Only 50% correction after surgery - 15yo daughter devastated

[rohrer01]

Yes, she's the older of the two, but wanted to be finished high school before taking the time necessary for the surgery and recovery.

You lost me there. You say she's 15? That's like second year high school. Your younger daughter also needs surgery? I'm sorry to hear that you have to go through this twice. :-(

Sharon is DEFINITELY the person who can relate to this one since both of her girls had to have surgery, too. She seems happy with the results even though one girl got better correction than the other, right Sharon? It seems her girls are happy, too, from what she says.

I hope your daughter can get past the disappointment of not having a "perfect" spine. As long as she is pain free and the progression is stopped so she doesn't have heart or lung issues, then those are the really important things. I don't even know if her dancing will be affected. They probably gave her some temporary restrictions.

My DIL was fused at 16. She didn't get a perfect correction, either. She had a highly rotated 48^o curve. She is left with a curve in the low 20's, too. She also still has a rib hump in the back. BUT... she's happy it's over and happy with the correction she got. She does just about anything she wants to do. Right now I don't think she has any restrictions, except for what she restricts herself from doing due to pain (they left a long piece of rod in there attached to nothing that digs into her muscle once in awhile).

[rohrer01]

The older daughter wants to wait to have surgery?

Is the younger daughter's experience having a negative impact on her decision at all?

[Pooka1]

Well, my surgeon did say that this was the most common curve, even though each case is quite individual.

When the lumbar straightens out, that would level out the hips as well, right?

Well thoracic curves are the most common but there are different types of thoracic curves.

Does she have a slight torso lean? That is what took a while to come upright. But I have to say if you know what to look for, her hips are slightly uneven. But it's like the other kid with a slight residual rotation... it is noticeable if you know what to look for but will not be noticed by the general public because it's too subtle. 100 out of 100 naive people would not notice these minor asymmetries in my opinion. My daughters look and feel normal, have no restrictions to anything they want to do, and we as a family don't think about scoliosis any more. We have moved on. Huge win. Pedicle screws are the bomb. :-)

[Pooka1]

Sharon is DEFINITELY the person who can relate to this one since both of her girls had to have surgery, too. She seems happy with the results even though one girl got better correction than the other, right Sharon? It seems her girls are happy, too, from what she says.

Both girls got the best correction they could have as far as I know. Not all curves can be hyper-corrected from what I read. One has a straight spine and the other has residual balanced curves in the mid 20*s. They look and feel normal and have moved on in life past scoliosis.

[mom2two]

The older daughter wants to wait to have surgery?

Is the younger daughter's experience having a negative impact on her decision at all?

Yes, the older girl will be 18 and out of school when she has her surgery. She's planned it this way so she doesn't have to miss any of her senior year(s) and should be fully recovered before starting university.

Although she's as vain as any kid, she's not a dancer and not as fixated on perfect lines as her sister. She seems to be more focused on long-term health, rather than appearance only, although she'd obviously like to see as much correction as possible.

[mom2two]

Does she have a slight torso lean? That is what took a while to come upright. But I have to say if you know what to look for, her hips are slightly uneven. But it's like the other kid with a slight residual rotation... it is noticeable if you know what to look for but will not be noticed by the general public because it's too subtle. 100 out of 100 naive people would not notice these minor asymmetries in my opinion. My daughters look and feel normal, have no restrictions to anything they want to do, and we as a family don't think about scoliosis any more. We have moved on. Huge win. Pedicle screws are the bomb. :-)

Sharon, can you tell from my daughter's x-ray if she's got pedicle screws too?

A comment re "naive people" -- our diagnosis came out of the blue in 2011 for both girls -- we just happened to be re-establishing with our family doctor, after having been away for some years, and he was blown away when had them touch their toes. I knew so little that I thought he was checking for flexibility -- even with 40 degree curves and rotation, etc., I didn't see it and I simply no clue. The youngest was already dancing at this point, by the way, and none of her teachers even noticed (or said anything).

My kids thought having "tired" backs was something everyone got, and that nobody else's backs touched the back of their chairs (attributing that to really bad planning on the part of all chair-makers).

Of course, now I can see rotation and mis-alignment or humps, and so on, but that's only because of my immersion and education in the subject over the past few years.

I can't wait til we move on from scoliosis. Get this, though -- my mother has arthritis in her spine, and it's given her scoliosis!

[rohrer01]

Both girls got the best correction they could have as far as I know. Not all curves can be hyper-corrected from what I read. One has a straight spine and the other has residual balanced curves in the mid 20*s. They look and feel normal and have moved on in life past scoliosis.

When I took a relook at your girl's x-rays, they both got some great correction from others that I've seen on here. I'm going to guess that the one that is 5' 10" is the one with the residual curve. And no, not every curve can be completely corrected. If they wanted exact perfection they'd have probably had to fuse her all the way down, then because of her anatomy she may have been left with a high shoulder. Who knows? A small curve is usually pretty benign. And if you want to think about lumbar degeneration, we ALL get it if we live long enough. I would choose flexibility over a full spinal fusion if I could avoid it, too. It's just that it looks like "Thing 2" has such a similar curve to this other girl that it's amazing. You are definitely the one to give this girl some hope!

