Any baclofen pump users

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blastmom
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/30/2008 1:35 PM (GMT -7)   
2 years ago I saw a PT and she said I should go to a spasticity clinic.  I was very stiff when I walked and had painful spasms at night.  They told me I would be a good candidate.  Did the trial, could not stand was told by the PT that there was probably too much baclofen in my system still.
 
April 26 the pump was inserted.  That was the last time I walked.  Was put on a flex dose where I get more at night.  But I seem to be getting the night dose during the day.  Drs can't find out why.  My legs have no life during the day until 7 PM.  Then I don't have trouble transferring.  Anyone go through this?

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 7/30/2008 6:59 PM (GMT -7)   
Hey Blastmom

Welcome to the board. I'm sorry, i can't answer u'r question, but i wanted to let u know i saw u'r post and am thinking of u and keeping u in my prayers. There are a few here who i think have used the bacflocan pump, but others who have or are using the med orally. They may be along soon to give u their input. Take care and post as often as u like. Again, welcome.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
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popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/8/2008 2:04 AM (GMT -7)   
I have had my baclofen pump for 3 months.  Previously I had terrible painful spasms when I tried to lie or sit or walk or even stand and also 10/10 pain on the skin.  Since the pump no more pain ! and spasticity in my left leg and back has eased greatly, it is marvellous.  But I do feel like I am on a boat especially if I stand or walk.  When I first had the pump implanted I was very weak when I tried to walk so I reduced the amount twice while I was still in hospital and since then I have moved 10% 3 times from the day to night.  This has helped the rocking quite a bit and I am now strong enough to use my cross trainer without feeling too weak afterwards. I still rock, but am just stable enough to walk with a stick though I do use a walker at home. 
Basically my balance was poor before but is worse with the pump but I am so happy to be without the pain and to have more flexibility that I accept the rocking.  After all some people actually choose to live on boats!?!  Also I found that as I reduced the dosage the leg got stiffer so I dare not go any lower.  Spasticity a night is much improved though I am still as stiff as a board when I get up and very wobbly when I shower so I have to use a chair.
I can only suggest that you keep reducing your dose and see if it helps?  I know I am on a very low dose and can look it up and we can compare if it will help you.  Let me know. All the best. Popsie

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/8/2008 11:11 PM (GMT -7)   

Re reaction to the pump.  Something I thought of later.  I have always had much more spasticity and pain at night, when it gets dark, and have read that it common for people with MS that their symptoms get worse at night.  This would explain your legs getting stronger at night (more spasticity).  I am sure the weakness in the day is just due to the baclofen and if you persevere and keep reducing the dose you will reach the best dose for you.  It will take a while as I have found that the dr will only change the dose 10% each time and then prefers you to wait 2 weeks before the next change. 

Hang in there, you will come right.

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