At least it’s not cancer.

“At least it’s not cancer…”  How many of us have heard this when we inform others that our child has been diagnosed with Scoliosis?  How many of us think this ourselves?  Or, maybe the flipside – “At least it’s JUST Scoliosis.”

I have seen cancer touch so many people’s lives over the past year… I’ve seen a young family member walk through it successfully, I’ve seen another friend whose child is newly diagnosed facing uncertainty, and I’ve had a friend diagnosed and pass away within a month’s time.  It’s a nasty disease.  And, honestly, I am grateful every day that I don’t have to fight this battle with my child.  The people who walk through this every day are warriors of a level more admirable than I hope to understand.

However, Scoliosis is also nasty.  And, it’s hard, and it’s a long, drawn-out, difficult childhood for our kids for other reasons.  It’s not JUST Scoliosis.  So many times we try to stifle our feelings because we don’t feel JUSTIFIED feeling bad when our child is dealing with a life-long yet (normally) not life-threatening illness.  We think we don’t have a RIGHT to find it hard or to be sad or to grieve the loss of a childhood lived outside the bounds and constraints of whatever we are using to fight this “curve that never rests”.

We need to stop putting our pain on a scale of 1-10 and feeling we only deserve to feel it when it’s a 10.  We can simultaneously be grateful and fearful or relieved and disappointed.  Our emotions are not black and white, they exist in a swirling whirlwind in between and never quite settle into stillness.  If you are dealing with a new diagnosis, or are living the long-term battle that Scoliosis brings, allow yourself whatever you are feeling.  Lean on those who don’t try to talk you out of those feelings, but who let you be in them for a while.  Then, get back to the fight until the time comes where you need to stop and grieve again.  It’s a cycle, not a straight line.

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DONE with bracing! Finally.

We had a checkup with Dr. Li at the University Of Michigan O&P on Friday, which was incidentally my son’s 16th birthday.  As she predicted the last time, he was given the great news that he is DONE with bracing!  He’s been bracing on and off for about 10 years and our family has been bracing two kids on-and-off for about a dozen years or more.  So, he is very happy and we are, too!!

Take note, parents of long-time bracing: I can’t actually remember how long we’ve been bracing, which is a GOOD THING.  Someday you will stop counting the days until they are “done” and life just takes over and the new normal kicks in and “all of a sudden”, your kids are grown and you are done bracing.  I wouldn’t recommend rushing the first part, even if you can’t wait for the second part.

So, happy 16th birthday to my son. We are grateful for the best gift every – an end to bracing AND a spine that has stabilized in the upper 20s/lower 30s.  And, one where both his curves match, so he is “symmetrically crooked”.  We will TAKE IT!

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Bye Bye!!

Celebrating a decade of support

It is amazing to think what can happen in our lives in a decade.  Just over 10 years ago, I was dealing with a Scoliosis treatment plan for my 7-year-old daughter and trying to figure out how to make life work in the confines of bracing.  I was where many of my readers are now, or at least where they have been at some point.  I was “just a Mom” (as a pompous Doc in the Scoliosis industry pointed out), with an idea to make my daughter more comfortable through some contraption that I threw together on my old home sewing machines.  I never knew what God had in store.  Yes, I feel that only through the working of God could my youngest “baby”, EmBraced In Comfort, have become what it is today…

Today we, at EmBraced In Comfort, are flourishing – helping people all over the world.  We have a large line of undergarments that we offer for all shapes and sizes and for both the female and male bodies.  (That can be attributed to my son going into a brace when he was 6, too).  We started out in my home, and, once we grew and took over my personal space, we moved to one other building and quickly outgrew that before we moved into our current location several years ago.  We have had ups and downs, team members come and go (some happily and some not so much), and we’ve even had heartbreak when patented ideas and designs were “closely mimicked” in the industry.  I’ve had to learn everything, including how to patent an idea, how to design a website,  how to understand issues around textiles and design, and how to be an industrial sewing machine mechanic (yes, I’m certified in most classes of machines).  I’ve gone back to college to take textiles and design courses, read textbooks on subjects I needed to learn, and reached out to experts who knew more than me to help guide me (a practice I will always continue).  But, what I’ve had to learn the most is how to rely on God more and more, as I navigated (and continue to navigate) challenge after challenge.  It has not been easy, but it’s been rewarding, and mostly because of the people I’ve met along the way.

Suffering people were the entire reason I started this adventure.  And, comforting suffering people is what keeps me going.  It’s not about the money, although I’ve slowly bootstrapped to where I am now and been able to come out ahead most years.  It’s about the people – the people who, every time I’m just too frustrated and ready to quit, call me or text me or send me an email to say Thank-You.  People who tell me that their child was crying one day, with sores and bleeding from the rubbing of the brace on her skin, and that after putting on one of our shirts, her daughter was fine.  What a miracle that we are blessed to be a part of!  These words of encouragement always come at just the right time and it has – truly – been what has kept this business (and me) going all this time.

