Deseret News | Learning to live with scoliosis

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Learning to live with scoliosis

oldman | 4:12 a.m. Sept. 25, 2009

wonderful examples

It can be worse | 8:00 a.m. Sept. 25, 2009

Sometimes they have to insert a rod in your back to keep it straight. After a life of pain that rod may need to be taken out in later life and replaced. The brace is a good option if you can limit your therapy to wearing one.

Laura | 8:34 a.m. Sept. 25, 2009

Thanks for the story. I was diagnosed with mild scoliosis at age 16, and while it has not hindered my life's activities at all, it was pretty traumatic at the time. I didn't know anyone else with scoliosis and nothing about the disease. I applaud these girls for being so open about their braces and Shriners for helping these girls find cute, comfortable things to wear. The disease is very manageable and I think the best solutions are information and support.

Comments continue below

Tina | 8:46 a.m. Sept. 25, 2009

I had surgery to put rods and screws in my back 2 1/2 years ago. I got 3 infections and had to be in a nursing facility for 45 days, get 6 antibiotic infusions a day. Now the infection has come back and I had to have the hardware removed because it had attached to the hardware. I am now in a facility for another 45 days with antibiotics. Now they tell me that the antibiotics have turned against me. My white blood cells count is too low. I am absolutely miserable and it seems that there is no end to this battle.
DO NOT GET RODS AND SCREWS IN YOUR BACK TO CORRECT SCOLIOSIS. THE PAIN IS WORSE THAN IT EVER WAS. IF A DOCTOR SUGGESTS THIS FOR SCOLIOSIS RUN AWAY.

BobP | 10:03 a.m. Sept. 25, 2009

My middle son had an 18 inch rod screwed to his spine almost 20 years ago. He has done hard physical work and is now in the Canadian Army scheduled in a combat role for next spring.

My suggestion to Tina is get a good lawyer and get some compensation for the bad times.

JC | 10:04 a.m. Sept. 25, 2009

Lucky for these girls that the school screening found the scoliosis when it did. I did not discover my scoliosis until much later in high school, and by that time it was too late for a brace to do anything to help. My doctor told me about having a rod fused to my spine, but I refused to have it done when he said it would likely not take the pain away, just prevent the spine from curving.

I deal with the pain on a daily basis, and exercise to keep my stomach muscles strong to help deal with the pain.

I feel bad for people like Tina above. Stories like hers is the reason I have not let anyone touch my spine surgically. I just wish I had received a school screening early enough that wearing a brace would have helped.

Nesha | 10:35 a.m. Sept. 25, 2009

This was a timely article for our family. Our 10 year old daughter was diagnosed three days ago with "S" shaped scoliosis. It was discovered during a chest x-ray for possible pneumonia. More x-rays were done and scoliosis was determined. That helped explain the mysterious back pain. We will be taking our daughter to PCMC to an Orthopedic Specialist to determine what to do now. It's good to know that there are other young gals out there with this condition that are taking it in stride and maintaining a positive attitude.

a mom | 10:39 a.m. Sept. 25, 2009

My daughter was hit by a soccer ball so hard that I took her to a doctor and he was wise enough to get an x-ray that showed that she had scoliosis. Unfortunately, after that I took her to a specialist that told us that because her cartilage was showing that is was "sealed," that she was fully grown so all she could do was exercises. He didn't think a brace would help. She grew another 4" in height and now her back is so much worse. I would suggest that anyone who notices back pain or tiredness or maybe just that their clothes don't seem to fit right that they be examined. And if a brace will help, please use it to prevent further pain and problems in the future. Good luck to you, Tina. I hope you will get well and not have any more problems.

Brace | 10:45 a.m. Sept. 25, 2009

I was diagnosed with Scoliosis when I was in the 4th grade. My parents opted for me to wear a brace, however the brace I had went all the way up to my neck and even held my chin up. I did get the torso brace right before I went to HS. I was supposed to wear it 23 hours a day, only taking it off to shower. My doctor did say I could take it off if I wanted to play sports. I played EVERY sport. Kind of funny how I am good at every sport, just not great at any.

