Fusion for 12 yr old in NC/Bending Brace?

[timalosa]

My daugter is 12 1/2, hasn't started menstruating, and has a 40 degree and 33 degree curve (diagnosed less than 2 months ago--ideopathic). Doctor believes she is Risser 1. The 40 is thoracic and the 33 is lower. Doc said she needs to have T3-L3 fused and I'm so worried about her losing flexibility in the lumbar region. She is a cheerleader and is very active. I'm also worried about crank shafting since he is talking posterior fusion so I'm worried about the anterior spine continuing to grow since she has what I think is a lot of growth left. Is it too soon for surgery? It seems kind of borderline so I'd like to know what others have done with their growing children?

Even though we have not tried a brace, he never suggested one until I asked about one month after diagnosis and he suggested the Nightime Bending Brace (I think that's what it is called). From what I've read it isn't effective so I'm wondering if it really will make a difference by buying us time to let my daughter grow. Thanks in advance for your feedback. This forum has been so helpful.

I have an appointment for a second opinion on 9/20.

[Mary Lou]

timalosa,

Welcome! First, let me say I'm glad to hear that you are getting at least a second opinion. If surgery is in your daughter's future, you want to have the best surgeon possible.


Did the doctor say why he is suggesting surgery now? Most doctors do suggest surgery once the curve has reached between 40-50 degrees, but most won't do surgery until the child is almost done growing. At a Risser 1, your daughter has a lot of growing to do. From what I've always read girls have up to two years of growth after they've started menstruating.

Mary Lou

[Carmell]

Welcome to the board!

I agree with Mary Lou - getting at least one more opinion for your daughter is important. The amount of fusion the doc is suggesting is a very large portion of her spine. The degree of curve doesn't suggest an immediate decision needs to be made. The fact is most scoliosis cases are not emergency situations - you have time to research and find the best possible solution for your given situation. Things that would increase the argument for surgery sooner than later include severe rotation, unbalanced head and pelvis, other medical conditions that are known to complicate scoliosis, etc.

I know of an active scoliosis support group in the Charlotte area. Let me know if you'd like their email contact information and I'd be happy to send it to you. They may know of a support group closer to your area. This is one of the groups who have a strong teenage attendance.

Good luck and if you'd like recommendations for PEDIATRIC orthos for opinions, I'm sure we could help.

My best!

[timalosa]

Thank you so much for your feedback and support.

The doctor is recommending surgery now because he says if we wait, the amount of correction he can do will decrease. I asked him about the possibility of crank shafting from growth after posterior fusion and he said he didn't believe that would happen based on her age (said if she was under 10, he'd be concerned).

Does anyone have experience with the nighttime bending brace?

I would appreciate contact information for a support group in NC.

Thanks again.

[Vanessa515]

Hey.... I live in North Carolina also. I had surgery about 3 months ago, I was wondering where you were planning on having the surgery at and the doctor. I had mine done in Chapel Hill with Dr. Henderson and he is wonderful!

[Mary Lou]

Here's a little bit of information about a support group in Raleigh:

Contact person: Megan
E-mail address: sportzjok146@aol.com

[pat]

Timolosa

Hello Timolosa! My daughter's #'s were almost identical to your daughter a year ago (Riser, age, curves, and hadn't started her period yet either). She's now almost one year post-op, same fusion level as your daughter might have. She's doing fantastic now, she's now a Riser 5, started her period two months after surgery, and we also talked to her doctor about crankshaft. She was very active before surgery (swimteam, basketball, mt. biking), and she's doing it all again now.

She also wore the nighttime bending brace; did it slow it down/work? I don't know, but she didn't mind too much, only at night. It would have been so much harder getting her into a day brace. pat

[ScolioGirl]

Hey there. My situation is pretty similar to your daughter's - I'm twelve (thirteen in a month) and a couple months ago we found my scoliosis was 43T and 31L, so I got a nighttime brace. My Risser is either a one or a two since I haven't started my periods. I don't think the brace has done much for my curves, though, as the thoracic went up 11* and my lumber 5* in four months, but others find nighttime bracing effective. I'm having surgery in a couple months, and my surgeon hasn't said anything about crankshafting yet...I'm having posterior spinal fusion, T3-L3...anyway, I don't really have a point here, just wanted to say our situations sounds similar Also, most people can go back to doing every sport after surgery if they have a couple lumbar vertebrae unfused, with the exception of some gymnastics stuff. I know a girl from another website, Spinekids.com, that still does cheerleading after her surgery. Good luck