The next 10 years are a promising mystery, but I am currently pursuing a new call – to become an ordained Pastor in the ELCA (Evangelical Lutheran Church in America).  I’m attending Wartburg Seminary at a distance, while I continue to service my customers.  God called me 10 years ago to comfort a hurting people in the best way I knew how, and God knew that nothing motivates a Mom like seeing her child(ren) suffer.  This business is, and has been, a genuine calling.  And, we are not done.  But, now God has called me to more – and, this journey of learning through seminary is just the beginning.  I look forward to seeing where we continue to go in the future.  As always, I and my fantastic team (more about them later) are here for you!  Just reach out.

Blessings,

Tina

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Me and my two inspirations! My Scoliosis warriors.

Fading, but not fading away

We are just a few months away from one of the best milestones I can imagine – the finish line for Scoliosis treatment!  That’s right, after over a dozen years of treatments for my two kids, we are almost D-O-N-E.  My daughter “graduated” from treatment when she turned 18 recently, and my son received word from his Orthopedic surgeon at his last visit that he will be done bracing around his 16th birthday (in February).  Each child was in treatment starting at age 5.  We’ve done it all – “wait and see” (please don’t do this), Spinecor (also, not a big fan), Schroth, Scolismart, Rigo-Cheneau, Boston, and … the most dreaded of all…fusion surgery!   The good news is that I’ve been writing about it for almost the entire journey and you can see that, through the ups and downs, we have ended up on top.

My daughter had to brace for 6 years, only to have surgery when her curves reached 97 degrees.  Was it tough?  Yes.  But, she is doing GREAT.  She has very little discomfort, played 2 sports in high school (including being a volleyball setter), and is doing GREAT at college.  She is very happy and treats her scars as trophies of her hard work.

My son will finish up around 30 degrees and we are fine with that.  He hasn’t required surgery and, God willing, never will.  His pain is also very minimal (if any) and he looks just fine cosmetically.  He can’t WAIT for his time in a brace to be OVER.  And, who can blame him?

My husband has been battling scoliosis since he was 16.  He never braced or got any type of treatment, preferring to play sports and not be incumbered by a brace.  He feels pain if he lets himself get out of shape or gain too much in the “spare tire” region, but, otherwise, he’s been doing great at about 35 degrees for all these years.

This is part of the reason I don’t write as much.  We are blissfully at the “end of the road”.  There is just not as much about our journey to blog about.  Although, we won’t ever be “done”.  We all know that Scoliosis is a lifelong condition and that they will all need to be diligent with self care.  But, we are nearly out of the most stressful part and I can tell you that it feels nice.  I will continue to blog, because Scoliosis has been a part of my life for so long and I want to be a support to those entering the journey.  There is still much to be said.  Also, my business EmBraced In Comfort isn’t going anywhere. We are not going to stop on our mission to help as many Scoliosis brace wearers as we can!!

So…comment below…what are some topics you’d like to hear more about from a Mom who’s been through it all (mostly)?  I’ve been living in this world for a dozen years, so let me help guide you through the process.  I have been, and will continue to be, here for you to help you along in your Scoliosis Family Adventure.

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My three Scoliosis Warriors – looking to what lies ahead!!

 

Don’t Blink

Well, she’s gone.  Off to college – my first born, my first Scoliosis warrior.  Our jobs as parents are to work ourselves out of a job.  We WANT them to become independent and capable and ready to spread their wings and fly – yet we also want them close.  I am overjoyed and excited for her – she is doing great at college.  Great roomate, great school, new friends – I couldn’t be more at ease with her situation there.  But…she’s still not next to me and it’s uncomfortable.  We don’t think about her Scoliosis much anymore.  It seemed like our entire lives for so long, but now it’s just background noise.  Maybe we are more used to it, or maybe it just got easier, but it only creeps up every once in a while.  It did for me during move in – “is that mattress going to be comfortable for you – I don’t want your back to get sore”.  Also, we have the additional challenge of locating a massage therapist in her area that accepts our insurance – because we need to make sure she keeps taking care of herself.  She’s eating relatively healthy and still making time to workout, so that’s good – she needs to maintain her good habits away from home.  But, the reality is that my job, while not entirely done, has significantly decreased and now it’s up to her.  I just grab onto those rare video chats and our texts and hold on and appreciate that we can keep in touch so easily.  I remember that I’m always there when she reaches out and needs me.  And, I remember that my life is much more than my kids – that they seem like everything, but that they can’t be – because when they are gone, something needs to be left.  So, here is my advice:  1.  Don’t let Scoliosis dominate their youth – don’t wish the time away to “when you don’t have to brace anymore”, etc…the time will zoom by.  So, find ways to enjoy the time you have, regardless of the challenges swirling around you.  2.  Keep developing you as a person (apart from being a parent) and your relationship with your partner – because, when the nest empties, there needs to be something left.  3.  Nurture confidence, competence, and independence in your child at an early age.  It will make the transition to “adulthood” so much easier for both them and you.  Don’t let their scoliosis condition become the excuse – they will feel so much pride and so much confidence when they overcome the extra challenges they need to endure.  Life is full of roadblocks – they have to learn how to navigate them.  My heart is with all of you Moms and Dads out there sending off your kids to college – it’s one big tornado of emotions! And, we have no choice but to hold on and ride it out!

Off to college blog

A new Scoliosis bracing solution – much closer to home.