I hated my parents for forcing me to wear the brace, but now I see their wisdom. It did make for tough times as a teen and late in HS, I slowly stopped wearing the brace.

I am 40 now and live with pain. I have had to stop skiing and golf, maybe once a year now. Have sort of got used to the pain and the occasional injury and will likely have to have surgery at some point, but I am sure it would be much worse had I not worn the brace.

Brace Cont. | 10:49 a.m. Sept. 25, 2009

Sorry... in reading my post it looked like I was miserable. That is not the case. I have a great live and I am very happy. I was a very successful athlete in HS and still lead a fairly active life. I enjoy watching my kids activities more than my own anyway. At my 20 year HS reunion I still had people ask me if I still wear the brace.

BeckyP | 11:27 a.m. Sept. 25, 2009

It is great that these girls found this problem early. I would however suggest that these girls not only follow what their MD's have suggested, but also look into a qualified Chiropractor for management of this condition. I know from first hand knowledge the benefits of good chiropractic management on this condition. There are many around, but I would suggest Vanguard Health Solutions of Draper.

Dad | 11:29 a.m. Sept. 25, 2009

My daughter was diagnosed with this last year. We were nervous and unsure what to expect. We did as much research as we could without knowing what we were looking for, really. The Web can sometimes make things seem much worse than they really are. We were referred to Shriners and they have been outstanding!!! My daughter's curve is mild and at our last appointment it had remained essentially unchanged so we were thankful for the power of prayer. It's encouraging to see these young women accomplishing so much and I hope this gets more information out. Good luck to them!

Mc | 12:19 p.m. Sept. 25, 2009

@BeckyP | 11:27 a.m.

I agree with you: check out what chiropractic can do. My chiropractor has fixed the curve in my neck and low back. I googled scoliosis and chiropractic and found some interesting articles about the success some have had in correcting scoliosis with chiropractic care. One family had a miserable time with their daughter's surgery for scoliosis, so when their son was diagnosed with it too they decided to give chiropractic a try. His condition was corrected and they wish they had known about it for their daughter. It's certainly worth looking into!

Thanks Becky P and Mc | 2:08 p.m. Sept. 25, 2009

for your advertisements for Chiropractors. They can't correct scoliosis. Go to the mall and hand out some pens or something.

Photo model? | 2:17 p.m. Sept. 25, 2009

Chad Braithwaite is the one who looks like he has scoliosis!

Brittany | 2:18 p.m. Sept. 25, 2009

Although I was glad to see something written about Scoliosis (I was diagnosed with it 15-years ago), this article was disappointing in so many ways. There wasn't much substance to it. The article didn't provide any pointers for living with Scoliosis. It only touched on teenage girls who only care about finding clothing to cover their braces. Of course all teenagers care about is image, but when they get older they'll find there is much more to the disease than that. This article was missing advice/comments from a healthcare professional's perspective as to how to deal with Scoliosis. The article also could have used the perspective of someone who has lived with Scoliosis for years, rather than just teenagers who have only had to deal with it for a short time. I remember being terrified when I was diagnosed at age 13. I had no idea what it meant for me. Since my curve was so bad, it was too late to get me in a brace. I had to have surgery to put rods in my back instead. The article gave no mention of people in this situation.

Britt | 2:38 p.m. Sept. 25, 2009

For everyone who says they decided to forego getting rods put in their back, can I just say how dangerous that is? If I hadn't had rods placed in my back 15 years ago, I would be dead by now. My spine would have continued to curve and eventually collided with my heart and given me a heart attack. Yes, surgery is scary, but sometimes not taking action is even scarier. My life would be far worse had I not had surgery. Only a really bad doctor will make your situation worse. Life will be more painful for a few months while you recover, but it will be worth it in the long run.

scoliosis and chiropractic | 2:45 p.m. Sept. 25, 2009

I just googled scoliosis and chiropractic and the first thing I found was from the National Scoliosis Foundation and stated "Virtually no formal research exists documenting chiropractic's effectiveness in managing scoliosis." So I would question any chiropractor who says they can correct scoliosis

Rocket | 3:00 p.m. Sept. 25, 2009

I didn't know I had Scoliosis until I was 50 years old. Didn’t seem to bother me.

