What about trying a hip brace first?


Chester

--- pam <[log in to unmask]> wrote:
> 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. =20
>
> 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
> [log in to unmask]
>




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