Hi all,

I've been back on the list for a few weeks after being away for several months because of work, ISP problems, etc.  It's been good to see the list active again, both in support and political banter.  It's a rare list that can go from arguing in one post and real support in the next.

I write now in hopes of getting some advice on a CP related health issue.  My left hip is dislocated and grinds in and out of what's left of the acetabalum hundreds of times a day.  I get into the good old CP pain-spasm-pain-spasm cycle, and it's really not fun.  To break the cycle  I'm taking major meds to calm my spasticity, which in turn make me sleepy.  Just within the last few days I've found a pattern of taking meds that leaves me moderately comfortable for a good part of the day and cognitively on for a good part of the day.  But I can't keep going like this, my body is tearing itself apart.  I'm afraid to think about what the meds are doing to my liver.  I'm not able to work.  grumble grumble grumble...

I do have hope.  I have a great community of people who are pulling for me and praying for me and helping in whatever ways they can.  My husband has been very supportive.  And I found a good doctor, which as you know is no small feat for an adult with CP.  This guy is brilliant and honest and kind.  

He's offered me several options, one is hip fusion, which with my sounds horrible, given the athetosis that's mixed with my spasticity.  The other is called the modified Girdlestone procedure.  ~Joy~, I seem to remember you having this procedure the summer before your freshman year.  I remember you had much pain afterwards that you didn't expect.  I'm wondering how you're doing now.  Are you in pain?  Do you weight bear at all?  How is your flexibility in your hips?  And the big question again, how is your level of pain??

This doc is proposing to remove the top third of my femur; to wrap both the new end of the femur and the acetabulum with the muscles that won't be used any more to keep the ball in the socket; and using an external fixator for 6 weeks, allow scar tissue to form between the femur and the pelvis. The external fixator would screw into my remaining femur and my pelvis, the screws would come out of my skin and be attached to a metal bar which would hold the bones apart (I'm getting used to the idea, but at first it sounded pretty horrible). If I remember right, Joy, you were in traction for 6 weeks, this doc doesn't want to risk my getting pneumonia.

I would really appreciate anything you could tell me, either on the list or privately, about your experience with this surgery.

Thanks very much.

Pam
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