My Scoliosis Journey

This is very personal story and not one that I have shared before publicly.  The reason that I am sharing it today, is that June 27, 2020 was International Scoliosis Day. And if telling my story helps one case be diagnosed, than this story has been worthwhile.

Simply said, scoliosis is the abnormal curvature of the spine.  Many people are diagnosed with mild cases of scoliosis and feel only mild pain or not pain at all.  

Before and After

Diagnosis

I was diagnosed at age 13 when my mother was making me a dress for a dance competition.  She pinned the dress when I was wearing it, then when she laid it down flat it was crooked.  She kept telling me to stand up straight.  

You have to understand, that its not like my body was not being looked at.  I was a competitive dancer and was in classes wearing a body suit most days.  Nobody noticed anything wrong.

Back Brace

Once I saw my family doctor, I was quickly referred to and  admitted to Toronto’s Sick Kids Hospital. We were told that I was a candidate for surgery, but my parents preferred a less invasive route. So I stayed in the hospital for a week while a Milwauki back brace was customized for me. 

When I look at this picture, I honestly cannot believe that I wore a brace like this for 23 hours per day for 2 years. The modern braces are much more slim and fit better under clothes. Sadly, it is unusually young teens that have to wear something like this to stop their curve from getting worse. It is very hard on self esteem at that age. Mine came off at age 16. 

After the Brace

At the time my brace came off, my two curves measured at 46 and 44 degrees. That means, that if you looked at me straight on, my spine was in a big “s” shape.  The bottom was 46 and the top was 44.  Because the two curves were fairly balanced I did not look really crooked.  I was told that it was unlikely it would get worse and I was discharged.  

I lived the next decade with manageable back pain and headaches.  As a young adult living in Toronto, I made an effort to get in to see my original doctor and found out that he had passed away, so I bounced around to various back specialists and pain doctors to the next two decades.  But, as a mom with three young kids I was too busy to think about my own back.  

In my 40s my back pain took a significant turn, I had shrunk in height and had non -stop pain. It was hard to sit or stand for long periods and I had constant headaches. I knew that it was time to investigate surgery.  I contacted a lot of people online asking for recommendations for a spinal surgeon and the same name kept coming up.  

Spinal Surgery

At my first appointment, it was explained  that my lower curve had increased from 46 to 72 and the top had increased from 44 to the mid 50s.  The surgical procedure would be to put screws into my head and in my knees and use weighted tension to straighten out my spine as much as possible.  Once this was done, they would cut my back open from top to bottom, drilled into my vertebrae installing a hook on each side of the designated vertebrae.  A titanium rod would be installed on each side of my spine and fastened to the hooks.  The vertebrae with the hooks would be packed with ground up bone that would eventually fuse together to create a column of bone. This would become my new spine.  

It was a big thing to consider, as it was major surgery. I thought of all the scary possibilities.  I could need a blood transfusion or even die. Afterward, I could have nerve problems, problems with fusion or even break a rod.  If I knew that almost all of these things would to me, happen, I am not sure I would have proceeded. 

Surgery One

My first surgery took place on January 18, 2012.  It was 8 hrs long and I had 18 vertebrae fused.  I felt like I was hit by a bus after the surgery, but I grew 5 inches in height in one day.

Recovery was not easy but after a few months I was feeling pretty good and tall.  The only issue I was having was nerve pain.  I had trouble sitting for any length of time and I could not lean up against a chair without a sharp nerve pain.  

Surgery Two

In April 2013, I had a revision surgery to remove the screws that were causing the nerve pain. Recovery following that surgery was easy.  I was back running, which I had not done in years, due to back pain.  I was pain free and on top of the world.  

Surgery Three

On June 30, 2013 I was emptying the dishwasher and I heard a loud crack.  My daughter came from the next room and asked what the noise was.  I could feel a burning sensation in my back, so I knew it was not good news.  We were were just heading into a long weekend to celebrate Canada’s birthday where everything was closed, so I moved around very carefully for a few days waiting to see doctor.  Once I had an x-ray it was confirmed, that I had broken one of the rods in my back.  A few weeks later I was back in the hospital for my third surgery.

It turns out that the break was caused 1) because the wrong rod was put in (don’t get me started) and 2), because there was still too much of a curve in my lower spine for it to fuse properly.  As part of the surgery, they broke the bone that had deliberately grown to support my spine, to try and straighten in further.  I will not go into the technicalities but this procedure was not successful.  

Now

As it stands now, my quality of life is definitely better than if I had not had surgery at all.  But, much of my life focuses on managing the pain that I continue to have.  My physio is really awesome and that is helping to address pain and to correct the imbalances that were caused by being crooked for so long.  

I still can’t walk, sit or stand very long, but I rarely have a headache anymore, so that is a win.  ButI do try and do daily stretching, regular hot tubs and I bike and swim.

I would still encourage any young person who needs surgery to have it as, a young person’s spine and body is more likely to easily adapt to its new position.  Many people have the surgery and then move on to have a pain free life after. 

Always 

Leslie