Adult Scoliosis: What is surgery like? Outcomes? Recovery?

Posted by kjones612 @kjones612, Apr 17, 2024

I am 59 years old and just met with a neurosurgeon at Mayo who is recommending scoliosis surgery from T10 to S1. I would love to hear from anyone who has either had scoliosis surgery or decided to not. I have end stage degenerative disc disease complicating things. Surgery would also address structural issiwa feom that
Outcomes? How and why you made decision. Recovery? Anything you might be willing to share. Thank you.

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Profile picture for gently @gently

Are those soft bones osteoporotic? Luckily there are some good medications now (Tymlos and Forteo) that build strong bone. Surgery for scoliosis involves rods and screws. If your sister's bones are too soft they will be unable to hold the hardware. Both of the mentioned osteoporosis drugs help integrate the hardware in addition to making the bone stronger. I'd get an endocrinologist involved before getting second opinions from orthopedists.
There are newer rods that can move which are better than the older hardware.
Painful death conversations are manipulative, still surgery might be a good choice.
There is something called Clear Scoliosis that you might want to check into. It is a system of bracing and exercise.
Best luck

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I think she does prolia. When she had the lower back surgery the doc had to cement in the screws cause they wouldn’t hold due to softness

She’s never seen an endocrinologist 🙃- i think it’s a primary who prescribes the prolia. Oh well. Guess she should be doing her own research. However, I ‘ll check the clear Scoliosis. Thank you.

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Profile picture for willow5 @willow5

My 73 year old sister has scoliosis. A back doc told her if the didn’t fix it she would have a very painful death 😩 what a pal he is.

Anyhow, has anyone had surgery for scoliosis? Exercises that help? It really progressed over the last six years. She looks like her upper body is put on crooked.

She did just have lower back surgery which improved her disk situation tremendously. Oh, and her bones are soft. Any thoughts/help?

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@willow5 There are several discussions about Scoliosis where you can meet other members. The Adult Scoliosis discussion has the most recent posts at this time.

Spine Health - “Adult Scoliosis”
https://connect.mayoclinic.org/discussion/adult-scoliosis/
Spine Health - “Severe Scoliosis”
https://connect.mayoclinic.org/discussion/severe-scoliosis-1/
Osteoporosis & Bone Health - “Bone Health and Scoliosis”
https://connect.mayoclinic.org/discussion/bone-health-and-scoliosis/
Spine Health - “Scoliosis”
https://connect.mayoclinic.org/discussion/scoliosis-3/

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Profile picture for willow5 @willow5

My 73 year old sister has scoliosis. A back doc told her if the didn’t fix it she would have a very painful death 😩 what a pal he is.

Anyhow, has anyone had surgery for scoliosis? Exercises that help? It really progressed over the last six years. She looks like her upper body is put on crooked.

She did just have lower back surgery which improved her disk situation tremendously. Oh, and her bones are soft. Any thoughts/help?

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@willow5, I'd like to add my welcome. You've received some helpful replies from others. As per @jenniferhunter's suggestion, I moved your question to this related discussion where you can read previous posts and connect with additional members:
- Adult Scoliosis: What is surgery like? Outcomes? Recovery? https://connect.mayoclinic.org/discussion/adult-scoliosis/

I agree with @emo who mentioned getting a second opinion. Has you sister considered getting a second opinion?

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Profile picture for Colleen Young, Connect Director @colleenyoung

@willow5, I'd like to add my welcome. You've received some helpful replies from others. As per @jenniferhunter's suggestion, I moved your question to this related discussion where you can read previous posts and connect with additional members:
- Adult Scoliosis: What is surgery like? Outcomes? Recovery? https://connect.mayoclinic.org/discussion/adult-scoliosis/

I agree with @emo who mentioned getting a second opinion. Has you sister considered getting a second opinion?

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The Mayo Clinic was my second opinion. The first neurosurgeon I saw, suggested the Mayo as he commented that I needed a specialized Spine Deformity Center for scoliosis correction.

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I've been told that Dr. Allan Friedman, Neurosurgeon, Duke University Medical Center, Durham, NC (919) 681-6421, is one of the Best! Prayers & Blessings....

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Profile picture for willow5 @willow5

I think she does prolia. When she had the lower back surgery the doc had to cement in the screws cause they wouldn’t hold due to softness

She’s never seen an endocrinologist 🙃- i think it’s a primary who prescribes the prolia. Oh well. Guess she should be doing her own research. However, I ‘ll check the clear Scoliosis. Thank you.

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willow5
It's wonderful that you are helping your sister. Her doctor's statement makes me worry that she needs protection. Everyone says odd things at least once in a lifetime. If the surgeon is highly skilled, uses the best hardware and technique, and has a good success rate odd comments pale in importance.
It is the life that's hard with scoliosis. Death will be from something else.
This surgery could dramatically change her life for the better.

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I should have been clear. This doctor told my niece this about the painful death after my niece showed him a picture of her MRI. Regardless, it’s a crummy thing to say. After sending her a few articles, I’m done 😊. She’s not keen on seeking out a PT who works with scoliosis patients, hasn’t even started PT since January fusion - so I think I’ve led the horse to water and the horse is not thirsty.

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Profile picture for willow5 @willow5

Good luck~. Let us know. I take it the 18% curve is causing you problems? I know my sister’s curve is much higher at 18%. I hope you get to continue all your activities, too! I’m in the same boat with my ankle and not being able to find someone who tells me why it hurts and I can no longer run beyond 1/4 mile. I will preservere!

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Thank you for your response. I am wondering if the curvature is pressing on a nerve, causing the jerkiness in my leg(s) at night, causing restless leg syndrome, plus GI problems. I have the appointment at the end of June, curious.

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Profile picture for willow5 @willow5

I should have been clear. This doctor told my niece this about the painful death after my niece showed him a picture of her MRI. Regardless, it’s a crummy thing to say. After sending her a few articles, I’m done 😊. She’s not keen on seeking out a PT who works with scoliosis patients, hasn’t even started PT since January fusion - so I think I’ve led the horse to water and the horse is not thirsty.

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Sometimes, that's the way it is.. >_< . It's good of you to try to help and to let them know you're there for them to support if/when they're ready to move forward.

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I am glad I found this group. I am a 56 year old that wore a Boston brace for two years as a teenager. At that time my curvature was 34. I started chiropractic care four years ago to help manage pain. At that point it was a 40 degree curve. In four years it has progressed to a 52 degree curve. I can not stand for long periods of time, need to sit in a chair with a back and really watch what I do to not put myself in a situation that could cause pain.
I have had two opinions from two ortho surgeons. One has a more proactive approach and has recommended surgery due to its progression. The other opinion was more reactive and to wait until I "bottom out" with pain and quality of life. I am torn. I will probably get another opinion as well. The pro to doing it now is I am younger and in good health, assuming I bottom out at an older age and the recovery would be easier now. But the con to doing it now is I know this is a serious surgery and don't want to take it lightly. The thought of counting on isometric exercise to keep it from worsening and the thought of continued degradation is scary as well.
I feel like I am leaning toward having the surgery but want to be weighing all the pros and cons for doing it now or waiting.
Is there anyone out there that has had the surgery that wishes they didn't have the surgery or wishes they had done it at a younger age? Seems like the first month or so recovery is the worst. Looking for the good, the bad and the ugly feed back on both sides. I have seen a lot here but if anyone has anything else to add I am open to hearing it.

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