How do you manage the effect of Kyphosis and Scoliosis?

Posted by notmoff @notmoff, Sep 10, 2022

I am a 80 year old woman with many health issues with a question about the possible effect of increasing kyphosis and scoliosis that has me very thin, bent, twisted with a 5" height loss from osteoporosis and multiple compression fractures that I tolerated without any medication - a great example of self neglect and fear.

My thin frame has a very bloated gut attached I attribute to obstipation, probably from a very redundant colon and multiple abdominal adhesions.

Now a cardiologist and gastroenterologist attribute it largely to my restricted hunched body having no place for my intestine to go but OUT. The gastroenterologist did acknowledge the severe obstipation and recommended Motegrity to relieve some of the pain.

Does anyone with somewhat similar issues also have a very bloated gut? I plan to post this also on the tortuous colon thread in Digestive Issues.

Interested in more discussions like this? Go to the Bones, Joints & Muscles Support Group.

So glad to hear of your daughter's success too! You could have the Regenerative MD do an evaluation for you. It is 'lax ligaments' that are fixed, not really the joint's bones. I think of my treatments as fixes of the joint's over extensions 'collateral damage.'

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@rjmtwit

So glad to hear of your daughter's success too! You could have the Regenerative MD do an evaluation for you. It is 'lax ligaments' that are fixed, not really the joint's bones. I think of my treatments as fixes of the joint's over extensions 'collateral damage.'

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Yes, prolotherapy does not address bone issues. That is why the relatively benign x-ray that only showed mild degeneration, encouraged me to consider PRP.

My daughter was born with joints that are too loose and had two surgeries at age 10. PRP has really helped her.

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@windyshores

Yes, prolotherapy does not address bone issues. That is why the relatively benign x-ray that only showed mild degeneration, encouraged me to consider PRP.

My daughter was born with joints that are too loose and had two surgeries at age 10. PRP has really helped her.

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Sounds good. I ha e had PRP for another issue too, and it worked very well to remove scar tissue from a twice used groin incision and hip replacement.
And my daughter was born with mis-allignments too and slept in a leg brace for 6 months before she could walk, followed by special shoes. We were very lucky to have him as a pediatrician.
You might look for a Digital Motion Xray that measures joint movements. Chiropractors have them and radiologists read them and send them to your Dr. I had one when I was tying to figure out what turned out to be hypermobile cervical joint.
Good luck

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@notmoff

I look forward to your writing more about your situation. Although I am 20 years older than you, I have a lot to learn.
I hadn't thought of an ice pack to reduce my abdominal pain - a chronic ache peppered with sharp pains at the base of my bloat and radiating to the back.
I'll try it. Now my solution is to rest in my recliner and take a little more acetaminophen as long as I don't risk liver damage.
But I am getting behind in everything but the necessities which take much more time due to my slowness.
Is your focus on butter, ghee and olive oil an attempt to regain your lost weight? Has it worked?

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Hey notmoff I was wondering what try of recliner do you have, mine kills my neck and spine. Thanks for any help.

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@dream1649

Hey notmoff I was wondering what try of recliner do you have, mine kills my neck and spine. Thanks for any help.

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I'd like to know too!

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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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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.

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@gpowr23

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.

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Forgot to mention I'm 68.

REPLY
@gpowr23

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.

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I will correspond for sure but any back and forth, won't be for a while owing to some financial issues (many horrifically overdue) besides - oh, never mind. There's a lot! I doubt I can write back for a good while.

But meanwhile I can say that I could have written everything you did down to "limit my neck activities to avoid it."

If you want to read more from me right now just reread your own notes to them - everything same except fusion begun at T4.

If you don't hear from me for a good while, just nudge me in a PM ( really am overwhelmed).

I have questions for you too (Get readY!)
How long ago was your surgery, how long did it last, what was the name of your surgeon, where do you live, do you have family to help after such surgery or at all, how old you are you?

Might be more private for us both to write back in a PM.

I'm really excited to hear from you! SO much sounds the same.

BTW My operation was really a spinal reconstruction when I could get to it (though a basic dx was extreme kyphoscoliosis) - fused, too, of course.

A few other notes,
1) I was left with flatback sydrome (no lordosis) which caused me to tilt forward increasingly - only really comfortable on a shopping cart). And Mr TV surgeon left me with quite a number of new disabilities too.
2) I began with an extremely rotated rib cage and it's worse if anything.
3) Great deal of nerve damage owing to unpreventable delay
(Nobody to help! SIL promised then rescinded it which meant the nerve issues were permanent - as in, well for later...)

Before signing off (hopefully they'll come out ) I'll post by before and after Xrays.

All the best!

Amanda

1697312052537blob Spne Xrays H Sp Surg.jpeg

Looks like I can't manage now - later.

And, hey, guess what? It's only a few minutes after 2 AM!

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Diagnosed with cervical radiculopathy last April. The most painful thing I've every gone through. I have had two flairs since then. Nothing really helps the pain. How do you know when it's time for surgery

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@gussie

Diagnosed with cervical radiculopathy last April. The most painful thing I've every gone through. I have had two flairs since then. Nothing really helps the pain. How do you know when it's time for surgery

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Have you had an epidural yet? They have always helped me immensely in the past..

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