CP & Baclofen Pump Experience

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.

Moderators: Tmagic650, Lori-ann

Lillehammer94
Posts: 2
Joined: Mon May 15, 2006 4:51 pm

CP & Baclofen Pump Experience

Postby Lillehammer94 » Mon May 15, 2006 5:00 pm

I learned about this board through the UCP message board and noticed that the admin was looking for people to share their Baclofen Pump experiences.

I am 25 and have mild spastic diplegia/left hemi CP that mainly affects my legs with almost no arm involvement. I'm pretty mobile having walked on my own since age 3. In Oct. 2003 I received a Baclofen Pump which has greatly improved both my mobility and range of motion. I am much less spastic despite some setbacks with the device early on. I've had to learn to walk all over again but the results have been very worth it. I recently completed my first year of college.

Great to see a board run by a peer with CP!

User avatar
admin
Site Admin
Posts: 98
Joined: Wed May 10, 2006 2:18 pm

Gald to hear the pump is working for you

Postby admin » Wed May 17, 2006 2:39 pm

Hi Lilliehammer,
Thanks for the post. I had mine installed a couple years ago....not sure of the exact date, I'm really bad with dates :-). I too have mild spastic diplegia cerebral palsy that affects my legs with little arm involvement. I have noticed that my mobility has increased a little and I can stand upright better. I can walk on my own and was able to before getting the pump installed but I have to use a pair of crutches when walking long distances.
I did have somewhat of a nightmare with the baclofen pump though. I got it installed and was sent home the same day. A few hours later I came down with the worst migrane headache I have ever had. It slowley got worse until I could not keep any food down and could not even move from the couch. I was sent back to the hospital and they found that I was leaking spinal fluid. I had to stay there a week until they could get it under control. Not sure if that is common with these or not. I did some research on it but could not find anyone that had similar experiences. I have not had any big problems with migranes since then. Not sure if the Dr did something wrong or what. Overall though I am pretty happy with it now that I am over all that.

- Mike

Tmagic650
Posts: 46
Joined: Mon May 22, 2006 5:34 pm
Location: Billings, Montana

Postby Tmagic650 » Tue May 23, 2006 9:16 am

I was recently perscribed Baclofen for skeletal muscle stiffness. My daily dose is oral and it is very low... only 10Mgs. 5Mgs in the morning, and 5Mgs in the evening. My doctor prescribes Baclofen to her AB patients, not for spasticity, but for stiffness and to increase range of motion. I really don't suffer with much spasticity. When I am tired, my feet may show some though
Spastic Diplegia CP
aka Kurt... Sometime walks, sometime rolls

Tmagic650
Posts: 46
Joined: Mon May 22, 2006 5:34 pm
Location: Billings, Montana

Postby Tmagic650 » Wed Feb 07, 2007 12:09 pm

I stopped taking baclofen last November. Any dose over 10MG a day made me too sleepy to function
Spastic Diplegia CP

aka Kurt... Sometime walks, sometime rolls

jennifer18
Posts: 10
Joined: Wed Jan 30, 2008 8:01 pm

Postby jennifer18 » Thu Jan 31, 2008 7:57 am

I don't take no Medications for my CP.............But it hurts when the weather changes though, cause my muscles are killing right now.

taz
Posts: 1
Joined: Fri Sep 04, 2009 2:00 am

baclofen and intrathecal baclofen treatments,

Postby taz » Fri Sep 04, 2009 2:06 am

:?: what are the bad and good points of the pump

User avatar
admin
Site Admin
Posts: 98
Joined: Wed May 10, 2006 2:18 pm

The Pump

Postby admin » Tue Sep 08, 2009 11:51 am

Hi Taz,
Take a look at my post in this section about my experience. By no means do I want to discourage anyone from getting the pump as the benefits I have experienced since the install have been great! I have been doing some research and very few experience the problems with the install as I did. I suggest going for the trial and you will know if you get the spinal headaches after the trial that you may experience the same problems when getting the pump installed. If you do have problems at the trial with spinal headaches, ask the doctor to do a blood patch when doing the actual pump install. I have read that this eliminates any problems with spinal fluid leaks.

-Mike
admin@cerebralpalsyforum.net

Sue
Posts: 1
Joined: Mon Jan 04, 2010 2:25 pm

Postby Sue » Mon Jan 04, 2010 2:35 pm

Hi all-
I am brand new to this blog. I have mild cp and I want to get the baclofin pump and botox treatments. I need to find funding though- any suggestions?
Sue

wilsonjohn
Posts: 11
Joined: Sat Jul 02, 2011 12:16 pm

Re: CP & Baclofen Pump Experience

Postby wilsonjohn » Fri Aug 12, 2011 8:16 pm

Thanks for opening this open. I find here more useful discussion on CP @ Balcofen Pump exercise. I wanna get Balcofen Pump treatments.

Garryepolwe
Posts: 7
Joined: Thu Dec 18, 2014 2:29 pm

Re: CP & Baclofen Pump Experience

Postby Garryepolwe » Fri Dec 19, 2014 3:20 am

It’s really great posts.

jesicasim
Posts: 4
Joined: Fri Jan 09, 2015 8:09 am
Contact:

Re: CP & Baclofen Pump Experience

Postby jesicasim » Sun Jan 11, 2015 3:33 am

I really don't suffer with much spasticity. When I am tired, my feet may show some though!!!