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@realitytest

My problems don't sound identical to yours (I had no problems with digestion, for one), but then my own increasing deformity, led to my needing a complex spinal reconstruction in 2016 at nearly 70, because my extreme kyphoscoliosis was making mobility almost impossible. (That was because, of the considerable pain). Over time I had lost 5 1/2" in height (I was told my back was 'collapsing').

I WAS relieved of my extreme deformity, though, by major reconstructive surgery (I was fused with titanium from T4 to the pelvis with bone laminectomies! ) I only regained a single inch in height net, but that's because of all the height lost from disk compression. I am also super stiff (d'uh!) from the lengthy fusions so that such formerly simple tasks as putting on shoes and socks are great challenges. So is toileting, but having a Bidet installed hade all the difference there, though not a complete fix. I have "grabbies" to reach items out of reach and which had fallen.

Before this surgery I also had minimally invasive neurosurgery on my cervical spine to relief cervical stenosis which had grown to impinge on my spinal cord to where I was told I was certain to perish from paralysis - chest down - if I suffered even the most trivial jolt/injury which would lead to respiratory failure.

I gradually realized that all these problems stemmed largely from undiagnosed Ehler Danlos Syndrome (hypermobility type). And to think I had thought I was blessed with extreme flexibility - a great plus in my gymnastics, yoga and bellydancing!

(Numerous other joints required surgery over the years too - i.e., basal joints of both thumbs and repair of extreme bunions on my wide feet.)

I went through that long operation with a much researched surgeon who specialized in the surgery, after having had to delay it for many years because I had no one to help me with the recovery, During that time, nerve damage (which could been repaired) became permanent leaving me with double incontinence (Cauda Equina Syndrome) and more insensitivity. I also woke from surgery "toeing out" on one side which creates a gait abnormality. (Surgeon denied any connection with this new development!). Likewise, I now have numbness across my mid-lower back and perineal area (the worst is when I have an itch I can't relieve!) I also was left with "flat back syndrome" which is gradually leading me to walk tilted forward - and carefully!

I now realize I was overly impressed with this famous surgeon (I had interviewed seven) who was over-rated, being better as a researcher than a surgeon.

At almost 77, I am looking into a revision surgery though with considerable trepidation (I hope the new surgeon can correct the flat lordosis), and hopefully also the "toeing out". (I know it's too late to do anything about the nerve damage.)

You are older than me, and have different related medical reason which might mean such reconstructive surgery might not be allowed (Worried about your compression compression fractures! How is your bone density?) Some surgeons don't want to operate on older patients, anyhow, but there are at least a few competent ones who do (I did a LOT of homework!). It's an intrinsically dangerous operation with no guarantees, and people only go through it (older people particularly) because they can no longer tolerate the pain.

Note, if turns out that your skeletal deformity is behind your severe digestive problems, consider that another of the eventual risks of kyphoscoliosis (perhaps the most common) is that patients lose the ability to breath normally because their lungs are compressed! they need to check up your recovery over time.

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Replies to "My problems don't sound identical to yours (I had no problems with digestion, for one), but..."

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.