Need Advice on Surgery

[mjpj]

Hi,
My daughter was diagnosed with scoliosis when she was 7. She is currently 13. She has used both a Spincor brace and more recently a Rigo Cheneau brace faithfully since that time to the present. At her last appointment with her orthopedic Dr. her curves were still not looking good. She has progressed over the years to 52 thoracic and in the 40s for her lumbar curve. Her thoracic curve has always been the curve of major concern, but is very high up so it is difficult to brace. The lumbar curve only developed about 1.5 years ago, most likely in response to the worsening of the thoracic curve. My guess is that she still has quite a bit of growth left and has not started her period.

Anyway, her doctor recommended surgery. While he said it did not have to be done immediately he feels like her outcome might be more pleasing if we did it sooner than later. His reasoning was that he felt he could probably fuse from about T3-T9 and that the bottom would straighten out on its own. His concern with waiting too long is that he might eventually have to fuse more levels and may end up in the lumbar spine. He thought this would not sit well with our daughter as she is very athletic and would want as little loss of mobility as possible for her future.

On the other hand, she has been doing gymnastics her entire life and is very skilled with it. Gymnastics would not be an option after surgery, so she is dead set against surgery right now. She is also terrified of procedures in general, so an undertaking like fusion is not looking inviting to her. In addition, as she points out to me, she has no pain, her body does amazing things for her and she wears her brace for about 19 hours a day. She also looks pretty balanced, not perfect, but pretty good. Her x-rays always shock me, because I feel like she should look more crooked from the outside.

So, here we sit, wondering if the benefits of an earlier surgery are worth it or not. I am afraid her bottom curves won't keep holding in her brace and she will need a larger surgery down the road. On the other hand, it is really tempting to just keep letting her be a kid and do the things she enjoys.

Your thoughts are appreciated.

Thanks.

Sarah

[rohrer01]

As a parent, I see your conundrum. If she is dead set against surgery, she may well resent you for forcing her to have it. On the other hand, she may thank you down the road if her lumbar is saved. If she is so in to gymnastics, that would be a really hard blow to her and her anger may make her recovery more difficult. I really don't know what I would do. How fast is her curve progressing? The bad thing about life sometimes is that we can't always choose to do the things that we would like due to physical constraints. Look at all the kids in wheelchairs. I'm sure there are plenty of things that they would like to do but can't. It's not fair, but it's reality. I would really be afraid to push a 13 year old into surgery, but then again, as her parent, you have every right to do so. Even more so you have an obligation to make decisions pertaining to her health and to decide what YOU think is in her best interest. I would recommend getting a second opinion from another spine specialist. If he says the same thing, you might try reasoning with your daughter and offering her alternate activities that she can do post-op, like swimming. I'm really sorry I don't have better advice to give. Just weighing the pros and cons. If she ends up with her lumbar fused later, she very well may resent you for not standing up and making her do it. In the long run, she may end up with lumbar fusion later in life, anyway. I'm probably not being very helpful. I'm just trying to come up with some possible scenarios.

When I was 16, my mom told me that they wanted to do surgery and I didn't want it. I remember going through the whole pre-op talk with someone. The conversation was about donating my own blood, and they were at that point. I don't remember freaking out about it, but I do resent not having the surgery when I was younger, because now, they have changed the standard and my curve is progressing. I started out with a very high and tight left thoracic curve from T1 to T6. Now I have a double major curve and will have to be fused all the way down to L2, if and when I have surgery.

Pooka1 has two daughters that are fused. You might try talking to her about her experiences and share them with your daughter.

Best of wishes for your very difficult decision.

[jrnyc]

what age does the surgeon recommend for surgery...?
does she not have to stop growing first....otherwise, different kind of pediatric type surgery would be needed...
are you thinking surgery when she turns 18...or 21...?

i think i can understand, considering her age, her compliance with wearing the brace, and her athletic activities, that she would be
set against the surgery right now....perhaps to her mind, it sounds like it will ruin her teen years....
it would definitely prevent those same gymnastics she is doing now....
to her, it may seem like an invasion of her world, against what her wishes and plans are for herself....

have you considered any talk therapy for her....?
as a social worker, it is something i would think might be helpful....it would at least
give her a neutral place for her to express how she feels about all of it....

also, how many scoliosis surgeons have you taken her to see, how many opinions....?

best of luck...
jess

[Pooka1]

Hi Sarah,

I am sorry to hear about the curve progression.

My daughters are both fused from T4-L1 They say it is is very close to normal.

They are discussing a much shorter fusion for your daughter, T3-T9. She must have a very tight curve up there. I am very doubtful that such a short fusion in that area of the spine could possibly affect her gymnastics. It is in an area of the spine that doesn't move much anyway to my knowledge.

