Medtronics Baclofen Pump: Removed

[Guest guest]

Hey Rick,

Have you given thought to or did your doctors mention a theory that once nerves

stop over-firing (over-simplifying as I always do), that they are " trained " to

not over-fire; hence spasticity and/or pain signals can stop or slow down to the

point where pain and/or spasticity will no longer need high doses of meds or any

meds at all? Especially given how high the dose is with a pump vs. the oral

dosage of the same med.

I only ask because when I had the pump implanted for pain - (still have it -

only implanted last April), my doctor mentioned that two patients after having a

pain pump for x amount of time, they kept saying the dosage was too high. He

kept lowering the dosage until they were down to zero. After a bit to make sure

they didn't need the pump, they were removed (and of course these were two

patients at different times with different problems). The pumps were removed

and according to him, they still to that day only needed occasional oral meds

for when they really, really over did it. (And it was only something like

hydrocodone - not big time pain meds).

He cautioned that this does not happen to everyone, he has no idea why these

patients who were in excruciating pain for years before the pump, were able to

wean off the meds in the pump, but did explain the firing of nerves that cause

pain and how theoretically, they could slow down, stay down, hence; no need for

constant pain meds.

They, like you, became very active when they had the pump and last he knew, they

remained very active (one was climbing local mountains). This really made sense

to me - if something precipitates our nervous system to over-fire, making us

feel like we have pain where we shouldn't feel pain (ie: the pain I feel in my

hips and butt - nothing wrong with my hips or butt but the pain is terrible

without the pump). If the medicine you use slows down that firing to the point

where you no longer feel pain, why couldn't these nerves slow down/stop sending

these pain messages (retrained) - normal - to where they were before whatever

happened to make them over-fire (a fall that caused the tether to act up -

surgery in my case - etc.)

Just wondering if you have given thought to this or done any research on it. I

tried to find information on this with hopes that maybe this will eventually

happen with me, but I couldn't find anything. I'm wondering if it's one of

these areas where doctors are happy the patients had this happen, but don't

follow-up.

Shortly after I had the pump and it was started (I have anti-seizure meds in

mine), I began to regain sensation in parts of my lower legs and my feet. My

doctors was quite happy for me, but never reported it to Medtronic or the drug

company. I asked why and he said it wasn't part of the study - it really

bothered me that this wasn't reported or that he didn't show an interest in that

positive effect.

If that happened to me with this, it could possibly help others...I still try to

get my nurse to report it to the study backers and she keeps trying to find a

way to report it to gain interest ... but, I think it'll be one of those

" side-effects " that no one will pick up on. (Plus, since then I've fallen twice

and the sensation is gone again and I have worse problems in my legs than

pre-pump from the fall.)

Congratulations on no longer needing the pump. It's a life-saver when it works,

but there are things about the pump that I could live without - it gets caught

on my seat-belt at times, I have to be very careful about the waist band height

of my pants. They can't be too low or they push the pump up, too high and the

band sits on the pump all day and is very uncomfortable. There are other things

about the pump that can be a pain, but compared to what I lived with before the

pump, these issues are non-issues.

Kathy

Medtronics Baclofen Pump: Removed

Hello All,

This morning at 8 AM my nsg removed my baclofen pump - for good, I

hope. It was implanted December of 2000. I peaked out the dosage at 365

mcg/day @ 2000 ml/l. A variety of factors led to the decrease in dose

and eventual water only as of January 8, 2008. These factors that I

believe contributed to my being able to be weaned off the machine are

being physically active as much as possible, continuous PT, regular

chiropractor visits, regular full body massages, swimming, and adaptive

outdoor sports activities.

For those that do not know of me, I have been on this and a few previous

TSC lists since 1997. I was age 44 in 1998 when my tethered cord was

released. There are lots of minor details but I had adult tethered cord

without SB, caused by an ArterioVenous Malformation that was diagnosed

by MRI and CAT scan in 1996 and removed in 1997. When the pump was

implanted in 2000, my legs were too spastic (stiff) to move, someone had

to move them for me. As I was performing various physical activities, I

found that my spasticity would decrease, I would become very weak and

just drag my legs behind my walker cause I couldn't lift them. So my

physiatrist (see below) would reduce the dose 10-15%, I would get my

strength back for two-three weeks then reduce it some more. At times it

would take maybe six weeks other times the dose had to be increased a

little. I have my whole pump history plotted on MS Excel with a line

chart, kinda neat. In January this year the dose was 15/mcg per day, the

machine wouldn't go any lower so my physiatrist injected salt water in

it. Coincidentally the low-bat alarm went off that day. We decided to

wait at least 90 days to determine if I would have it replaced or

removed. All has gone well, I still have strength, very little

spasticity at times, and only myclonic spasms if I sit in this chair too

long or lay on my back too long.

I am still 1271 messages behind but I will read them and comment when i can.

Happy summer to all,

Rick

A physiatrist is a medical doctor who specializes in physical medicine,

rehabilitation, and pain medicine. These spine specialists focus on the

body's musculoskeletal system, which includes bones, joints, muscles,

ligaments, tendons, and nerves. Physiatrists treat patients of all ages

with diverse problems ranging from simple low back sprains to complex

disorders, such as spinal cord injury

<http://www.spineuniverse.com/displayarticle.php/article1445.html>.

Their comprehensive approach includes treating the entire patient, not

just symptoms.

[Guest guest]

Hi Kathy,

Very interesting concept, I have not heard of it nor discussed it with

my physiatrist. I will ask her at my next followup or maybe send your

email. It does make sense since a pump inputs a very continuous and

steady flow of medication to the affected area whereas oral meds are not

always taken at the same time, have an initial high dose then nothing

until the next dose.The steady dose would/could 'train' the muscles. I

have not taken any oral Baclofen for probably 5 years but I have it in

case I need to.

