muscle mass gone after scoliosis surgery

As a teen I had been put in a milwauee brace for scoliosis. After several years it corrected to a certain point and I ejoyed life. Then after having my 1st child I started having back pain again and the spine had moved even more, so I opted for the surgery.  First one was taking part of rib out and using it to help correct my curve forward. Then a week later I had the other big surgery of puting in 3 harrigton rods.  Ultimately 5 years later I had them removed as pockets had developed around some of the hardware and was causing pain.  Now, I am 53 and my back is in horrible condition.  I have Ankylosing Spondylitis in the lower part but what concerns me the most is the area from my lower neck to bra line. (original surgery was from lower neck to mid lower back-sorry forgot the names of the exact measurement). Both shoulders have increased in size, very hunched and rounded.  The surgical area on the spine is sunken in as far as it can go I believe. It looks as if no muscle or tissue is around this area at all, ,just disappeared and concaved in. I have tried pt on my own, but havent noticed any change.   I am having more and more pain in my lower neck area and my rib area.  I should also tell you I have Multiple Sclerosis also.  Yes, I was given the bucket runnith over challenge and yes all you can do is try to deal with it.  Has anyone heard of or has results of scoliosis surgery doing this after surgery?  I have not yet contacted an orthopedic dr regarding it as I am afraid they will just say I will have to deal with it.  I am also freightened with the aspect of the AS attacking the spinal areas that are not fused.   Any ideas are most welcome.  Thank you.