Question for Bob or others re: Drs and Baclofen pump

[rdmc]

My neuro spoke with me last appt. about a Baclofen pump. So I've read on the forums and done some other research and decided to go forward and get the test.

But I found out today that first I have to get a Rx from my neuro to go to a Physiatry practice here in town. They will evaluate my spasticity and give me info on the pump...they will be the practice that adjust the dosage and manages the pump once it's implanted.

However, the actual implant surgery will be done by a neurosurgeon here in town. I'm familiar with this neurosurgeon, he's one of the best in town, but it just seems so complicated as to the process for getting it put in, should the test work.

I hate Dr. visits, that's just me. Don't know what I was expecting, but is this a normal protocol or process for getting a pump...in other words one dr to put it in, another to manage in addition to my regular neuro (seems the physiatrists are the drs that come up when I search on the medtronics website for a provider in my area...and they're the ones who told me I'll need a neurosurgeon, so I guess that's how it's done here.)

Any info would be appreciated.

[BobOP]

Hi RDMC

I wish you the best with your choice. What you are describing is what I have done for the last 18 months.

Last year, I had my Baclofen pump moved . That's when I got a neurosurgeon & a Physiatrist. Previously, my pump was managed fully from implanting to management by a pain management dr.

I am happy because both dr's are in the same building. After the neurosurgeon released me, he said he would see me in 5/6 years when it is time to put in the next pump. Except when he happens to be in his office, when i walk by for a pump refill...LOL

Due to my dosing & pump size ( I have a 40 cc pump), I see my physiatrist every 4 & 1/2 months for my pump refill.

After doing the pump both ways, I think my current situation is the way to go with the pump.

Take Care,

Bob

[kmallory1]

My neurologist is part of a fairly large MS center, so my experience will probably be different from yours.

My neuro did the test dose himself, in the hospital. Then he referred me to a neurosurgeon, who implanted the pump. I did one follow-up with the surgeon.

Management of the pump is done in my neuro's office by a nurse practitioner. She does dosage changes and refills.

I've had one refill, which was pretty painless. Just don't look at the size of that syringe they use!

[rdmc]

Thanks for the info...since it's the only option being offered, I have to go with the flow. I don't think we have any large MS centers in this area, the closest MS specialist to me is about an hour away.

Bob, glad to hear you've had a good experience doing it this way.

Positive part is the company that will manage the pump is really close to my house, so a 10 minute drive will get me there!

[hunterd]

hey rdmc,
with so many ms ppl relocating to fla, check around. there should be an ms center somewhere. try www.floridams.org for starters, they tell of several centers around the state.
my pump is filled and "fixed" in my neuro`s office too. good luck.

dave

[Kimba22]

Hi RDMC,

My pump was implanted by a neurosurgeon at a university hospital with an MS Clinic. The MS Specialist sent me for my test dose with a physiatrist, who did the refills and adjustments (I have the larger pump) every 4 months.

I have had some problems due to the placement and size of the pump (because of my smaller frame and it being close to my hip bone). The implanting neuroseuron was new, young, and egotistical ... until I returned at my physiatrist's request with x-rays in tow.

Although he offered to move (to under my ribcage ... I don't think so!), replace with the smaller pump, or just remove the unit, I decided to look another doctor. My insurance changed a few months later, and I was forced to change hospitals all together.

Oppposite of Bob, I now have a pain management doctor who oversees my pump. I do like him (besides 30+ years of experience), and he has offered to move/ replace (w/ smaller unit) my pump as well. I'm not anxious about another surgery, so will only have that done if/ when I absolutely have to.

He does request I return for refills more frequently than I must ... every 90 days. The plus is his office is 5 minues away vs. an hour, the negative is I'm not followed and evaluated by a physiatrist.

Although my current dosing seems fine, I don't think it is the best continuity of care. I believe a physiatrist should be evaluating your spasticity, but this is the route I must go for now with my insurance.

My spasticity is now under control, and it is so nice not need to take oral medication 4 times a day. Seems like there is always a need for another new dr./ specialist with MS, but 24/7 sufficient dosing has been worth it!

Best Wishes,

Kim

[bluegiraffe]

Are most of you happy with the results of the pump ? Has it improved your mobility ? Or more beneficial for comfort from spasticity ?

[rdmc]

Hi RDMC,

My pump was implanted by a neurosurgeon at a university hospital with an MS Clinic. The MS Specialist sent me for my test dose with a physiatrist, who did the refills and adjustments (I have the larger pump) every 4 months.

I have had some problems due to the placement and size of the pump (because of my smaller frame and it being close to my hip bone). The implanting neuroseuron was new, young, and egotistical ... until I returned at my physiatrist's request with x-rays in tow.

Although he offered to move (to under my ribcage ... I don't think so!), replace with the smaller pump, or just remove the unit, I decided to look another doctor. My insurance changed a few months later, and I was forced to change hospitals all together.

Oppposite of Bob, I now have a pain management doctor who oversees my pump. I do like him (besides 30+ years of experience), and he has offered to move/ replace (w/ smaller unit) my pump as well. I'm not anxious about another surgery, so will only have that done if/ when I absolutely have to.