Like I said, my DIL was left in the 20's. They went to I think L1 on her, but the rest of her lumbar is really straight. If, by looking at her x-rays, they would have straightened her up completely, she would have been left with a very high left shoulder. Her curve resembles mine a bit in the sense that she also has residual curve up to her cervical area. They would have had to extend her fusion into the cervical in order to get perfect correction and no high left shoulder. Her big curve was mid thoracic, though, unlike mine being the upper thoracic/cervical.

So, Mom2two, it just goes to show how variable things are with these curves. A perfectly straight spine doesn't always give the best cosmetic correction. In order to achieve that, they would have to make these fusions longer, either above or below the fusion to keep the shoulders even. The risk benefit ratio in that just isn't worth the loss of flexibility. Sometimes they HAVE to leave some curve to keep the person balanced. If they would have straightened out your daughter's thoracic curve completely, I think she would have been VERY unhappy. She would probably have a high shoulder and maybe even more stress on her lumbar. Just thinking about the physics of it, she may have ended up with a permanent lean besides. My guess is that the doctor had to make decisions for her overall well-being. It's hard to see on the operating table if one shoulder is going to end up higher or not. These guys are amazing in what they do! Your daughter is very fortunate to have level shoulders since that seems to be one of the more noticeable things.

Please keep us updated as to how things go and what the next doctor says.

((((HUGS))))

[Pooka1]

Sharon, can you tell from my daughter's x-ray if she's got pedicle screws too?

It looks like it's all screws on the right rod in the picture (left rod in real life) and there may be some hooks instead of screws on the other rod. I think both my kids have some hooks at the top on one side because screws can pull out more easily in that location as far as I know which isn't far!!!!!!!!

The screws allow the massive de-rotation maneuvers that have largely obviated the need for thoracoplasties. There are relatively few testimonials of people in the US getting that procedure because of this.

Thing 1 (not the false double case) was extremely rotated and the surgeon managed our expectations well by saying he would try to get as much de-rotation as possible but made no promise as to the final outcome. In fact he removed 95% just with the screws and the de-rotation maneuvers they allow. I saw the sagittal radiograph from 4 days post op and was shocked to see the two rods almost completely superimposed which indicated almost complete de-rotation. I don't know if the surgeon was just being cautious and wasn't sure what he could achieve until he was in there or if he just wanted us to have a surprise.

That said, I would say there has been some small amount of settling and I think her rotation is not still 95% but maybe 90% corrected. Still, it is not noticeable unless you know what to look for in my opinion.

Thing 2 (the false double), because she has two large, balanced curves, never appeared to be rotated much at any point.

[Pooka1]

I can't wait til we move on from scoliosis. Get this, though -- my mother has arthritis in her spine, and it's given her scoliosis!

You will get through this and move on! Your daughters will be stars!

We are lucky this surgery is as good as it is. My daughters never would have finished high school not to mention go to college had they not had this surgery given how fast their curves were moving.

It sounds like your mother has adult degenerative scoliosis, no relation to adolescent idiopathic scoliosis. There are people on the forum with that if your mother wants to participate.

[LindaRacine]

It looks like it's all screws on the right rod in the picture (left rod in real life) and there may be some hooks instead of screws on the other rod. I think both my kids have some hooks at the top on one side because screws can pull out more easily in that location as far as I know which isn't far!!!!!!!!

The screws allow the massive de-rotation maneuvers that have largely obviated the need for thoracoplasties. There are relatively few testimonials of people in the US getting that procedure because of this.

Thing 1 (not the false double case) was extremely rotated and the surgeon managed our expectations well by saying he would try to get as much de-rotation as possible but made no promise as to the final outcome. In fact he removed 95% just with the screws and the de-rotation maneuvers they allow. I saw the sagittal radiograph from 4 days post op and was shocked to see the two rods almost completely superimposed which indicated almost complete de-rotation. I don't know if the surgeon was just being cautious and wasn't sure what he could achieve until he was in there or if he just wanted us to have a surprise.

That said, I would say there has been some small amount of settling and I think her rotation is not still 95% but maybe 90% corrected. Still, it is not noticeable unless you know what to look for in my opinion.

Thing 2 (the false double), because she has two large, balanced curves, never appeared to be rotated much at any point.

All screws, no hooks. There is one screw missing, but that's not uncommon. The pedicle may have been too small, or have something a little unusual that makes putting a screw into the pedicle difficult.

[mom2two]

Thanks to everyone for the input -- when I get more information, I'll definitely update.

steph

[Pooka1]

Okay here's how the false double case (Thing 2) bounced around... it shows some settling....

Fusion in October 2009.

4 days post op: 16* T and 26* TL
23 days post op: 17* T and 19* TL
8+ months post op: 20* T and 25* TL

That's all in the noise mostly. I mis-remembered the magnitude of the instrumented curve... I thought it was larger. That's stilll balanced within the noise.

The issue was the torso lean as opposed to the residual curves in terms of what I noticed. That was still improving after a year but had finally stabilized by about two years I'd say. I don't notice a lean any more at least whereas I would before. Her shoulders were balanced from day one. The other kid (thing 1) had a high shoulder (don't remember which) and she was very concerned but the surgeon assured her it would come even with the other and it did. That took months. All this post op stuff takes months so it's always a good idea never to fret too early. :-)