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smileyskl
02-19-2009, 11:08 PM
:eek:Totally unexpected news at post-op visit. Of course I am beginning to get used to unexpected news these days. I knew by the look on his face that it is not what the doctor was expecting either. Katelyn's lumbar curve that was supposed to straighten out is now going the opposite direction.. This is the reason for her lean to that side now. He wants her to wear her brace again. She is soooooooooo upset:( He doesn't think it will be for long- maybe a few months but he can't gaurantee its going to fix it either. I am trying very hard to heed my own advice about "one day at a time" and thats what I am doing but it seems like there is never just a "Good Visit" so to speak. I know it could be worse though. Did any of your kids have to wear a brace after surgery??? and did it work??? Thanks.

Sharon

Pooka1
02-20-2009, 07:17 AM
There are testimonials of kids who wore braces for a few months after surgery. I can think of at least two. Maybe they will explain the circumstances as I don't remember them.

Never lose hope. These guys can fix most things.

pmsmom
02-20-2009, 07:21 AM
Oh, Sharon, I'm so sorry for the news! :(

Please know we're thinking of you. I agree with Sharon as well. These doctors are experts in their field. They also have colleagues with whom they consult.

Hang in there and know we are with you!

Marian

Carmell
02-20-2009, 11:56 AM
Sending big hugs to Sharon and Katelyn. I can imagine how "punched in the gut" you feel. Hopefully the doc is right and that bracing for a few months will be the support her lumbar spine needs to stay straight. How old is Katelyn? I wonder if this has anything to do with more adolescent growing? Hopefully it isn't just from surgical overcorrecting. Know we are sending our best wishes your way.

Pooka1
02-20-2009, 12:53 PM
I wonder if this has anything to do with more adolescent growing?

She was just fused several days ago. I don't see how any significant growth could have occurred.


Hopefully it isn't just from surgical overcorrecting. Know we are sending our best wishes your way.

She had a T52 and L52. Her fusion is T2 to T12. I don't see how the fusion could have caused the lumbar to switch curve direction. It's one thing to say the fusion wasn't long enough in which case I assume the same curve might progress in its old direction. But this lumbar curve switched. And virtually instantaneously. Incredible.

babachi
02-20-2009, 01:22 PM
Sorry for the news, Sharon.
Thinking about you guys.
Bethany

txmarinemom
02-20-2009, 03:09 PM
... Katelyn's lumbar curve that was supposed to straighten out is now going the opposite direction.. This is the reason for her lean to that side now.

Sharon, I'm sorry y'all didn't get better news ...

I'm assuming her lumbar curve corrected on opposite bending (because a true double major/double structural would have required fusing both curves). What does it do now on opposite bending?

Hang in there.

Pam

concerned dad
02-20-2009, 03:48 PM
I am sorry that you got bad news.


He wants her to wear her brace again.


If her curve has changed directions, shouldnt the brace be changed (or adjusted) to reflect that?

Pooka1
02-20-2009, 04:15 PM
Has anyone ever heard of a curve switching direction just a scant few days after fusion???

And the entire spine was straight immediately after the surgery.

This sounds incredible. Unique perhaps?

smileyskl
02-20-2009, 04:21 PM
Thanks everyone,

I am not sure really how to explain what has happened. On the initial X-ray after the surgery (taken in the OR I assume) it is perfectly straight top to bottom but within ten days is now leaning. I am not sure why he didn't go into the lumbar area and do it all at one time. I have a lot of questions about that when we see him in a week. Obviously, this is not what any of us expected and I was sort of but not totally in shock when I saw the new x-ray. I knew something was up because of her lean but wasn't prepared for that.

Concerned Dad,

Yes, she will have to have the brace repadded and maybe even get a different brace. We still have to consult on that, but he wanted her to just wear the one she had until then and get used to wearing it again. He says we are talking about months, not years.


