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St. John's University Cerebral Palsy List
Date:
Sun, 25 Jul 2004 20:15:53 -0400
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Hi Pam,

I'm sorry it took me so long to respond to this, but I've been really busy getting settled at my new job.  

Honestly, I wouldn't recommend the surgery I had to my worst enemy. I don't know if it would have been so bad if I'd been properly prepared, though.  A lot of the anguish was due to the fact that this had been billed as a very simple procedure, after which I would be able to return to my normal life.  That obviously didn't happen.  I had a series of four surgeries (the original implantation of the fixator, one to tighten the fixator, one to remove the fixator and put in a traction pin once it got infected, and one to remove the traction pin).  I was in traction in the hospital for six weeks, and was in terrible pain, almost constantly in bed, for about a month after that at home.  

Now, three years after the surgery, I do still have some pain.  Most of the time, it's probably a 3 on a scale of 1-10.  I'm not on any meds, because I'm still a student and I didn't like the way they made me feel, so I'm learning to suck it up.  The pain gets worse if I move that leg too far away from the midline of my body (can't remember the term).  It's also worse when changing position, when I'm too tired, in cold, or in rainy weather.  I do a little bit of weight bearing (lifting myself up to dress, transfers), but am not and have never been ambulatory.  I'd say that the pain is about the same as it was before the surgery.  I did lose a lot of muscle tone as a result of the traction and bed rest, though.  

Being honest, I know that I'm still very bitter about this experience and its repercussions, so I might not be the most unbiased source.  I'm sure that with a more honest doctor, and better post-op care, your experience could be much better than mine.  Please let me know if you have any questions!  I'll try to put aside my feelings and answer them as objectively as I can.

~Joy~

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