Mace' update:retroodontoid pannus?? platybasia?

[kelly1432]

NS said the problem is comming from her odontoid,despite the fact  bone removal was min.during surg,it seem to have made the adointoid a bit more unstable,Grab's mesurement was at a 7 prior to surg,it has now moved beyond 8,I will be presenting her case at the weekly discussion at TCI on Mon,until then stick w/conseritive measures for treatment. I called TCI, the nurse said the only thing she could tell me was that Mace' was approved for surg. WHAT?? I asked what surgery??She replied IDK u will have to wait til the Dr. contacts you. personally to explain the details. I still have not heard from him.  I am at loss for words, here are her newest symptoms, face feels like on fire? feet feels like on fire/Very red but cold to touch,ringing in ears along w/pain loke ear ache,her heart rate 187,numbness various places @ various times, CHEST pain that NEVER goes AWAY,along w/the nausea that NEVER goes away?Again I contacted her PCP, regaurding POTS? The DONKEY told me to take her back NY,they know more about her condition then I do!!! I push through my daily pain,for the sake of my children,it is becomming HARDER EVERY DAY,I PRAY I have the strength to make the right decisions for my girls & myself.

[irislita]

I was hoping surgery would relief her...but u will get ur answers.at least the doctors found out she needs further help!!!

[selmaS]

  The photo bug is fixed....u should not have a problem posting a pic now

[selmaS]

  Most that require fusion do have EDS.....didn't they tell u b4 her other surgery?

[kelly1432]

In the Dr.Diana vidoes she scoces a 6. Dr B sched. her for a fusion on thurs. I am hesitant thinking she may have eds? He said we would go over the spicifics during the pre op? very scarey from what I can tell

[selmaS]

  Sorry there is a bug in the system and they r working on it, I noticed some of my pics were MIA, so I asked and just found out.

   I will let u know when it is fixed : )

[kelly1432]

Well i wish i would have read that sooner :) thought i was loosin my mind!

[selmaS]

  Hold off on uploading pics right now...there seems to be a problem....I will let u know what it is fixed.....

[kelly1432]

Nf DX as of yet. she is sched for a bone dens. scan,she does have flexible joints,I will post the pics on my profile

[Sexybare]

trust yourself...you know best for your children....keep pushing for more answers...it wil all work out....be persistant. i am so sorry your family is dealing with this awful condition. i hope today is a better day for you all. keep us posted please.                                                  Dana