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Kaitlyn Boyle

Hi! I’m Kaitlyn

I was diagnosed with scoliosis at the age of 9 at a pediatrician well visit.  The doctor found that I had a lumbar curve in the high 20’s as well as a thoracic curve in the low 20’s.  I immediately began wearing a Providence brace at night.  At first it was a fight, but once I got more comfortable with it I was very compliant in wearing it to bed without too much fuss.  We visited the orthopedic doctor every four months and were continually told that “everything looked good”, so we felt confident that I was going to get through this without much worry.

Fast forward two years. I started complaining that my brace hurt and I didn’t want to wear it.  I had been wearing the same brace the whole time so we made an appointment earlier than planned to see about a new brace.  I was shocked when the doctor told me that my curve was now 41 on the top and had actually been getting worse over the last year! We decided to switch to a Boston brace so that it could better address my high curve, but I would have to wear it pretty much full time.

I wore the brace to school once and came back refusing to ever endure that again.  I said I couldn’t even go to the bathroom without help and I was NOT going to do this!  We watched videos online of girls showing how to do cute outfits and we did a ton of shopping hoping to find ways to make this acceptable to me, but I was quickly pulling away from social activities and friends and changing from the happy energetic girl that I was once was. I worried I was going to have to give up volleyball, a sport I loved, and I refused to spend the night with friends or participate in activities because I was embarrassed about my shoulder blade sticking out.  

My mom spent hours pouring over the internet and ruling out several of my options, we decided to visit Shriners in Philadelphia to talk to Dr. Cahill about VBT.  He felt I was a perfect candidate and we jumped in head first without looking back.  My thoracic curve was at 46 degrees on the day of surgery and lumbar was still in the high 20’s as it had always been.  Dr. Cahill tethered the top of my spine and left the bottom alone. Six weeks later I was back playing volleyball.

Since then, my life has been a series of amazing events that I think all would have never happened if I’d stuck fighting the brace! I won a Disney essay contest with a story I wrote about my VBT experience and won premium annual Disney passes for the family for a year.  I had an opportunity to speak in Washington DC at the FDA spinal devices meeting about my outcome and experience with VBT.

I made my club’s national volleyball team and at the national tournament, I was scouted by an agent for a major modeling agency and I have been modeling for the last four years. I also write a monthly column for a modeling magazine.

I went from 5’4 on the day or surgery to 5’11 now, five years later and my spine is almost completely straight! It has been inspired me to want to become a doctor. I have been working hard to graduate from high school a year early.  I have been admitted to the University of Central Florida for the fall, skipping my senior year in high school.  I hope to become a radiologist.

My life is so much different today than what I feared it would be five or six years ago.  I had visions of a lifelong deformity and pain.  Instead I have experienced humbling support from friends and family and unbelievable gifts of opportunity that would have never been presented to me if I had chosen a different path.  We are ever grateful for the surgeons who have the passion and vision to offer something new and better for their patients. 

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Meaghan Duggan

Hello friend, 

You have just found out that you have scoliosis.  I know what this is like; I was diagnosed with major advanced double curve idiopathic scoliosis when I was 14 years old.  My Doctor told me at my second appointment, “If your parents don’t brace you immediately, I will most likely refer you to Johns Hopkins for surgery at our next appointment.” His words were not good news for me, just like I imagine your scoliosis diagnosis is not good news to you.  

Scoliosis will test your sanity, but I promise you are about to become stronger.  I know this because scoliosis has made me stronger.  Here are some things I struggled with in my scoliosis diagnosis and what I learned in the battle:  

Scoliosis made me feel broken.  When I looked at those first x-rays, a list of things ran through my mind, but one of the first thoughts I had was this: There must be some mistake.  That picture of me is broken.  

But guess what?  

There wasn’t anything broken about me.  My back was bent, but it was not broken. Those curves became part of my life–up and down, left and right, curved and straight.  In the end? Those curves were mine.  I chose what to do with them and that meant I made the most of them. 

Scoliosis made me feel ugly because none of my friends had this and they couldn’t relate to my struggle.  I would compare myself to other girls, noticing how easily they were able to bend at the waist or not worry too much about what they wore.  They didn’t have to hide a brace, after all.  After a while, however, I got tired of worrying about an uneven waistline because my brace jutted out from underneath my clothes. I accepted the plastic as my armor in the battle and I quit being so self-conscious. This was a major victory (you will have them too)!    

I admit I also experienced a lot of pain.  The physical pain was extremely hard for me; it tested me.  It’s hard enough to manage the peer pressure of teenage life, the natural changes your body endures, and the desire to fit in with your friends.  When you throw a scoliosis diagnosis into the mix, and you must now suffer physical pain, it all seems so unfair.   A teenager should simply not have to go through this, but there I was with a scoliosis diagnosis and now here you are too.   

I’m sorry, it’s hard, but I know you can do it.  You will do it because you are a fighter.

The pain will come in waves.  At high tide, I suggest making the most of it–that’s what I tried to do.  I would play a game, go for a run, or hang with a friend.  Don’t sit around in your pain, live your life instead.  

If you have a bad day (and you will), promise me you will go easy on yourself.  This scoliosis stuff is hard.  Just pick yourself back up, dust yourself off, and hop back in the saddle. 