[timalosa]

Thanks so much for your replies and I'm sorry for the delay in responding. We were going to Dr. Mankin and have gotten a second opinion from Dr. Hey who also recommends surgery. One doc measured and suggested fusion from T3-L3 (thoracic 40, lumbar 35) and the other from T5-L1 (thoracic 45, lumbar 40--said lower curve is compensatory and should take care of itself). I have an appointment for my daughter on Dec. 1 for a third opinion, but may cancel based on what I'm seeing in the posts on this site...the docs must be giving me the correct info, but I'm just in denial because I don't want my baby to go under the knife. Her sugery is set for Jan. 2, 2006 so she'll have three weeks to recover before it's time for her to go back to school. She's worried about being able to do ab crunches and back handsprings more than anything.

[Mary Lou]

I'm glad to hear that you've gotten several opinions. From what you've said, it looks like both doctors are on the same page. As for being able to do ab crunches, I wouldn't count on it. My daughter is fused from T3-L2 and when her physical therapist told her to do crunches, we both just laughed at him! Crunches are one of the few things she can't do. The therapist knew that, but he said she could still tighten her abs as though she were doing crunches and that would help strengthen her ab muscles.

Hang in there. We are all here to help you get through this.

Mary Lou

[Cheryl M]

Hi,

My daughter started very similar to your daughter. We have now seen 4 doctors. We were initially told to wear the brace and just see if it would work. Her curves have progressed from 42 thoracic to 70 and 37 lumbar to 55 since February. Hindsight says we should have done surgery last spring but at least we know we've tried everything to prevent surgery and now we have no other option. Statistics told us she would have to have surgery and we knew in our heart that she most likely would. We live in the Charlotte area and have seen Dr. Wattenbarger at Ortho Carolina and also the Dr.'s at Shriners in Greenville.

Best of luck to you as you make your decision.

Cheryl

[flowerpower]

Hi Cheryl,

How is your search for a doctor coming along?? Have you spoken with Dr. Gaines anymore or given more thought to the bone-on-bone surgery?

Renee

[Cheryl M]

Renee,

I haven't been able to post much but we have finally made a decision. Yay! She is scheduled for surgery with Dr. Wattenbarger on Monday, November 28th in Charlotte. It's amazing how much peace I felt once we made that final decision.

Dr. Gaines said he could do the surgery but she would have to have two seperate surgeries. She didn't want that and we weren't sure we could handle it either. We also considered Shriners but they haven't been able to give us a date and that's been since August 12th and we were afraid to wait any longer. After weighing all our options we decided, for a number of reasons, on Dr. Wattenbarger.

This is so scary but she is incredibly healthy and I know she will do just great. Thanks for asking and I hope all goes well with you too.

Cheryl

[flowerpower]

Hi Cheryl,

I totally understand your reasoning & I'm glad you found someone you feel comfortable & confident with to do the surgery. That date is just around the corner & I'm sure the date will come all too fast. I feel butterflys for you! At least there is still a bit of time to make preparations, etc. Will the surgery coincide with a school holiday or was that just the first available date? How is your daughter handling all of this? Best wishes to you guys I know you may not be able to post much from here on out, so I hope all goes well & hope to hear from you when you find time.

Renee

[Cheryl M]

My daughter is handling this beautifully. At least she appears to be. She will miss about 3 weeks of school and then have two weeks before returning after x-mas break. She is at an IB (international baculaureate) middle school which is pretty strenuous. Hopefully with a 504 plan we can get modified assignments and she won't be responsible for all the extras they demand. I am most worried about Algebra 1 but her teacher has assured me that she will even come to our house to make sure she doesn't fall behind. Her dad and I know that she will be fine. She is very shy but is so, so very strong. She amazes us. Very similar to all the other strong teenagers we've read about on this forum. Thanks to all for your support.

Cheryl