Wow!  Does Amber's hip story ever sound familiar!  Is her leg rotated at the
hip???  knee???  ankle???  In or out?

So what the surgeons are looking at is detaching the musculature, rotating
the femoral head and then doing the re-attachment, right?  Cast to the
waist?

I can speak to the other--if she waits and doesn't have anything done.  In
my case, there was a period of about 10 years (say 23-33) when I had pretty
good hip pain.  Same DX as Amber.  When I hit 35 "that" pain started to
subside.  Seems that the soft tissues in the socket gradually eroded until
the joint was "bone-on-bone".  All the cycling that I did in my thirties
polished the femoral head until it was smooth as glass.  No more pain at
that point.

She's got seven months or so of school, right?  Are you going to try to wait
until school's out?

-Kyle

-----Original Message-----
From: Trisha Cummings [mailto:[log in to unmask]]
Sent: Friday, October 08, 1999 10:49 AM
To: [log in to unmask]
Subject: Amber Quiet List


Hi Kyle,

   Oaky now that the tilt light is no longer flashing in my eyes - perhaps I
can give this more coherently. Maybe!! Grin

       Dec 95 - Amber saw a Dr Tosi at Childrens hospital to go into a
program using TES - she at that point rather briskly to me - Amber hip could
be becoming dislocated - bring her by for x-rays to see about surgery. I ask
Amber's physical therapist - who manipulated the joint and said she saw no
problem at that point. Now this Spring Amber developed pain in her hip when
she was running the mile in school. Hence the meeting with this
orthopedist - he has no vested interest - as he doesn't do this kind thing
and neither does his partner. They carefully explained about what was
happening - how the leg bone isn't seated correctly and is scraping the
socket when she stress it in a certain fashion. They feel that by putting it
back in it will  alleviate future problems - it would be a fairly simple
bone repositioning surgery now - ifwe wait until she is 20 - the joint will
have been damaged to the point of arthritis - a portion will need to be
removed and then rebuilt and screwed together - if we don't that then later
the entire joint will need replacing. Either way - Amber and I both saw the
scenario doesn't get any better. Amber was there for the whole discussion -
and said the pattern was obvious!! Things weren't going to get better! And
has no problem with the surgery. Did I ever mention I have the world's
greatest kid!!! I am going to follow his advice and make an appointment with
the doctor at Johns Hopkins - I am going to ask if - there is away around
this - but I suspect - there may not be at this point.

        As far as the scolosis - it is just beginning - She always had very
real possibility it would develop - evidently it has kicked in with the teen
growth spurt. He wants to see her every six months becasue it can rapidly
deterorate but for now its ok. He says the TES and stim have made a real
difference in the lack of severity of both problems. As this was mentioned
1st in 95 - when she had therapy - I am not beating myself up for this being
my fault due to the lack of therapy in the last year. I have done the best I
could to keep the CP from damaging Amber - I have won lots of battles and
plan on winning the war - but I guess this battle goes to the CP.

     I have emailed her father - (he is in Bosnia) to find out - since she
is still his child - divorce or not - what can the military do to help if
anything.

    Oh and to whom ever wanted Amber's Therapist name and address and
expeience.

     Shirley Beck
     1126 N. Frederick St.
      Arlington, Va   22205
      703- 524-7252

     Shirley has been a physical therapist since 1971 and has done e-stim
assisted pt since 1978 - just shows this is not a new thing!!

                                        Brightest Blessings
                                            Trisha

> Scoliosis is part of the game.  I've had it for years and it's just
> beginning to be a problem, so I wouldn't get too upset about it yet.  As
> others have said, get second (third, fourth,....) opinions on the hip.
Bone
> work on growing adolescents can be a sticky wicket.  But heck, you already
> know this stuff.  What's Amber's read on the hip surgery deal?