Wednesday, August 7, 2013

Alyona's Doc visit at Duke

On Monday, Alyona had a visit at Duke Ortho.  She's been there before to correct a botched surgery job done years ago on her radial articulation.  She has permanent damage.  Long story.  Anyhow, this time she was going due to recently found scoliosis.  We took reports from our doc as well as the x-rays.  They did their thing.  Nurse and doc measured her and reviewed reports.  Alyona will be receiving an MRI on August 16th at the Duke Cancer Center Radiology.  After that, we will determine where to go from there. 

Alyona's scoliosis was a sudden onset.  As in we went on vacation and she should no signs of it.  Have pictures of her.  Around 2 weeks later, it was dramatically different.  In addition, curves to the left.  When they checked her reflexes, none on her stomach.  Typically, they said all those factors indicate some sort of pathology going on.  Both our doc said this and the docs at Duke.  The doc at Duke believes there maybe three possibilities here with her.  First, nothing going on but straight up scoliosis.  Obviously, this is what we're shooting for.  Second, some sort of Chiari malformation.  Final possibility, spinal fluid collecting in a balloon type fashion and pushing the spine out.  MRI will tell us which one is the most likely to be going on.

That being said, options.  Her percentage is too far gone to brace it.  Bracing option is out.  They only will brace at 30% or below.  Now, that brings us to Alyona.  She is in what they call the gray area where they take the wait and see approach until something gets worse.  Alyona's percentage is at 45%.  At 45 to 48 is the "gray" area.  However, Alyona is also in pain.  That's actually a good thing believe it or not b/c that means most likely, no tumors or things of that nature are the cause.  But, being in pain w/ scoliosis is not good either.  Crazy how all this works, huh.  So, after the MRI, we will see what Duke says.  We will be getting a second opinion to be sure as looking like more of a surgical option will be taking place for Alyona.  Our second opinion will come from the Shriners Scoliosis Team in SC.  Her appointment has been made already.  Was made during Bojan's surgery last week.  It will be in September.  So, that is where we stand.  Keep you posted the next few weeks. 

1 comment:

  1. Stephanie, Wow, hope it all works out ok for Alyona. I just found out on a well child check up, my 12 year old has a small curve and was told "we will watch it." I don't know the degree and I am uncomfortable with that idea, she has a lot of other problems (due to birth mom's alcohol) and I am worried. I wonder if I should get a second opinion? Is Duke the only place to go for that?