Observe this --- Wait No More!

The x-ray is reviewed, and the doctor reveals your child has scoliosis.  What do you do?  Many parents probably don't know exactly how to react when those words first collide with their ears.  Naturally, a flood of questions build in their minds, while concern and worry elevate.  What is it?  How is this going to affect my child?  And the question at the top of the list is most likely- How do we treat this?  What can we do to help our child?  You may be surprised at the answer many parents are given, even still today--- which is basically "do nothing,” or in other words - Watch & Wait.  Watch and Wait to see if the child's curve progresses to a higher degree.  If it does progress bracing or surgery may be recommended.

According to the book “Scoliosis and the Human Spine” by Martha C. Hawes, Ph.D., The Principles and practice of current treatment options recommended through established U.S. medical channels are as follows: for Scoliosis of Ten to Twenty degrees ‘observation only’ is recommended.  “This means the child is brought in to see an orthopedic surgeon every three to six months or so to be radiographed until growth stops, even if that means a period of several years.”  If no significant increase in curvature is observed or the curve never increases past twenty-five degrees, then the child is no longer observed, and no treatment is given.  For Scoliosis of Twenty-Five to Forty Degrees, “the child is treated with what is called the ‘conservative’ or ‘nonoperative’ approach which in the scoliosis literature means treatment with an ‘orthosis’ or brace.”  Braces are typically worn around 23 hours a day until the end of growth.  This is done in an attempt to stop further progression.  Scoliosis of Forty to Forty-five Degrees, “if the curvature in a growing child progresses to forty degrees despite bracing, spinal fusion surgery is recommended.”

I'm a big proponent of common sense, and I find this approach lacking in every sense- if you know what I mean.  I don't understand why one should wait to treat a condition until it worsens; as when a condition worsens it gets harder to treat.  It seems to me that a condition would be much easier to treat at onset.  And there are doctors who agree. 

Like Dr. Clayton Stitzel who never recommends waiting and watching, as all large curves start out as small ones. He says, “Scoliosis treatment should be more than just an effort to dodge the knife.  It should be a comprehensive, all out, and genuine effort to help a patient get better.  However, the current treatment model (observation, brace, surgery) simply does not reflect this noble and lofty ideal and is entirely based on preventing the curve from reaching the arbitrarily determined 50° surgical threshold.  Observation is not treatment. It is simply doing nothing and hoping the curve does not get worse.  THIS IS CRAZY.  Do you know what all large scoliosis curves have in common?  They all started out as small scoliosis curves first!  I would submit that a child with a 20° curvature is no less deserving than a child with a 40° in terms of opportunity to fight back against the scoliosis condition and actually get better.”

Dr. Brian Dovorany says, “Ahead of the Curve - is probably the most important thing I could ever say to a parent of a child diagnosed with scoliosis.  Waiting 6 months to determine if the curve has gotten worse is by far the worst and potentially life altering advice a doctor could ever give to a parent whose child has a mild curvature of their spine.  Every day that goes by that child’s nervous system is remaining in an altered unhealthy state of confusion while soft tissue adaptation is occurring which strengthens this asymmetry and promotes further progression during growth.  Exercises that reprogram the child’s nervous system early on can significantly reduce spinal asymmetry and in many cases eliminate scoliosis prior to pubertal growth.” 

Dr. Nick Weddle says, "Parents who have been advised to watch and wait may prefer to take a more proactive approach and treat the curve while it's still small to reduce the chance of progression.  Scoliosis can progress quickly during periods of rapid growth which can cause a small curve to increase to a very large curve (to a size which many surgeons would like to fuse) in a short span of time.  Being proactive can help one stay ahead of the curve."

Me - Age 12  (First Diagnosed)

I was diagnosed at 12 years old.  I watched and waited while my curve eventually progressed to 42.5 degrees and the best a doctor could do for me at that point was to tell me - its best to just live with it!   What good did that do?  So I'm scratching my head and trying to figure out how this approach makes any sense. 

Me - After Watching & Waiting

There are Scoliosis rehab programs today helping kids and adults fight Scoliosis! Early detection and intervention is important as early detection leads to better treatment outcomes.  

So today I say 

Wait No More!

I am a voice of someone who has suffered the emotional scars of Scoliosis, someone who has gone through the pain, someone who has hid behind clothes! Please don't wait!  Treat this condition at its smallest for the biggest impact.  I desire others not to go through what I did for so many years!  

THE GOOD NEWS - today there are exercise based treatment options available to get ahead of the curve and start fighting immediately to reduce and stabilize curvature.

Me - Today (After Treatment)

I'm thankful because I started treatment as an adult 3 years ago, and it changed life for me!  My pain was eliminated, postural deformity and curve reduced, and confidence restored.  I'm so glad I have an option to fight now! This type of treatment didn't exist when I was first diagnosed; if it had existed I'm confident that I wouldn't have had to endure some of the things that I did through the years.  I'm happy that today HOPE exists, and that there will be kids that will not have to go through what I did because of it!

Here are a few of the Scoliosis Rehab Treatment programs available today.  Research them, and find out what’s best for you!  Many of these doctors have free consults to learn more, and discuss your child's specific situation.  

ScoliSMART: http://www.treatingscoliosis.com/
Located: Lititz, PA  -  Green Bay, WI  -  New York, NY  -  Grand Blanc, MI

CLEAR: http://clear-institute.org/
Located: Many Locations (Check website)

Rhino Scoliosis Center: http://www.rhinosc.com/
Located: Wheat Ridge, CO

ABOUT THIS BLOG & OTHER LINKS

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To learn about my scoliosis charity:

The Crooked Life Foundation

Also, I have a YouTube channel and blog called:
ScoliTalk which is interviews with scoliosis patients and doctors.  www.ScoliTalk.com

About Marce Kuhns:
I was diagnosed with scoliosis at 12 years old.  I tried wearing a hard plastic brace, but stopped due to the pain. I had no other treatment options other than to "watch and wait" to see what happened.  By my early twenties I was experiencing pain and had developed a noticeable postural deformity.  I was very self conscience, and did everything possible to hide my condition - never talking about it!  I visited several doctors throughout the years and was told it was best to just live with it.  This made me feel helpless and fearful for my future.  26 years after my diagnosis I found a rehab based treatment for scoliosis that changed my life!  It eliminated my pain, improved my postural deformity, reduced my curvature by 15 percent, gave me confidence, and eliminated my fear.  To make a statement that I would "Hide No More," I had my back painted and photographed.  This was a huge step for me! 

I began sharing my journey on facebook to spread hope and awareness The Crooked Life.  My pain became my passion! So much so that I left my job of 15 years to start working for the doctor who helped change my life to be apart of helping others with scoliosis.  In addition, my husband and I recently started a charity The Crooked Life Foundation to provide Scoliosis Activity Suits to patients who are unable to afford them.  Providing HOPE is my heart!