[itsjustme]

Can any of you who are paralyzed and have the pump tell me what the surgery is like? It doesn't sound like much, just a little incision for the pump itself. Are you pretty much up and going in a couple of days or so?

Speaking as a paraplegic what kind of rehab is required? What would it affect, just getting rid of one's spasms, that would require rehab? I don't understand that.

I've had the trial done and I can tell you that it was WONDERFUL having my body totally at ease. I don't think that I realized how wonderful it was until the end of the day when my body went back to it's endless spazing even with the oral Baclofen that I take.

Yet, I still have lots of reservations concerning the surgery so I'm looking for input from you all who have been there already.

[Hotrodgimp]

itsjustme, on Oct 7 2006, 02:18 PM, said:

Can any of you who are paralyzed and have the pump tell me what the surgery is like? It doesn't sound like much, just a little incision for the pump itself. Are you pretty much up and going in a couple of days or so?

Speaking as a paraplegic what kind of rehab is required? What would it affect, just getting rid of one's spasms, that would require rehab? I don't understand that.

I've had the trial done and I can tell you that it was WONDERFUL having my body totally at ease. I don't think that I realized how wonderful it was until the end of the day when my body went back to it's endless spazing even with the oral Baclofen that I take.

Yet, I still have lots of reservations concerning the surgery so I'm looking for input from you all who have been there already.

Hi: I had the pump surgery in April 05 and I can honestly say It was'nt bad to go thru. My legs are partially paralyzed due to disease, and I have been struggling with spasticity while trying to walk. I had an incredible test dose and couldn't get the surgery done fast enough. I spent two days in the hospital and then two weeks in rehab and when I got out I had gone from walking 50ft. to 400ft with forearm crutches between rest stops. Unfortunately for me my disease is active again and it is affecting my walking more.
The hardest thing to deal with was trying to get the dosage correct in the beginning. With the setting too low,too much spasticity. Too high and my legs were weak. Also the refills are quite easy, and done in the dr. office. I hope this info helps and I would be glad to answer any other questions.

[itsjustme]

Thanks so much for the reply. I've just been miserable in my spasms for the last 3 days, much worse than normal for some reason, and the idea of the pump sure is looking good to me right now.

I understand the problems that one would encounter trying to reach a happy medium with the pump while trying to walk obviously trying to control the spasticity and the weakness, and I understand the need for rehab in that situation. In reading this forum I do see that so many people who have posted are walkers.

But, I'm paralyzed, T2, and I'm beginning to think that there just aren't that many paralyzed people with the pump and I'm wondering why?

[Hotrodgimp]

Hi again: I just wanted to let you know of another helpful site with some non walkers. disabilityforum.org.au/forums.php listed under "anything to do with disabilities" is a topic about baclofen pumps which I found quite helpful while considering the pump. If you read thru the site you will see the processes we all went through before and after getting the pump. Again I hope this info helps.

[Vicki]

Hi itsjustme

My name's Vicki and I built & moderate http://www.disabilityforum.org.au in Oz.

I just wanted to let you know that there are 1000's of people who've had the pump inserted to control spasms. I'm one.

I'm a C3/C4 quad as a result of an SCI 25 years ago. Spasms would twist my entire body into extension every 20 minutes for anywhere up to 40minutes. I'd wind up shooting almost out of my chair and exhausted after going out.

I had the tests for a pump done in mid 2004 and wow it was amazing being spasm free for 4 hours! I couldn't wait to have the pump put in. It was inserted just before xmas 2004 and it's the best thing I've ever done in my entire life!

The surgery is no drama. You wind up with a small lump (2 1/2 to 3ins max) to one side of your belly button & a small (1/2in) nick in your back. The 'lump' is surrounded by a smiley face ( like this ) ) where the surgeons open up the top layers of skin to insert the pump. Mine had funny looking staples all around it to hold the skin together. Now being a high level quad, I don't have 'normal' sensation below my armpits. I felt uncomfortable but I honestly don't think I was in much pain. (Happy to send you a pic of the staple smiley face on request. A Yank did this for me prior to the insertion of the pump. Scared the heck out of me but I knew what I was in for. The docs hadn't mentioned staples.)

I only spent one day - besides the day the surgery was done. It took 3 to 4 different slowly increasing dosages on as many days to get the dosage right. I cannot describe how out of my tree I was on the day I was wheeling around over bumps, hills and footpaths - spasm free! Absolute magic!

If you've got a lot of spasm or spasm makes your life harder, go for it.


Cheerio
Vicki

[itsjustme]

Hi Vicki,

Thanks so much for the input. Not only would it make my life easier for me but it would make life easier for my caregiver. I just read through some of the postings and I see so many problems with dosages, and leaking, etc. When you listen to the surgeon and the Medtronics Rep. it just sounds so simple, easy, almost carefree.

I mentioned on another forum that we all ask each other what to do about spasms because so many of us truly suffer with them but no one really seems to consider or discusses the Baclofen Pump as an option.