Speak up – respectfully – for Scoliosis success

Hi everyone.  First off, thank-you so much for the comments that keep coming in – I love to hear from you all.  Unfortunately, I sometimes don’t see the comments right away, especially because I have been SO BAD about blogging this summer.  I apologize – I usually like to read and respond to everyone, so I am not purposefully ignoring you if you comment and I don’t respond.  I got sidetracked, not only with the demands of a family on summer break, but with a side project at EmBraced In Comfort that has taken my focus a bit off of the Scoliosis realm.  It is just temporary, however, and I hope to be back full-boar in the fall, increasing the laser focus on helping the Scoliosis community.

Until then, I thought I would share some thoughts inspired by some of your comments.  I have written similar articles before, but some things just really need to be repeated.  And, besides, who has time to week through the over 100 articles that I’ve written over the years? 🙂  Seriously, here are some thoughts for today:

1.  It is ok to disagree with your Doctor.  WHAT?  What do we humble non-Doctors know about Scoliosis when faced with a conversation with a world class surgeon?  Well, don’t hand me a scalpel anytime soon – what I am referring to is disagreeing on certain things, respecting and understanding WHY they feel one way and you another.  FOR INSTANCE – bracing.  Most orthopedic surgeons will tell you that bracing will NOT correct curves and will probably not even help.  However, they still prescribe bracing regularly to “hold off” the growth of curves.  They may also say that curves CAN get better while bracing, but that this could be a result of a number of factors, including the growth of the patient effecting the curve in a positive way.  They are completely correct in this respect.  The issue they are dealing with is that there are no affirmative studies to show bracing works.  While I have not thoroughly researched all the literature and data (believe me, when I get a free week, I would like to do just this!), but I have my theories.  First off, research has to be funded.  In all the things that need funding, I think funding for such a study is difficult.  Secondly, from a scientific study perspective, there are just too many variables in such a study.  How can they prove that bracing works or corrects curves when there are just so many variables (age of patient, growth speed, degree of curvature, plus what the heck would they do for a control group)?  Thirdly, and my favorite of my theories, given the way that bracing is currently used in our Scoliosis “world”, braces are not prescribed at the times when they will be most effective at re-directing curves – they are usually prescribed when the patient is already in the 30’s, curve-wise.  In my humble opinion, we would probably see VERY different results if braces were always prescribed when the patient is in the early 20 degrees.  THE EARLIER THE BETTER!  That is why, when my son hit the 25 degree mark, my husband and I said “We want an RSC brace…please, please, pretty please.”  And, our Doctor may have thought we were off our rockers, but she wrote the script!  We didn’t have to agree – we respected why she didn’t think our course of action would bear fruit, and she respected that we had a plan and wanted to try anyway.  And, in my small study of 1, it worked!  My son was down to 12 degrees in a year and he’s still holding (with no bracing).  The last aspect of this is: there are SO MANY different types of braces out there.  I will cut this short.  My favorites: The RSC (for more aggressive, early curves), and the Scoliosis Activity Suit (SAS) (for the smaller curves in older patients, especially if they would not comply with a regular brace).  And, by the way the SAS is not really a brace, because it works differently, but for these purposes, I will say that I like it.  And, it’s new, but they are getting studies that are looking good. 🙂

2.  Be respectful.  Your Doctors know what they are talking about … but, the problem becomes: which Doctor?  I had a team and they all had different opinions (I will lump my Orthotist Luke in here because, while he is not “technically” a Doctor, he is a critical part of our team).  So, we had our Orthopedic Surgeon – we have loved both we had.  Both are very knowledgeable – I respect both, but we didn’t always agree.  But, we collaborated.  An Orthopedic Surgeon should be willing to collaborate and should respect your wishes with your child (or yourself).  If not, chuck them.  Then we had our orthotist, Luke.  He’s a dream, and that’s all there is to it.  I respect him, too, but he didn’t always agree with my Orthopedic surgeon or with us.  Hmm…what to do.  Then, there was Dr. Morningstar – our Chiropractor/SAS expert/ARC3D guru.  I respected him greatly, and he definitely knows his stuff, but, again, we didn’t always agree with the other two.  Boy oh boy.  So, the point I am making is that I respected everyone in my “team” and they all respect us (or they would not be on my team), but we don’t always agree and they don’t agree with each other.  So, you need to advocate for yourself and your child and come up with the plan YOU want.  Do your research, but don’t be afraid to RESPECTFULLY disagree.  And collaborate.  And, then thank them for being awesome. 🙂

PS I’ve linked to some of my previous similar posts in the text here, but then got exhausted because there are so many! 🙂 So, one should lead you to another.  Happy reading.