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After Baclofen pump test

Baclofen is a medicine currently being used for Cerebral Palsy. If you use Baclofen or have a Intrathecal Baclofen pump, post your experiences or questions here.

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After Baclofen pump test

Postby ohadnice » Sat Mar 12, 2011 9:46 am

Hi all, I am a new member in CPforum, so I'll present myself.
My name is Ohad, 34 yrs old, from Israel (that's why my English not as urs), I am tripleg CP, married to a beautiful wife, sitting on a wheelchair. I am working for AOL's sub company (ICQ), which is high-tech company as QA engineer.
I am doing all by myself, driving a car, playing wheelchair basketball.
About my (wonderful) CP:
As I said, I am tripleg CP. I have 2 strait legs, my right hand is just for holding pen or keys :lol:
My speech is very spastic but ppl can understand me.
My doctor suggest me to try the baclofen pump, therefore, I should make the Baclofen pump test. So I did it last week, during the test I didn't feel my muscles were completely relax, but I felt some relaxing.
In Israel, most of the "Baclofen pump ppl" are children's, and I am looking for adults to have some details after the surgery.
I would appreciate if u can share with me details about failures and successful stories

Thanks and loves,
Ohad
Facebook: http://www.facebook.com/ohadnice
ohadnice
 
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Re: After Baclofen pump test

Postby joannesax » Sun Mar 04, 2012 7:40 pm

I have a son, aged 43 who had a baclofen pump installed in Nov 2011. He did okay on the test but had problems with the pump install. After the install, he had severe headaches that kept him in bed. It took the doctor over a month to realize that he was leaking spinal fluid. He had another surgery to seal the leak with a blood patch. Now the headaches are still there but not as severe. The spastisity is gone so his legs are no longer stiff, but he is severely tired and feels achy all over at times. He is weak and has had difficulty transferring from the chair to his bed. Only his legs are effected by the cp, but now his arms are weak too. His pump is set at 65 now but it is still too high. They started with a setting of 200 which left him not able to do anything. He was so limp, he couldn't move. They reduced the pump to 100 which helped some. It has been decrease to 80, 70 and now 65. He has not felt well for the last 3 months so he is not happy with the pump.
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Re: After Baclofen pump test

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