Brace Yourself! This might just work…

Recently, I emailed my wonderful Doctor, Dr. Li (University of Michigan Pediatric Orthopaedic Surgery), and asked her about her thoughts on “Alternative Treatments” for Scoliosis. I was genuinely interested because I knew she would give me a thorough and thoughtful answer. She is always open to great discussions and never tries to bully us into treatments. Her response was the simple statement that “Physicians practice evidence-based medicine.” Although I intrinsically knew this already, it was a great reminder of how important studies (ie, PROOF) are to physicians. Now, I have written before about my feelings that just because solid studies don’t exist on a treatment does NOT mean it doesn’t work, but as physicians, the only way they can make informed and ethical recommendations to their patients is through “evidence based medicine”. Dr. Li proceeded to forward on a couple of studies about bracing, which I read pretty thoroughly. Both studies, which were published in high quality, peer-reviewed medical journals, showed a positive correlation between brace wearing and non-progression of curves in Adolescent Scoliosis patients. One study, “Effects of Bracing in Adolescents with Idiopathic Scoliosis”, Weinstein, et al, even terminated early because the results were so obvious and positive that it was no longer ethical to spend the money to continue. This study showed a very positive correlation between hours of wear of a brace and a slowed progression of curves. They found most success in patients who wore the brace over 12 hours per day, with 17-20 hours being closer to ideal. The second study, “Brace Wear Control of Curve Progression in Adolescent Idiopathic Scoliosis”, Katz, et al, used heat sensors in Boston braces to determine the exact amount of time a patient wore the brace (the Weinstein study based data on the patient report of daily wear time, which may not be 100% accurate). They also found that wearing the brace for over 12 hours per day (ideally 17+ hours) showed a very positive correlation between hours of wear of the brace and a reduced progression of the curve. In both studies, patients wearing the brace close to prescribed amounts had a greatly reduced chance of progressing to surgical levels.

While reading the studies, I had a few thoughts of my own. First of all, I felt happy that the traditionally prescribed treatment is effective, yet thought it important to point out that the studies didn’t show proof that Boston braces IMPROVE the curve – they just kept it from progressing past surgical level. The braces used were Boston braces – which are not even the most updated, effective bracing technology available, in my opinion (my favorite is the Rigo-Cheneau RSC). So, the data is very hopeful. Not every family can afford to go off the beaten path to explore alternative therapies – many of those alternatives are not covered by traditional medical insurance. We got our RSC braces covered through our health insurance plan because they are TLSO braces and were prescribed by our Orthopedist. We just had to go much further to find a clinic capable of making one (and incur the cost of travel). Another point I wanted to emphasize, is that bracing is much more effective at keeping curves under surgical levels the earlier they are braced. While people don’t want to brace unnecessarily (for the other side effects, like weakening of the bones), you will get the best results treating a curve before it gets too far (30 degrees is my cutoff). My daughter wasn’t braced in her RSC until she was already over 65 degrees. Our objective at that point was delaying surgery. We could not get any correction. My son was braced in his RSC at 28 degrees and was down to 10 degrees in a year of full time bracing. So, my philosophy is always that it is better to brace when the curves are smaller. The last thing to mention is that, while both studies showed better results at greater lengths of wear, our Orthotist and Doctor stressed that time OUT of the brace is also important every day – time to strengthen the muscles, do some high impact exercise to strengthen the bones, etc. There can be too much of a good thing when it comes to brace wearing time.   And, my last observation is the sheer importance of making the Scoliosis patient as comfortable as possible in-brace. Comfort in-brace increase compliance, which, in turn, increases success. The formula is simple. The Weinstein study had the participants complete a quality of life survey. The participants in brace were not much different in their quality of life scores than the participants out of brace. This is really hopeful information! However, the greatest complaint of the brace wearers was discomfort of their skin under the brace. This just reinforces to me why I have made it my mission to make patients as comfortable as possible in-brace. Because, whatever treatment you choose -whether traditional or not – your success with that treatment is through compliance.

So, if you (or your child) were just prescribed a brace, take heart. It may seem like a daunting treatment, but I can attest (and the studies can verify) that your quality of life WILL improve, that you WILL find coping strategies, and that there IS hope for success if you can find a way to work the treatment into your lifestyle. It’s just so much easier to brace yourself when you think “Hey, this just might WORK!”

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HONK! If you can relate…

This week was very fun for me – and, fun, as a Mom dealing with work, family, and kids with special needs, (fun just for MOM) can be rare.  But, it was mainly fun because I got to audition for another musical with one of my favorite Community Theater Groups T’ACT (Thumb Area Community Theater).  The show is HONK!  If you have not heard of HONK!, it is a musical adaptation of Hans Christian Andersen’s “The Ugly Duckling”.  I went into auditions with a clear idea of the part I wanted – the part of Ida, the Mother and one of the lead characters.  Now, most community theater junkies like me will admit that we want lead parts.  But, this part, in particular, spoke to me like no other before.  That is because Ida is a devoted Mother who will go to any length for her very different child, named “Ugly”.  Even though it’s a really not-so-nice name (It IS also a comedy, after all), I could totally relate because I have two kids, who are different – and may not look as perfect on the outside as every other kid.  Their spines may be curvy, and their backs not straight.  (There is even a line in one of the songs where they taunt Ugly by saying, “He needs a brace to keep his bill straight.”) Yes, my kids are different – but so SPECIAL because of it.  And, I have and will always go to any length for them – no matter how far they get off the path, how many people are against them, no matter how old they get – I will have an Ida-like devotion to them.  And, this is not just in spite of, but, sometimes BECAUSE they are different.  Sometimes we Moms of these special, amazing children, that the world may deem “ugly” really need to fluff our feathers up and protect them with all we have.  Sometimes we have to leave the nest and journey far to get them the treatments and care that they need.  And, sometimes we have to stand up to a brood of unruly and ignorant (and sometimes unkind) “farm animals”.  But, we wouldn’t have it any other way.  It is in our nature.  So, regardless of what happened at auditions, I knew that I  had been Ida before and she would hold that special place in my heart.  And, incidentally, I will be Ida again in July, with my two “real” ducklings on stage as two of my stage ducklings.  I feel honored and blessed to get to have fun, while portraying a part with purpose.  HONK! if you can relate…