HOPE for Adults with Scoliosis Pain

I am very excited to announce that my FAVORITE treatment for adults with Idiopathic Scoliosis pain, SCOLISMART, is very close to going direct-to-consumer with their Scoliosis Activity Suit (for adults only).  This is going to open up amazing possibilities for Adults!  Go HERE to sign up for notification of when they release this groundbreaking new program.  In my personal opinion, this is THE BEST choice for adults with Scoliosis pain.  My Spinecor readers might balk at that.  Know that I still love and support Spinecor patients in every way I can and am thrilled when I hear of anyone getting relief from their Scoliosis, but I stand firm in this opinion.  If you are choosing between the two, choose Scolismart.

That said, I am launching a three part series of the Scoliosis Activity Suit, where I will review the three latest studies done by Dr. Morningstar and his team  of Docs.  This week, I’d like to focus on their 2015 study from the International Journal of Clinical Medicine.  You can find the entire study HERE.  The paper is titled Pain and Radiographic Outcomes in Adult Idiopathic Scoliosis Patients Using a Scoliosis Activity Suit: An 18-Month Case Controlled Chart Review. by Mark Morningstar, Aatif Siddiqui, Clayton Stitzel, and Brian Dovorany.  It’s a mouthful, but I’ll try to break it down for you  here…

Let me first start by saying that there is a REASON why so little literature exists regarding alternative Scoliosis treatments.  The data is very hard to attain.  Think about it: there are so many variables, so many different cases, so many years over which treatments are performed.  It’s a testing nightmare.  And, it is expensive.  That is why your Doctor will tell you that they can’t recommend these “alternate” type treatments – they have to base their recommendations on research, and the research just isn’t prevalent in this area.  I feel that the Scolismart Docs have done a great job of getting us some data to help us make decisions.  Is it perfect data?  No – but it seems pretty scientifically sound, especially for something that is so difficult to get data for and I applaud them for continuing to fight the good fight to get us real information.

That said, this particular study followed 53 adult idiopathic Scoliosis patients for 18 months.  It was a chart review – the doctors went back over their data on their own patients and compiled it into this study.  As a control group, they used a study done by Marty-Poumarat, et al, which can be found HERE.  The demographics for the two studies were close enough that Dr. M and crew felt that they could safely compare their data to that of Marty-Poumarat.  The Marty-Poumarat study found that when an adult has a curve of 30 degrees or more at skeletal maturity, there is a 68% chance that it will continue to increase afterwards, at a linear rate.   In other words, any adult with a 30 degree curve or greater can expect their curve to continue to get worse over time.  Wow.  So, Scoliosis does not end at Skeletal Maturity as most people are led to believe.  Dr. M and crew wanted to see if their treatment put people ahead of the curve (pun intended) when it came to progression.  They also wanted the patients to use the quadruple visual analog scale to rate their pain before and after 18 months of treatment, because pain is the #1 reason that Adults need Scoliosis relief!

The results were complex.  I had to read the study twice to really grasp what was going on.  One of the reasons it was so complex is that they broke the data down into curve type.  This is very helpful because these Scolismart Docs know that different curve types produce different results.  The data is all in the study, which you can look over for yourself, but let me just say – 100% of participants claimed either the same or a dramatic decrease in pain!  Only one participant said his/her pain stayed the same.  When it came to curve improvement, they blew the control group out of the water.  Compared to the control group data of a 1.02 degree increase in 18 months, the thoracic group saw curves improve an average of 12 degrees, Lumbar group saw an average improvement of 10 degrees, and the thoracolumbar group corrected an average of 11 degrees.  The double major curve group was the only one that a percentage (12.5%) showed a worsening of their curve, but this was only 1-2 degrees (which is the same as the control group).  And, remember – everyone’s pain went down!  My take on this study is that it shows a lot of hope for Adults needing Scoliosis relief.  You have an excellent chance at pain reduction AND a very likely chance at curve improvement which, let’s face it, is almost unheard of for adults.  Tune in next week for Part 2 where I review another SAS study.

