Cerebral Palsy

Good Afternoon, I am considering getting a trial for the Baclofen pump. I have been on oral Baclofen for 2 years and have been having major issues with it. The issues range from severe troubles with my overactive bladder even though I am not drinking many fluids to major anxiety and possibly some depression. My doctor is aware of these issues and has suggested that I consider getting the trial for the pump. I would be interested in communicating with people about their experiences with the trial, the pump surgery and life post pump. I would be particularly interested if there are people out there who decided to go forward with the pump because of a spastic bladder and emotional side effects of the pill. Also, if there is anyone in the Washington DC area that had it done I would be particularly interested in hearing from you as that is where I am located. Thank you for your time. UAWildcatAlum06

Hi,

I have mild cerebral palsy diagnosed with left spastic hemaperisis at age two.  I am now forty two.  My trial dose of ITB (baclofen) therapy worked amazingly well to loosen my muscle contractures and lessen the muscle spasticity.  The ITB trial improved my gait pattern and in turn improved/increased my activity level.  I felt like a different person literally!

The trial dose was a definite success, however the baclofen pump placement was not.  My body rejected the pump three times over.  Yes that's true...I tried the baclofen pump three times.  The ITB baclofen was very helpful in controlling the muscle spasticity, but my body did not accept having a foreign object implanted inside my abdomen.  I had plenty of staph infections with the placements of the three different pumps.  I spent several days in the hospital including time in neuro ICU.  With the last baclofen pump, I almost died and suffered from septic shock.  Before the pump was removed I was so full of infection that I looked like I was nine months pregnant with twins! I awoke from surgery in neuro ICU with several drainage tubes in my abdomen and back.  I am lucky to be alive today.

My last pump was placed and removed about five years ago.  I have since been taking oral baclofen again and coping with the side effects like drowsiness, nausea, headaches, etc...I am sure you are very familiar with oral baclofen side effects.  I did not hear of many negative (horror) stories associated with ITB (baclofen pump) or Medtronic devices, but I am proof that the pumps do not always work.  There are understandably risks with all surgical procedures.  Keep in mind that all individuals experiences vary.  ITB may work very well for you.  If you have specific questions please don't hesitate to ask.  Take care and best of luck.

Trish

When I was in the rehab hospital I tried very hard to be a compliant patient...even tho I am totally opposed to pharmaceuticals...and I agreed to take Baclofen because they said my spasms were interferring with my physical therapy.  Then I went to the Media Room and did some research on it....and found that side effects are INCREASED spasticity...and stopping taking it can cause convulsions, seizures, and organ failure !!!   I told the doctor I should have been told that before I started taking it...and I stopped immediately. 

 

Two years later my spasms are not so bad...but I do have a MOTOmed....an electric exercycle...and I think it should be a standard in health care.   It is just a marvelous machine!   I roll up to it, strap my feet in, and turn it on.  It will go 0 to 60...lol....rpm....I start at 20 and go up to 30...but I have gone as much as 40.  

 

Before I got this machine it was sheer torture getting on the commode.  I would try to spread my knees and put the leg spreader instrument between them, but my legs would spasm and send the contraption flying across the room!  Now I routinely do 10 minutes on MOTOmed before and my legs are completely compliant.  Once when I was having really severe spasms, I mean my knees were coming up to my chest, I got on the MOTOmed and it smoothed them right out!   Usually when it storms my legs will give me a bad time, but I was watching a movie and spent an hour and a half cycling and then went to bed.  It started to storm and they didn't even twitch!   My toes did buzz a little.....

 

It's a wonderful thing.  Check it out.   www.motomed.com   

Hi, I was recently prescribed oral baclofen for spaticity due to CP, but I have not started it. I am concerned about side effects. I drive, and need to do so in order to make a living! I am wondering if you drive and if you find that you randomly fall asleep, or if the drowziness is manageable....? I saw the dr to learn about options but after reading about baclofen the things that can go wrong scare the crap out of me! Thanks!

Hi ~ I take a low dose of oral baclofen (Mg- 4x daily).  I can safely take this dosage without getting sick (nausea/vomiting).  As you know drowsiness is a side effect, but I would think it would depend on how much baclofen you take.  I am fiercely independent and drive...The side effects are manageable at this point.  Good luck and take care!  ~ Trish