Madison's mom | 3:51 p.m. Sept. 25, 2009

Thank you for the information about scoliosis. My daughter was just told she has it and needs to wear a brace 16-18 per day. It was nice to see other girls need to wear it too. My daughter just turned 12 years old. So far that is the only treatment that she needs. Her curviture is at 28 degrees. The doctor said we caught at just the right time.

K's Mom | 8:11 p.m. Sept. 25, 2009

I have a daughter that is 13. We found out in May 2008 that she had mild curvature in her spine. We were told not to do anything. 10 months later, it had doubled. She was very close to the mark for surgery. She was prescribed a brace that she was to wear for 18 hours a day. The next few weeks were horrible (physcially and emotionally). I still could not understand how life would be better with a brace. I checked into alternative therapies and I am so glad that I did. Not saying that the road would be easy, but I would say it is much less that what the brace would have done for us. After finding a GREAT chiropractor in Fort Collins, CO (yes, 8 hours away) we spent 3 weeks of our summer there for intensive therapy sessions. He found that there were more problems and explained that usually they find things that are wrong with other parts of the body than just the spine. She had a third curve in her neck, her hips were rotated. Even with the brace (story continued in next post)

kake | 8:35 p.m. Sept. 25, 2009

im a 13 year old girl with scoliosis i went to colorado this summer to try to decrease the curves in my spine and... IT WORKED~!!!!!!!!!! at the begining of the summer i was @ 35 degrees and with in 3 weeks of exercises and adjust ments from a spinal doctor my curves have gone done to ~15 degrees i am so glad that i did this. it is so much better than wearing a brace for 18hrs a day all i have to do is sit in a vibrational traction scholiosis chair fo 30 mins 2xs a day, wear weights for 15 mins 2xs a day and do certain exercises for ~15 mins 2xs a day. i got a brace for 3 weeks and then found this. i had to miss out on alot of things because i HAD to wear the brace for the amount of time the doctor told me. but once my mom found this spinal theripy place we took off the brace and i havent woren it since if you wear as brace or are going to or are going to have surgery i really suggest you find out more about where i do therepy.
kake

Richard | 6:13 p.m. Sept. 26, 2009

Our 12 yr old daughter was just diagnosed at the end of last school yr as she was recovering from chicken pox. I was very painfull for her to wear the brace and still have the chicken pox. She as had to endure some uncomfortable situations at school regarding her peers... But as a strong young women she has decided to wear her brace on the outside of her clothing... I am so proud of hear. May the news should interview kids around the county on how they struggle and overcome wearing the brace. She wears it 20 hrs a day.

Harrrington Rod Patient | 9:44 p.m. Sept. 26, 2009

I had a Harrington rod placed to correct scoliosis twenty years ago. I wore a body cast for 6 months to support my back, so I know first hand how hard it is to be a teenager and look different. Hats off to Shriners for trying to ease the social pain for these girls, because regardless of what adults say it is hard to be different at such a tender age.

ok | 9:00 a.m. Sept. 27, 2009

Boys have scoliosis too. Only they're not concerned about what to wear. Just the pain and problems of wearing the brace for 18 hours a day. Try being a 3rd grade boy and not being able to do what the PE teacher has everyone else doing. Somehow it always hurts to be different.

another mom | 9:33 a.m. Oct. 5, 2009

For those between the ages of 9-13 diagnosed with adolescent idiopathic scoliosis, ask your doctor about the new genetics test for risk of curve progression called ScoliScore.

stephanie | 9:07 a.m. Oct. 19, 2009

im 13 years old and i have mild scoliosis and its getting worse im am noticing it more and more im getting reakky scared and my fear is sugrey and i really dont want it the back brace is uncomftable for the most part but then sometimes i feel that its my fault.im embarrsed to tell my dad and my famiy how i really feel.i act like i dont care but i really do i know that its getting worse but im just so confused.and i wear a jacket over my clothes for school everyday because i dont want anyone else to know but im going to try to correct my back and if you have any comments or concerns please write underneth mine and let me know what you think i should do if you know any exersizes i should try.just PLEASE!!!!!! let me know.....PLEASE again i say thank you for your time it means alot to me thanks bye

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