Jesse, 5 1/2 months post op

[babachi]

Well, Jesse had an appointment with the surgeon today. (his surgery was 12/15 and his irrigation and debridement was 12/25)
Jesse has NO restrictions except he cannot play ANY contact sports, ever!! This is a relief to him, as now he can start going to the gym and feel free to enjoy summer.
Jesse does however, still have that sagging shoulder. At one of out last appointments, the surgeon said it could take up to 2 years for it to level off and that he should be doing exercises to strengthen his trapezoids. Well, it seems that because the surgeon did such a wonderful job correcting the larger curve, that his small upper thoracic curve (~22*) is most noticeable, hence the sagging shoulder. His large curve measured between 60-67* and now measures 6*.
The kicker is the doc said "that's my mistake. I did too much correction on the bottom." So, now Jesse is totally ticked and feels that surgery was the biggest mistake. To the point that he doesn't want to have blood work done to see if there is a bleeding disorder (he bled a lot during surgery), nor will he agree to have his wisdom teeth out.
The surgeon put a 3/8 block of wood under Jesse's shoe and that evened him off, so the surgeon suggested Jesse put an insert in his right shoe. He also checked past xrays to make sure the upper curve hasn't progressed. (it hasn't)
The last complaint Jesse has is he still has areas of numbness along his ribcage. Hopefully, that feeling will come back within the year.
I feel bad that Jesse doesn't feel like he got the results he wanted. It's difficult because he wasn't in any pain prior to surgery, so for him, the success is only evident in the xrays. I'm happy with the correction that was done, but at the same time, wish Jesse didn't have a sagging shoulder. I know it's easily fixed with the shoe insert, and things could be much worse. I just feel bad that Jesse's having a hard time with it.
I should also add that since the surgery, Jesse has been experiencing some mild depression as a result of the stress of the surgeries and hospitalization. This has certainly compounded the news he got today.
Thanks for being there!
Bethany

[Sherie]

I'm so sorry to hear about that. After all they go through, you just want them to be happy and get back to a normal life. It may take some time for him to digest the news, I hope that everything works out for him.

Sheena had numbness for a very long time. I think she was mildly depressed too for some time after surgery. It wasn't anything outright or noticeable, she just wasn't herself for a time but it eventually passed. I'm sure it will for Jesse too.

[laurieg6]

I can really relate to what you're saying about the results of the surgery. Alexander doesn't really talk about his feelings (at all!) and he seems happy about his results and being out of his brace. However, I'm the one who is really disappointed that his posture isn't better and that I'm still having to remind him to "stand up straight".

He is very active and has no pain and seems happy, is doing great in school, etc. But he still bends one knee and leans/curves to one side unless he's thinking about his posture or I remind him. He is already short and when he stands that way, I think he loses 3-5 inches of height.

I think I'll buy a shoe lift and see if that helps. We'd tried one a while ago but it was small and not very effective. I've been so busy and meaning to go get a thicker one...

[Pooka1]

Wow that's a lot for a kid to digest. He had some rough sledding and I can understand his feelings.

The point is his spine is stable and the shoe lift will bring him even. Maybe the upper curve will staighten over time.

I don't quite understand how the extreme straightening of the lower curve didn't straighten the upper curve and why the surgeon said he made a mistake. My daughter was corrected from 58* to 5* and her lower curve disappeared by the first radiograph a few days post op.

Good luck to him.

[babachi]

I don't quite understand how the extreme straightening of the lower curve didn't straighten the upper curve and why the surgeon said he made a mistake.

Sharon, the way I understood it, was that because there was so much corrected on the lower curve, it made the upper curve more noticeable. Jesse actually had the shoulder sag in the brace, but not out of it, weird. I don't feel the doctor "made a mistake" and I don't know why he said it like that. I feel he was basically saying he could have gone one more vertebrae higher (T1).

[Pooka1]

Wasn't the upper curve compensatory? Otherwise wouldn't he have fused it?

I bet it straightens over time. Didn't the surgeon think it would?

[Beckymk]

I'm glad that he can go back to the gym and that from the x-rays, etc.. everything looks good.

I'm sad that he feels like it was a waste of time for the surgery.

[WNCmom]

Bethany--

I'm confused. I looked back and see Jesse was fused T2-T12. Does his upper thoracic curve go up into his cervical spine (or were there two thoracic curves and the surgeon straightened the lower one more)? Is that what's more noticable after surgery? I know Sidney also has a drooping shoulder, and his left shoulder/lower neck muscle is more developed than his right. It is more noticable post-op, and the hope is that the muscles will even out, but I think it will take time. Most people don't notice it unless I point it out, or unless he is shirtless. Of course I notice it all the time.

In our case, Sidney seems to be doing very well emotionally. It has been harder for me--just recently I seem to be letting go more.

I hope Jesse begins to feel better about the surgery soon--I'm sorry he feels it was a mistake.

You two definitely have had a hard road.

[babachi]

Mary Ellen,
Yes, Jesse had 2 thoracic curves and the surgeon used more hardware on the lower curve. I thought the upper one was compensatory. At the appointment, I asked about correcting it. I certainly don't want Jesse to go through with surgery again, I just wanted info. If surgery were the case, he said he would only go up to T1. There is no cervical curve. He is NOT recommending more surgery. Again, more exercise to strengthen shoulder and upper back muscles, the shoe insert and paying more attention to his posturing.
I'm sure there were so many other questions I didn't think to ask. Honestly, I was shocked, upset and trying to keep Jesse from losing it in the office.
I don't know if the surgeon thought the upper curve would respond differently than it did. We don't have another appointment until December, so if anyone has any questions to suggest I ask, please let me know. I just don't know what to do from here.
I'm trying to figure out how to post the xrays so there's a visual. I didn't even ask for copies of the ones from the other day.
Bethany