Finding People Who “Get” You

Credit: Val W. (Please scroll to the bottom of this post for information regarding her fundraiser for Brainstrust or click here.)

The second most painful (literally) experience of my life happened about 16 months ago on June 28, 2013. Actually, it wasn’t so much painful, as frustrating and irritating and it often times still is today. But through this experience and even months before it, I found myself becoming a part of a community who all shared a common “bond”. And because of our similarities, we were able to help each other, provide advice, and very frequently support or provide a virtual shoulder to lean on.

Let me explain my predicament from the beginning; at the end of my fifth grade year, I was diagnosed with idiopathic scoliosis. Scoliosis is a condition where the spine has a curvature in it measuring more than 10 degrees and the idiopathic part means I was not born with it and in this case there is no known reason for it showing up in adolescence (although in my family it is likely hereditary). Anyhow, after being diagnosed by my pediatrician, I was sent to an orthopedic specialist who took x-rays and confirmed my condition. There is no definite cure for scoliosis but the first and most common option is bracing to slow (not necessarily to prevent) the progression of the curve until the growth plates fuse.

We opted for this first line of treatment so a few months later, after measurings and fittings with another specialist, I received my brace which I only wore at night while asleep. See below:

Import 1 9-29-13 301

While this did help to significantly slow the progression of the curve, it still continued to grow from about 20 degrees to eventually 48 degrees. Around December of 2012, during my 6 month appointment, my doctor took his usual x-rays and presented us with our options. Because the curvature had progressed to nearly 50 degrees and was beginning to cause pain, we were given the choice between continuing to try bracing (which evidently was unsuccessful), or opting to do the surgery. The corrective surgery for scoliosis is called “spinal fusion with instrumentation”. It basically means that in order to reduce and minimize the curve, titanium screws and rods are secured to the spine to stabilize it in order to support the bone graphs, which will eventually fuse the vertebrae together.

A few months later we decided to proceed with the surgery. Since it was now my eighth grade year, we decided to wait until after school got out in late June to schedule the surgery. In early May, the date was set for June 28,2013 at 7:00 AM.

Before the day of the surgery, we spent the prior weeks preparing by going to the hospital to have tests done and having my parents donate 2 units of blood between them for the procedure. On the day of, we left the house around 4:30 AM because we had to arrive at the children’s hospital to check in by 5 AM. After checking into the pre-op area, we were taken to one of the rooms for basic vitals tests and to start an IV. The next two hours flew by and before I knew it, I was being taken into the operating room. The last thing I remember until waking up in the recovery room was a nurse putting sticky things on my feet-probably part of the nerve monitoring they would be doing during the operation.

Throughout the chaos that ensued following our (my family and I) decision to have this major surgery, I found a Facebook group made up of other people who went through or were presently going through the complications resulting from scoliosis and other spinal deformities.

You could ask any question and feel reassured that the community and group members would give their best and most accurate response, each from their own perspective.

During this process and my long recovery, they quickly and willingly answered any question I had and provided their own stories and tips. One of these wonderful people even sent me the amazing picture at the top of this post.

I will continue the rest of the story eventually. But below is the before and after x-rays, the one on the left is about 2-4 weeks before and the one on the right is about 2 weeks post-op.

Import 1 9-29-13 347


Help Val, the wonderful woman who created the painting at the top of this page, raise funds for Brainstrust, a brain tumour help group, by purchasing handmade friendship bracelets. Click here or copy and paste this link:


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