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.

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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!

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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!

 

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Written by: Cynthia Beauvais

Photos used with permission