Most people who read my blog know that I’m not a fan of the Boston brace.  However, two years ago, when my son had to return to bracing after a several year hiatus, his curves were still very mild (25 degree-ish).  In order to save a lot of time and money going to the National Scoliosis Center (which was, and still is, our gold standard of bracing), I decided we’d try the in-house orthotists at the University of Michigan.  I was hoping for a brace that did a better job of tackling the 3-D issues of Scoliosis than the typical Boston brace, and the orthotist I worked with said it would.  However, to my disappointment, it really just came back as a typical Boston brace – a tight girdle that did very little for three dimensional rotation.  My son found it to be very uncomfortable, and we weren’t getting much correction it in, but we had him wear it for a year since we had purchased it.

After the year of Boston bracing, I knew that, if he had to keep bracing, I wanted to find a place that would do a Riggo-Cheneau style brace.  Fortunately, our Doctor told us about Lance Weersma, at the Mary Free Bed center in Grand Rapids, Michigan.  So, instead of driving 16 hours to the National Scoliosis Center, we drove three to the west side of Michigan to meet with Lance.  We were very happy we did so.

First of all, the Mary Free Bed facility is wonderful.  You don’t even have to worry about parking – they will valet your car for free!  So, it’s very easy to get in and out.  The staff is all incredibly friendly as well.  Secondly, Lance has a wonderful rapport with parents and kids alike.  He got my grumpy teenage boy to crack a smile more than once, AND, most importantly, got him involved in the process of being measured for a new brace.  Our first visit consisted of Lance and his assistant taking detailed measurements.  Lance uses the Gomez Orthotic System, also referred to as the GOS brace.  It’s a variant on the Riggo-Cheneau, but it is similar enough that we ended up with a very effective, and relatively comfortable, brace.

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On our second visit, Vaughn got his brace (it took about a month).  Lance made some adjustments to it to make it fit perfectly.  Already my son noticed a BIG difference in the comfort of the GOS brace vs. the Boston he had the year before.  The straps on the GOS open in the front, while the boston opens in the back.  I find front opening to be much more user friendly.  Also, the plastic that was used for the GOS is made from a Polyethylene plastic, which is more pliable than the traditionally used polypropylene.  Therefore, most of the brace is a softer plastic, but then the areas that need to be pushing on the spine are strategically hardened and reinforced.  The GOS also has several holes built in, as well as looser recesses, which allow the spine to shift as it is being pushed over.  These relief spots also take away the “girdle” feeling of the brace.  It’s still tight where it needs to be, but they minimize those areas as much as possible.  All in all, my son found it MUCH more comfortable and, therefore, it was MUCH easier to get him to wear it without complaint.

After my son received his GOS, we went to see our regular Doctor at U of M, who took an in-brace x-ray.  We were very happy that his upper curve was corrected quite a bit, but his lower curve didn’t get as much correction as our Doctor wanted to see.  So, we met Lance once more and he made some tweaks that improved the effectiveness even more.  He was definitely willing to work with us until the brace was just right.  He even found a time we could meet at a clinic that was closer to our home, to make those adjustments.  Also, as problems arise (like when my son had a spot with irritation), Lance is always available via email.  This type of personal touch and availability is rare in the medical field, and it’s so wonderful when you find someone who goes that extra mile to ensure the best possible care.

All in all, I am very happy that we found Lance at the Mary Free Bed clinic – we got a great brace, we got to work with a very caring, personable, and talented orthotist, and we were able to have the brace billed through our insurance (a very big plus!)  If you are in Michigan, or surrounding area, I would highly recommend you make the trip over to Grand Rapids to see Lance.

Scoli-Graduation

I am now back after a writing hiatus that was supposed to be brief, but ended up lasting two months – we have been busy with a flurry of activity, including my daughter’s high school graduation, me directing a community theatre production, a trip out of town, dealing with my son’s new bracing issues AND…. DRUM ROLL PLEASE… my daughter’s graduation from her Scoliosis treatment!

A few weeks ago, we visited her orthopedic surgeon for the last time.  It’s been 5 years since surgery and all is looking just GREAT.  We’ve been working with Dr. Li a (and her predecessor Dr. Vanderhave) at University of Michigan Mott Children’s Hospital since my daughter was 6…so…11 years!  6 of those, she was bracing.  The Doc informed me that most families don’t even follow up that much after surgery, but my daughter STILL has a 40 degree curve, and a lower lumbar curve that is not fused.  So…I just did the follow ups because I wanted to make sure I crossed every T and dotted every i.  But, now she’s done.  This photo says it all….plus, she got one last rifle through the sticker bin. 🙂

Scoi grad

 

Of Bullies and Besties

Raise your hand if you’ve been bullied or picked on as a youth.  Yeah? Me, too. And, for me, it was just over “normal” stuff, like being overweight, wearing glasses and being nerdy, and…well, when all else failed, just existing as a grade school female.  Those of us who have been bullied know that it really does suck. And, those of us who have kids who wear braces, who may not stand perfectly straight, or who bear large scars down the length of their backs – well, these can just make them fodder for more abuse from their peers.