I am hoping that since it went from straight to leaning so fast that maybe it will correct just as fast. Maybe if its held that way a while it will stay??:confused:

I don't know, I need more info from the doctor - I was just wondering if others experienced this.

smileyskl
02-20-2009, 04:24 PM
Sharon,

It is more of a slant, not a curve, if that makes any sense, I need to clarify because I said curve, but very noticiable making her hips completely uneven and also her shoulders.

Sharon

Pooka1
02-20-2009, 04:49 PM
I am hoping that since it went from straight to leaning so fast that maybe it will correct just as fast.

Excellent point.

Also, if it's a lean then it sounds like the junction between the fused and unfused portions is bending (about that point) and the lumbar is staying straight?

Good luck, to you and your daughter, Sharon.

txmarinemom
02-20-2009, 04:54 PM
Sharon,

It is more of a slant, not a curve, if that makes any sense, I need to clarify because I said curve, but very noticiable making her hips completely uneven and also her shoulders.

Sharon

You mean like a trunk shift?

smileyskl
02-20-2009, 04:55 PM
Exactly, it is bending from where the rods stop but yes it is straight, just drastic.

Sharon

smileyskl
02-20-2009, 04:59 PM
I know it is obviously very flexible, because when he was holding her hips straight, she looked straight. I guess thats the idea with the brace.

Sharon

Carmell
02-20-2009, 05:02 PM
I wonder (hope?) its because she's so fresh from surgery and her body is still learning to relax and get used to the new position. Posture is often an issue with post-scoli patients (not all, but many). After several months (usually) their bodies align much better and "relax" into a more normal position. She is still so fresh from surgery (sorry I didn't remember that before) that hopefully her body is just very tense and over compensating on its own - leaning off to the opposite side to compensate for the long time she was going the other way. I hope this isn't wishful thinking. Good luck, again.

smileyskl
02-20-2009, 05:15 PM
Thanks Carmell,

Thats what we are hoping and praying for too. I sort-of expected him to suggest some sort of PT or something, not a brace. But, then I am not an orthepedic specialist either.

Sharon

txmarinemom
02-20-2009, 05:25 PM
I definitely know what Carmell's talking about (I was SO off balance from being rotated and straightened).

As her spine is surely more flexible than mine was, it would make sense if the immediate post-op taughtness of the muscles (combined with the inherent urge to fight your new posture) is causing the issue. It could also explain why it appeared so quickly, and how the brace might be used to train her body. It's very promising she can be forced straight, I think ...

I hope so, and I hope it's resolved quickly!

Regards,
Pam

smileyskl
02-20-2009, 05:42 PM
I hope so!:) Now, if only I could convince her that the brace may work. She thinks I am ruining her life asking her to put it back on. She's been crying and fussing about it since the visit. She thinks it won't work because in her eyes it didn't before. I guess I just have to be a meanie mother for now and make her wear it. I do feel sorry for her though:(

Sharon

alwayzsomethin'
02-20-2009, 09:59 PM
Sharon, I'm sorry to hear of your news. I haven't been on in a few days, & just saw your post. I was thinking like most of the others. Katelyn is fresh from surgery, and I know It will take a while for her body to adjust to everything being shifted around. Muscles need to reattach and build back up. Plus the fact we know she is young and very flexible is a definate plus. I can't imagine getting movement that fast. Maybe that's why the dr. is suggesting her brace, just to help get her body used to its new position? Give Katelyn (and yourself),& big hug. I understand your frustration, but try to hang in there! Think positive!!

Tracy

smileyskl
02-20-2009, 10:27 PM
Thanks Tracy,

I hope it works. Anyway, I told her at least it is fixable. Its not like he said there was nothing he could do. We are going one day at a time hopefully to a good correction. Thanks for the support. How are ya'll doing??:)

alwayzsomethin'
02-20-2009, 11:09 PM
Thanks Tracy,

I hope it works. Anyway, I told her at least it is fixable. Its not like he said there was nothing he could do. We are going one day at a time hopefully to a good correction. Thanks for the support. How are ya'll doing??:)

