Multiple Sclerosis (MS) Support Group

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mjideas 06/13/2013

Well, every day I wait is another day of misery so this has to be done. The trial went well (once he got the LP needle in). It should have been done under flouroscopy and I assumed it would be. So I am looking at July1 or so for surgery.

I only know a couple of people on this site who have mentioned having one. The pump has been around for almost 20yrs and the manufacturer's rep showed me the new one they have just come up with.

I think this option is not well known enough in MS circles. The big market is spinal cord injury. The rep told me a spasm hit him so hard it dislocated his hip and that is when he made the decision. It's been a life changer for him. He has same neurosurgeon and spasticity Dr so that really helps make me feel more comfortable

So anyone who has one I'd love to know how life is for you with it. Any surprises I may be expecting good or bad that kind of thing.. I know we are all dfferent. Please feel free to send private message if that's more comfortable.

I believe it really may help a lot of people to get the word out. Turns out the work began here in Boston-BMC, Joe Ordia,neurosurgeon.

Thanks folks and wish me good luck!

Melanie

deleted_user 06/13/2013

Wow sounds amazing, keep in touch with us. I hope you get some posts from others I know nothing about it, but will learn now. Whatis this called?

deleted_user 06/13/2013

Ok I see a pump but a different kind?

baywatchkelly 06/13/2013

I have had the pump since September. Prior to the pump I was in so much pain I felt nuts. I had some setbacks with the surgery. However I am now fairly stable. It took many adjustments to get the pump to a decent spot. After a few months it was in a pretty good place. Then my spasticity increased. So, I had more pain and more adjustments. It is a fine line because if I get rid of all the spasticity I will lose more strength. I live with a level of spasticity that is moderate and take some pain pills. This summer when I get the pump refilled they want to add some pain med to the mix. This will eliminate for the most part the need to take oral meds.
It is good because you don't need orals, aren't so tired, and need way less meds for the same affect. Let me know if you have more specific questions

ezone 06/13/2013

good luck. best wishes.

ChrissyH 06/13/2013

Best of luck and good wishes. I don't know much about a pump, so I can't reply on it.

deleted_user 06/14/2013

Good luck!! il be lookin into it to- high five!!!!!

Kayce1970 06/14/2013

i also have bad spasms. I call them violent spasms as I jerk all over the place. They have been putting me on other muscle relaxants but all they do is make me sleep.
I live in in hospital I have a power chair but with the spasms I am going to lose my chair but if I take the drugs I am so tired I will lose my chair have to go into a manual chair
I would like to try a becolfen pump and get my life back

bleedinblue 06/15/2013

I am excited for you Melaine recovery from surgery takes a while I was working at the time and was out of work for about a month let me no I you have any more ? Take care.

deleted_user 06/16/2013

i've been wondering about this. i wonder how much Baclofen is prescribed before the pump is the better way to go. i'm taking 20 mg 4 x day then i've found myself needing more after that because the spasms are so painful i can't wait for the next day to start my next round of doses..

bleedinblue 06/17/2013

Not sure my pump is set at 245mlg/day my stiffness is manageable hope that helps.

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