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Well, I did see the spine guy. He took x-rays and we talked. It turns out I may be around a lot longer than expected. Yes, the scoliosis is progressing and will continue to slowly progress ( maybe a degree a year), but it should not limit my lung capacity to the point of threatening my life.
The bottom line is there is nothing they can do to combat the creeping scoliosis. Surgery won't work because of my age and the OI. Surgery and a brace could actually make things worse. What if I sleep in a certain position? Doesn't matter. There is nothing that can stop my upper body from rotating to the left even more? The answer was still no.
Pain management and monitoring lung issues are now my focus. Keeping my bones from getting even weaker, either by modern methods such as injections or reclast infusion treatments, will be the goal now.
In a way I was relieved with the final verdict. As I wrote before, I've had my share of operations and rehab. Quality of life is key now. Adapting my wheelchairs to make life more comfortable is a possibility. Otherwise I need to accept my fate and move on with life.
As my friend Timmy said so long ago "I'm happy to be alive."
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