The Great Scoliosis Conundrum

One of the most frustrating things about scoliosis is the uncertainty.  As a parent of children with scoliosis, it can be maddening.  The root of the problem is that there is no way of knowing if a curve will progress aggressively… or not all.  You could do nothing, and it could never progress a single degree, or you can do everything and it can progress to the point of requiring fusion surgery.

Yet, this does not mean the curve is beyond influence.  There’s ample evidence that various treatments, including bracing, therapy, and even some surgical techniques short of fusion, can slow or halt curve progression … and even some evidence that diligent therapy may help reduce some curves, as can VBS and VBT surgeries (more on these another day).

There is a genetic test, called ScoliScore, that claims to predict the risk of progression but there’s insufficient evidence, in my view, and the view of several doctors with whom I’ve discussed it (or read their analysis), to rely on this, yet.

So, meanwhile, the best we have to go by are imprecise tables, like the below, that make broad generalizations about the percentage risk of progression based on age and present cobb angle.

progression risk chart ais

Having curves in the upper 20s, and being 12 years old, that probably puts my daughters at about a 70% or 80% chance of progression, if untreated… and I would say, “if not effectively treated”.

Clearly, there are no guarantees, either way.  We can treat and progress or we can do nothing and still have a 20% chance that they will stabilize.

My approach is to err on the side of aggressively doing everything we possibly can to reduce the chances of our daughters ever having fusion surgery. While that may seem obvious, this is not without a cost… and I’m not referring, here, to the substantial financial costs of braces and physical therapy that are inadequately covered by insurance, when covered at all.

I’m referring to the emotional costs to children and parents alike.  Our daughters must suffer through 21 hours per day of bracing and lose over a half hour a day of their leisure time to monotonous therapy exercises and stretching.  We spend our vacation time traveling to orthotists and scoliosis therapy specialists where, there again, we must subject the girls to activities which we’ll just call “unpleasant” for them.

All this for… who knows?  No one will ever be able to look at us and say, “Your daughters would have required fusion surgery if you hadn’t done all that and put them through all that.”  We must accept that we’ll simply never know.  All I know is that I’d rather see them avoid fusion surgery and never know if what we did made the difference, than see them have that surgery and be left to wonder if we could have avoided it if we had tried everything we could.

Disclaimer:  I am not, in any way, medically trained and you should seek professional medical advice before making any decisions based on information found here.

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One Response to The Great Scoliosis Conundrum

  1. Tina says:

    Oh my goodness, do I understand this! My children have juvenile Idiopathic scoliosis, but we, too, have spent much time and effort to get them the best, most effective care. I am glad to see another parent blogging about their experiences.

    Liked by 1 person

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