Thanks for the input, I will let you know what I find out.

Rick

DK Moulton said the following on 4/19/2008 8:34 AM:

> Hey Rick,

>

> Have you given thought to or did your doctors mention a theory that once

nerves stop over-firing (over-simplifying as I always do), that they are

" trained " to not over-fire; hence spasticity and/or pain signals can stop or

slow down to the point where pain and/or spasticity will no longer need high

doses of meds or any meds at all? Especially given how high the dose is with a

pump vs. the oral dosage of the same med.

>

> I only ask because when I had the pump implanted for pain - (still have it -

only implanted last April), my doctor mentioned that two patients after having a

pain pump for x amount of time, they kept saying the dosage was too high. He

kept lowering the dosage until they were down to zero. After a bit to make sure

they didn't need the pump, they were removed (and of course these were two

patients at different times with different problems). The pumps were removed

and according to him, they still to that day only needed occasional oral meds

for when they really, really over did it. (And it was only something like

hydrocodone - not big time pain meds).

>

> He cautioned that this does not happen to everyone, he has no idea why these

patients who were in excruciating pain for years before the pump, were able to

wean off the meds in the pump, but did explain the firing of nerves that cause

pain and how theoretically, they could slow down, stay down, hence; no need for

constant pain meds.

>

> They, like you, became very active when they had the pump and last he knew,

they remained very active (one was climbing local mountains). This really made

sense to me - if something precipitates our nervous system to over-fire, making

us feel like we have pain where we shouldn't feel pain (ie: the pain I feel in

my hips and butt - nothing wrong with my hips or butt but the pain is terrible

without the pump). If the medicine you use slows down that firing to the point

where you no longer feel pain, why couldn't these nerves slow down/stop sending

these pain messages (retrained) - normal - to where they were before whatever

happened to make them over-fire (a fall that caused the tether to act up -

surgery in my case - etc.)

>

> Just wondering if you have given thought to this or done any research on it.

I tried to find information on this with hopes that maybe this will eventually

happen with me, but I couldn't find anything. I'm wondering if it's one of

these areas where doctors are happy the patients had this happen, but don't

follow-up.

>

> Shortly after I had the pump and it was started (I have anti-seizure meds in

mine), I began to regain sensation in parts of my lower legs and my feet. My

doctors was quite happy for me, but never reported it to Medtronic or the drug

company. I asked why and he said it wasn't part of the study - it really

bothered me that this wasn't reported or that he didn't show an interest in that

positive effect.

>

> If that happened to me with this, it could possibly help others...I still try

to get my nurse to report it to the study backers and she keeps trying to find a

way to report it to gain interest ... but, I think it'll be one of those

" side-effects " that no one will pick up on. (Plus, since then I've fallen twice

and the sensation is gone again and I have worse problems in my legs than

pre-pump from the fall.)

>

> Congratulations on no longer needing the pump. It's a life-saver when it

works, but there are things about the pump that I could live without - it gets

caught on my seat-belt at times, I have to be very careful about the waist band

height of my pants. They can't be too low or they push the pump up, too high and

the band sits on the pump all day and is very uncomfortable. There are other

things about the pump that can be a pain, but compared to what I lived with

before the pump, these issues are non-issues.

>

> Kathy

> Medtronics Baclofen Pump: Removed

>

>

> Hello All,

>

> This morning at 8 AM my nsg removed my baclofen pump - for good, I

> hope. It was implanted December of 2000. I peaked out the dosage at 365

> mcg/day @ 2000 ml/l. A variety of factors led to the decrease in dose

> and eventual water only as of January 8, 2008. These factors that I

> believe contributed to my being able to be weaned off the machine are

> being physically active as much as possible, continuous PT, regular

> chiropractor visits, regular full body massages, swimming, and adaptive

> outdoor sports activities.

>

> For those that do not know of me, I have been on this and a few previous

> TSC lists since 1997. I was age 44 in 1998 when my tethered cord was

> released. There are lots of minor details but I had adult tethered cord

> without SB, caused by an ArterioVenous Malformation that was diagnosed

> by MRI and CAT scan in 1996 and removed in 1997. When the pump was

> implanted in 2000, my legs were too spastic (stiff) to move, someone had

> to move them for me. As I was performing various physical activities, I

> found that my spasticity would decrease, I would become very weak and

> just drag my legs behind my walker cause I couldn't lift them. So my

> physiatrist (see below) would reduce the dose 10-15%, I would get my

> strength back for two-three weeks then reduce it some more. At times it

> would take maybe six weeks other times the dose had to be increased a

> little. I have my whole pump history plotted on MS Excel with a line

> chart, kinda neat. In January this year the dose was 15 mcg/day, the

> machine wouldn't go any lower so my physiatrist injected salt water in

> it. Coincidentally the low-bat alarm went off that day. We decided to

> wait at least 90 days to determine if I would have it replaced or

> removed. All has gone well, I still have strength, very little

> spasticity at times, and only myoclonic spasms if I sit in this chair too

> long or lay on my back too long.

>

> I am still 1271 messages behind but I will read them and comment when i can.

>

> Happy summer to all,

> Rick

>

> A physiatrist is a medical doctor who specializes in physical medicine,

> rehabilitation, and pain medicine. These spine specialists focus on the

> body's musculoskeletal system, which includes bones, joints, muscles,

> ligaments, tendons, and nerves. Physiatrists treat patients of all ages

> with diverse problems ranging from simple low back sprains to complex

> disorders, such as spinal cord injury

> <http://www.spineuniverse.com/displayarticle.php/article1445.html>.

> Their comprehensive approach includes treating the entire patient, not

> just symptoms.

>

>