A Member of the Crooked Spine Club – About My Life With Scoliosis

 

Prior to surgery. This wasn't even at it's worse.

When I was just a baby in diapers, my Mom noticed that my hips seemed to be uneven.  She mentioned this to a few doctors and they told her she was just an “over-protective mother.”  As I got a little older, she noticed the same thing.  School nurses who screened the students and real Doctors who completed physical exams on me used the same phrase, “over-protective mother.”  Well, if it weren’t for that over-protective mother, I may not have survived through my teens.  I have a little thing called Scoliosis.

Scoliosis is a medical condition in which a person’s spine is curved like an “S.”  Remember on the movie Forest Gump, when he had the leg braces?  He said, “My momma said my back’s crooked like a question mark.”  Looks like his character had Scoliosis too.  Some cases are very minor, no surgery or back braces required.  Other cases, like mine, require major surgery.  Many people I speak to don’t realize how severe this can be.  I’m not sure my parent’s even knew. 

I was diagnosed with Scoliosis when I was about 7 years old.  I remember going to a few different Doctor’s for opinions.  One in Bangor, another in Boston.  Then, my parents were referred to The Shriners Hospital.  Most people think of the Shriners as a hospital for children who had been badly burned in a fire.  They do much more than that.  They help children all over the world who suffer from diseases like Cleft Lip, to children who have Cerebral Palsy.  From Spina Bifida to children with Flat Feet.  They really do it all.  And they are amazing at what they do.

The Shriners Hospitals offer local clinics for their patients.  I remember going to one and the lobby was full of clowns.  I’ve never been a fan of clowns, but these seemed ok.  They were interacting with all of the children and parents in the lobby, making animal balloons or what not.  My nerves seemed to ease.  I met with the nurses and the awesome staff.  I met the Doctor who would ultimately save my spine. 

 I was fitted for a Boston Back Brace.  Some kids can get away with just wearing that until they are done growing.  This was one of the most uncomfortable things to wear.  A thick, plastic material, it’s a brace that fits under the arm, extending around the rib cage, lower back and hips it is worn under clothes.  I actually played sports still while wearing this thing.  The only activity I had to give up was soccer.  The director at that time insisted I wear bubble wrap around it to play.  Not wanting to be labeled, “snap, krackle, pop” on the soccer field, I decided that would be one sport I needed to stop.

After wearing the Boston Brace for 18-23 hours per day, it was advised that surgery was a must.  My spine was curving out of control.  I had to have surgery and I had to have it fast.  Of course, my Mom & Dad didn’t tell me at that time, but without it, I could suffer from heart or lung problems in the future.  My spine was curved so much, it was crushing my heart and lungs.  The Doctor never mentioned this in front of me of course, I was only 9 or 10 years old.  But, my parents knew and they chose the best thing for me.  I was going to have fusion surgery.

After a trip to Disney (thanks Mom & Dad), several Catscans, MRIs and computerized lab floor tests, it was time to get ready for surgery.  In May of 1994, I went into the Shriners Hospital in Springfield, MA.  As a kid, any surgery is scary.  Especially a scary back surgery.  I felt ok though.  I remember my parents never left my side.  I had my favorite wrestler t-shirt on my pillow for a pillow case and my brother, sister and sister-in-law drove down to spend some time with me.  On the night before surgery, I remember being in the bathroom with my Mom.  “Mommy,” I said.  “Am I going to die?”  Mom gave me a big hug and never let me see her fear.  As a mother now, I am sure she was scared to death. She knew that the possibility was there. 

Fusion surgery involves attaching rods, hooks, wires or screws to the curve and small pieces of bone are placed over the spine. The bone pieces will grow together with the spinal bone, fusing it in the proper position.   In my case, the bone used was a rib that they removed during surgery.  The rods they used were Titanium and will never be removed.

Titanium rods and yes, this is my spine.

I was in the ICU unit for what seemed like minutes to me, probably weeks to my parents, but was actually only a few days.  I literally had to learn how to walk again.   I’ll never forget the small details of the hospital or a few members of the staff.  It’s amazing what burns into your memory after going through something like this.  After almost 4 weeks, I was ready to go home. 

They didn’t know if I would be able to walk, but I did it.  I wasn’t supposed to play sports again, but I did it.  I wasn’t supposed to dance, which I loved so much.  I did that too.  I wasn’t supposed to carry children, but I did it, 3 times as a matter of fact.  I did have to schedule c-sections due to the placement of my hips, but that didn’t stop me from being  a Mommy. 

You can see from my X-Rays how severe the curve was.  It still is curved of course, but is not as bad by a landslide.  I just want people out there to read and see that this is a serious condition.  It’s not just a curve, it’s something that can harm some of your major organs if not caught and treated.  Many times it gets overlooked by parents and school screenings. Here are a few signs to look for in your children:

  • One shoulder may appear higher than the other
  • One shoulder-blade may stick out further than the other
  • One hip may appear higher than the other
  • Their head is not properly centered over their body
  • When bending from the waist, the ribs on one side are higher
  • Their waistline may appear flat on one side

If they show any of the symptoms, bring them to a Doctor.  Get more than one opinion if you have to!  Go with your parental instinct.  My Mom did and I am so thankful she stuck to her motherly instinct.

If you have any questions, feel free to comment.  You can also visit the Shriners Hospital website to inquire about other treatments they offer.  You can also make a donation so they can continue doing what they do.

http://www.shrinershospitalsforchildren.org/CareAndTreatment/Orthopaedics.aspx

xoxo,

Stacy

Headed into surgery.

 
 
 

Gate Lab

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Walking for the first time. 🙂

 

In my spine chair.

 
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3 Comments (+add yours?)

  1. coteanthony1983
    Sep 05, 2011 @ 07:59:08

    I remember you coming into school and doing a mini presentation in the home-ec room about all of this. You even brought in that god awful brace in. I can say firsthand that it was incredibly thick plastic and had little to no mobility to it. I’m really glad you took the time to let people know how serious this condition can be, a little awareness can save a life 🙂

    Reply

  2. Tahnoon Esmail
    Oct 02, 2011 @ 23:37:05





    Here are very useful Scoliosis VIdeos

    Reply

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