Re: Dale's report from the neorsurgeon and the pump

[Guest guest]

Hi Dale:

I can understand your being excited but apprehensive at the same time.

Because I did not do well on baclofen I am not a good candidate for the

pump, but I can tell you that if you don't try it you will probably always

wonder 'WHAT IF' and as long as it won't make you any worse then the final

decision is yours and your family's.

I really hope things go well for you. You are an inspiration to us all

here and the story you shared with us about you and your wife brought such

tears to my eyes. You are so fortunate to have EACH OTHER. I know it is

hard not to be there to do the physical things for her but you are there for

her emotionally and that means a lot.

Take care Dale and hopefully I will get back to the chat line soon.

Jo.

Dale's report from the neorsurgeon and the pump

> As most of you know, yesterday I want to the neurosurgeon to discuss

getting

> the baclofen pump. He stated that he had been talking with my

neurologist

> about my history and questioned me extensively on why do I think it was

PLS.

> I knew he was thinking this sounds more like ALS with how aggressive

this

> has been. I told him everything that had been done and after he did a

bunch

> of tests of my muscles he agreed it probably was PLS but had just not

seen

> one so aggressive.

>

> He explained how the pump had the greatest success with people who are

> either stagnant and their symptoms or were on the plateau. Because that

way

> if they have improvement it's fairly permanent, saying the best example

is a

> stroke patient, their symptoms will not get worse and can only get

better.

> He went on to say that I am the most difficult case, because of the

rapid

> progression. If I do see improvement it might only last for five days.

>

> My heart began to sink because I figured he was getting to the point of

> saying it probably wasn't worth it for me. But to my surprise he said

that

> if " I was you I would have done because you have nothing to lose and if

it

> only would last for five days, it was still be five more days than I

have

> now " . After that he went through all the pros and cons, any problems

that

> can happen, but kept saying you still have really nothing to lose so I

would

> do it if I was you. I think he was thinking he had to talk me into the

pump

> but I told them that is exactly what we are thinking I have nothing to

lose

> and if I do get an improvement, enjoy it while I can.

>

> He told us that would not have to go through any of the testing because

> baclofen had help me so much until I started getting sick on it. He

then

> said that the only problem was that he was going on vacation. I thought

oh

> boy here's where the problem comes in. But then he said normally I

would

> try to have you in by next week to do the surgery, but Thursday he was

going

> on two weeks vacation, so it would be about three weeks before he could

do

> it. He wanted to know if I wanted to wait that long? I said fine, I

had

> expected not to be able to do it till April any way, so I was very happy

> with three weeks.

>

> One last thing he did say too my wife and I, after seeing me and reading

my

> history if I was his patient he would be telling me that I should be in

a

> wheelchair. I told him I was also coming to that conclusion, it's just

was

> moving so fast, I just started using the walker a little over two months

to

> go. My mind is trying to catch up to my body.

>

> So there you have it, I'm getting the pump, I'm excited and worried at

the

> same time because I know this is my last resort. If the pump doesn't

help

> me there is nothing else at this time.

>

> Take care all,

>

> dale, PLS boy

>

>

>

>

>

>

[Guest guest]

Dear Dale,

You will be in my prayers, PLS boy!

Dale's report from the neorsurgeon and the pump

> As most of you know, yesterday I want to the neurosurgeon to discuss

getting

> the baclofen pump. He stated that he had been talking with my neurologist

> about my history and questioned me extensively on why do I think it was

PLS.

> I knew he was thinking this sounds more like ALS with how aggressive this

> has been. I told him everything that had been done and after he did a

bunch

> of tests of my muscles he agreed it probably was PLS but had just not seen

> one so aggressive.

>

> He explained how the pump had the greatest success with people who are

> either stagnant and their symptoms or were on the plateau. Because that

way

> if they have improvement it's fairly permanent, saying the best example is

a

> stroke patient, their symptoms will not get worse and can only get better.

> He went on to say that I am the most difficult case, because of the rapid

> progression. If I do see improvement it might only last for five days.

