Tuesday, June 28, 2016


Many thanks to Kelly for letting me hijack her blog for an important topic to me.  Scoliosis.  You may remember me from a couple of years ago when I did a guest post about my daughter Allyn’s scoliosis here.  Well, Allyn still has scoliosis.  It’s still severe. 

 Allyn did serial Mehta casting for two years and then last year we were thrown a curve ball.  Last year we discovered that Allyn had two holes in her heart that needed to be repaired.  (I wrote a bit about the discovery process here and a few posts about the process to repair the holes.)  Allyn was switched to a TLSO brace for about 10 months while we figured out what to do about her heart and then allowed her to heal after her surgery.  During those 10 months she lost all of the correction she had gained during those two years of casting.    Allyn didn’t grow a lot during those first two years of casting, so she really didn’t realize the full potential that serial casting can provide to a young child’s growing spine.  It was probably heavily related to the poor health of her heart.  I could write a whole post on how I still don’t understand how so many doctors missed her heart issues for so long.  But it’s fixed now and we move on.  

But now I know, a brace is not the answer for young children.  Allyn’s spine was so flexible and her curve was severe enough with enough rotation that the brace just couldn’t hold her correction.  I also believe that the splitting of her sternum during her open heart surgery took away quite of the stability that her rib cage was providing her spine.  That coupled with no brace during recovery, and well, now we’re back where we started.  If you have a child that is younger than three or four years, and you see an orthopedic spine specialist and she suggests a brace, I would recommend finding another doctor.  Of course, that’s just my opinion. 

We learned more about Allyn after her heart surgery.  She has a pretty rare genetic disorder known as Tetrasomy i5p Mosaicism (and there are fewer than ten documented cases).   I was hoping with a diagnosis that we would know more about how to tackle getting her spine straight.  Well, this particular diagnosis is so rare, it really doesn’t tell us anything.  
So ultimately regarding Allyn’s scoliosis, we are back at the beginning.  But things aren’t worse and we know so much more.  She is healthy(ish) and gaining weight.  Due to her genetic disorder she will most likely always be short stature, but our geneticist says with tall parents, short stature for her could just be average on a height spectrum.   I pray that serial casting provides her with some correction, and what a miracle it would be if it got her to a place where she didn’t need surgery for a long long time.  

But with all of her issues, why Scoliosis?  Scoliosis is where our journey began.  It’s where this sweet little girl and our family began our fight.  It’s still the nearest and dearest to my heart.  And maybe it’s because I have scoliosis too.  

That’s me.  I debated even including this because it’s so much of me.  My scoliosis isn’t as severe as Allyn’s.  X-rays last year revealed an upper curve of 20 degrees and a lower curve of 21 degrees.  But my presentation is pretty classic.  And as I have aged, my pain has become more pronounced.  I have a constant ache in my right trapezoid.  It lingers and no amount of stretching or massage seems to help at this point.  Clothes don’t fit me well.  My abs became weaker as my spine began to rotate.  But I do what I can to manage.  I began Pilates training about a year ago and the awareness of doing exercises has made me more focused on my core, and with that focus I have noticed less pain.  But the structural changes to my spine are forever.  I often wonder if my parents would have noticed my curve and I would have had any form of intervention, if this could have been avoided.  

And that is why I fight for Allyn.  I want everyone to know that scoliosis isn’t just a little thing.  My back is deformed.  That deformity is something that makes me feel less beautiful.  Along with the physical piece, there is actual pain, a pain that I will most likely live with for the rest of my life.  (I should say I didn’t really have any pain until I was in my 30s).  Aside from her back and her heart and her genes, Allyn is perfectly perfect in every way.  

She is sassy and fun.  She has proven she is a warrior.  And I have said it before, even though it’s one of those things I just find so annoying to hear or repeat, but she is going to change the world.  She’s got a loving spirit and infectious joy that you just can’t comprehend until you see her. 

Given the possibility that scoliosis has some genetic component,  I stress about my guy too.  I check his spine every couple of months to make sure there isn’t any sign of anything.  And I have his pediatrician check during is well-child visits too.  
So during the month of June, Scoliosis Awareness Month, how can we all take a few steps to become more aware of a condition that affects about three percent of the population?
  • Well, let’s start with the number of people scoliosis affects.   Why are we not talking about a condition that touches so many people?  An estimated 7 million people have scoliosis in the United States and there is no cure.   
  • Where is the funding for scoliosis?  If you spend any amount of time in a scoliosis group, you learn very quickly there is a lot of money to be made.  There is hardware and special therapies.  And there are some doctors that promise cures.  But most of these expenses are from the pocketbooks of desperate parents.   You just don’t hear a lot about scoliosis research.  What is causing it and what can we do to prevent it?   Rather than focusing on fixing, we should find a way to donate some resources to a cure.  
For scoliosis screening, what should we be looking for?  The most popular test is the Adam’s Forward Bend Test.  But you can also look for asymmetry in the torso, hips or shoulders or a head tilt.  Allyn’s first presented as what looked like a really tight muscle on one side of her back.  
If you suspect scoliosis, find a qualified doctor.  Not all orthopedic doctors are qualified and some are really on qualified in certain areas.  A doctor that sees a lot of children between the ages of 10 and adolescence isn’t going to be the best doctor for a baby or an adult.  Do your research.  Research doctors, research treatment methods, but don’t be willing to try anything, especially those things that have a lot of up-front costs and come with a lot of promises.  
There are a lot of really great organizations like The Children’s Spine Foundation and SHIFT Scoliosis that can help parents and teens navigate the world of scoliosis and find support.   
And as always, I’m willing to help where I can or do my best to point you to resources.  If you have any questions, I can be reached at snscarbrough(at)gmail(dot)com. 

From my sweet girl and me, “Happy Scoliosis Awareness Month!”

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