sas-1.png
Visual representation of a patient in and out of the suit.
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Your job responsibility, redefined.

self care

Lately, I’ve been working hard to slowly put routines in place in my life to take better care of myself.  I’ve given up on the dream of fast fixes – for any area of my life – although sometimes I still get down on myself for making such slow progress in what seems is all areas of my life.  Specifically, I’m working on honing my morning routine to add things that I feel are important, but that I typically don’t take time for because they are not urgent.  They are big picture things – like spending time in communion with God, working on my writing, which I have always wanted to do more of, and taking care of my body.  I’ve been in physical therapy for back issues (not Scoliosis related), and have started walking again, so that I can keep up with the family when we hike during our summer trips this year.  I sometimes catch myself feeling guilty – like I should be working or doing something more PRODUCTIVE with my time.  I can’t allow myself to just sit and enjoy a TV show once in a while – I have to be DOING something while I watch to justify it.  I should be doing more work on my business, my family, and my community.  But, maybe the truly important work has been this self care all along.

I’ve written about this subject before, but lately someone said something to me that made me rethink it – that time spent in relaxation is actually productive time.  What?  Yes, time spent in relaxation IS productive time because it allows our minds to unwind.  We are productively unwinding.  Time spent taking care of us is actually part of our JOB as a productive individual.  Because, as we improve ourselves and work on us, we can serve our families better, improve our business productivity, and be more productive overall.  We all KNOW we need to put the oxygen mask on ourselves first, but how many of us actually look at it as our RESPONSIBILITY?  Something on our never ending agenda?

It’s tough. We feel so many pressures.  And, when we have a loved one or child dealing with something like Scoliosis, it’s so easy to completely put our needs aside.  But, dangerous things can happen – we can burn out, we can become the martyr emotionally, or we can physically become unavailable to our family because we’ve forgotten about #1.  Our kids need us, our husbands need us, our jobs need us, our friends need us – but, the reality is that we need ourselves.  Nobody else is going to care for us – we are adults, and need to decide we are important enough to do it.  It’s not selfish, it’s our DUTY to our family to care for ourselves, too.  It’s part of your job as their caregiver.  I know that sometimes there are not enough hours in the day, but there are also lots of things we can say “no” to over time, and lots of less important things that crowd our day, our thoughts, our time.  Your children are busy, too, but they are not too busy to help with things around the house.  They may wear a brace or have physical discomfort, but they are still capable of taking more mundane things off your plate so you can focus on the big picture for the family.  It will actually fill them with confidence in their abilities.  Your spouse is also very capable, but you have to let go of certain things and let them do it their way (I know, super hard).  You can tell people no and tell yourself yes.  You can ask for help from those who love you.  It’s not easy, but it’s very worth it.  You are very worth it.

Never underestimate the Power of a Mom

My daughter convinced my husband and I to watch the popular TV series “Stranger Things”.  I won’t include any spoilers here, but in one scene, Winona Ryder, who plays a very determined Mom of a very unfortunate young man, hugs him and says, “I won’t let anything happen to you.  I promise!”.  As she said that, I leaned over to my husband and said wryly, “yeah, she shouldn’t make promises that she can’t keep”.  We both chuckled because we knew it would probably get worse for that family, but it kind of hit me deep.  I thought, “Well, when she made that promise, she probably really believed it.  She probably was ready to fight a battalion for her son, and had no plans to fail”.  Then I thought about how many moms have felt this extreme warrior protective nature at one or more times in their Mothering.  For me, it was when we got the diagnosis of Scoliosis.  I literally went into battle mode.  I researched, I prayed, I thought about things from every angle.  And, then when we went forward with what I thought was the best plan, I was ready to conquer every single obstacle.  When she came home in a shiny Spinecor brace, and I had 3 days to figure out how she could be independent at school while wearing the brace, I didn’t hesitate.  I pulled out my sewing machine, I cut, I sewed, and I put something together that would work for her.  It wasn’t pretty, but it did work.  I never doubted that I would be able to make it work – and I was right.  I’m sure each Mom reading this has their own story of their superpower moments in the lives of our children.  Sometimes we can conquer, but we are humans, and, unfortunately, sometimes we cannot.