Did the surgeon say she has to give up gymnastics forever or did he say she has to restrict activity for several months until the spine fused? Again, I would be shocked if he said she couldn't resume gymnastics with that particular fusion but I really don't know. Maybe get another opinion on that... some surgeons don't even restrict kids at all because the instrumentation is so good.

My concern from reading the size of the lumbar curve was that it might be structural. But apparently your surgeon determined it is compensatory even at that angle. Were it me, I would have felt I dodged a huge bullet with that. For both my daughters, correcting the thoracic curve corrected the lumbar curve. And if you read through the adult testimonials, it seems clear that at least some of these formerly single thoracic curves eventually involve the lumbar and those folks need way longer fusions than otherwise per what is known to my knowledge. I think the surgeon told you that.

I don't know the deal with such small tight thoracic curves and their propensity to eventually include the lumbar but I, this lay person, view that as playing with fire. You are likely looking at a relatively short, seven-level fusion in an area that doesn't move much anyway and where your daughter may notice no difference afterwards and would potentially be able to continue with gymnastics after the recovery. Balance that against a very large though still compensatory lumbar curve that may become structuralized requiring a huge fusion from T3 well into the lumbar perhaps, I don't know.

I would get some more opinions on the two issues of continuing with gymnastics after a short T fusion and the chance of needing a huge fusion if you wait. I view scoliosis as a game of cutting losses. Although normal is no longer on the table no matter what you choose to do or not do, you can always try to minimize the total loss.

Good luck.

[Pooka1]

On the other hand, it is really tempting to just keep letting her be a kid and do the things she enjoys.

This surgery did not impact either of my kids very much. They were back in school full time at about 3 (kid 2) and 3.5 (kid 1) weeks and generally had fast recoveries. Your daughter will have a shorter fusion yet and I imagine it will be even easier for her but I don't know that. Other issues like reaction to pain meds affects recovery. My kids are identical twins but reacted very differently to the same meds.

Now they are not sporty like your daughter so that is a major difference. But they claim they don't think about scoliosis any more. They look and feel normal. It just isn't an issue for them any more. They have moved on in every way.

[mjpj]

Hi Rohrer. Thanks for the thoughts.

How fast is her curve progressing?

Her thoracic curve had just slowly crept from about 28-32 from age seven through 11. Her lumbar curve was always in the low 20s during that time period.

When she was twelve things started to change.

In spring of 2010 her thoracic curve jumped up 10 degrees in a 6 month time period so it was at about 42 degrees.
Then the following spring of 2011 her lumbar curve had jumped up 20 degrees in a period of 6 months to about 42 degrees.
Finally this past fall her thoracic curve jumped up again to its current 52 degrees in a 6 month time period.

Now she is 13.

So it seems like nothing happens and then she jumps up significantly in a short period of time.

[mjpj]

Hi Jess,

what age does the surgeon recommend for surgery...?
does she not have to stop growing first....otherwise, different kind of pediatric type surgery would be needed...
are you thinking surgery when she turns 18...or 21...?

have you considered any talk therapy for her....?

also, how many scoliosis surgeons have you taken her to see, how many opinions....?

Our surgeon suggested surgery as soon as now or sooner than later to prevent having to fuse further levels. I know she is not done growing yet. I don't really know how much more growth she has left. She is at a risser one right now. She is about 4 inches shorter than I am, so I assume she has about 4 more inches left to grow. I didn't get the impression that he would use the growing rods though. I guess I have to ask.

She has seen a psychologist in the past but never for this issue, although I have thought of it. She generally is really open with me and always preferred to confide in me rather than a stranger. However under the circumstances maybe someone other than me would be better.

We have not gone for a second opinion yet, although I am working on it. My pediatrician suggested I ask our surgeon for some recommendations in the area. I thought that seemed awkward, but I probably will ask him anyway. I was also going to submit a request to Schriners in Chicago. We are in Madison. If any of you know good doctors around our area I am open to suggestions. However, our insurance really only covers doctors at the University of Wisconsin Hospitals and Clinics. There are only two pediatric orthopedic surgeons there. We have already exhausted one guy, so we see the other one.

Thanks again for the thoughts Jess.

Sarah

[mjpj]

I would get some more opinions on the two issues of continuing with gymnastics after a short T fusion and the chance of needing a huge fusion if you wait. I view scoliosis as a game of cutting losses. Although normal is no longer on the table no matter what you choose to do or not do, you can always try to minimize the total loss.

Good luck.

Thanks Pooka. Good advice. Our surgeon said she could probably still do some gymnastics, but when he started talking about motions that might not work well and staying away from risks of high impact and the potential of landing on her head, we both felt like my daughters idea of gymnastics is not really in the cards after a fusion. (Not that she lands on her head often, but it is definitely a possibility It would be amazing if we were wrong though. Thanks again.