5 replies to this topic

[Mike Herman]

Hi,

I'll be seeing a pain management doctor 2/1 in regards to a baclofen pump. My neuro says that getting a baclofen pump is the best chance I have of staying able to walk, the little that I do, I already use a wheel chair most of the time.

My biggest question, concern, for anyone that may have one is will I feel the pump and will it bother me?

I'm rather on the slim side. 5' 11", but only 155. I stil try to do a lot of streching and sit ups. I have a bad back, all the sitting I do, so my chiropracter encourages me to do sit ups and back strengthening exercises as much as possible. I was a nationally ranked triathlete 15 years ago, and I love working out, except that now days my Primary Lateral Sclerosis (a neurological disease), my spasicity and mobility don't allow me too. But I would if I could.

I assume that my mobility and walking may very well improve with the pump and if so I'd like to be able to start working out to some extent, but will I be limited in working out, weigts, stretching, stomach and back exercises?

I know of the major problems, I think, including the risk for catheter displacement/breakage/kinking, pump failure, overdose treatment and management, and catheter induced infection, which appears like meningitis.

And I will definitly go over all this with the Pain Management doctor I'll be seeing.

Also I've been told that it takes weeks, maybe up to 3 months, to get the dosage correct, turning it up or down. Who does that tuning, me or the doctor? And how do they decide if it needs tuning?

I also had a nurse tell me that the pump can be set with a number of different releases of medecine throughout each day so that you could not be get very much at night, then have it automatically increase in the mornings and the turn itself up or down during the day depending on your schedule.
Is this true?

Thanks for your help,

Mike

Edited by Mike Herman, 23 January 2007 - 09:48 PM.

[DAWN]

Hi Mike,

Welcome to the Pump Forum!!! So many questions.......so few answers. It is hard to say how each individual will feel and react to their pump but I'll try to explain. It's been almost a year since I had my pump put in and I still have to get my dose increased. I'm very sensitive to the baclofen so have had to go up slowly. Was only getting increases of 5mcg at a time if I was lucky. Once Doc only gave me 2mcg. Last increase was actually 12mcg 2 weeks ago and I intend to get 15mcg increase any day. You DO NOT do the increasing yourself, although I wish we could. It is done at your docs office by the doc or someone who is familiar with the pump. As to whether you need an increase or not is still a puzzle to me. I KNOW when I need my pump increased but I was told right from the very beginning that some people don't know that they are getting tighter and in turn need the baclofen flow increased. I have always just went to doctor when I KNOW that I am physically in need of an increase. I say physically because I have had some trouble with the baclofen messing with my head too. TBI in '69, don't know if this is why I have bouts of lightheadedness, dizziness, extremely tired for a few days or not, but a few times I've had to hold off on increases until my "brain catches up with my body" as the doc says.

As for whether or not you can see the pump.........yes, you can. The thinner you are, the more likely you'll see it. I've lost 12 pounds and I can see and feel the whole pump. It's not too weird once you get used to it being inside of you especially since the advantages of it way outweigh the looks. I'm still afraid to get on stomach for fear of disconnecting the thing but I think that is just my deal...........one of my fears. Don't know how easy they actually disconnect. If your pump is placed in an area where you won't hit it easily, sit ups and such should still be easy and okay, only my opinion though.

Take care and good luck with doctor appt.

Dawn

[Mike Herman]

 DAWN, on Jan 23 2007, 03:56 PM, said:

don't know if this is why I have bouts of lightheadedness, dizziness, extremely tired for a few days or not, but a few times I've had to hold off on increases until my "brain catches up with my body" as the doc says.

Hi Dawn,

I had thought that one of the big pluses of the pump was that ORAL baclofen caused side effects, exactley what you mentioned, in fact that is why I don't take enough of it orally. But you still feel those same effects with the pump?

By the way, with all the trips to the neuro to increase the dose or refill it, etc., how does it get handled with insurance? I have my medicare assigned to an HMO, PacifiCare, and knowing how they work I don't imagine this will be an easy thing. Does the doctor handle all the insurance stuff or do you have to get involved too?

Thanks,

Mike

Editted 1/24 I take Dawn, via this and your other posts, that you are very, very happy that you had the pump put in and are walking and moving much better now. My biggest question/concern
is how much will the pump affect/interfere with my life. How do you feel?

By the way I am 42 1/2 and have had my neuromusclar disease for 11 + years now.

Although my muscles are pretty tight, I'm spastic, my balance and coordination are screwed up and I am sitting or in a wheelchair a lot, I have a somewhat blessed life. Although I'm divorced and live alone now, my 11 year old son stays overnight with me 2-3 nights a week, I drive him to school and do as much as I can with him (too much xbox and netflix), but I also do his weblows stuff, go to all his soccer and baseball games and most practices, fortunately I have a great light little scooter easily goes in my car and goes on grass. I'm just worried that with all the stuff of getting the pump, PT, increases, decreases, refills, doctor appts, etc., it may help my muscles and walking but will slow me down in other ways.

And I just read that the battery life is only 4-6 years and the entire unit will need to be replaced.

So I'll need to go through the entire surgery, implantation and adjustments every 4-6 years?

Edited by Mike Herman, 25 January 2007 - 07:27 PM.

[DAWN]

 Mike Herman, on Jan 24 2007, 12:27 AM, said:

 DAWN, on Jan 23 2007, 03:56 PM, said:

don't know if this is why I have bouts of lightheadedness, dizziness, extremely tired for a few days or not, but a few times I've had to hold off on increases until my "brain catches up with my body" as the doc says.

