Dissapointing Visit

[Carmell]

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]

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]

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]

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']

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]

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']

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. I told her I was gonna take a picture of it. 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

[smileyskl]

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]

Her bowels are finally getting back to normal. We cheered her first formed bm! How crazy is that. I told her I was gonna take a picture of it.

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!

Mary Lou

[smileyskl]

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!

Mary Lou

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

Sharon

[alwayzsomethin']

Mary Lou, We talked about Jon & Kate, also taking her pictures. 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]

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.

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

Mary Lou

[emma12]

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]

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]

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