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I am 51 years old and was diagnosed with scoliosis at the age of 1. I wore a back brace for many years while the doctors waited for me to grow enough to perform surgery. I do not remember the exact degree of the curve prior to surgery but my mother said it was well over 100 degrees. At the age of 9 I had my first Harrington Rod surgery. It corrected it down to around 60 degrees. However, the fusion didn't hold and subsequently broke the rod so had the same surgery again at the age of 10. The second surgery was successful and three years later I had another surgery where they went in and shaved off some of the rib hump so the hump on my back wouldn't be quite so sharp. Fast forward about 38 years I could feel something had shifted and I was starting to experience shortness of breath. I had always had some back pain to one degree or another my whole life and at that time wasn't experiencing anything more significant to what the pain had always been. Just was getting fatigued quicker than before. So in 2016 I went to a scoliosis specialist and he said I would need to have surgery again and he called it collapsing spine syndrome with my spine collapsing above and below the Harrington rod. I also saw a pulmonologist then and they said my lungs were functioning at 60%. The pulmonologist said I would "have" to have the surgery if my lungs got down to functioning at 50%. I had another breathing test a couple months ago and it was still at 60%. So at least thankfully that is stable for now.
I don't have the info stating which of my vertebrae are fused. After reading some of the posts from members I can see I guess I should know that. The only info I have from 2016 says the curve was a 68 degree thoracolumbar curve convex with a single left scoliosis rod spanning the thoracic and lumbar spine, significant dextroscoliosis. I haven't been back to the back doctor since 2017 at which time it was unchanged.
I had decided I would hold off doing any surgery until I absolutely had to. Kinda was hoping it would just stabilize and never have to have it. The thought of them actually having to break my spine in order to correct it sounds pretty darn scary to me. All I can think about is what if it makes me worse than I am right now. So, anyway, the last three weeks I have been experiencing a constant dull pain in the middle/upper right part of my back where my scoliosis curve is. Lying down nor sitting helps. I can feel it going down my right arm as well. It's not a sharp pain like I pulled anything; just a constant throbbing. Kinda hoping it will just go away. The only way I get some relief from it is if I am constantly moving and walking but can't do that 24/7.
My question is did some of you get any second opinions before going through with surgery? Am I crazy to think and hope that they could ever find an easier way in the future to fix this instead of such a major surgery?
Thank you for reading my post. I know I jumped around a lot so hopefully it all makes some sense.