Hi @realitytest - I see your message is from 2022- are you still on this feed? I can relate to so much of your experience, I hope I find you and you are well!
I had extensive spinal fusion surgery in Jan. 2023, (T2 to pelvis). I had scoliosis with a 70 degree curve that was torqued as well. I'd lost 4 inches in height- and only got 1 inch back, too! Before the surgery I had a protrusion off to one side that looked like I was pregnant, and it was as hard as a rock! (I've been told I may have Ehler-Danlos, hyperflexibility type- do they have a test for that now?) I was really lucky not to be in alot of pain- although I limited my activities to avoid it.
Since I had neck kyphosis in addition to the scoliosis going in to the surgery, maybe it's to be expected that my neck, and the top of the surgery is "collapsing" forward, the rods have been almost poking through my skin at the top starting at about 7 or 8 months. I dread another long surgery- I had delirium for weeks after the last one, as well as vertigo. At least now I know great exercises for vertigo and dizziness, and I'll be prepared next time.
Unfortunately there are problems that can only be corrected by surgery at this point- (hopefully!) That includes a hump at my spine below my shoulders, that gives me a "dowager's hump", and appearance of always shrugging my shoulders, along with pressure, spasms, and large visible indentation in the front of my neck! The fact that I look visibly affected by this thing- and I look worse than I did before the surgery- (I have a growing collection of beautiful large and small scarves)- makes me so upset.
I too chose a surgeon who's world-renowned, recommended by other surgeons, and specializes in women with scoliosis and osteoporosis. I'm in the process of deciding whether to go back to him for the next surgery- I'm in a process of meeting with or checking out other options.
I'm so sorry to hear of other women dealing with this tangled bunch of stuff happening in our bodies. It's surprising to see some who have almost identical experiences! I'm sitting here writing, I feel and hear how brave you all are, and some for many years (so I guess that must apply to me, too).
It's helpful to hear how people exercise- I need it for how frustrated I am. I'm doing Aquacise class 2x week (we call it Swim Team- laughing and singing to the loud music is the most joyful part of my week!) and I'm back on the elliptical and Airdyne bike at the club, too.
OK, well... it's almost 2 AM. I'd really appreciate hearing from anyone, privately or in the group.