Hi, just looking for comments from anybody who may be using tht baclofern pump for muscle stiffness. Oral baclofen of 60mgs per day not helping. Neuro suggesting pump - have to go to hospital for 7-10 days tho. Ugh!!! Anybody got any advice or information?
No advice sorry, just bumping you to top incase someone can offer advice or help. Linda x
Hi, a friend of mine who has HSP, not MS, is going in for op next Thursday. She takes 60mg baclofen and has botox in her legs, but spasms and very stiff heavy legs persist.
Will post how it goes for her.
pollxx
Hi, do they give you this if you are still able to walk?
Thanks
Moyna xxx
Hi Moyna, yes, my friend is still walking, but with difficulty.
pollx
Hi all,
thanks for your posts re baclofen pump. Ya I can still walk - just about - and am afraid of making wrong decision about pump. Legs very stiff and heavy. Don’t want to waste 2 weeks in hospital getting pump fitted if it doesn’ help. So hard being in hospital - washing, sleeping, getting to loo on time!!! All of these things are hard at home so hospital is the last straw!!!
I don’t know what to wish for!!!
I
Hi again.
My friend isnt expecting to be kept in hospital…not even for 1 night???
pollx
Me again,
In hospital they don’t put in pump straight away. Give small doses through epidural first to see if it helps - apparently this could take days to get right. If it is of benefit then they do operation to insert pump. This requires another hospital stay.
Suppose I will have to grin and bear it!
Yes, I didnt think to add, that my friend was taken in for a trial. First with 25mg and it didnt help and then with 50mg, which worked.
pollx
That sounds like what they said to me. Hope it doesn’t take too long to get suitable dose.
Thanks for your reply. I appreciate it
Hi again, have you got a date for admission? Also can I asked what area/hospital you are using?
My friend goes in tomorrow and is fully expecting to go home the same day. I wish they would keep her in, at least for 1 night.
luv Pollx
Hi,
No I don’t have admission date for baclofen trial. Opted to meet ‘pain specialist’ doctor first to duscuss. Think it’s just me putting off the inevitable - buying myself more time!
Am in ROI.
Hi again. My friend went in hospital expecting her operation.
No, it wasnt what she expected. She saw a neuro surgeon who explained what they will do and now she is waiting for a pre-op assessment and will have the op Nov/Dec and be in hospital for a week or so. Sounds more like it!
luv Pollx
Thanks for that. It’s seems that there’s a lot of talking to be done before op doesn’t it. Hope it’s sucessful for your friend. You would need to get benefit from it after all that time in hospital. That’s what’s putting me off - no gaurantee that I will get anything positive from it - but that’s life - sure not straightforward when MS is involved.
You`re so right. Having an operation that involves the spinal cord is something not to be taken lightly.
That friend of mine used to have botox into her legs every 3 months and it did help.
Have you thought about that?
pollx
Hi again, no I haven’t heard of botox injections in the legs - would that not make legs stiffer? Have only heard of botox for bladder . Is it stiffness in muscles that your friend has? That’s what they’re telling me - not even sure myself at this stage. I just have problems walking and getting up stairs although I wouldn’t describe it as weakinss. Physio said that baclofen could be causing weakness too - everybody has different opinions=(
Marie, I am on 60 mg per day, but quite able-bodied still (my neuro doesn’t like me on this much, but if I tried to reduce, I doubt I’d be quite so able-bodied as he sees me - LoL).
I think we are both still not on the maximum permitted dose, though. I think 80 is the textbook maximum, but some here have been safely prescribed more. If you are not yet on the max, I’m not sure why they have not taken the more conservative course of allowing you to experiment with a higher oral dose, before considering an invasive procedure. Surely, before tablets are dismissed completely as ineffective, you should be allowed to try a higher dose?
I’m not anti the baclofen-pump, as I know it can sometimes help where oral treatment has failed. But if it were me, I’d want to make quite sure I was out-of-luck with the tablets, including trying as much as I’m allowed, before taking the more radical route.
Tina
x
Thanks Tina,
I’m a bit confused myself as to why I’ve not been given max dose of oral baclofen. Was with my physio on Monday, She doesn’t think that my legs are really very stiff at all and is going to contact some of her colleauges in one of the bigger hospitals to see how soon baclofen pumps are being used with other patients. I think my neuro is trying to do his best for me and thinks that if oral meds not doing much for me already that maybe pump would be a better treatment???
I’m confused and a bit (no a lot) scared!
Have you seen where baclofen pump has helped people? How bad were they before hey went on it? I know physio and ms nurse have said that they tend to use it sooner than before while people are sill mobile - but my mobility is very bad now and seems to be getting worse by the week.
Marie
Hi Marie
I was in v.much the same position as you and also have been recomended for a baclofen pump. The difference is that I had botox in my legs for awfful spasms amd a day later was unable to stand up and have never stood again ( for nearly a year now) I regret it so much and cant give up on trying to stand again. The botox wears off and I have awful spasms again (neurologist wants me to have more botox) but there must be some still in my legsand I dontt want to have botox agin, thus the baclofen pump.
jude
hi all,
i too am having major doubts abut the pump. i can barely walk due to my ms and my rehab nurse has now suggested the pump. i am currently on 90 mgs of baclofen a day and while is seems to help movement a little, i seem to be sleeping my life away as a side effect. i have botox in my legs also to help. i am just so confused, one website says 280, 000 of these pumps have been successfully fitted but i can only seem to find people either unsure or complaining about them. i would like to jhear from the person who has had the success and wondered if either of you had had good fortune yet. my sister says “go for it, how bad can it be?” but she is fully active and a bit ditsy haha. my husband says "nope youre too worried so you not having it and although is wonderful in every way, he doesnt voice an opinion in my treatment plans leaving it to me. can anyone at all give me an opinion or share thei experiences either way please!!!
many thanks for reading
angie xx