregon. I think it's because of the scoliosis and I'm sort of bent sideways, or the way the scoliosis brace puts pressure on the pump

So all in all, I've had 3 surgeries from him, and if I wasn't
due for a replacement would probably be looking at another revision because of the present migration. He's said after a surgery that he's attached it well to the fascia, and I've told him on more than one occasion, you just can't trust my fascia My prolapse dr. figured that after a few revisions, LOL. Life with MS is just one big learning experience. And then the nurses or docs are
surprised we are as informed as we are, well we have to be informed, it goes with the territory.

I've mentioned it before, but as I told one nurse if I wasn't "informed" I'd be in the ER every night telling them I have all the symptoms of a stroke.

Anyway, back to the surgery. The placement of the catheter is an interesting thing to explore due
to your upper body weakness. But like you said, changing it, means back surgery on top of the
implantation. I remembered you went to rehab at the hospital floor, that seems like a sensible thing to do. My hubby usually takes some time off to "wait" on me after surgery, but if I have it in
July, I think I might "hire" one of my grand nieces to come help me during the day, and deal with the dog, etc. I have an "I've fallen and I can't get up button" that has two way communication, but
I can remember getting in and out of bed with those belly incisions, and I'll probably need help that a "button" can't offer Somebody, I think it's Bob, bounces back from these replacements very quickly...I think I do okay, but it's not an easy go...what surgery is, even if we were able bodied.
I think I'm going to rent one of those bedside tables this time because I usually try to work as soon as possible after surgery (all computer related) and I think a hospital table that sits over the bed would do the trick.

We'll have to figure out a way to exchange emails. Maybe I'll set up a gmail just for the purpose of exchanging our info (I'll post the gmail on my private info) , then I can delete the gmail account after we have our info exchanged. Do you think that will work?

[hunterd]

I was reading through both of your posts (as I often do if it concerns a baclofen pump).. I was just amazed that you both are on such a low dosage (I get 450mcg//day) but then again I do not know what concentration you are on. I am on the second strongest that they use (At the infusion center where they fill mine) at present time. I get my refill about every four months.

[rdmc]

I was reading through both of your posts (as I often do if it concerns a baclofen pump).. I was just amazed that you both are on such a low dosage (I get 450mcg//day) but then again I do not know what concentration you are on. I am on the second strongest that they use (At the infusion center where they fill mine) at present time. I get my refill about every four months.

Hi Hunterd,

Yep your 450 mcg sure dwarfs BG and my levels. BG isn't ambulatory, I am. I do have the higher concentration (what level of the higher concentration, I don't have a clue.) I was having to go every 5 or 6 weeks, and now it's closer to 5 months for refills.

One of the nurses at the physiatrist's office has a daughter who has CP and so she's had the pump for many years (I believe she's probably almost 20.) She told me that one time they could not get relief from the baclofen and her spasms were increasing. They had bumped up the level to over 900 mcg. Then they did a flow study and did find a leak, so she was able to work her way back down to the 400's.

When I first had the pump, I was asking about levels (I started at 50 and it was onward and upward from there ) However, the last year or two we've been having to up it more to tone
down the spasticity. I have an easy self test. If I can't lift my foot off the ground, or lift my
leg off the bed while lying flat, then it's time to "bump the pump."

But what the Medtronics rep told me is they can keep upping the pump, but at some point
I will lose mobility because the muscles loosen so much they won't support me. I know
it's a fine balance to walk, put up with some spasticity in order to maintain mobility, or make the
spasticity go away and then lose mobility. I know others on the board that have and are struggling
with that. Plus with BG, they up hers and she tends to get upper body and i think respiratory weakness. (correct me if I got that wrong BG) We wonder if that's cather placement. My cath is at T9. Somebody at the board has their placement very high and I wondered about respiration with
it placed at such a high level. I know Cerebral Palsy patients have theirs placed higher than the
normal MS placement.

But whatever the hassles, I'll still should it from the rooftop, this pump was and is the best decision I've made in my MS journey. If I ever have to have it removed, I'll have to deal with it (my neurosurgeon's PA told me she's seen grown men cry when they realized they had to have theirs out for a period of time due to infection. When I had that post surgical infection, fortunately it stayed on the skin and didn't make it lower into the tissue to infect the pump.)

Well sorry for the length of the post...this ends my opus

[bluegiraffe]

Hi rdmc,
So when your physiatrist said September, she was referring to the ERI month on the print out?

I don't want to push the envelope either and wait too long but if Medtronic is saying we have three months after the ERI date and it will beep prior to the three month extended time we have; I'd rather not do it too early.

I'm surprised you will likely getting a replacement sooner than I may and you got your initial pump after I did, but maybe that's due to the fact your doses is higher.

The upper body weakness I have felt is in my core and arms due to the muscle relaxer of baclofen, no respiratory issues. And the weakness is likely exemplified due to my lack of mobility.

I need to check which concentration I'm on but due to having the smaller size pump, my physiatrist put me on a higher concentration to eliminate frequent refills. Currently I can go close to year without needing more baclofen but don't wait that long of course.

