Baclofen Pump Tests / Use

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peter57

Distinguished member
Joined
Jun 21, 2009
Messages
434
Reason
DX UMND/PLS
Diagnosis
10/2008
Country
AUS
State
S.A.
City
Millicent
Hi all,

Well next week I am going to have some tests done to see if the Baclofen Pump will be suitable for me.

I am currently on 75 mg of Baclofen (3 x 25) a day and they dont seem to be doing much.
My strength has stopped declining (I think so any way) and I am still walking although with a walker for balance.

My Neuro suggested i might benifit from having one.

Now the interesting part.
The hospital where i am going to has not done a MND patient with a pump before, they do other people though.
So to see if i will have a benifit from it i will be in hospital for 5 or so days, doing the gradual increase in amount test etc.
(i guess another round of being a guinea pig):lol:

I know that there are several others on the forum who have had a pump eg Rayboo alias Raymond B., amatopps etc and have read the threads that they have posted re the pump and it will be interesting to see how the tests go with me.
I will keep every one informed

cheers
Peter
 
hi peter.
most of those with pls fitted with a pump have very good results.
it is best for those like yourself were oral baclofen does not help or for those who can not tolerate the side effects with oral baclofen.
personally baclofen has always worked well with me and little side effects.
75mg is a lot to have no relief so i think you should go for the pump.
i started off on 60mg and now take 40mg with a bit extra on really bad days.

hope your procedure goes well,please let us know how you get on.:smile:
 
Thanks Caroline,
Yes i intend to have the pump if it works, I am sure it will.

It has been over 7 months since the neuro was supposed to arrange for this to happen and when i got the letter re the admission i thought it was to have the quick test and then fit the pump.
But no it is only for the test and if successful then at a later date fit the pump.
They say good things come to those who wait.

cheers
Peter
 
Hi all.
I am back from the tests so I thought i would update you and give you a bit of a rundown on the tests they did.

(all these tests etc were done in the pain unit in the hospital, interesting place as i spent app 6 hours each day in there, seeing all sorts of people come and go)

I met with the physiotherapist, who ran a series of tests on me, the normal leg movement, arm movement, reflex etc. that i am sure you are all familiar with, to get a base for to compare for the trial.

They then put the temp Intrathecal tube in to the spine and gave me a shot of mg of Baclofen straight away and then hooked me up to a temp pump for another Mg over the next 24 hours.
Next day (app 20 hours on) I repeated the tests to see any improvement, a little in the legs and some in the arm and hands.

So they increased the dose to 50mg and 50 mg over 24 hours.
After about 3 hours of the first 50mg slug I became very stiff for some reason. I t was only after app 9 hours when the slug had gone through that I freed up some.

Next day I repeated the tests and were about the same with some slight improvement in the hands.
The doctors were confused to say the least re the result of the the 50mg slug and wanted to terminate the trial.

I had over the past 2 days spoken at length with the head of the pain section, not the professor but the head nurse who does all the work about the use etc and what i wanted to get from the trial.

As I was the first MND patient they had tested she said why don't we do another 24 hour test without the initial slug, but with 100mg over 24 hours, as the slug is what caused the stiffness.

They agreed and i started on that and next day repeated the tests.
I showed an app 20% improvement in my arm movement and app 15% improvement in my speed as well as doing longer strides while working, flexibility in my knees also improved.

They were impressed.

They then had enough info re the effectiveness of a pump for me and removed the tube.

They are now going to all meet and work out the next step.
The head nurse is really confident that I will be back to see here in the near future but she is only one in a large group of people. (each department has to talk to each other, when you have the Nero dep asking for the tests, the pain dept doing them, the phisio dept assessing the results and so on. It will take time)
The head nurse is going to push them together for me next week.


On a side line due to my relative rare condition, PLS I had the gamut of students visit me during my time, as well as being the "patient" for several students being assessed for different subjets during my stay and if i have to say La La La La La or Ta Ta Ta Ta again for a while i might just refuse, no I wont, the more people who have an understanding of MND the better off we will be.

So in summery, the tests went well, so it is now wait and see time again.

I hope this helps others who might consider this as an option in the future.

I stress that it is not a cure but it might give people another option in the treatment of some of the symptoms.

cheers
Peter
 
Peter,

Thanks for sharing your experience. I'm relatively new to the world of baclofen and it doesn't seem that 10mg 3x a day is doing much at all for me.

I'm watching to see how things go with you.
 
Well I finally have a date for the fitting of the pump. It is on Friday the 30th of July, my time.
They are unsure of how long I will be in hospital but it is likely to be several days.
This probably because I live some 5 hours away from the hospital doing the work and I might need some more time to recover for the trip home.

Mr Giggle on the pump is very vague on the time frame for the recovery, one site said it was a day surgery procedure while others say it’s a few days to recover. Who knows, that’s one of the issues with Mr Giggle, you have to weigh up all the info and then it all might be wrong.

So no Friday night drinks for me this Friday :lol: and I will be MIA for a few days from Wed night, admitted on Thursday, but as a world war 2 general said “I will return” and update you on how it went.

Cheers
Peter
 
Good luck Peter, I am sure someone will keep your seat warm at the pub and they might even have a Coopers for you!
 
best of luck , with a short stay as there is no place like home
 
Dear General MacArthur,

This time don't take so long to return, ok? I will send choc chip muffins as a "Welcome Home" gift. Peter, wishing you the very best care and results. Thanks for the update. I pray they know how senior you are in rank and treat you very, very well.

The chow dept.
 
I hope all goes well. Will look forward to your return.
 
Thanks all for the well wishes.

Dont play up too much while I am away :lol:
( I will enjoy the muffins Ann, when I get home)

cheers
Peter
 
Well I am back from having the pump fitted and recovering.

The operation went well though but I am taking some time to recover back to pre operation.

I have not had the improvement shown during the trial yet but this, they say could be due to several reasons.
One of which, during the trial I remained on the oral as well. So the dose might have to be increased to have positive results.
Another reason could be I went cold turkey off of the oral. 75mg. and this has had an effect on me.
So now for the next few days, its slowly, slowly to let the body recover, then get some ROM stretches going and see what happens before I go back in a couple of weeks or so.

Cheers
Peter
 
hey peter,good to see you back safe.
it could be the things you mentioned but also if your like me any invasive procedure can send spasms into overdrive.
rest well,do nothing and hopefully when the baclofen kicks in you will feel tons better.
take good care.
caroline
 
It is so good to have you back at the forum, Peter. Where is the pump placed? I hope your ROM exercises can begin soon and you "loosen up". I'm sure you look forward to that, too!

Rest up! and speedy recovery wishes,
Ann
 
Good to have you back Peter, we have missed you! I hope the pump works for you soon.
 
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