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Baclofen Pump query!!!

Baclofen Pump query!!! Saw a post on here from someone querying baclofen pump and whether to have it done or not. I had one done four weeks ago and at the moment I can say it’s the best decision I’ve made for some time! Simply not having to take the oral meds is a big bonus… No fatigue, lethargy and as for depression? A big improvement. Stiffness is still there a bit in my legs, but I know it’s early days and the dosage still needs tethering. If anyone out there is thinking about having it done, I found one of the best sources of info were the spinal injury sites.So… If anyone wants a chat about the pump, please get in touch xxx

I was very interested in your post. I have been taking oral baclofen for two years, I am now on 80mg a day, it has not helped my spasticity in my legs at all. My neuro says may have to consider baclofen pump. I am concerned about possible side effects and the possibility of the pump malfunctioning. Although I have to say I am desperate for a good nights sleep so will probably try almost anything.

Does anyone have personal experiene of the pump?

Carol

Hi,

I thought about having one…but I already have a supra-pubic catheter, so didn’t want to have something else planted inside me! Sounds like it worked wonders for you, may consider it one day.

Hi schoey23, re supra-pubic catheter, I had mine done in November last year, with the baclofen pump in mind. I’ve had a bad 18 months, and thought what the hell!.. Go for it! So I now have both and seeing how it goes! Retrospectively, I wish I had pushed for the baclofen pump earlier whilst my legs were not as bad.

Hi, a friend of mine, who has the same condition as me ie not MS, but very similar mobility problems, is going down the baclofen pump route.

She has to have some baclofen injected into her spine via LP first. They will see if it has an effect (a short hospital stay). If it does, she will have the pump installed.

She said they put it in her stomach…have you got your`s there?

She is fed up of pill popping, with little effect on her spasticity and spasms, despite botox as well!

Glad to hear its so far so good for you. Ill tell her.

I know another person who has a bladder gadget…not an spc…and an anti-reflux gadget under skin. She copes well with both.

luv Pollx

Good to hear and yes will certainly think about it, glad there are people on here to ask!

Hi Poll, yep had the test first, tell your friend when she’s had the test dose to drink plenty of water afterwards and if she gets headache to lie flat again for couple of hours. It’s the spinal fluid they take out, but it’s not as much as a LP. They said to lie flat for hour n half only, the observed in sitting position for an hour. It obviously wasn’t enuf for me. Mine is just under the skin in the abdomen, it does stick out a little, but it hasn’t stopped me wearing jeans! When go in hospital for the pump, once the op is over, they start to slowly reduce the oral tabs. At this point you can feel very low, but within a week or so, I felt better than I had done for at least 18 mths. Definitely worth it x