We, as a Scoliosis family, have been blessed. Both of my kids wore a brace to school at one time or another (for my daughter, it was 6 years), and they claim (and I believe them) that they were not bullied once. NOT ONCE!  That is almost inconceivable. But, in our teeny tiny town, where the kids’ classrooms more closely resemble a family gathering (and many times, the classrooms ARE literally family gatherings), they all know each other very well.  This can be a blessing and a curse, but I think it was a blessing in our case. Some kids are still not the nicest, but they all have issues – and they all know each other’s issues. So, if you want to throw a stone, it won’t be long before the stones easily come back to you.  But, in addition, I genuinely think that, like any family, these kids really care about each other. So, they may not always be happy with one another, but they don’t really want to hurt each other deep down.

Many of the people reading this article, however, HAVE experienced some nasty bullying – or, just plain teasing from peers.  It’s very hurtful and it can make a child feel very alone. I’m here to say, though, that all it takes is a few besties – one or two REALLY good friends to align with, and life feels a whole lot better.  You don’t need to be the most popular kid in school, you just need those few friends that you can count on – no matter what.

My kids both have that small tribe of friends.  My daughter is graduating this year and leaving her tribe to go find new allies, but these girls, pictured below, have been so important to my daughter and to our family, that I wanted to recognize them.  They don’t judge each other, they support each other’s quirks and idiosyncrasies, and they encourage each other in school, rather than compete AGAINST each other. I love them like they are my own kiddos – after all, I’ve seen 3 out of 4 of these girls grow up since preschool – together.  

 

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Besties (L to R) Shelby, Faith, Cynthia, and Tristen

If your child comes home discouraged because they were made fun of for something related to their Scoliosis, I can’t give any better advice than the old cliche’ – “If they are making fun of you, you don’t want them for friends anyway.”  It’s cliche’ because it is absolutely true! But, I would recommend taking a few more proactive steps. The next step I would recommend is to ask your child, “Who seems nice that you DO think would make a good friend?” and then maybe plan something special for your child and that other child to do together.  Friendships can grow with just a little water and fertilizer. So, instead of focusing on the “rotten vines”, cultivate the good ones, and turn those “bully” tears into “bestie” talks. Once they find their tribe, the naysayers will fade into the background.  

I pray that all of your children can find their tribe of besties, just like my daughter has with these girls.  To Faith, Shelby, and Tristen – this Mom thanks you for everything you have been to my daughter, is proud of everything you have accomplished to this point, and is excited for everything you will do to make a positive impact in the future.  And, those in the tribe who are not pictured (you know who you are) – the same goes for you! Congrats to the Vikings Class of 2019!

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Cynthia chose a backless prom dress – to show off her well-earned scar!

Young Gymnast and Scoliosis Patient Spreads Hope

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Ellie-Ruth is one very determined 11-year-old.  Diagnosed with Scoliosis at age 9, she and her parents were faced with the choices that all of us are faced with: which treatment options should we choose?  And, how will this affect our child’s daily life from here on? But, the one thing that Ellie-Ruth and her parents knew she could never give up was gymnastics.  Ellie-Ruth was very involved with and passionate about the sport from a young age, and she was determined to continue to reach for her goals, regardless of her diagnosis.  Her parents found specialist Dr. Kris Lundine, who is currently with the Epworth hospital in Richmond, Victoria, Australia, and Ellie-Ruth began treatment with nighttime Rigo-Cheneau bracing and Schroth Therapy.  While some children are advised against continuing gymnastics with scoliosis, Ellie-Ruth’s specialist took a different approach, focusing on the advantages of her staying strong, especially in her core.  Ellie-Ruth’s Mother, Diane, appreciates the fact that she found a specialist that does whatever is necessary to avoid surgery and one that supports her daughter’s goals.

Ellie-Ruth continues to work on her treatments, and currently visits her specialist every 6 months.  Her curve is holding at 44 degrees. Her hard work with gymnastics has also paid off. Competing in numerous competitions across Melbourne, Australia, she has achieved 6 Gold Medals, 5 Silver Medals, and at least 4 Bronze Medals.  She also qualified for the Victoria State Championship last year! Clearly, she does not intend to let Scoliosis stop her! “Gymnastics to me is my life,” says Ellie-Ruth, “I have got a curve, but that doesn’t stop me from what I love.”  When asked what she would say to other young Scoliosis patients like herself, she responded, “I would tell them to never give up on your hopes and dreams.” We thank Ellie-Ruth for sharing her inspiring story and her message of hope with us all.  She is proof that you can continue to work toward any goal while battling Scoliosis.

Ellie Ruth 9

 

A Journey Through Flatback Syndrome

Leslie Hamilton Perry was first diagnosed with Scoliosis at age 13.  Within a year, in 1973, she had her first surgery, where surgeons inserted Harrington Rods to help straighten her spine.  This solution kept her relatively functional, until 2005, when she started bending forward. Over the next year, she found the condition steadily worsening, until she was fully bent over.  

Before surgery

In 2011, she was diagnosed with flatback, which is a condition in which the lower spine loses some of its normal curvature, which can shift the center of gravity too far forward in the body.  The result is that the patient can have trouble standing upward. It can also cause chronic pain and the loss of ability to do daily tasks.  After her diagnosis, she had rod removal surgery, followed by a third surgery in the same year. Neither surgery helped. After living in pain for a decade, she found revision specialist Dr. Matthew Geck and traveled from her home in Mississippi to Austin, Texas for a grueling 13 hour surgery.  Afterward, she was finally standing upright and felt like she had her life back. Later, she followed up with a 5th surgery to extend the fusion further up, to T2.  

