View Full Version : what do we do?

scoli dad
10-12-2006, 04:33 PM
Hello. My daughter zoie was diagnosed at age 6. We braced the curve up to age 13. Today was the first time in a while she had been x-rayed out of the brace. Her upper curve is 50. She has quite a rotation as the left shoulder is high above the right. My question is if anyone knows now that they say she is pretty much done growing, what are the risks of NOT having the surgery?

scoli dad
10-12-2006, 04:50 PM
We have been seeing Dr. Krybich at Shriner's in Portland Oregon for the past 4 years, anyone with any comments there?

10-13-2006, 02:36 PM
i think this is a biased opinion but probably one that a lot of people hold, and that's to say: i think the benefits of surgery on a progressing/unstable curve far outweigh the risks in the majority of cases.

the implications of untreated scoliosis can be severe, as i'm sure you know. it tends to eventually lead to a decrease in lung function which can have a restriction on quality of life.

recovery from a fusion surgery when you're under 20 or so is also relatively easy and tends to mean you can move on with your life. yes you tend to lose flexibility, but as i say, i think the benefits outweigh the costs by a significant margin.

10-13-2006, 05:56 PM
My daughter had her surgery at age 14 and was only in the hospital 5 days. 8 weeks later she started back at school (her surgery was at the start of summer vacation). 6 months after surgery, she danced in "The Nutcracker" - a small part but by spring show, she danced in 4 dances.

10-14-2006, 04:50 PM
I am a 49 yr old female who has lived with scoliosis since being diagonsed at at 14. I also have a half sister (same father) who has scoliois and had Harrington rod surgery at age 14 and again at age 16. She is 40+ today and doing wonderful without any pain. I did not have surgery and was braced. Today, my curve is progressing and I am considering surgery although I have very little pain. My point in providing the contrasting history is to suggest having surgery while your daughter is young. I'm new to this forum but have spent much time researching and it seems the younger ones heal much quicker with far less complications. I wish I had surgery as an adolescent vs having to make an informed decision at this stage of life. Being a Mom, it would be a hard decision for my child, but I believe she will thank you down the road.

11-04-2006, 08:12 PM
my daughter, age 15 had surgery 2 wks ago. she was T55* & L45*, lowered lung function, & rib hump. haven't had post op appoint. yet so I don't know exact correction, but she looks amazing. she was taken out of brace when she reached T4o*. they said @ that point it wouldn't do much. we were told once if she reached 45* that she would continue to progress 1* per yr. for the rest of her life. her hump was corrected w/ rotation{no ribs taken}, & fused from T4 to T12{lumbar should staighten on its own now that weight is off}. her recovery has been amazing, way better than we expected. off pain meds, sleeping through, tutor has been coming, totally independent, & looks herself. DON"T FORGET..... progression is ussually most agressive the year before and the year after they get their period. this was the case w/ my daughter. she went from T38*&L33* to 55*&45*. good luck w/ your research & decision making, its not easy. longislandmom

11-11-2006, 07:54 PM
Dear Scoli Dad,

My daughter had surgery a year and a half ago. She had a pretty nasty "S" curve and was getting to the point where she was short of breath, had chronic muscle spasms and a constant back ache, and had a deformity that was very noticible and becoming a social issue. She had pretty much stopped growing and the doctor was concerned that if we waited much longer, he would not be able to get a good correction because her curve was continuing to progress and becoming more rigid.

I will not lie. This is major, painful, scary, and devastating surgery. NOTHING to be taken lightly, and there is lots of new technology coming down the pike that might be kinder and gentler. With that said, we have no regrets and our daughter is doing SO well. She looks perfect to the untrained eye. She has no pain and has returned to all normal activities at the 18 month mark. She started high school this year, and the difference in her attitude is really amazing. She is confident never worries about teasing about her back or her appearance. She looks amazing, perfectly normal, with the very typical pimples and ninth grade stuff, but no hump and she can breath and participate in sports, and just be a normal, flawed and struggling teen who's parents are worried about her getting into college instead of her back and scoliosis issues.

If you are with the right surgeon, there is every reason to believe that your child will be fine, and the people at Shriners are top notch. Our daughter is a completely different person, confident, self assured, and vibrant. My husband and I sleep at night, instead of worrying like we did before. I don't discount the very real risks with every surgery, and I know that no matter what, this is a difficult decision. We know exactly what you are feeling. We hope we can give you a little perspective from a family on the "other side". Good luck with your decision and feel free to PM if you have any questions or need help with anything. We've BEEN THERE DONE THAT!!!

11-12-2006, 05:24 PM
I put my surgery off from age 18-33. Some of my down sides were:
I couldn't stand or sit for more than an hour at a time or do high impact exercises or sports. No golf, horseback riding, step aerobics
I hated the way I looked in clothes and never mind how I looked in a bathing suit (low self esteem) Nothing ever fit right
No roller coasters
Inside organs possibly being affected
Shrinking in height