Sharon, you are right, keep it up! I'm sure things will work out.
We're doing pretty good. I haven't posted lately on our progress, its been kinda crazy trying to get into the ritual at home. Kaitlyn came home Wed, 2/18, like the dr. said. Her bowels are finally getting back to normal. We cheered her first formed bm! How crazy is that:p. I told her I was gonna take a picture of it:D. But it was another step for her in feeling better. I still can't get over how amazing these kids are. She is getting back to her old self again, so that is another good sign! You guys hang in there, and thanks for the support, here. Tracy

btw I didn't take a picture!, Just wanted to clarify that:cool:

smileyskl
02-20-2009, 11:17 PM
That's funny! I am glad ya'll are doing okay. Its kind of like having a baby again for a short while. I haven't helped Katelyn in the shower for several years. She said "I feel like a toddler" but she is pretty much doing whatever she wants now. She is still not allowed to go shopping yet and thats her goal:) Did you daughter get taller?

Snoopy
02-21-2009, 07:42 AM
Her bowels are finally getting back to normal. We cheered her first formed bm! How crazy is that:p. I told her I was gonna take a picture of it:D.

Why didn't you take a picture of it? Kate (from the TV show John & Kate plus 8) always took a picture of the first BM in the potty when she was potty training her sextuplets! :D

Mary Lou

smileyskl
02-21-2009, 10:01 AM
Why didn't you take a picture of it? Kate (from the TV show John & Kate plus 8) always took a picture of the first BM in the potty when she was potty training her sextuplets! :D

Mary Lou

You are sooo funny:D but really, we always made a HUGE deal when ours was potty training. No pictures though.:D I guess you would do anything if you were training six at once.

Sharon

alwayzsomethin'
02-21-2009, 10:55 AM
Mary Lou, We talked about Jon & Kate, also taking her pictures:D. Dad wasn't home at the time, but we saved it & didn't flush til he got home to show him her surprise!!! Tracy

Snoopy
02-21-2009, 02:44 PM
This conversation just goes to show the extent we moms will go to for our kids! After the huge surgery these kids have gone through, they deserve the royal treatment. :D

Keep your sense of humor. There will be days where you either laugh or cry-I prefer to laugh.

Mary Lou

emma12
03-03-2009, 10:53 AM
Hi, I'm glad to read your daughter went through surgery successfully, but sorry to hear things aren't quite what you'd hoped for with her back. I haven't been reading forum regularly lately, have had my own bout with some surgeries--but, my daughter is one of the past "cases" you may have referenced about a lean.

She had curves of T61 and L53 prior to surgery 1 1/2 yrs ago--she was 11 at the time, about risser 0 (I think?) She was fused T2-T11, because the lumbar curve was thought to be compensating. Immediately after surgery, she leaned considerably to the left (which she had never done before). We were told to wait and watch during recovery 1st 6 months, and, it did get much better, but not as much as it should have.

She has a trunk shift, we've now had a few opinions, which vary greatly as to what to do. It seemed stable up until our last appt last week, where it seems to be slightly greater than it had been. It is difficult to measure, but when they try they seem to come up with about 38 degrees, however, its not really a curve.

She was offered a brace, but, we didn't have much compliance in the first place, so didn't go that route after surgery. We tried pt, which didn't seem to matter much, but, again, getting her to do the exercises properly and regularly was a struggle. She did competitive swimming the last 6 months, and it appeared to make an improvement, however, after stopping that for 2 months, the xrays didn't confirm any.

We are now trying a lift in one shoe, as it has always been noticed that if she bends right knee, she appears to stand straight. Have had many drs look for leg length discrepancy--there is none, it is her hip that is off now after the surgery, not a true leg length issue. Hopefully, this lift will force muscles to pull spine in the other direction--next appt they are going to take an xray with the lift on to see if it truly is making a difference, the appearance is quite noticeable from the outside.