 

After surgery

Dr. Geck
with Dr. Geck!

In an attempt to help others like her, Leslie joined forces with Carolyn, another patient of Dr. Geck’s, to form a Flatback support group on Facebook.  The group already has close to 500 members, but Leslie and Carolyn want to continue to spread the word so they can help others through support, information, and encouragement.  When asked how she managed to cope for so long with constant discomfort and difficulty, Leslie said she did so by taking it one day at a time. She waited 6 years to get a diagnosis and to find the right Doctor to help her.  I think we can all learn from her the value of never giving up.

Leslie’s greatest piece of advice is that “you are your own best advocate. If you think something is wrong, it probably is. Get several opinions on treatment options, and when surgery is the only option left, find a surgeon who specializes in Flatback Syndrome revision/ adult Scoliosis.”  I would add that you should also go and join her facebook group.  We can all be better off if we reach out and seek help from those who have gone before us.  Thank-you to Leslie for sharing her story!

Leslie and Carolyn
Leslie and Carolyn

For all the Scoliosis Queens (and Kings)

This has been a very busy, but wonderful year for our family.  Our original Scoliosis Warrior – our daughter – is now a Senior in High School!  She was diagnosed with Scoliosis at 5 and I started this blog 10 years ago to help others learn from our experiences.  How far she has come!!  Well, this winter, she surprised us by deciding to run for Coming Home Queen.  Up to this point, she has had zero interest in things like this, but she wanted to run so “at least one female basketball player would be on the court”.  So, we got her a pretty dress (that laid wonderfully on her not-so-straight upper body) and some mega heels (that she walked in with total grace) and got ready for the big day.

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She is not only the ONLY senior on her varsity basketball team (yes, we live in a VERY tiny community), but she is a captain, and helped lead her team to a victory on the basketball court that night.  Then, she ran and got her clarinet, helping the band to play the National Anthem.  Then, during the first half of the Boys’ game that immediately followed, she cleaned up and transformed into her “Queen Look”.  And, yes, at half-time of the boys’ game, she was crowned Queen.  I was proud of her – not just for winning (which is voted on by the middle school and high school students and staff), but for putting herself a bit out of her comfort zone to go for something new, that she had never thought to go for in the past.  Then AFTER the Boys’ game, they had the dance (that she helped plan, as President of the Student Council).  This girl has NOT let Scoliosis stop her ONE TINY BIT.  And, she’s never acted as though she were any different than anyone else.  I don’t know what it feels like to be in her body.  She barely ever complains of discomfort, but, since she has been battling this since she was young, maybe her “normal” just entails more discomfort than for some of us.  Regardless, she never ceases to be my inspiration…and my muse.  One of our biggest fears when our children are first diagnosed is if this Scoliosis condition will prevent our child from living a “normal life”.  We want them to be safe, secure, happy.  But, I would say, looking back, that it set her up to live a life that is ABOVE a “normal life”.  I would never wish challenges on my children, but I can recognize that they do make them stronger and more confident.  For all of you Scoliosis Warriors out there, who are hesitating to put yourself out of you comfort zone and try something new – I say just go for it!  Don’t let anything stop you.  Allow yourself to be Queen – or King – in whatever area you strive to be the best.

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Cynthia Speaks: Princess Eugenie Shows off her Scoliosis Scar.

~By Cynthia, 17, Scoliosis Warrior

Hey, everyone! It’s been a little while since I last posted an article, but it’s good to be back. Starting now, I’m hoping to publish an article every month about what’s going on in the scoliosis community. This month, I wanted to do a more personal piece, instead of a medical article or something like that. Recently, in October of 2018, Princess Eugenie got married to Jack Brooksbank. Now, unless you knew about the wedding and why I’m writing about it today, those names mean nothing to you. These aren’t the most famous royals, to me at least. I hadn’t ever heard of Princess Eugenie until my mom told me about her. To me, and many other scoliosis patients, this wedding is not exciting because it is royal. Rather, the excitement is over Princess Eugenie and her dress. Wedding dresses are one of the most visible and important parts of the wedding. Princess Eugenie had a beautiful dress, but it was especially beautiful because it showed off her scoliosis scar. She picked an off-the-shoulder dress with a low back specifically for that reason.

Now, for some backstory. Princess Eugenie is currently 28 years old, and was diagnosed with scoliosis at age 11. Whether or not she wore a brace is unclear, but she had to surgically correct the scoliosis at age 12. According to Eugenie, the most jarring part was the fact that her life would essentially be put on hold while she recovered, and not the fact that she would have a scar from the operation. After the operation, she had to wear a neck brace, and was very frustrated because she couldn’t move or play with her friends. Scoliosis doesn’t just go away after you’ve had a surgery, though. There is always a lasting reminder of what you went through in the form of a scar. Eugenie was apprehensive about showing hers off at first, but later grew to be proud of it. She became so proud, that she told her wedding dress designers that her scar absolutely had to be seen, and they came up with the dress we saw at the wedding, highlighting her scar beautifully.

