RE: Help--Pump experiences needed

[Guest guest]

I would do it again in a heart beat. I have had no problems after getting

rid of the spinal headache. The pump has kept me walking - I truly believe

I would have been in a chair in 2000 without the surgery. It does nothing

to help weakness, in fact it can increase it. I want to go up on the med

but find I can't keep going with my rubbery legs. I am attaching an

article I wrote about my experience for the San ALS newsletter. Lavon

At 01:52 AM 05/21/2002 +0000, you wrote:

>Hi everyone!

>

>I saw my neurologist last Tuesday. He suggested that inquire of my

>other (treating) neurologist about getting a Baclofen pump.

[Guest guest]

Mark Weber, For me the pump has been a miracle, God bless those who

invented it. I know it doesn't work for everyone and it does have its

limits. It has helped with spasticity which in turn helps with pain,

mobility and speech. I walk very little now but I wouldn't be able to

walk or stand at all without the pump. I bath, dress, get out of bed,

iron, do laundry, cook, dishes etc. (all very slowly) but I know with out

the pump this would all be impossible to do by myself. When I was on the

oral baclofen all I wanted to do was sleep and my cognitive abilities

were impaired. My liver function also was also impaired by the oral

baclofen.

Now for the bad part. I CAN NOT SAY THIS ENOUGH AND I KNOW JENNIFER

THOMPSON HAS ALSO SAID THIS--THE MOST IMPORTANT THING TO DO IS MAKE SURE

YOUR DOCTOR AND HOSPITAL ARE COMPETENT !!!!!!!!!!!!!

I was not given any help after the surgery, I was on my own and when I

asked for help no one would help me. I was sent to Oregon Heath Sciences

Hospital for the surgery. I do think I would have been better served if

they would have sent me to Dachau! I had baclofen withdrawals and spinal

head aches and the catheter came out, so I had to go in for another

surgery. I had the first surgery in December 2000 and it took them until

February of 2001 to listen to me and do the second surgery. The pump

worked this time but the care was worse. Please believe me and don't make

the same mistake I did. Talk to your Dr. first about spinal head aches,

pain management and complications that might arise and what they well do

for them ahead of time. Have an advocate and make sure they go with you

and stay with you at all times!

I was told that if weakness is your primary symptom the pump will not

help. My main problem is spasticity

Take care, B. Oregon

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Mark Weber, For me the pump has been a miracle, God bless those who

invented it. I know it doesn't work for everyone and it does have its

limits. It has helped with spasticity which in turn helps with pain,

mobility and speech. I walk very little now but I wouldn't be able to

walk or stand at all without the pump. I bath, dress, get out of bed,

iron, do laundry, cook, dishes etc. (all very slowly) but I know with out

the pump this would all be impossible to do by myself. When I was on the

oral baclofen all I wanted to do was sleep and my cognitive abilities

were impaired. My liver function also was also impaired by the oral

baclofen.

Now for the bad part. I CAN NOT SAY THIS ENOUGH AND I KNOW JENNIFER

THOMPSON HAS ALSO SAID THIS--THE MOST IMPORTANT THING TO DO IS MAKE SURE

YOUR DOCTOR AND HOSPITAL ARE COMPETENT !!!!!!!!!!!!!

I was not given any help after the surgery, I was on my own and when I

asked for help no one would help me. I was sent to Oregon Heath Sciences

Hospital for the surgery. I do think I would have been better served if

they would have sent me to Dachau! I had baclofen withdrawals and spinal

head aches and the catheter came out, so I had to go in for another

surgery. I had the first surgery in December 2000 and it took them until

February of 2001 to listen to me and do the second surgery. The pump

worked this time but the care was worse. Please believe me and don't make

the same mistake I did. Talk to your Dr. first about spinal head aches,

pain management and complications that might arise and what they well do

for them ahead of time. Have an advocate and make sure they go with you

and stay with you at all times!

I was told that if weakness is your primary symptom the pump will not

help. My main problem is spasticity

Take care, B. Oregon

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Mark,

I believe Roy s was one of those who had difficulty with the

catheter breaking and suffered a great deal of discomfort. I have

often thought of him because it seems we stopped seeing any posts from

him since he was going through his ordeal with the pump. If any one

has been in contact with him give us an update and let him know he is

in our thoughts.

" markw732 " <markw732@y...> wrote:

> Hi everyone!

>

>I also remember people have had a good response to the pump--and then

> something happened--the catheter broke or became dislodged, the pump

> stopped etc. Then I have no memory of what happened.

[Guest guest]

Mark,

I believe Roy s was one of those who had difficulty with the

catheter breaking and suffered a great deal of discomfort. I have

often thought of him because it seems we stopped seeing any posts from

him since he was going through his ordeal with the pump. If any one

has been in contact with him give us an update and let him know he is

in our thoughts.