Hi Dawn,

I had thought that one of the big pluses of the pump was that ORAL baclofen caused side effects, exactley what you mentioned, in fact that is why I don't take enough of it orally. But you still feel those same effects with the pump?

By the way, with all the trips to the neuro to increase the dose or refill it, etc., how does it get handled with insurance? I have my medicare assigned to an HMO, PacifiCare, and knowing how they work I don't imagine this will be an easy thing. Does the doctor handle all the insurance stuff or do you have to get involved too?



Thanks,

Mike

Editted 1/24 I take Dawn, via this and your other posts, that you are very, very happy that you had the pump put in and are walking and moving much better now. My biggest question/concern
is how much will the pump affect/interfere with my life. How do you feel?

By the way I am 42 1/2 and have had my neuromusclar disease for 11 + years now.

Although my muscles are pretty tight, I'm spastic, my balance and coordination are screwed up and I am sitting or in a wheelchair a lot, I have a somewhat blessed life. Although I'm divorced and live alone now, my 11 year old son stays overnight with me 2-3 nights a week, I drive him to school and do as much as I can with him (too much xbox and netflix), but I also do his weblows stuff, go to all his soccer and baseball games and most practices, fortunately I have a great light little scooter easily goes in my car and goes on grass. I'm just worried that with all the stuff of getting the pump, PT, increases, decreases, refills, doctor appts, etc., it may help my muscles and walking but will slow me down in other ways.

And I just read that the battery life is only 4-6 years and the entire unit will need to be replaced.

So I'll need to go through the entire surgery, implantation and adjustments every 4-6 years?

Hey Mike,

Stinks, doesn't it???? I am not happy with my pump right now today. I did get the 15 mcg increase 4 days ago and I feel horrible. I don't know why I get all these side effects, because, yes, "they" do claim that the pump does NOT cause side effects the way the orals do, but I just finished reading an article on line about the side effects of the pump. I couldn't believe what I was reading, it was EXACTLY the way I had just described how I was feeling. I have told doc and nurses about these "side effects" that I get, but they just kind of pooh-pooh it away. I knew it wasn't all in my head!!! I just finished looking up CSF Leak also because my head is killing me.......these headaches that I get when I get my pump increased are just horrible, they are just like the spinal headache I got after my pump trial. I don't want to sway you one way or the other, Mike, because when my head's on right after all these side effects go away, yes, I am happy that I got the pump put in. With this last increase and pt the following day, I was able to move around easier than I have in a long time. I don't know what state you're in, but here in MN all the paperwork for Medicare, billing, etc. is handled by my Docs office anyway. Yes, the pump does need to be replaced about 6 years, as I've been told. You won't have to go thru the adj. period again though because you will have reached your "optimum" long before the 6 years are up and the doc will just set your pump at the dose you were getting in your old pump.

Once you get going with your pump, therapy and increases play a role together. The looser you are via pump, the easier the stetches, the better stretched your muscles are, the sooner you will know when you no longer need more baclofen flow. These appts. can easily coincide if doc and pt are near each other. Refills vary with each person too. I am on a schedue of getting refilled every 3 months right now. With each increase, depending on how high I go up, the amount of days between refills decreases some, but not much, a few days or so. A refill every 3 months isn't bad either. Prior to getting the pump, it seems like you'll practically be living at the docs office but you're really not there as much as it sounds like you'll be.

Any more questions, just post. Let me know how it goes after dr. appt.

Good Luck,

Dawn

[Mike Herman]

Had my test this past Friday and it went very well. Spent the night in the hospital for observation Friday night.

Felt fine Sat., but lightheaded, dizzy, verigtogo even, headaches, yesterday and today.

Could they be side effects, will they go away????

If I lay down I am fine, but sit or stand up for a few minutes and I feel terrible.

Mike

[gallahan42]

Dear Mike:
What ever you do, don't get the pump in the front, get in the lower back. I had my first pump in the front and had to have removed about two months later due to infection. If you wash dishes or stomach area is constantly getting wet, then please for your own sake, get in back. When I had my first pump put in, it was much larger then the one in the back. Have had this pump for approximately two years with no problem. You get used to the slight bulge, much better then the first.

 Mike Herman, on Jan 23 2007, 03:21 PM, said:

Hi,

I'll be seeing a pain management doctor 2/1 in regards to a baclofen pump. My neuro says that getting a baclofen pump is the best chance I have of staying able to walk, the little that I do, I already use a wheel chair most of the time.

My biggest question, concern, for anyone that may have one is will I feel the pump and will it bother me?

I'm rather on the slim side. 5' 11", but only 155. I stil try to do a lot of streching and sit ups. I have a bad back, all the sitting I do, so my chiropracter encourages me to do sit ups and back strengthening exercises as much as possible. I was a nationally ranked triathlete 15 years ago, and I love working out, except that now days my Primary Lateral Sclerosis (a neurological disease), my spasicity and mobility don't allow me too. But I would if I could.

I assume that my mobility and walking may very well improve with the pump and if so I'd like to be able to start working out to some extent, but will I be limited in working out, weigts, stretching, stomach and back exercises?

I know of the major problems, I think, including the risk for catheter displacement/breakage/kinking, pump failure, overdose treatment and management, and catheter induced infection, which appears like meningitis.

And I will definitly go over all this with the Pain Management doctor I'll be seeing.

Also I've been told that it takes weeks, maybe up to 3 months, to get the dosage correct, turning it up or down. Who does that tuning, me or the doctor? And how do they decide if it needs tuning?

I also had a nurse tell me that the pump can be set with a number of different releases of medecine throughout each day so that you could not be get very much at night, then have it automatically increase in the mornings and the turn itself up or down during the day depending on your schedule.
Is this true?

Thanks for your help,

Mike