Before I begin to share my own personal thoughts, I want to share something interesting. The woman who wrote the article I got my information from, Danielle Sheridan, also had scoliosis. In the article, you get pieces of Ms. Sheridan’s testimonial, intertwined with the story of Princess Eugenie, making the retelling that much more personal and real. She talks about feeling left out and the troubles that come with wearing a brace. She was the perfect person to do the interview and write that article. Most of us can identify with Danielle and Eugenie. We know the rigidness of a brace, and the feeling of confinement that comes with it. We know the feeling of uncertainty as you head into the operating room, not knowing what you will be like on the other side. We can identify with these people in our own ways, and that is so important in our materialistic culture. To see a well-respected woman publicly show off her scar with pride is amazing. She is someone we can point to and show young scoliosis patients, telling them that their journey can bring them a sense of achievement. We can tell young patients, and ourselves, that scars should be celebrated.  “Look at Princess Eugenie on her wedding day”, we should say, baring her scar to the world with a sense of pride, and the knowledge that she is a role model for so many others by doing so.

My scar has always been something that I was eager to show off, even before I got it, but I know that that is not the case for some. To those who hate their scars, or can’t stand the way they look in their brace, or feel like the pressures of society to look a certain way are stifling, look to Princess Eugenie. Even though she was brought up as a royal, and lived a far different life than most of us did, she still found the courage to show an imperfect part of herself to the world. I won’t tell you it gets better, because that means nothing from someone who’s already through the hardest part and has been for a while, but try to look at Eugenie and have hope. Even if you aren’t there right now, look at her and realize that it is possible to be proud of what you’ve gone through.

I may have gone off on a bit of a tangent, but I felt it was important. Eugenie, by doing something so simple as wearing a low-backed wedding dress, has become a role model. I wish I would’ve seen this when I was younger, but I’m thrilled that other young patients will get to see it. It’s important to have scoliosis represented, and huge to have this representation on a worldwide scale. So, to Princess Eugenie, I say thank you.

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Glimpsing Normal

Cindy Volleyball

This girl – #5 – she has been, and continues to be, my inspiration.  I think back to all the mountains of fear that I used to stare at, afraid to climb.  I think back to the worry – will she ever really, truly be OK?  I suppose we all worry about our kids that way, but when your child has a condition like Scoliosis, you really take a scarier ride on the worry bus.  My daughter was diagnosed at age 5, braced for 6 years, had surgery when she was 13.  She’s been through so much – but, you can see, it hasn’t slowed her down.  She is now a Senior in high school, and just finished up volleyball season.  She was a setter for the 5th year in a row, and a team captain.  She led her team well – communicating constantly, and always setting the best example she could.  My daughter doesn’t play much with excuses, and, even with 3/4 of her spine fused, she was still complimented by coaches as being one of the best setters they have seen.  It amazes me, really.  We have now settled into a tiny bit of normal (whatever that means). The huge mountains of fear are mostly behind us, and she really never missed a beat.  I can’t wait to see where her experience of Scoliosis takes her in the future.

Scoliosis Family Adventures: Out West Edition!

What a summer!  I feel like our heads have barely rested on our own pillows!  But, it’ s been an amazing ride.  It dawned on me last year that my baby girl is graduating soon (class of 2019) and that we needed one big, family adventure before then.  My husband and I had never been out west, so I planned a 10 day excursion, where we speed-tripped through various parks and landmarks.  We started by flying into San Francisco.  We August 2018 Blog 2toured the city for a few hours (remember, I said this was SPEED touring).  We spent the next day exploring Muir woods, just North of San Fran.  Then we went to Yosemite, thankfully before they shut the park down due to fires.  Following Yosemite, we went to LA/Hollywood, then Grand Canyon, then Zion National Park, and…finally…Vegas, from which we flew home.  Whew!  Lots of hiking, many times in crazy heat, sight seeing, TONS of steps on the fitbit.  Also, LOTS of driving and good, quality family time.  It had been nearly 10 years since I left my business (the real baby of the family) for such an extended time and I was very happy that my EIC Team back home took care of everything for me while I was away.

August 2018 Blog 4

It was really great, but, after 10 days, we were ready to get back to real life.  Real life can be real stressful, especially when dealing with Scoliosis.  But, we have to find time to work in these adventures so that we have the peace of mind to deal with the daily grind.  I was really grateful that my “Scoli Three” didn’t have any issues on the tripAugust 2018 blog 3 – between riding in planes, lots of time in cars, sleeping in a different bed every-other-night – I would have expected some flare-ups with their backs, but they did great.  We did make our son take his brace as a carry on – we weren’t willing to risk the airlines losing THAT piece of luggage.  He didn’t want to wear it on the plane, and, since he just wears at night anyway, we found a packpack that would fit the brace, and then put his carry on stuff in the middle of it.  It fit just fine under the seat in front of him!  If one of my kids were still full-time bracing, though, I probably would have told them to leave it in the hotel room for some of those hikes – they were so hot that those of us NOT in layers were cooking in our boots.  It’s all about balance – and, I was happy to find some balance by really investing in a good chunk of quality time with the family.  We can get bogged down in the day-to-day struggles, tipping the scales in our brains to stress overload.  But, by consciously making the effort to plan in the time together and, by compromising just a bit on the daily routine, we can bring that scale back to balance.

