Surgery Dec. 3 with Shriners Greenville SC

[dancersmom]

Just a little about us so you know what we face. Hayley had a complete physical June of 07 no scoliosis noticed, started menaces in October 07 and was diagnosied March 08. Her curve had a very dramatic development. She is sch. for Dec. 3 surg. she has 51 degree thoracic curve, 35 cervical, and 26 lumbar. They said it was like when you twist a chain the ends curl as well and that is what her spine did. She is a competitive dancer and very gifted with acrobatics. The dr. said she would no longer be able to do the acro but could return to dance after 1 year. she is really bummed about this. Her younger sister will still compete and I teach the acrobatics classes so it makes it a little harder for her.

I keep second guessing myself as to making the right decision to proceed with surgery. What if we don't do it and her curve does not get worse or try bracing. She does not have pain except the occasional discomfort. I am also questioning the Dr. I have read good things about him but you just never know.

Thought I would try out the forum to gain support as well as any kind of insight.

Mel and Hay

[Nancy Joy]

Hi Mel! Glad you are looking for support. I did a search to see what I had missed on Hayley but found no other. How old is she? My daughter had the surgery when she was 13 (she is now 26). No pain but no progress with bracing, etc. I think it is 10 times as hard to make such a major decision for your child even when you know you don't really have a choice for a normal life without surgery. My Erin breezed right thru. You both (or all- it is pretty much a family affair) will go thru a lot of emotions to finally get to "peace" and "trust". We are here to offer any support you need. If you have any questions my girl could answer, let me know. She has never regretted it and is constantly complimented on her excellent posture! Keep your chin up and "use us!!!"

[dancersmom]

Thank you Nancy Joy. Hayley is 13 we have never had any bracing. When found she was already 51 degrees and honestly since appt. in June she looks to have curve more. Rt side of ribs protrudes and has in the last couple of weeks a couple of times had some breathing trouble when at dance. She knows when she has to take it easy though. We go for preop Nov. 14th we live 5.5 hours away from the hospital but are ready to see what continues to go on with her. She had a down day yesterday I try to talk with her to continue to prepare her for what is to come she is very sensitive. We had found a certificate from 2005 when we were scrapbooking some stuff and it was from her Girls on the Run 5k run which she completed Dec 3 of that year and this year she will be in surgery it tugged at our heart strings a bit. I am so glad to have found this site. I had ordered the scolio braclets and read stuff before I decided to post. I am glad to know that you are doing well I read that you just had the surg. It has been very helpful for Hayley to have the internet and see others stories and know that she is not alone. Well thanks for taking the time to reply and take care.

[Snoopy]

Melissa,

My daughter was 13 also when she had her surgery. That was almost 4 years ago, but I remember it like it was yesterday!

Everything you are experiencing is normal. If you weren't second guessing yourself, I'd be worried. Deciding to let a doctor do Jamie's surgery was one of the hardest things I've ever done. I finally found peace of mind knowing that I did my research and in my opinion, I found the best doctor for her.

I won't lie and say it was a piece of cake after that, because it wasn't. The days leading up to surgery can be very stressful. Waiting in the waiting room for the surgery to be over is VERY stressful. The recovery can be long. But do I regret my decision? No. Jamie and I have never regretted our decision.

Has anyone mentioned Spinekids.com for Hayley? It is a forum similar to this one, but it is mostly kids on the forum.

Good luck.

Mary Lou

[Carmell]

Welcome Melissa and Hayley,

Scoliosis is rarely an emergency situation. Please talk with the doc and see if they are scheduling surgery just because it's a surgeon talking (they love to do surgery - and excel at it) or if he's willing to allow her time to get used to the idea of surgery... finish a season of dance and acrobatics, etc. During this time she (and you) can find ways for her to participate without competing. You/she may even find something completely different that she will LOVE to do, and excel at. It does sound like her curves are significant, but hopefully she won't get worse and she can buy some time by staying very active and as healthy as possible. If her spine is at all flexible, there shouldn't be too many reasons to rush into surgery, yet. I know several teens who have 50+ degree curves (most have double curves at that degree) and do just fine. They are waiting for the right timing for them to have surgery. She doesn't have a long history of progression. Maybe if they allow her to go another 6-12 months without surgery, they will see that her spine is stable (hopefully this is not wishful thinking). The emotional side of surgery is REAL and needs to be taken very seriously. Good luck and let us know how things go.

[txmarinemom]

As Carmell said, there are cases where a curve stabilzes (mine did around 50°). I only had surgery in later life because the pain was increasing and untouchable.

I rather like the wait a while suggestion if at all possible ...

Best regards,
Pam

[dancersmom]

Thank you to all that replied. Her last appointment was in June so when we go back in 4 weeks it will be intresting to see how she is doing. She is very very flexable it just amazes me to watch her to aerials, backhand springs and other tricks knowing how her spine is curved. We as a family have alot of anxiety about this whole process. From what was mentioned with the two different doctors that we saw 1st and 2nd opinions they were both on the same page as well as their measurments of her spine were exact which from what i understand is rare. They said because of the spinal position and lung position not to wait longer that six months to do the surgery because of the potential breathing issues. I will certainly keep you guys informed after the Nov. 14th appointment to get your opinions on what was said. Carmell with all that you have been through I know that you certainly know a thing or two about the amazing, scarey medical world. I do believe that no matter what our decision is I will always question myself as to making the right decision. It would be great if the spine stabalized I do wonder how bracing would do for her. Thanks once again and everyone have a blessed day.