When my daughter’s orthotist urged me to make my bodysuit invention available to the public, I hesitated.  He thought it could really help a  lot of people.  It was something I created in a warrior Mom moment and I wasn’t sure if it could really do any good.  But, he urged me and I decided to proceed.  In the early days of my patenting process, I shared the design with a brace manufacturer (that I will not name), figuring they would think it’s a great supplement to their brace.  But, to my disappointment, the head of the company wrote me that “I was just a Mom of one patient”.  The tone of the email (which I have kept for motivation) was that I was just a Mom, and I didn’t understand all the aspects of the situation.  But, I thought to myself – who BETTER than a Mom to soldier through a problem that involves her own child?  Who has a better motivation?  Who has a better understanding?  Nothing can overpower the raw determination of a Mom in fight mode for her children.  Dads can hold their own, too.  But, I still feel they fall short to Moms.  Sorry, guys.

So, if you are new in this journey – believe in your power.  If you are a veteran, share your stories below in the comments.  We are all on the same team – we are all warriors for our children.  And, we should have each other’s backs in battle.  I have your back, be assured.

super mom

 

Changes and Perspective

This has been a very hectic month!  The seasons are changing, the people in my life and work are changing, and we are making a huge product changeover at EmBraced In Comfort! Whew!  Maintaining balance is tough.  In addition, I’m still trying to map a course for my son’s next brace – figuring out possible travel, expenses, timing with his crazy growth spurts, etc.  It can get overwhelming and difficult to find balance.  But, I try to remember that this is a marathon, not a sprint.  I try to remember that my family is the reason for it all.  I know how important your families are to you, too.  I wish you a very happy holiday season!  May you be blessed in abundance. See you in 2018!

Weathering Growth Spurts: In Scoliosis and in business.

As Scoli parents, the one thing we all dread is the GROWTH SPURT.  It can come at any time and catch us unawares.  Growth spurts are typically the time when Scoliosis goes a bit wild and curves can increase greatly during these times of rapid change.  This last year, my son had the ultimate growth spurt – about 5 inches in one year.  Last year, when we took him for his Orthopedic checkup, he was celebrating about 4 years out of brace.  The first time my son braced, Luke from National Scoliosis Center made him a brace that we credit with a DECREASE in my son’s curve by over 10 degrees.  And, my son was able to live blissfully at this smaller curvature until…well…adolescence.  So, when we had his checkup and realized his curve had increased, we knew we were heading right back to National Scoliosis Center.  (You can see more about our visit HERE.)  Well, we went back to the Doctor in September (yes, it’s taken me way too long to write an update), and were very happy to find out that, after a year of wearing his brace only at night, we were still at the same curve! (possibly less, but there is always that standard deviation)  Whew!  To weather a 5 inch growth spurt and only have to brace at night is a big win!  He’s holding on around 22-26 degrees.  We figure if we can hold him there, we will be very happy parents indeed.  And, if he can keep just bracing at night, he will be much happier.  We fully expect this year to be a very large period of growth as well, so we want to stay fully armed with the best brace we can.

This year has been a period of rapid growth in my EmBraced In Comfort business life as well.  This is most likely why I have been neglecting my blog (sorry).  My business has grown a ton, we are working on lots of new exciting changes, and it’s been a full-time endeavor to weather those growing pains.  In business, as in Scoliosis, rapid growth is often a sign that something might go uncontrollably haywire.  But, we are weathering it and bracing for another year of growth next year.  We are so happy when we go read the reviews of all of our brace-wearing customers to find that we are, indeed, making a difference for you all – our Scoliosis family.  That is what keeps us doing what we do, day in and day out.