August 2018 Blog

Scoli Mom Guilt

Most Moms have experienced the big, bad, dark torment of Mom guilt at one point or another in her life as a Mom.  It’s practically unavoidable. But, in the world of Scoliosis, when there are so many choices for our child’s path, we set ourselves up for a special brand-name Scoli guilt – and, possibly it’s successor – regret. I am kind of in a puddle of the mucky mom guilt right now – and I’m hoping it doesn’t turn into regret later, but it will be some time before I can tell.

Mom guilt
Scoli Mom Guilt can make the most confident of us feel blue.

I didn’t talk much about our latest bracing adventure for my son because it’s been much too crazy and emotional of a Spring for me (for many reasons).  However, it’s past time for a recap.  I’ll just start by saying that my son grew nearly 7 inches last year! No joke. His previous brace was way too small, but we all know that insurance only covers one per year, so we waited.  Thankfully, his upper curve stayed in the high teens and his lower curve in the mid 20s, so I felt pretty good about how he weathered that growth spurt. However, we anticipate another big year of growth and the Doc wants him to keep bracing at night.  Well, the dilemma we faced was this: due to insurance changes, we were looking at close to $5,000 out-of-pocket, plus travel expenses, to go to Luke at National Scoliosis Center. Now, let me just say that he is worth every penny and more, and I still highly recommend that families go there if they can.  But, we were still faced with a dilemma.  With the amount of growing years left, we could be faced with out-of-pocket expenses equaling a year or more of college. How do we choose? With our son’s curves being so low, could we forego the “Corvette” model brace for one that might still do the job and not cost us out of pocket?  

I did some pretty extensive research and decided we would stick close to home this time and I thought that where we were thinking of going would still treat the Scoliosis condition in the 3D rotation.  I really wanted something better than the traditional Boston brace.  However, what we ended up with is essentially a Boston brace, with some additional pads put in to help rotation.  Not really what I expected and definitely not nearly as comfortable as what we were used to from Luke’s braces.  And, no doubt it is not nearly as effective.  *sigh*  My son is not very happy, but he’s tolerating it and he knows that we made this choice purely to manage both his curve and our finances as much as possible. We took a gamble, and we won’t know if it will pay off until our year is over.   If his curve increases, we will definitely return to National Scoliosis Center – the quality just cannot be beat. But, it’s so hard not knowing. We want to give our kids the best of EVERYTHING, but sometimes we just can’t. Or, we can in the moment, but it would be at the risk of something else in the future.  It bothers me how it seems that the best treatments for Scoliosis are also the most expensive because insurance companies don’t recognize the benefit of the newer and better treatments. And, the immensely talented Orthotists like Luke need to get compensated for their time and talents.

For me, it came down to this: when moving from point A to point B, both a corvette and a jalopy can get you there.  The corvette may be more reliable and the ride smoother, but you’d have nothing to spend on a house when you got to point B.  The Jalopy may emphasize every bump along the way and make you nervous that you won’t arrive safely, but, chances are, you will get to Point B and still have money left for a mortgage.  OK, my son’s current brace is a little bit better than a Jalopy, but you get my point. Sometimes we Moms have to compromise – and, it kills us to do so. And, even if we know we made the best decision for right here and right now, we still worry – have we done enough?  I guess I will see at his 6-month checkup. Until then, I can’t look back. I will just have to await the learning experience that is to come and trust in my prayers and my instincts as a Mom.

Jalopy
It may not be pretty, but can it get us there? We shall see.

WIN a Scoliosis Activity Suit through the Crooked Life Foundation!

crooked life 2

In the very small Scoliosis community, it is always nice to see people helping each other out. This is where Marce Kuhns comes in. She was diagnosed with Scoliosis at 12 years old, and started out wearing a hard brace. It was too painful for her, but the only remaining option was to wait and watch the curve progress. After 26 years of back pain and growing postural deformities, she found a life-changing rehab-based Scoliosis treatment . With this newfound hope, she began to share her story. Her blog, The Crooked Life, is a way for her to share her story and to encourage others who struggle with Scoliosis.

 

 

Marce didn’t just stop there, though. She continued to help others by starting The Crooked Life Foundation with her husband, Rob Kuhns. The Crooked Life Foundation has an initiative called “Project SAS 10”. This project’s goal is to provide families who need it with Scoliosis Activity Suits, which are lightweight, neoprene supportive suits that work with a patient’s natural body movements to stabilize the body and reduce pain from Scoliosis.  Marce estimated that it would take a few years to be able to hand out 10 suits, so the project is aptly named “Project SAS 10”. So far, as of May 2018, they have given away 8 suits!!

Project SAS 10 is in action right now! The Crooked Life Foundation is doing a Scoliosis Activity Suit giveaway for suit #9 from now until May 18th. If you win, you get the suit, a consultation, fitting, and x-ray, which is a $1500 value. The winner will be announced May 20th. To find out more about this giveaway, go to The Crooked Life Foundation’s Facebook page or the Project SAS 10 page.  Make sure you check out everything else that Marce does, and show your support!