Let me leave you with this bit of news:  I’m almost finished bracing.  When I started on my brace journey, 90% of patients who have a curve as severe as mine must have a spinal fusion with a long, painful recovery.  

I defied the odds.  

With my hard work, determination, and 23 hours of plastic brace living, I went from a 90% chance of back surgery to a million in a half chance.  In other words, there is virtually no likelihood I will have to have surgery. Ever.  

Here’s the good news:  if I can do this, you can too.  

You got this! I believe in you.  Go show the world how amazing you are and show them with a scoliosis diagnosis.

 

With much hope and love,

Meaghan Duggan

 

(If you want to chat about the challenges you are experiencing, please feel free to contact me at scoliosisgirlmtd@gmail.com.  I would love to talk to you, support you, and even pray for you!)  

 

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Katie Dowell

Hello,

My name is Katie Dowell and I am running for Mrs. Texas. Representing Houston County. Which is located in Deep East Texas or like we call it “paradise in the pines”.

 I was diagnosed through a routine screening performed at school when I was 11 years old. My first surgery occurred when I was 13 years old and included the placement of metal rods and two cadaver bones in. The nine hour surgery also consisted of two blood transfusions and was an experience I will never forget. Waking up with a swollen face, blood clots on the bottom of my feet and having to learn to walk again was what I thought would be the worst of it.

However, things took a turn for the worse. After a year of fever, nausea, tremendous weight loss and several rounds of physical therapy, I was told that I had an infection in my back. At this point I was 14 years old and felt like my outlook on life completely changed. I was angry, and I felt that my quality of life had decreased. I already had one big ugly scar on my back and now I would have to be cut all over again, not to mention the chronic pain that seemed to never go away. When the infection was found I was taken  into emergency surgery to have the rods removed and to get a biopsy of the infection. I spent weeks in ICU and, quite frankly, I only remember certain things. One moment I specifically recall was when the doctor came in to tell me that I had to have yet another surgery and have what they call a “wash out”. This was traumatic news for me, and for a 14-year-old, the scariest moment of my life. At that point I felt like dying would have been easier than living through more needles and medication. My medical team eventually found an antibiotic that could kill the infection that was in my body, and I was finally on my way to being somewhat normal. I spent many more years in physical therapy and learning to deal with the chronic pain that comes with this disease. 

I am now 24 years old and married to my best friend. But to be completely honest, there were times when I never thought that I would see this day. Extreme anxiety followed me around after the traumatic experiences of multiple surgeries. There were days I did not want to live any more because of the pain, there were days I felt ugly and deformed, there were days I did not think I was good enough. Thank goodness for my faith in God and the support of my family and friends,my mental health is in a much better place and I have learned to cope with the pain.

As a contestant in the Mrs. Texas pageant, my platform is advocating for early-stage Scoliosis detection and maintaining good mental health throughout chronic illness. I hope to use this opportunity to reach young children and teens who have faced similar challenges based around medical deformities and disorders, and to show them they can overcome whatever circumstances they are facing. They are not alone. No matter the scars, brace, uneven shoulders and hips, a rib that sticks out, anxiety, chronic pain – none of that takes away from life as a normal person. Our experiences make us unique, our scars make us beautiful.

 

“Scars show us where we have been, they do not dictate where we are going.”

                                                                        ― David Rossi

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Kids Health Matters: Getting back in the game after scoliosis surgery

Kids Health Matters: Scoliosis surgery at Nemours DuPont Hospital – Tamala Edwards reports during Action News at 12:30pm on September 25, 2019.

PHILADELPHIA (WPVI) — Despite some setbacks, a young girl is back on her feet, doing what she loves and getting back in the game after surgery for scoliosis.

12-year-old Brynn Eyler is back in her element.

She’s playing softball and field hockey.

Brynn was out of action all summer, following surgery for scoliosis – curvature of the spine.

Dr. Suken Shah of Nemours duPont Hospital says the curve was about 15 or 20 degrees when it first appeared at age 4.

Three years later, Brynn needed a brace, but just for overnight.

At first, it seemed to be working.

“Then she had another growth spurt 2 years later when she was nine and then it increased to where she had to wear it more frequently, up to 20 hours a day,” said mom, Deanna Eyler.

Brynn was very self-conscious about braces.

“I thought people would think differently about me, but no one really noticed,” she said.

“Her friends have treated it like it’s not a big deal,” added Deanna.

Life rolled along until the curve went to 57 degrees. That’s when surgery entered the picture.

Dr. Shah says the same number of boys and girls develop scoliosis, but…

“It’s almost 7 girls for every boy that ends up needing surgical procedure,” he said.

By summer, the curve was even worse and started affecting Brynn’s sports.

“My back would start hurting. And it caused me to not play as well,” she said.

With a system of rods and anchors, Dr. Shah straightened the twist, without sacrificing her abilities.

“It’s not in her lower back, and it’s not in her upper back area. So it doesn’t affect her mobility at all, which is absolutely amazing to me,” said dad, Chad Eyler.

From the day after surgery, Brynn’s been adjusting to new body mechanics.

“Initially, she struggled with just sitting. Her body was just completely readjusting to a position that it hadn’t known before,” said Chad.

Now, this gung-ho athlete is focused on getting back in the game – with one caveat.

“I can’t slide until January. It’s gonna be hard because I always slide,” she said.

 

This story is brought to you by 6 abc Action News, Philadelphia, PA

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