He does request I return for refills more frequently than I must ... every 90 days. The plus is his office is 5 minues away vs. an hour, the negative is I'm not followed and evaluated by a physiatrist.

Although my current dosing seems fine, I don't think it is the best continuity of care. I believe a physiatrist should be evaluating your spasticity, but this is the route I must go for now with my insurance.

My spasticity is now under control, and it is so nice not need to take oral medication 4 times a day. Seems like there is always a need for another new dr./ specialist with MS, but 24/7 sufficient dosing has been worth it!

Best Wishes,

Kim

Yeah, there's definitely a "process" here and you have to go to office "x" before office "y"...and only in that order. My neuro had sent a referral to the neurosurgeon, but the neurosurgeon informed me I have to see the physiatrist first. So I had them fax the same Rx to the physiatrist, and I have an appt. next week with them. I don't know who arranges for the test, guess I'll find that out next week.

Thanks for all the replies

[rdmc]

So I saw the physiatrist and have the test set up (that was a big deal...evidently lots of folks involved and everyone has to coordinate their schedule.)

A couple of questions I forgot to ask the physiatrist and maybe Bob or someone else has the answers.

First off, I looked up the dimensions of the pump, it's 3.5 inches in diameter (that seems huge to me.) So if it takes up a good portion of one side of your abdomen, can you use that side for DMD injections? I use Beta and use my belly a lot, but got to thinking that if there's a pump on one side, I wonder if you can inject on that side.

Other question, how far does this thing "stick out?" Hate to sound vain, but it's got me a little freaked out, LOL! I'm not skin and bones, by any stretch of the imagination, and have plenty of middle aged spread in the abdomen already. Maybe that'll help camoflage it

And lastly, if you look up the pronunciation of physiatrist it's pronounced with a long e, phy-se-a-trist, instead of with a long i, phy-si-a-trist, that seems weird to me, but would like to know the common pronunciation of the specialty.

Thanks for any info.

[BobOP]

Hi RDMC

I have had no problems doing my Copaxone injections on my right side of my stomach where my pump is located.

I can say that my pump doesn't really stick out at all. I know it is there.

As for how you pronounce physiatrist, I say Dr. Abel..LOL

Take Care, Bob

[Kimba22]

Hi RDMC,

The pump comes in two sizes, there is a pediatric pump that can be used in children as young as 4 (with cerebal palsy). The neurosurgeon who implanted mine neglected to give me the option. It does need to be refilled more often, approximately every 6 weeks.

Weigh your decision based on your size and how often you can go to have it refilled. I am not short, but my body frame and weight may have warranted the smaller pump. It didn't help that it was placed too close to my hip (it sometimes rubs on the bone and hurts!), but that was due more to his inexperience in placing it.

Mine does stick out about an inch, but because there was not much fat to bury it in. It isn't noticeable under clothes, but I prefer to wear elastic waists when I can because they just fit better (stretch that extra inch where the unit is). You won't catch me in a bikini (now there's a scary thought) with it, but you wouldn't have anyway!

I don't give my shot there, no fat between the pump and my skin. But, for me, the stomach is my least favorite spot.

Joking, vanity, and a tad bit of complaining (about the neurosurgeon) set aside, the pump has significantly reduced my spasticity and the pain that went along with it. I hope it gives you the same relief.

Best wishes,

Kim

[rdmc]

Thanks Kim and Bob for the info.

[BobOP]

Hi

I forgot to say which size Baclofen pump I have...It is the 40cc pump, which is close to the same size as the older version pump.

There is also the 20 cc pump. It is the same circumference but only 1'3rd as deep as the 40cc pump.

As far as pump refills, the longest you can go is 6 months due to the shelf life of the liquid baclofen. On my current dose, I get my pump refilled every 4 & 1/2 months.

Take Care, Bob

[nappy]

It has been worth it.

I have had my pump for about a year and a half now. In the beginning, all the appointments and tests and different minds coming together was a bit much.

But now that all the hoops have been jumped through, it is calmer and certainly worth it.

I opted for the larger pump and only need to get it refilled every six months- I also had the higher concentrate put in the last time. I could go longer than six months but it would lose its potency.

I still keep oral baclofen with me if I have too much break through spasticity but that is triggered usually by doing too much so I can't complain too much about it!

I have the pump programmed to a higher dosage at night and that has helped my sleep tremendously.

At first there were many adjustments and appointments, but that has slowed down. My only concern now is that I am short waisted and have to remember to "tuck the pump in" when I bend in certain ways.

I don't inject on the side with the pump and have a noticed a little of the fat pad on top of the pump has thinned, but I have enough fat to go around so if a bit leaves I am happy with that too!


Good Luck

[rdmc]

Thanks for all the info.

I go on Thursday. They called today to move up the time, they want me to report to the physical therapy floor at the hospital at 7:30 AM for the initial assessment. No biggie, I'm an early riser.

But two sort of weird things. The physiatrist's office had originally told me to skip my morning Baclofen pill, but today they told me the dr wanted me to go ahead and take it.

And they want to videotape the PT evaluation, and subsequent evals after the Baclofen shot and said I'd have to sign a release.

Do they usually videotape these types of evaluations?