 

Crooked life 1

Written by: Cynthia Beauvais

Photos used with permission

HOPE for Adult Scoliosis Patients (Part 3 of 3)

If I haven’t made it clear already in Part 1 or Part 2, I absolutely LOVE the Scolismart treatment.  For so many reasons.  The Doctor who founded it (Dr. Morningstar) and those on his team (Dr. Dovorany, Dr. Stitzel, Dr. Siddiqui, and others) are all wonderful, caring Doctors who think far outside the box to find solutions to a problem, not just band-aids.  They work hard to make their suits comfortable and they don’t compromise quality.  And, the treatments really seem to WORK.  And, they seem to have promising data to support helping to reduce pain in adults AND in post-fusion patients.  This is truly amazing news!

This Week’s study is from 2017, and is called “Clinical outcomes of a scoliosis activity suit worn by patients with chronic post-fusion pain: 6-month case-controlled results.” by Morningstar, Stitzel, Dovorany, and Siddiqui.  You can see the full text HERE.  This study dives deeper into the effects of the SAS (Scoliosis Activity Suit) on Adults, looking at a population of post-fusion patients that approached the Scolismart clinics for treatment of pain for their Scoliosis.  The Doctors used both pain scale measurements, quality of life measurements, and x-rays to compare results in patients after 6 months of treatment.    The control group is a group of patients who approached the clinic for therapy, but that didn’t actually pursue treatment.  The Doctors were able to get pain scale ratings for the control group, but not x-rays at 6 months.  The assumption was that the x-rays would be very similar or, possibly worse, for the patients in the control group 6-months later.  And, since the main concern was pain reduction, the x-ray results at 6 months are really just additional information, not necessary to the core of the study.  The Doctors also separated the treatment group into three groups – the overall group, and then further into sub-groups, based on the type of surgery they had (Harrington rod vs. Pedicle screws)

The Doctors found that Cobb angles were improved in the treatment group overall, with more benefit to the Harrington rod patients.  Really think about that – fused or bonded spines getting improvement in Cobb Angle!  That’s amazing!  Pain scores also went down for the treatment group, with the Harrington rod group again getting more benefit.  And, the control group actually increased on the pain scale after 6 months.  SRS (quality of life) scores increased for the treatment group overall.  This is great news!

As I have stated in Parts 1 and 2, it is very difficult to get good research data in the realm of Scoliosis treatments.  There are so many variables.  But, I really applaud the Scolismart Doctors for their continued efforts to get data for us to mull over.  The reality is that the scientific processes may not be perfect, but my opinion is that they are very solid. And, they definitely can give an adult patient hope when trying to decide if they want to try such a treatment.  It’s not easy – the patients who get success have to do the WORK involved, but I have to imagine that the benefits are well worth it!

Click HERE for more information.

 

HOPE for adult Scoliosis patients (part 2)

This week, I continue my three-part series of Scoliosis Activity Suit study reviews with the 2016 study “Radiographic, Pain, and Functional Outcomes in an Adult Post-Fusion Patient Using a Scoliosis Activity Suit: Comparative Results after 8 Months,” by Dr. Morningstar, Dr. Dovorany, Dr. Stitzel, and Dr. Siddiqui.  You can find the entire study HERE.  This study, as opposed to the study I wrote about in PART 1, is about just one patient.  It’s a case study review of a 59-year-old female who had fusion surgery at age 19 and then, in her second revision surgery a few years later (in 1992), had the hardware removed.  She started experiencing high pain levels about 5 years after the hardware was removed. When she came to the Scolismart clinic, she was in significant pain about 75%  of the time.  This is most likely something that many readers can identify with.  When she was first fitted in the Scoliosis Activity Suit, she got quite a bit of correction while in-suit (about 5 degrees for both curves).  She was diligent in her at-home therapy and went back a month later, at which point she told the Doctor that she wanted to use the suit for 2 hours per session, instead of 1.  She was getting enough pain reduction that she saw the value of increasing her time in-suit.  She also continued to do the exercises that she was given.  Six months later, she came back for a follow-up.  They took an x-ray after the patient hadn’t worn the activity suit for 24 hours, and her curves were both reduced approximately 20 degrees!  But, most importantly, her pain and well-being scores both improved by 60%.  These results are very exciting.

The authors acknowledge that this is just one patient and that more research is definitely in order to examine results in a larger population.  And, they hypothesize that these results may not be able to be achieved in post-fusion patients with the hardware still intact.  But, this is, again, hopeful for adult patients suffering with Scoliosis.

Hope alone can fuel people through a hard day, a hard week, a hard month.  I hope that you let this fuel you if you are one of the ones suffering.  And, remember that a case study of one person may not apply to you, but it COULD apply to you.  If you are interested in learning more, or getting on an email notification list for the Scolismart direct-to-consumer release, you can click HERE and learn more.  I really believe that the work the Scolismart Docs are doing will change the trajectory of Scoliosis.  I know the Docs personally and know they genuinely care about obliterating Scoliosis.  Check back next week for Part 3 in the series.  Have a great week!

sas study 2

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.

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Visual representation of a patient in and out of the suit.

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.