Anyway, we are still waiting and watching for another 6 months--praying and hoping this will begin to work itself out. I hope for the best with your daughter, it is disappointing to not get the results you had hoped for after this kind of a surgery. Doctors have many good reasons for doing selective fusions (rather than fusing further down than they have to), sometimes some bodies just don't do what you would expect them to.

smileyskl
03-03-2009, 02:33 PM
Emma

Thanks for taking the time to share your daughters story with me. It sounds very similar to what we are experiencing and it helps to know we are not the only ones with this outcome. We just went back to the doctor yesterday (3 weeks post-op) and he sent us to the brace man to have the brace re-padded. She has been instructed to wear it again for 23 hours/day:( She doesn't like this but she is being compliant since he said that it should fix within 2 to 4 months. There are of course no gauantees and there could be an extension surgery in the future, but not until she is finished growing. I truly believe that he thought he was making the best decision not to go any further down at the time probably based on prior surgeries but like you said, sometimes bodies don't do what you think they will. He also mentioned that she had a good bit of rotation which I did not know beforehand. I have noticed a little improvement over the last week, and of course, with the brace she is perfectly straight. We are hoping and praying that the brace will work. If the brace doesn't work, then I am sure we will probably be doing PT and who knows what else. Please keep me updated on your daughters progress and what works or doesn't work and I will do the same. It is so good to be able to compare treatments and get new ideas through this forum.. Thanks again and best of luck to you and your daughter.:) :)

Sharon

cyndawn
03-03-2009, 06:33 PM
:eek: Did any of your kids have to wear a brace after surgery??? and did it work??? Thanks.

Sharon

Wow... what a difference 25 years makes. After my surgury I was in a cast for 6 months then a brace for 6 more... My hips were throw out after my sugery... my cervical spine curved too... the spine needs a slight s-curve... and because of my rod, the thorasic couldn't, so the rest did.

Did they fuse? place any rods?

Cynthia

smileyskl
03-03-2009, 09:58 PM
She has two titanium rods from t1-t12. Her problem now is trunk shifting. I guess 25 years does make a big difference. I will remind her of that. :)

Sharon

OliviasMom
03-08-2009, 01:24 PM
I am sorry to hear of Katelyn's news. It's very disappointing. My daughter is in a similar situation. About five months after surgery (T5-T12), her trunk began to shift. Not dramatically, but enough to warrant concern. She is in a brace now and we are hoping for the best--that it will hold the curve until she is done growing. I hope that is the case for Katelyn, too.

smileyskl
03-09-2009, 12:09 AM
Hi Olivias mom,

I am sorry to hear that your daughter is having the same problem. My daughter had not heard of anyone with this situation and having to wear the brace again so its good to know she's not the only one. I will say that Katelyns back already seems to look better when she takes the brace off. She wears it 23 hours each day. The brace man was able to make it much more comfortable than before surgery by trimming off the part that sticks under the arm. Anyway, we hope it works. Her doctor did say this should be a correction, not just a temporary hold. There is, of course, no gaurantee. I hope things go well for ya'll. Let us know how things are progressing or not. Thanks for sharing your story with me.

Sharon

alwayzsomethin'
03-10-2009, 10:39 PM
Sharon, I just noticed you were on right now. How is Katelyn doing? Is she more accepting of the brace? Did she go back to school? Tracy

smileyskl
03-10-2009, 11:07 PM
Tracy,

Yes, she is more accepting of the brace since the brace man made it a bit more comfortable and also after her doctor explained to her that this could actually correct (not just stop) this new problem. Her doctor seems to think it may work within 2-4 months and we do seem to notice some improvement:) I just hope it holds.

Katelyn is homeschooled so she has pretty much been back in school since she got home from the hospital. I bet it is tough to go back after being home for a while. Going half days should help. Thanks for asking. I am glad to hear you all are doing well. Keep me posted on the progress:)

Sharon

nate03
03-11-2009, 06:19 AM
Hi,

My son developed a significant trunk shift after VBS. He went back into a TLSO full time for about 8 months, and it helped significantly. We were told that bracing is MUCH more effective when it comes to correcting a trunk shift. We had been told it would take about 4-6 months, and it did take a little longer - but we are VERY happy that it worked. This correction has made a huge difference in the way his back looks.

-Cara

PS There is more discussion about this topic here:

http://www.scoliosis.org/forum/showthread.php?t=7677&referrerid=14421