spinecor

[jillw]

Hi Laura, thanks for keeping us updated. I wish your news was better, but as you point out, it's not the end of the world, either. How is her cervical curve looking - I know that had been a concern or yours at the last interim visit? I wonder if the adjustments they made to address that cervical issue gave up some of the correction with the primary curve - which would be a fair trade off in my opinion. Did her rotation go up from the previous visit (hadn't it gone down at the previous visit)? How does Immy feel about trying to wear the brace more after having a bit of a "holiday" from full time wear. At least she had some more out of brace time during the summer-that's the hardest time for bracing, isn't it? Also, curious, had she grown more than usual between visits...I guess she's at that age... I have a lot of questions don't I?

Well, good luck with the compliance!

[Pooka1]

Hi Laura,

I agree you might still dodge the surgery bullet... still low enough.

Do you have Risser or other bone maturity indicator?

Willow has an appointment next month and I expect to hear she is done growing but we will see.

[christine2]

Hi Laura

I wish you had better news. We have been less compliant as well, both due to the weather and also my daughter has a pretty good skin irritation on her upper thighs. She torrorates the heat pretty good although we have had a mid summer so far. once Fall comes you can go like gang buster with compliance

Bodysuit issues
anybody come up with anything new?????

Her bodysuit keeps riding up so the brace is acutally touching her skin. I have kept her out of brace at night a few times. The bodysuit issues are ticking me off. We are going to try Med size, she is now in smalls. We tried the boxer legged spincor suits but my daughter does not like them.

I have tryed to have some suits custom made but my daughter does not like them. She only likes the spinecor suits but I don't.

[RugbyLaura]

Jill - The cervical curve actually turns out to be a very high thoracic curve. Her consultant is not concerned by it at all - said that, IF surgery becomes necessary, he could deal with it usiing "a couple of implants" I shall investigate this further IF the time comes.

I wonder if the adjustments they made to address that cervical issue gave up some of the correction with the primary curve - which would be a fair trade off in my opinion.

Spot on! Exactly what was said by both Mr Mills and the consultant.

Rotation holding at 10 - 12 degrees. Top & bottom rotation had disappeared (probably due to above). Consultant called her rotation minor, which I debated with him. However, he said that as I'm her mum, he'd expect me to feel that way but that really she is doing very well rotation-wise and that many children would be happy to be at her level AFTER surgery.

Re growth - she has grown about 3cm in 3 months and is in the middle of peak velocity. He expects her to grow another 4 inches or so (sorry for mixing units of measurment, we Brits - particularly those of a certain age - are fairly schizophrenic when it comes to metric/imperial). She has grown about 6 inches since she went into Spinecor, so we're over half way there...

He anticipates a further growth of 1.2cm in the region of the spine that he's interested in; we need to hold our breath for the next year or so.

She has LOVED the brace holiday!! Has been doing a lot of sailing and wearing skimpy clothes, but does understand that this must now be reined in - I guess we'll have to invest in a drysuit.

Sharon, no maturity measures at all, he just eyeballed her, me and her dad & said, "Nearly there"! I'm happy with this, and with him in general.

Fingers crossed for Willow.


Christine, Immi has one of the new bodysuits with legs, but she doesn't like it because of the gaps in the inner thigh area. She wears ordinary Spinecor suits with very stretchy short style underpants over the top. She is still wearing Xsmall and they are now very snug! (she's a very skinny 4'9") He didn't have any mediums in his bag so we took the legged one - but we won't be getting any more.

Nice to catch up!

Laura x

[emarismom]

Laura,

Well it seems that things are going well enough, though not as good as we would all like to see. So glad to hear about the cervical spine not really being an issue as I know that you have been very concerned about it. Also glad that Immy has been pretty stable even with her "brace vacation".
She must be thrilled!!

Christine,

Emily uses long tight fitting t-shirts that go under the leg straps. This has helped keep her from getting rashes. No part of the brace actually touches her skin directly except maybe the crouch straps. I have been buying them recently in Old Navy.

At our last consult we did try on the new biker short type of brace bottom to hopefully get rid of all of the straps, but Emily did not like it at all. She did not like the material or the way it felt on her. So we too have stayed with the older pelvic piece.

This week we will again be leaving on vacation so Emily will again be given some extra time out of brace. Once school starts things will get back to normal will get back on track.

[mamamax]

Hi Laura


Bodysuit issues
anybody come up with anything new?????

Her bodysuit keeps riding up so the brace is acutally touching her skin. I have kept her out of brace at night a few times. The bodysuit issues are ticking me off. We are going to try Med size, she is now in smalls. We tried the boxer legged spincor suits but my daughter does not like them.

I have tryed to have some suits custom made but my daughter does not like them. She only likes the spinecor suits but I don't.

Hi Christine - I have used boy cut bathing suit bottoms - worn under the bodysuit (both the short and long ones) and that seems to work very well. I've tried other body suits but like the Spinecor best. Congrats again on your great results!

[christine2]

Hi everyone. I had a little x tra time today so I thought I would try to post some x rays.

[RugbyLaura]

Wow! They look GREAT!! Thanks for posting.

xx

[jillw]

Just got back from Montreal and the news was good. In brace curve is holding (actually improved slightly) at 1 degree on top and 2 degrees on the bottom. Her rotation was down a degree also (which is considered the same rotation, but i'd prefer for the "same rotation" to be one degree less rather than one degree more). So glad that's behind us, I get to nervous when the visits approach.

Christine, those xrays look great! Nothing new on the bodysuit front that i'm aware of...i meant to check if bodysuits.com ever did create the bodysuits in children's sizes. they said they were going to a while back, but when i checked back in the time frame stated, i didn';t see anything online. i either emailed or left a message, but didn't hear back and haven't followed up. katie dislikes the spinecor boy short style also because of the big gap so we still use the original. unfortunately the original aren't wide enough on the bottom to reach between her crotch straps and her skin so she has perma-irritation there.

[christine2]

Awesome news Jill!!! Congrats, now you can relax for a bit.

Bodysuit.com did make a kids size suit but it has elastic legs, NOT Good. We are going to try a med size and see if that works.

Our next appt is in October. We are heading down to Washington DC for vaca, I hope the weather cools for us otherwise my daughter will have some x tra out of brace time.

[leahdragonfly]

Hi Jill,

Congratulations on the great news! I know you're thrilled. Yes, as Christine wrote, now you can relax for a few months. Do you go back in 5 months?

Leah's next x-ray is in a couple of weeks. Fingers crossed...

[jillw]

Christine, We're (probably) going to DC also! Katie's class learned about DC this year so we thought we'd pop down for a few days so she could see it while still in her memory. I hadn't thought about it - you're right, DC will be hot in august!

Gayle, Good luck in a few weeks! Hoping for continued stability or even improvement for Leah! We actually go back in 6 months this time (don't know if that's specific to us or if they have changed their protocol???)

Jill

[mariaf]

Great news, Jill!! I'm so happy for you!!

[pat]

follow-up appt went well

almost 4 years in, and our appointment shows she's at a 12 in brace, riser 1, gained a couple inches in the last year, over 5'8" . . . . think we see an end in site, but a pretty critical year coming up now, and she is so tired of the brace, hope we can keep her compliant. Drs. Rivard and Colliard are very pleased, so far, so good.

[jillw]

Pat, how wonderful that she's holding steady in the brace. If I recall she had gotten her period earlier this year so I'm guessing the rate of growth will slowing down now? Wow, it's exciting to see someone on these boards who really is seeing the light at the end of the tunnel. I forget (or maybe I never knew), but how large were her curves prior to bracing?

Thanks for the update!