" markw732 " <markw732@y...> wrote:

> Hi everyone!

>

>I also remember people have had a good response to the pump--and then

> something happened--the catheter broke or became dislodged, the pump

> stopped etc. Then I have no memory of what happened.

[Guest guest]

Mark,

I believe Roy s was one of those who had difficulty with the

catheter breaking and suffered a great deal of discomfort. I have

often thought of him because it seems we stopped seeing any posts from

him since he was going through his ordeal with the pump. If any one

has been in contact with him give us an update and let him know he is

in our thoughts.

" markw732 " <markw732@y...> wrote:

> Hi everyone!

>

>I also remember people have had a good response to the pump--and then

> something happened--the catheter broke or became dislodged, the pump

> stopped etc. Then I have no memory of what happened.

[Guest guest]

Mark,

I am having problems now (to be resolved soon I hope), but getting rid of the medication fog made it worth it.

I would try to build up my strength as much as possible before the operation. It was more difficult than I expected and being stronger would have helped. I'd try to get physical therapy for a couple weeks to strengthen muscles.

Good luck.

Alan Kirk

Help--Pump experiences needed

Hi everyone!I saw my neurologist last Tuesday. He suggested that inquire of myother (treating) neurologist about getting a Baclofen pump. I know that several PLSers have the pump. Some have had badexperiences--I remember Glassman having a bad experience, butI don't know if this is still true. I remember someone else actuallyhad the pump removed.I also remember people have had a good response to the pump--and thensomething happened--the catheter broke or became dislodged, the pumpstopped etc. Then I have no memory of what happened.Conversely, I remember people who are very happy with the pump. and Lavon (I think???) are in this category.Anyway--what do PLSers who have had the pump think of it? If youdidn't like it, was your primary symptom before the pump weakness--notspasticity? If you liked it, what would you have done differently tolessen pain, recovery time, aggravation etc. (I am a wimp and preferto minimize/eliminate as much pain or discomfort as possible.) Iremember something about a patch (???) on some(???) site. Does anyoneknow more about this?If you had it to do over again--would you? Would you do anythingdifferently?Anything that anyone can say would be most appreciated.Mark Weber

[Guest guest]

You may get real tired of hearing me " quote " from the HSP discussion group

but it's eerie that they, too, have had a lot of postings re the pump the

last few days. I'm afraid most of them were quite negative. But as someone

said, perhaps the negative comments are the ones that are made the loudest.

[Guest guest]

Mark,

Yes, I will be the skunk at the garden party. I would suggest to you that

whether you get the pump depends on what you want it for. I would say nay

if the reason is to improve function; yea if the reason is to improve

comfort or to relieve the fuzzy head of oral baclofen or zanaflex.

When I got the pump in Dec. 1997, I was walking. Not perfectly (obviously)

but with no canes, no nothing. But I wanted to walk better. The doctor

said I was strong and a perfect candidate for the pump. After the

operation, walking was better for about six weeks. And then the bottom fell

out. Suddenly, I was worse than I was before the pump. A lot worse,

walking I mean. I was suddenly very tippy and unsure. There was no

question that I was less spastic. I was. And I continued to pass all the

strength tests. But I was functioning a lot worse. Of course, the doctors

want to say, well, you're just worse. But we know that PLS (or at least MY

PLS) doesn't usually involve sudden precipitous drops. And no amount of

messing with the dosage from then till now has restored me to where I was.

So there you have it. I would definitely go for it if you want to relieve

discomfort from spasticity or you are tired of the fuzzy head of oral

baclofen (that was my secondary reason for doing it), but if you think you

will walk better, you have to rely on other testimony. (And people say they

are walking better, you have to ask them exactly what they mean by that.)

Help--Pump experiences needed

Hi everyone!

I saw my neurologist last Tuesday. He suggested that inquire of my

other (treating) neurologist about getting a Baclofen pump.

I know that several PLSers have the pump. Some have had bad

experiences--I remember Glassman having a bad experience, but

I don't know if this is still true. I remember someone else actually

had the pump removed.

I also remember people have had a good response to the pump--and then

something happened--the catheter broke or became dislodged, the pump

stopped etc. Then I have no memory of what happened.

Conversely, I remember people who are very happy with the pump.

and Lavon (I think???) are in this category.

Anyway--what do PLSers who have had the pump think of it? If you

didn't like it, was your primary symptom before the pump weakness--not

spasticity? If you liked it, what would you have done differently to

lessen pain, recovery time, aggravation etc. (I am a wimp and prefer

to minimize/eliminate as much pain or discomfort as possible.) I

remember something about a patch (???) on some(???) site. Does anyone

know more about this?

If you had it to do over again--would you? Would you do anything

differently?

Anything that anyone can say would be most appreciated.

Mark Weber