Monday, 23 January 2012

New specialist, new brace

A few months ago we had an assessment with a new specialist. We discovered a spinal surgeon in Sydney that has hands on training in Mehta casting and wanted his option on Evelyne's spine and the possibility of casting in order to postpone surgery.

He informed us that bracing is not very effective in controlling the curve once it's over 40 degrees (as we knew). When he examined her the curve was over 50 degrees in the brace, and so he suggested the best way forward was to try Mehta casting to attempt to get the curve under control.  We decided that over the summer before using Mehta casting that we would have one more attempt at bracing with a new design methodology. 

The new brace has been more uncomfortable and restrictive with numerous complaints from Evelyne when putting it on and more when traveling in the car. It also has a tendency to put holes in her clothing. However after 4 weeks in this new brace, today we had an x-ray. The x-ray showed a curve of only 41 degrees! It is encouraging to see that the brace has reduced the curve, however we will still have to monitor how well she is tolerating the discomfort and watch for any pressure areas. The next few years will be a juggle between wanting treatment to be effective, but making sure it is able to be tolerated by Evelyne.


  1. Hi Louise,

    I started reading this after you posted it and got distracted.

    How much longer do you have of summer weather?

    I know you follow our story, but I just wanted to share our experience with you as far as tolerating treatment. Andrew is a happy crazy kid in his cast and we have never had any sores whatsoever. It can be a balance game with getting too warm in the heat though....but if you have the option for a properly applied Mehta cast, I want to encourage you to try that when it is best fitting for Eve. I know she has an underlying condition, but proper casting has literally changed our lives! I'm hoping the same for you guys and that surgery can be prolonged until her body has had lots of time to grow! I really beleive it's possible it will be more comfortable for her and more effective with her curve than bracing.

    Keep fighting mama, you are doing a great job!

  2. Hi Jamie,
    Thanks! I only just saw this comment, for some reason blogger has stopped notifying me of comments....
    The plan is to go to a cast soon. We have found a specialist in Sydney with hands on training and are seeing him agian next week. I daresay we will have a cast date after that appointment
    Thanks for your encouragement. I'm so excited about Andrews progress :)

  3. Bracing just holds things in place until surgery. I know there is research that shows bracing actually helping scoliosis at times - but are these children with neurological diseases? I wouldn't imagine so. Doesn't fix anything in my experience, just straightens while wearing. Some Orthopeadic Dr's act as if its some kind of actual fix ("wear it for 23 hrs a day or it won't work! - very naiive instruction for children with respiratory problems, and just plain mean making a child wear during sleep) - or perhaps they just dont communicate properly being as busy as they often are (have you ever felt that? Like this is your whole entire world and you get seen for only 5 rushed seconds? And then everything they say is countered by dr's in other specialties leaving it up to you to weigh all the information and decide what is right. Mom= Doctor, nurse, diagnostician and physiotherapist etc etc, YOUR the one that ends up making all the tough calls. You know your child better than any doctor, so perhaps that is the way it ought to be, but its hard. Not that all dr's are like this, just sometimes, but still.) If she could somehow get her tummy free in a brace, I think she'd breathe better. A free tummy helps so much with breathing while the chest is surround by tightness. There is this new brace that is much more flexible too - less layers of torture and more comfort while still straightening. Shriners Hospital for Children in Salt Lake City UT do them. You could contact their orthotics dept and ask what this bracing is called. My daughter found it reeeeally comfortable compared to her newer more rigid one (done in California by a different orthotics guy who does things in a more old fashioned way). Both of my children have a rare form of muscular dystrophy called Rigid Spine MD, congenital, with a lot of similar features to your daughter, and are facing the daunting, inevitable spinal surgery very soon. Particularly my daughter whose scoliosis is now 85% at age six. Anyhoo, thats how I got on your site and it is very good. Thank you. Know that all of your effort here is helpful to other people too.