Hi hunterd,
I too am always surprised when people have high dosages whether they are mobile or not. Because it is a muscle relaxer I can't imagine how high dosages don't affect people poorly.

But we are all different in our condition and size and maybe that plays a role in how each of us is affected.

[rdmc]

One last thought about pushing the date forward. I have one of the recalled pump, I think you do too. I'm going to have to look up and see what the issue was with the recalled pump, but I think it had to do with shorter battery life or abrupt battery failure. That might be a reason to push the date forward. I'll have to research again because I really don't remember what the exact issue was, but I was not too happy when I had those two revision surgeries and even though my pump was recalled they chose to use the same pump instead of swapping it out for a new one. They had said the chance of failure was remote, and I guess since I've made it this far into the battery life, they were right.

[bobtheisen]

Hi Blue and RDMC

I hope both of your pump replacements go well.
My dr changes out the pump after you reach the 6th year on the battery.

The last time I had my pump replaced was in July 2014. I used the same neuro surgeon, who had previously moved my pump. It had to be moved because the prior pain management dr had placed the pump to close to the skin.

When he put in the new pump he really buried it due to the previous pump flopping out. It just makes a pump refill really fun.
I almost forgot, I have lost 40 pounds over the last year. I had my pump refilled last week. You would think losing weight would be a good thing. Not so much for a pump refill. I told my physiatrist that I will tell my family dr , that she said I need to gain weight...LOL

Before my latest implant, the neurosurgeon said he wanted to change my catheter. We did x-rays and a fleuroscope / dye test and everything was fine. I still have the same catheter since 1999.

I am on 2 doses...117 mikagrams from 7am till 11pm and 119 mikagrams from 11 pm till 7 am. The concentration is 500. I get my pump refilled every 4 and a half months. I have a 40 cc pump.

I hope everything goes well for both of you

Take Care, Bob

[rdmc]

Bob, Thanks for the input.

Wow, 40 lbs. I had heard that weight loss can cause a problem with the pump.

Question for you, does the 2 micrograms in the dosage make that big of a difference.

you said one dose was 117 and one was 119...that just seems so small a titration difference.

As far as the pump refills...my seems to want to move around, and it's not real close to the
surface. I know the physiatrist feel bad when they have to use more than one stick to get
into the port. I'm amazed that it only takes a couple sticks to get it (my dr. has about 80 percent
on the first try. She just finds her way with her fingers, locates the "spot" and poke it in.
Being able to do that by just "feeling" is a real skill (I've heard some drs use a template, but
all the physiatrist in my practice just go by feel.

[bobtheisen]

Hi RDMC

The 2 mikagrams extra at night does help me sleep. My pump dose has been set like that for over 4 years. I also take a 20 mg oral baclofen at bed time. This helps me unwind after work and hopefully get to sleep by 2 am. I get home from work at 12 midnight.

My physiatrist also does the refills by feel. She is very good. However, she has labeled me the patient, who's pump refill is the hardest for her. Another milestone!!

FYI: I am having lunch with our Medtronic rep next Thursday.

Take Care, Bob

[bluegiraffe]

Hi,

Good to hear the little extra mcgs make a difference at night for you. I think I need to go that route as well as my spasms do increase at bedtime and the oral baclofen does not seem to help.

I am at 110 mcgs, get refills with the 2000 concentration and have the 20 cc size pump. I can go way beyond six months before needing a refill but go sooner.

My physiatrist does the refills by feel too and he is really good at it
I often stay seated my wheelchair now when he does the refill but I think it's much easier for him to find the spot if I am laying down.

I'm still trying to plan my replacement surgery, although I know it needs to be planned during the 6th year I'd like to push it out as far as I can without risk. This will likely get decided by my doctor.

Bob, maybe when you have your lunch later this week you can ask if there is a rule of thumb that differs from Medtronic documentation stating the ERI date is the indicator that you have three months after for the replacement.

Thanks.

[rdmc]

Hey BG, I did what I said I would do.

Look in my profile, send me an email to that email, then I'll have yours, and I'll reply with my real one. My IT guy (DH) said that will work, going through a third email, we don't expose either of us to spam, etc. (Sorry for the complicated name...who'd have know how many MS names are taken)
I'll go add it now

[hunterd]

I have the 40 cc pump, I go in tomorrow May 4 for a refill so I will find out all of the details for you all.

[hunterd]

I am scheduled to have my pump replaced in 20 months. I also found out that I am at the highest concentration level available. I am getting 449.9 mcg daily, and it is one continuous dosage amount. I forgot to find out where my catheter is placed.
I am not mobile, I weigh 192 pounds. When I first got the pump I lost all mobility. I knew that there was a very high percentage chance that this would indeed happen. The ability to be flexible FAR outweighs the mobility for me. I felt that this was very rapidly happening anyway and I was only losing a couple years at best of very difficult ambulation.

[bobtheisen]

Hi All

I had lunch this week with my Medtronic rep.

RDMC, our rep said Hi and said to give her a call, when you get a chance.

I also asked about BG's question that the pump could go 3 months past the battery date. She said that would not be a good idea. Once you are past the battery life date, she said you wouldn't be able to tell when the battery will stop working.

Take Care, Bob