Connect with others with Severe Scoliosis + Restrictive Lung Disease

Hi,
I'd like to connect with others who have severe scoliosis that has caused Restrictive Lung Disease.
My scoliosis curves are in the 65/50 degree range and a Lung CT scan showed restrictive lung disease, trachea restriction and severe air trapping. I'm in my 50's, and wore a Boston Back Brace as a teen in the 1980's when my curves were under 40 degrees.
I've been lucky to have minimal pain, in part thanks to yoga and chiropractic care. My shortness of breath and months long bouts of pneumonia or bronchitis with each common cold has been a problem for decades. My asthma and allergies are mild and well controlled.
My doctors in Oregon only feel comfortable within their area of specialty. The pulmonologist cannot talk about how my spine curvature is negatively affecting my lungs. The orthopedic surgeons will not look at my Lung CT scan. They say that until my curvature reaches 90 degrees, my lungs will not be negatively affected. Adult corrective spinal fusions are recommended on the basis of severe pain only.
I know this medical combo isn't very common, but being in touch with others who likewise have severe scoliosis and restrictive lung disease would be really helpful.