Only 50% correction after surgery - 15yo daughter devastated

[mom2two]

Hi all,

My 15yr old daughter (a dancer) had spinal fusion with thoracoplasty Jan 27, 2014. Her surgeon was very pleased directly after the 8.5 hr procedure, saying there was an 80 percent correction. At the 3 week post-op x-ray, he could not explain why the 51 degree right thoracic curve was not better than 24 degrees. He expressed surprise and dismay as to how crooked my daughter still appeared, and did not hold out much hope of improvement over time as her body recovers.

The correction was only to the upper part of her back where the spine itself was deformed -- there are no rods or screws on the lower back. The surgeon said the lower half should straighten out in a sort of reaction to the correction of the upper half.

If anyone has words of wisdom, I'd be grateful.

[Pooka1]

Hi. I am not sure anyone here can know what is going on. Can you post the x-rays?

The testimonial is hard to figure. If you got an 80% correction in the OR then the curve was at 10* post op. Is there an x-ray showing that 10* instrumented curve? And now 3 weeks later that same section of the curve is at 24*? It sounds like the surgeon estimated the correction percentage incorrectly unless multiple screws pulled out or something. I have no idea. The instrumented portions of my daughters' curves didn't change as far as I could tell from the x-ray 4 days post-op to any subsequent point. The lower uninstrumented curve bounced around a bit on the one kid but then stabilized.

Maybe Linda has a comment.

[rohrer01]

Hi all,

My 15yr old daughter (a dancer) had spinal fusion with thoracoplasty Jan 27, 2014. Her surgeon was very pleased directly after the 8.5 hr procedure, saying there was an 80 percent correction. At the 3 week post-op x-ray, he could not explain why the 51 degree right thoracic curve was not better than 24 degrees. He expressed surprise and dismay as to how crooked my daughter still appeared, and did not hold out much hope of improvement over time as her body recovers.

The correction was only to the upper part of her back where the spine itself was deformed -- there are no rods or screws on the lower back. The surgeon said the lower half should straighten out in a sort of reaction to the correction of the upper half.

If anyone has words of wisdom, I'd be grateful.

Mom2two, welcome to the forum. This is a great place to ask questions such as yours as there are a lot of personal and some professional opinions here.
I can think of two things that may have happened:

1. The doctor only estimated the percent correction based on what he saw on the operating table, not on intraoperative x-rays. I know some doctors DO use intraoperative x-rays and some don't. That would be a good question for the doctor, especially when he said 80%.

2. Something is malfunctioning in the hardware. I think this is unlikely unless the doctor made a mistake during surgery. I'm sure Linda Racine (the moderator) will correct me if I'm wrong about surgeon error. If that is the case, however, NOW would be the time to fix it because her spine is not fused, yet.

I really think it is most likely the first scenario. 24^o on the operating table probably looked like a HUGE improvement to the doctor. And while we all want our backs to be perfectly straight after surgery, that is rarely ever the case. I've only read a couple of testimonials where people have gotten a perfect or near perfect correction. My DIL had surgery at 16 for a 48^o highly rotated curve. After surgery her curve is in the 20's AND she still has a rib hump because the rotation was so severe. It's my understanding that you can expect about a 50% correction for most of these surgeries. Of course, the younger and more flexible a person is, the better chance they stand at getting a better than 50% correction. But there are just some cases, even with youth on your side, that it just can't be done. It's better to have a 50% correction and stop, rather than trying to push for a 100% correction and end up stretching the spinal cord and causing permanent nerve damage or even paralysis. Some people even have to be fused "as is" and don't get any or very little correction. So putting that into perspective, going from 51^o to 24^o is a lot better than some people get. Honestly, a 24^o degree curve isn't that noticeable at all. But since you are not sure what happened, my advice would be to go back to the doctor and ask him if that was an estimation or an actual measurement taken during the surgery or right after. It may ease your mind to know.

Is your daughter left "looking" more uneven after the surgery? I know how hard it is for young people, especially, and self-esteem issues. I've had my scoliosis a very long time and have had to alter my clothing for years. I don't anymore because my lower compensatory curve started progressing until now it's almost as bad as the original curve and has become structural. The only good thing I have to say about that is the fact that my shoulders are finally even (almost) and no one can spot me out as a scoliotic.

Your daughter just went through a MAJOR trauma. I'm sure with that in mind she wanted a perfect back as the outcome. I'm sorry it didn't work that way. The doctor really should have explained that most people get around a 50% correction so that anything above and beyond that would be a real treat. Make sure that there's nothing medically going on with her new implants just to be sure. My guess is that she's just fine and will eventually get used to her new body.

Sorry for the book. I just have a lot of thoughts about post-surgical things since I haven't had surgery and I see how much was left in my DIL. I think my expectations were also more unrealistically high about the surgery until I came to this forum.

Take care. I hope your daughter isn't in too much pain anymore.
gentle (((hugs))) to your daughter and BIG ((((HUGS)))) to you, mom. It'll be okay.

[mom2two]

Hi, Pooka1. I don't have the "before" x-ray to post, and the only "after" x-ray I have is one we took on my daughter's camera of her x-ray. I'll see if there's anywhere I can post that.

