Baclofen pump concers- questions

[smiley84]

I am a 23 year-old female born with spastic Quadriplegic CP. I walk with the assistance of 2 canes. About 4 years ago I began experiencing a significant amount of muscle pain mostly in my left calf.  In October of 2006 I had my Achilles tendons lengthened. While the surgery helped to flatten my feet it did nothing for my pain. I have tried various medications and finally was told that I had two options. I either get a Baclofen pump, or have a selective dorsal Rhizotomy. I took what I thought was the lesser of two evils, and in January I had a Baclofen pump implanted.

Since that time I have been dealing with back pain due to what I believe is excessive spasticy and I have had spinal headaches off and on that have left me in bed for a week at a time. It has been sixty-five days since this surgery. Am I right in thinking that by now I should be functioning at or above my “ normal” level, rather then below it? Is it true that a blood patch cannot be done on a pump patient? Does anyone know if it is true that it can take 6 to 9 months for these spinal headaches to go away completely? Is there any medical explanation as to why these headaches come and go? It just seems so random. Can back pain cause such a headache? What are the ramifications of getting these pumps removed? Are there a high risks involved.

My pump is at the lowest possible dose. I am scared of getting it turned up for fear of being too weak to walk. I went from being active and determined, traveling to Europe helping orphans to now being weak and in much more pain then I had before I got the pump implanted. Can anyone give me some advice? Thanks!

[Lulu54]

I'm wondering how you are doing with the pump?  We have a member over at the MS forum who is having horrible problems with hers and it turns out it was an FDA Class 1 recall item .... if you want to know more, please drop me a note and I will send you the link.

I hope you are better,
Lulu

MS forum co-cl