Yesterday’s hard is today’s easy

Yesterday was really hard for me.  I had a migraine, which, for me, involves strobe/blackout vision.  Then it kind of just turns into mind-fogginess and headache for a couple days.  And, I was scurrying to get new samples ready for a photo shoot and my machine would not work correctly.  The samples were not happening.  I was SO FRUSTRATED.  My colleague looked at me and said “It looks like your work day is over”.  I had to cancel the photo shoot, admit defeat, and leave in a haze of uncertainty.  I didn’t know if I could fix this problem with the machine (and I’m still not sure how I’ll do it).   But, then I thought back to my past struggles.  Struggles that were just as hard and overwhelming several years ago as this one is now.  But, most of the biggest struggles I can think of (especially in my businesses) are now things that seem easy to me.  When I was working through them, I was frantic, lost, in complete disbelief that I could solve them…even ready to QUIT!  But, now I think most of those challenges are simple.  They are simply replaced by new and greater challenges.  So, I decided to think of this machine like I would probably view it in several years.  I will figure something out (still not sure what yet), and someday I will look back and remember that THIS time I didn’t despair.  This time I remembered what I had been capable of in the past.  And, I simply chose to push through it.

Dealing with a diagnosis of a loved one can be the same way.  I remember how I was in the early days of my children’s Scoliosis diagnosis.  I was frantic, lost, confused, not sure how we would proceed.  And, now, looking back, I can see all that I’ve learned and I feel confident that, no matter what the next appointment brings, we will have a solution.  Just remember, if you are new to this – it gets easier.  It gets better.  It may not ever be EASY, but life will one day return to a comfortable rhythm.  You WILL discover your plan through this and you WILL work through it – have confidence in yourself and, when all else fails, think like your future self – “c’mon, we got this…one foot in front of the other”.

 

 

Braced, a Scoliosis Book Review

braced cover

Thank-you Alyson Gerber for creating a book for our curvy kids – finally.  Thank-you for creating a book that isn’t just facts and figures, but a story about a young Scoliosis patient who is going through the same thing that many of our kids are going through today.  I was asked to evaluate this book by a local librarian and it was actually the first fiction book that I took the time to read in…I’m embarrassed to say…probably a year.  And, I love to read.  I just have too many other things going on.  This was well worth the time, though. (and spurred me on to read more)  I was hoping that this would be a well-written piece and it did not disappoint.  (And, I am a very picky editor!) It is definitely written for the young teens and tweens, but I actually enjoyed it quite a bit, too, because it gave me the perspective of a teen mind that many of us Moms don’t get to catch a glimpse of very often.  The story was interesting – making it a good book to recommend to any child, not just one going through Scoliosis.  It would also be great to recommend to friends of Scoliosis kids, who might be having a hard time understanding how to be supportive of their friends.

Braced, is about a young girl named Rachel, who loves soccer and loves her besties.  It takes the reader through her journey of bracing – through all the ups and downs, emotions, and regular teenage life. I asked my daughter, who is 15, to read, it, too.  Although at 287 pages it is a good-sized book, my daughter was done in an hour and a half.  I think that is a tribute to what a well-flowing book it really is.  I asked her if she shared any emotions with the main character and her response was surprising – she said she really didn’t remember the time she was bracing. She braced for 6 years!  But, since it was from the age of 6-12, she doesn’t remember a lot of those emotions.  And, we did not have either of our kids in a Boston brace.  As I’ve mentioned in other articles, although it is the standard out there, I do not think it is very effective, compared to other treatments.  But, that is ok, because the trials and tribulations that Rachel goes through in the story are relatable to any young person going through trials –and it’s useful for their parents, too.  My daughter enjoyed the story for what it was.

I highly recommend you get your Scoli friend or family member a copy of this book.  Pair it with a Higgy Bear and you’ll have a great gift set! (Ok, maybe a Brace T-shirt from EmBraced In Comfort, just to round it out) 🙂 Happy reading, everyone!