My Scoliosis Journey — by Suzie Schier
Our seventh TOPS 'Back Stories’ guest blog feature writer is Suzie Schier, born in Manitoba and raised in Nelson, BC. Inspired after finding our blog online, Suzie wrote us about her experiences in the 1980s, and kindly offered to share more details of her journey with our readers.
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The year was 1982. Outside at lunch one day, a kid looked over at me and asked, “Why does your back stick out more on one side than the other?” I was 12 years old, in Grade 7.
I don’t remember what I said, but of course at that age I went running home to tell Mom and she took me to our Family Doctor.
We lived in a small town in the Kootenays (Nelson, BC), and he referred us to the best Children’s Back Specialist in the country, Dr. Tredwell at Children’s Hospital in Vancouver, BC.
After driving down and meeting with Dr. Tredwell a couple times, having x-rays done, etc, he said my spine was a 75-degree angle, and one of the worst he had seen. It literally looked like an “S” shape. He wanted to do surgery right away.
He did the first surgery in 1982 and put the Harrington Rod in, stretching me 2 inches. I was in the hospital for a month and on a Stryker Frame for at least 2 weeks of that time, where they flip you every four hours. It was not pleasant, but they also injected me full of Morphine every four hours which made it tolerable. At the end of the month, I was helped to sit up and they put me in a Milwaukee Brace (he said I was too small for a body cast). I was not allowed to be out of that brace. The first six months, my Mom had to roll me out and sponge bath me and, after that, I was allowed out for only one hour a day, but no running, etc.
Dr. Tredwell said he wanted to fuse my spine once I had completed growing in a couple years, but my bones matured so fast that he ended up doing it the following year in 1983 - so once again, we drove down to Vancouver to the (new) Children’s Hospital and I had the Spinal Fusion surgery. Again, I was in the hospital for a month, and on the Stryker Frame for half of it. Same deal when we got home with having to wear the brace all the time. Part of my incision got really infected and my Mom had to treat it; I remember it being so painful and itchy. Dr. Tredwell told me to come back in one year and he would ‘jack up’ my Harrington Rod.
My Grade 7 teacher was really nice and in my absence had the class read ‘Deenie’, a book by Judy Blume about a 13-year-old girl who is diagnosed with scoliosis, and she explained to them that’s what I had, and they all wrote me letters and they were kind when I returned - but then I had to start Grade 8 at the Junior High School in that big bulky brace. That was not pleasant in the least, but I survived.
Grade 9, another new school, but brace off. I started being bad, so they allowed me to take the bus into Nelson to my original Junior High to finish Grade 9, which meant they all got to see me without my big ugly brace on 😊.
I started running away from home at 14 so, needless to say, I never made it back to get my Harrington Rod jacked up.
My back didn’t bother me too much over the years, but I have a high pain tolerance, and you learn to live with no mobility, but once I reached my early to mid-40s, I started getting sciatica problems because the remaining discs at the bottom were unfused and squishing and rubbing together, so I went and saw a Specialist in Vancouver at the Spinal Cord Centre, Dr. Dvorak, who is their Director and top Surgeon. He operated in 2010 and fused two more vertebrae and put in a ‘cage’. He was going to remove my rods, but he said the bone was so grown around the rods that he couldn’t even see them. I was kind of worried about that. No Stryker Frame this time, and they actually make you get up and walk the same day, but—oh my God—the nerve pain in my upper front thighs was unbearable, and in my back. It was so bad even the Morphine didn’t help. Finally, he put me on a really heavy dose of Gabapentin and that helped the nerve pain. It was a horrible time.
Now, here we are in 2023, and I have that same sciatica pain and more sharp pains in my right hip. Dr. Dvorak told me there are two bones rubbing together in my hip that he may be able to ‘chisel’, but as far as my spine is concerned, there are only two unfused discs left, and the only operation left to do is to fuse them to my pelvis. Apparently, this surgery is major: he has to go in through the front and back and you are bedridden for two years to heal, and even then there’s only a 60% chance that it will get rid of the pain. Right now, I can’t bend 98% of my back, and if they do this surgery, I would have absolutely ‘0’ mobility. It's kind of a no-win situation any way you look at it, but it is what it is….
And that is my Scoliosis story to date. I’m 53 now and it’s still not over, so I guess I would say it’s a lifelong journey once you get the diagnosis, and you just have to learn to live with it the best way you can. 😊
Questions for Suzie? She can be contacted here.