This has been a long, continuous journey that has never gotten predictable!
In the beginning – Fall 2009 – Makenna’s curve measured 20 degrees. This is a VERY small curve. Borderline for treatment, actually. However, considering more than the COBB angle, the doctor felt there were two reasons we needed to act swiftly and begin casting. First, the underlying genetic condition of Horizontal GazePalsy with PROGRESSIVE SCOLISOSIS sent a red flag to take notice. Second, her RVAD reading was high. RVAD is a secondary reading on an x-ray in early onset scoliosis that can be used to predict the likelihood of progression. An RVAD of greater than 20 degrees has an 84% chance of progressing. Makenna’s was 39 degrees.
Makenna began casting in November of 2009. In each cast, she was perfectly straight. After a series of 4 casts she transitioned to bracing in October of 2010. She maintained straight in brace through our appointment in May of 2011. I felt like we had beat the beast!
Then in July of 2011, she measured 13 degrees. A small slip. Not much to be concerned about (from the doctors side!). We continued with bracing – even lowering the amount of time she spent each day in brace. By November of 2011, she was till measuring 13 degrees and we were only bracing at night. She was still 13 degrees at our last visit in March 2012.
Tuesday (October 2012), she measured 22 degreesL
When I saw the x-ray, my heart sank. It looked familiar…but not normal. And then I saw the little yellow lines marking her vertebrae – with a seemingly innocent calculation of the curve… 22 degrees. 22 degrees is manageable. 22 degrees won’t interfere with normal function. 22 degrees is a milestone for some and a goal for others. Many, many of my dear friends with children on this up and down journey would be overjoyed to hear 22 degrees. So there is a large part of me that wondered why in the world this brought tears to my eyes. But the other part of me simple couldn’t help it.
The only math my head was calculating was that there was an average progression of 10 degrees each year.
We simply can’t continue that trend…
I could spend a lot of time trying to figure out how her curve crept back up. Didwe wait too long to go back? Should we have pushed for a new brace in March? In the long run, it really doesn’t matter how we got where we are. It just matters what we are going to do from here.
Her doctor is, of course, concerned. But let’s be realistic…if a five year old
walked in off the street with a 22 degree curve, most doctors wouldn’t do
anything. Like I said earlier, if she comes out of this as an adult with a 22
degree curve, there won’t be any effect. She won’t even notice. When I first
found her curve no one believed me. You can’t see it (well, I can…) and it
doesn’t interfere with her daily functioning or her vital organs. Even if it got
to 30 or 40… still wouldn’t matter. She could function…probably wouldn’t even need surgery or have any pain.
That was actually the hardest part of the visit - when her doctor outlined the normal treatment for someone Makenna’s age with her curve (even knowing the underlying condition). Brace. Hopefully contain/maintain. Carefully watch. If it progresses to 30 or above then we adjust the time in brace. We don’t know what the curve is going to do. It could stay right here. It might get a little worse. It could take off and we could lose control of it– then we’d talk surgical intervention. That’s the pragmatic view from the doctor side.
Wait… What?! Why am I having this conversation? We did everything
right… We caught it early. We got proper treatment right away. We diligently researched to find the underlying cause to pass the information on to the doctors who care for her. Why is surgery back on the table? Why? And I know realistically it’s not really back on the table at 22 degrees. But the very fact that he mentioned it… just sticks in myhead.
From the mom side… I just want it to go away. I want to fix it. My goal is zero. I am a control freak. I want a logical answer and hard statistics. I believe in “if X, then Y”. Unfortunately, scoliosis doesn’t work that way. There is no charted path. No statistics to predict what may happen with any given curve. NO control. NO set outcome. SUCKS!
Throw into the mix that Makenna has HGPPS and it’s all just a shot in the dark. I just have to keep faith that there is a gift here, somewhere. And that it will all work out however it is supposed to. I have to let go…and let
So, the plan for now is this. We molded for a new brace. It will have pressure padding and will be higher on her left side with a hole on her right. I am hopeful it will provide some correction.
Friends have asked me if they will re-cast her. The answer is “NO”. Not for her. The genius of casting is found in harnessing the rapid growth of the spine in the first two years of life. When the growth is not as rapid, most research indicates that the same correction (or hold) can be achieved by bracing. I know lots of kids still being casted who are older than Makenna. Their circumstances and curve are completely different than hers. Casting is the smart option for them, but not for Makenna. This is hard to hear as a parent because I have been indoctrinated to believe that bracing is for the birds and will only hold the curve. Bracing has come a long way. Hospitals that regularly do casting have orthotist in the OR during the procedures. These orthotists are seeing the results and appreciating the corrective ability of carefully ‘realigning” the body while molding. They understand the goal is to gain correction rather than simply hold the curve. An orthotist with this experience and goal is who will be making Makenna's brace.
I feel at peace with where we are and what we are doing. It was a rough week, but in the end, I know it will all be ok. I’ve done a lot of research this week and reached out to a lot of old contacts. It’s funny to phrase it that way. I’ve emailed lots of people that I’ve emailed in the past who have been kind enough to answer me before – that’s more to the point. Doctors and researchers who are studying HGPPS, or Vertebral Stapling, or the underlying causes of scoliosis. I've got some replies already, which speaks volumes to the importance of asking questions and the generosity of people invested in helping kids and families. I’ve also got some innovative suspension therapy lined up and have been thinking of things we can do to help even here at home. I told you… I’m a control freak:)
As Makenna has come “full circle” with her curve, I, too, have come full circle with the lessons I’ve learned.
You can’t plan everything.
You have to remain open-minded and flexible.
Sometimes, things just don’t go your way.
You have to find a way to find the positive in every situation.
You will never be handed a challenge you can’t meet. It may require asking for help, but you will meet the challenge :)
All of these are important lessons. Hard to learn, but valuable to know.
We are blessed.