Rohrer01 -- in our post-op x-ray, the surgeon didn't see anything wrong with the hardware, and my daughter was already extremely upset about the results, saying the surgery simply wasn't worth it. So, I think it may be that her expectations weren't met at all -- although her shoulders are more even, one shoulder blade still sticks out noticeably, her back is rounded more on one side than the other, and her hips are off-kilter.

I'm getting a referral to another surgeon to take a look at her and the x-rays, just to make sure everything that can be done has been, and that it's been done properly.

[rohrer01]

Rohrer01 -- in our post-op x-ray, the surgeon didn't see anything wrong with the hardware, and my daughter was already extremely upset about the results, saying the surgery simply wasn't worth it. So, I think it may be that her expectations weren't met at all -- although her shoulders are more even, one shoulder blade still sticks out noticeably, her back is rounded more on one side than the other, and her hips are off-kilter.

I'm getting a referral to another surgeon to take a look at her and the x-rays, just to make sure everything that can be done has been, and that it's been done properly.

When was the post-op x-ray done? Was it done in the hospital? I think it's pretty standard to take an x-ray right after surgery or during surgery. That way they have something to compare to. My DIL didn't get the best surgeon, either. Is your daughter even willing to go through that again to get better results? Didn't you say they did a thoracoplasty? That's really painful I've heard. We were just talking about that on another thread and they almost never do those in the U.S. anymore. They are more commonly done in the UK.

Just a thought. If you are thinking another surgery, I don't know how much time you have before those bones start to fuse enough to make a revision for better correction possible. Linda Racine might have that information. I think you are right about her expectations. She was probably expecting to be "cured". There is no cure.

[rohrer01]

Oh, and maybe talking to her about the long term benefits. At her age a curve that size would most definitely have progressed causing her further problems with pain and deformity. Having a larger curve fused would have not given her the results she has now. It most certainly would be less of a correction if she waited until the curve was huge. I think helping her with her frame of mind might be a good idea. I would also take her to see a top notch surgeon. You can find one through the Scoliosis Research Society.

I'm so sorry you are dealing with this. Your poor girl. :-(

[Pooka1]

I'm getting a referral to another surgeon to take a look at her and the x-rays, just to make sure everything that can be done has been, and that it's been done properly.

That's a very good idea. I assume you used a very experienced surgeon specializing in scoliosis but a second opinion is never bad to have.

[Pooka1]

The correction was only to the upper part of her back where the spine itself was deformed -- there are no rods or screws on the lower back. The surgeon said the lower half should straighten out in a sort of reaction to the correction of the upper half.

Okay I have some more comments. :-)

Your daughter has a thoracic curve but there are different kinds of thoracic curves. My identical twin daughters both had a thoracic curve in the high fifties and were both operated on by the same surgeon and have identical levels fused with identical instrumentation. But one has a straight spine now (no residual scoliosis) but with some rotation and the other has twin curves in the mid twenties with no visible rotation. The first kid had the type of thoracic curve that could be hyper-corrected without any issue and so she was. She looks normal but if you know to look for rotation you will see it. The second kid had a type of thoracic curve that if you attempted to hyper-correct would leave the kid with a high left shoulder. So they don't hyper-correct these types of curves. They leave them with some curve. My daughter has even shoulders and small (mid twenties) balanced curves so she looks normal. These curves are not noticeable because they are balanced and she isn't rotated.

I really can't figure out about the 80% correction comment and tend to think it is some type of miscommunication. The x-rays might clear it up... did she look like she had two large curves but only one needed fusing? That's what it is sounding like to me. How big is the lower curve and does it match the instrumented curve?

Hang in there. You'll find the answers.

[mom2two]

The text describing the initial x-ray back in 2011 (when the curve was 40 degrees), and looking at frontal view with 12 pairs of ribs, 12 thoracic shape vertebrae and 5 lumbar shape vertebrae:

There is a broad dextroconvex scoliosis of the thoracic spine that measures 40 degrees between the superior endplate of T5 and the inferior endplate of 2. The left iliac bone is above the right iliac bone by approximately 1.0 cm.

[Pooka1]

Does her fusion go from T5 to L2?

[mom2two]

I don't know and I can't upload the photo of the x-ray (which isn't great anyway, as it cuts off the bottom). But it's just the top half that's fused. Can I upload the image if I PM you?

[Pooka1]

What format is the image in? Can you copy/paste to a word document? That will upload.

[Pooka1]

Remember to block out any personal information (name/date) by putting a black box over it in word art.

[Pooka1]

I don't know and I can't upload the photo of the x-ray (which isn't great anyway, as it cuts off the bottom). But it's just the top half that's fused. Can I upload the image if I PM you?

Wait a minute.... are you saying the SINGLE curve extends down to (at least) L2 but she isn't fused to (at least) L2?

[mom2two]

I believe that's correct, Sharon -- the surgeon said the lower part of the spine (no fusion) will straighten out "a little bit." Sorry I'm still unable to upload the image, but the rods go about half-way down the spine (I can count seven screws), certainly not as extensive as most I've seen. I understood his reasoning to be that the lower part of the spine was not actually malformed, but rather reacting to the deformation in the upper part of the spine.