Sharon asked about this months ago, but I just rediscovered the question, which I had flagged as important, LOL,

Michael Carroll's infection disaster's demonstrates one of the down-sides to the implanted pump. And this risk is not only during the implantation but also every time you get a refill. I knew about this risk when I decided to get the pump; it is not the reason I gave up. I did minimize the risk of implantation complications by carefully selecting who I would have do the operation.

Another down-side is the cost and bother of having a refill every six to nine weeks. Them 20% co-pays add up.

To understand why I gave up, you need to know why I got it in the first place.

My spasticity manifested in several ways:

Excess tone in the right lower leg [pulling the ankle inward,]

Knee jerks - usually violent and not much else.

I could live with the knee jerks, but the excess tone was crippling me. [About the same time I had the pump implant, I had surgery to address the ankle problems.] Dr. Kerr assured me that the pump would relieve the tone; so did the surgeon that put it in.

It didn't.  After 34 increases in dose over 52 months taking the daily dose from 50 ug to 1250 ug, I was still waking in the morning with an overnight clubbing of the foot. I am now holding at 700.

HOWEVER, I have since developed a spasticity symptom I didn't have before.  Every night, when I wake after a few hours of sleep, both thighs & hamstrings are hard as oak; the kneecap is pulled at both ends. I can still flex both at the hip, but the right knee cannot flex unless I manually pull the calf back. By the time I am ready to get up, both legs are functioning. Sometimes I take 8 mg of Zanaflex/tizanidine - very effective.

I have not been bothered by knee jerks for over a year.

Alton

On Feb 22, 2006, at 11:27 AM, [EMAIL PROTECTED] wrote:

...
Hi Alton and all,
 
You say that you are giving up on the baclofen pump.  I have been pondering whether or not to have one put in for at least a year.
 
It seems as though there aren't many people out there who have them and it also seems like there are plenty of pros and cons.
 
Will you please explain to me and anyone else who might be interested, why you are ready to give it up?  I'd really like to know everything about it, from as many people as I can, before I go through the surgery and expense.
 
Thank you so much,
Jude

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