I had rods placed in my back when I was twelve. I am not sure what degree it actually was but they said I could have been the letter S on sesame St. I had a double curve and was two inches taller when they straightened me out. Now, I am 47. I have some pain in my neck and lower back (where the rods are not). I think the key is to ask lots of questions and find out about what type of rods they are using now, What hindrances she could have later in life. Also, I think I would have had less loss of range of motion if they had made me move sooner. I have some loss of movement as it does not bend where the rods are at but I am allowed to do anything I feel comfortable doing including riding horses. If you do go ahead with the surgery, Keep all the records that you can. One of my frustrations was that they only keep records for like 20 years. By the time I was old enough to have problems, and questions, many of the records had been destroyed and it was hard to get information. Hope this helps you some.

I'm not sure according to what you wrote if I should go ahead with the surgery or not? Please advise..
Sounds like you have lots of pain.. What type of surgery did you do?

I do have pain, but they also said it would have killed me before I was thirty. I don't know what degree it was, but it was severe. It was a double curve so I was literally compacting into myself. I think things have changed a lot since 1983 and methods might be a lot better now. I'm not in so much pain that I take narcotics though and exercise helps. I cannot advise you either way, I would not presume to make that suggestion. I am just saying be sure to get all the info and if you do it, make sure you keep all records for her future. Hugs

Hi Dawn
We saw the specialist today and he measured my 13 year old daughter to have a curve of 90%. He explained to us very clearly the pro's and con's of having or not having the operation. I fully understand your concerns as we grew up with the notion that unless under extreme circumstances, you do not operate on your back or feet. So I'm also in a bit of shock and trying to get my head around the facts and also around the grey areas. The only guarantee the dr could give us is that if she does not have the op, within 10-15 year she WILL have lung and heart problems and her curve will still increase to at least 110 degrees. So we are trying to align ourselves with what is best for her future. I tend to trust in medical advances and God's grace and think we will most probably proceed with the op in the near future.

Prayingmom... I am still coming to terms and being a mother we always tend to want to have the best for our child or children. I have decided to go ahead with the operation as I want my daughter to have a better quality of life. We are seeing the surgeon on Thursday and another X-ray will be done. Then disscusions will be made about surgery..
I personally will pray for your daughter..... You and your daughter will be in our prayers.

Hello, my 13 yr old daughter was just diagnosed with a 42 degree curve. She starts wearing a hard brace next week, but may need surgery if the curve worsens. So, I've started researching all possible options. The latest surgery that is less instrusive than the screws or titanium rods is called Vertebrae Body Tethering (VBT). I heard UCSF, Shriners hospital and Rady Children's Hospital in San Diego CA do this surgery. Another parent mentioned her daughter underwent that surgery yesterday. So, will update as I hear more. We are going to try Schroth intensive therapy at the Scoliosis Rehab Center in Wisconsin. Great reputation... and we have already scheduled an appointment. Please do check it out.

Hi everyone! My first post here.

I hate to say yes have surgery or don't have surgery. You need to take all the info given and hope you've made a good informed discussion.

With the said.....
I am almost 41 yrs old with a 26 1/2 yr old Harrington rod. Placed when I was 14. My parents were told I would be paralyzed by 30 if not done. It was a very scary time and it was a hard surgery to go through.
BUT.......I am here standing tall. Sure I have back pain here and there but strength training, weight control, and massages help.
I threw myself a kickass party when I was 30 cause I knew i was blessed to be standing straight and walking!
I have no limitations for the most part. My rod covers 12 levels thoracic region, better of the location to have it.
I was told last year if I keep up with my strengthing of my abs and back and watch my weight, I can go another 25 years!!!
My surgery also gave me the desire to help others and I have been a nurse for the last 18 years.
Please know there can be a happy ending because I believe I'm living it.

Hi I am a mom of two daughters. One of them has a small 7% curve with no repair. However I have scoliosis never even was diagnosed. Until a few years ago. The pain in my rib cage is unbarrable at times. Idk my exact curve %. But it hurts. I cannot imagine those with such a large curve? Probably a lot of complications throughout the years.
You are the parent. And ultimately the one making decisions. Ask questions and get a second opinion.
Stay strong! My heart goes out to you.

I had the surgery when I was ten years old, and my parents had the same issue with the surgery. My doctor told me it was the only option, or I would only have 5 years of life left. 8 years later, I question if the surgery was worth it. I have constant back pain, inhibiting some daily activities. I had to stop participating in sports due to the pain. The doctor says I just have to live with it. Sometimes I wish I never had the surgery because of the pain, but it kept me alive. I think that is what it comes down to, how the procedure or not will affect your daughter's life. Good luck

Just an update with my daughter's status. Within three and a half weeks her curve grew to 60%. At that point we spoke to the surgeon and we are on a waiting list for the surgery. We were told that we are 6th place and will have the surgery in the next 6 months from October 2016.
As for Jansi, I live in Edmonton Alberta, Canada.
I truly want to thank each and everyone of you who has taken the time to express your concerns and ordeals you have concurred.
I will be praying

We will also pray everything will turn out well. Keep us posted! Let us know how it turns out. Let her knowing so many in the cyber world are pulling for her!
FYI. Here In so cal. The scoliosis check for 7 Th graders has been dissolved. So girls are not getting checked down here. Unless we diligent parents are watching and making sure our girls are growing straight. I think there is not enough awareness about the life changing issues that can arise from untreated scoliosis.

You are absolutely right changing about the lack of awareness of Scoliolis.
I myself didn't know about scoliosis until my daughter was diagnosed.
I am meeting with other parent and are discussing the lack of awareness at schools.
Our mission is to introduce scoliosis to kindergarten and other grades so that parents are educated and teachers so that they will monitor their kids so that it's not too late and have to get to the point of having surgery.

When I was 13 I had my surgery. All is well. Minds was a double curve so my rods extend shoulder blades down to tail bone. The first day was hard all I remeber was pain they gave me a button and I pushed it until I knocked out. After the first 2 days I felt like myself again. After the first year I could do the things I enjoyed. I have no movement around my neck. I'm now receiving treatment from my chiropractor. As a parent myself, I, myself one day may have to face your fears you have now. If I had to choose I would try to find an alternative. I think the sooner you know you can try to prevent it as much as you can. If it's as bad as an S curve I would just do the surgery. Yes it will hurt and you will always have pain and aches as you age. But it just keeps progressing if left untreated. I hope all is well with you and your daughter. As a parent all we can hope is that we made the right decisions, always.

hi there i just joined and saw this. I am 17 now and i got a titanium rod fused to my spine when i was 12 to stop it from getting any worse. I do have pain sometimes but it was the best decision my mum and dad made because now I can do anything anyone else can I even proved that when i did a TV show with bear grylls. I hope everything is going good with you and your daughter.