>

> My heart began to sink because I figured he was getting to the point of

> saying it probably wasn't worth it for me. But to my surprise he said

that

> if " I was you I would have done because you have nothing to lose and if it

> only would last for five days, it was still be five more days than I have

> now " . After that he went through all the pros and cons, any problems that

> can happen, but kept saying you still have really nothing to lose so I

would

> do it if I was you. I think he was thinking he had to talk me into the

pump

> but I told them that is exactly what we are thinking I have nothing to

lose

> and if I do get an improvement, enjoy it while I can.

>

> He told us that would not have to go through any of the testing because

> baclofen had help me so much until I started getting sick on it. He then

> said that the only problem was that he was going on vacation. I thought

oh

> boy here's where the problem comes in. But then he said normally I would

> try to have you in by next week to do the surgery, but Thursday he was

going

> on two weeks vacation, so it would be about three weeks before he could do

> it. He wanted to know if I wanted to wait that long? I said fine, I had

> expected not to be able to do it till April any way, so I was very happy

> with three weeks.

>

> One last thing he did say too my wife and I, after seeing me and reading

my

> history if I was his patient he would be telling me that I should be in a

> wheelchair. I told him I was also coming to that conclusion, it's just

was

> moving so fast, I just started using the walker a little over two months

to

> go. My mind is trying to catch up to my body.

>

> So there you have it, I'm getting the pump, I'm excited and worried at the

> same time because I know this is my last resort. If the pump doesn't help

> me there is nothing else at this time.

>

> Take care all,

>

> dale, PLS boy

>

>

>

>

>

>

[Guest guest]

Good luck with the pump Dale, please keep us posted, my Neuro has mentioned it

for me too. Not sure about it yet. Sandy

Dale's report from the neorsurgeon and the pump

As most of you know, yesterday I want to the neurosurgeon to discuss getting

the baclofen pump. He stated that he had been talking with my neurologist

about my history and questioned me extensively on why do I think it was PLS.

I knew he was thinking this sounds more like ALS with how aggressive this

has been. I told him everything that had been done and after he did a bunch

of tests of my muscles he agreed it probably was PLS but had just not seen

one so aggressive.

He explained how the pump had the greatest success with people who are

either stagnant and their symptoms or were on the plateau. Because that way

if they have improvement it's fairly permanent, saying the best example is a

stroke patient, their symptoms will not get worse and can only get better.

He went on to say that I am the most difficult case, because of the rapid

progression. If I do see improvement it might only last for five days.

My heart began to sink because I figured he was getting to the point of

saying it probably wasn't worth it for me. But to my surprise he said that

if " I was you I would have done because you have nothing to lose and if it

only would last for five days, it was still be five more days than I have

now " . After that he went through all the pros and cons, any problems that

can happen, but kept saying you still have really nothing to lose so I would

do it if I was you. I think he was thinking he had to talk me into the pump

but I told them that is exactly what we are thinking I have nothing to lose

and if I do get an improvement, enjoy it while I can.

He told us that would not have to go through any of the testing because

baclofen had help me so much until I started getting sick on it. He then

said that the only problem was that he was going on vacation. I thought oh

boy here's where the problem comes in. But then he said normally I would

try to have you in by next week to do the surgery, but Thursday he was going

on two weeks vacation, so it would be about three weeks before he could do

it. He wanted to know if I wanted to wait that long? I said fine, I had

expected not to be able to do it till April any way, so I was very happy

with three weeks.

One last thing he did say too my wife and I, after seeing me and reading my

history if I was his patient he would be telling me that I should be in a

wheelchair. I told him I was also coming to that conclusion, it's just was

moving so fast, I just started using the walker a little over two months to

go. My mind is trying to catch up to my body.

So there you have it, I'm getting the pump, I'm excited and worried at the

same time because I know this is my last resort. If the pump doesn't help

me there is nothing else at this time.

Take care all,

dale, PLS boy

[Guest guest]

Dear Dale,

You will be in my prayers. Please be careful and rent a wheelchair at least for

the next few weeks. It would be bsad for you to fall now and hurt yourself now

when you are so close.

Regards, Sue Ellen