Hi Kyle,


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

   Her leg does turn out and her foot points of to the side. I don't know of
its at the hip, knee ankle ot what - its points 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?

     Well, we are asking some questions here I don't have answers to yet - I
got a second opinion - now we go I guess for the third - after I get a
referral from her pediatrician. Then we get his take on it and how he
proposes to fix it - I still have other options of places to take her. What
I know at this point - bone has worked its way out of poistion in the
socket - it is damaging the bone of the socket - and needs to be realigned -
( as does my sanity at this point)!!

> 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.

  Well, my concern is more for when she is female- women when they get
pregnant our hips migrate to accomdate the baby - becasue my hip was bady
damaged when I was young - I had immense amounts of difficulty walking after
this happened to accomodate Amber. We have different stresses on our bodies
due the gender difference - its incredible how much you have to take in
account when making decisions.

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

            If it can wait that long - it will.

                                       Brightest Blessings
                                             Trisha
>
> -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?