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mamandcrm
04-06-2010, 12:44 PM
My daughter, now 8 , just had a follow-up OOB x-ray. Her curve (thoracic) which had reached 35* is now 11* OOB. The x-ray was taken after more than 48 hours out of brace, and measured by her pediatric orthopedic surgeon, as all her prior x-rays have been. She has worn the Rigo-Cheneau full time for about 15 months. She will now wear it 12 hours a day (overnight hours). We are so happy to have been able to reset the clock on her scoliosis. If you have any questions about our experience with the Rigo-Cheneau brace, please PM.

tonibunny
04-06-2010, 01:29 PM
That's fantastic! Congrats to you both :)

michael1960
04-06-2010, 08:29 PM
Congratulations

Your story continues to be my inspiration to move on to the Rigo-Cheneau brace sooner than later. We are in the SpineCor and Boston brace right now but a day does not pass that I think we should be in the RC brace.

You may have posted it in the past but how much correction did you get in the brace, especially when she was at 35?

Syd reached 36 and we went into the SpineCor brace and got down to about 22 degrees in the brace (last October 2009). In January 2010 of this year she was about 30 degrees out of brace and down to 18 degrees in the brace.

Most recently (March) she was about 28-30 degrees out of brace and 13 degrees in brace (with Boston brace).

I had read someplace that the amount of out of brace correction is directly dependent to the amount of in-brace correction (and other factors like compliance). So I was wondering how much correction you were able to get along the way with the brace.

Thanks
Michael

mamandcrm
04-07-2010, 08:28 AM
Hi Michael,

G's in-brace correction when she was at 35* was to 3*. She had an in-brace x-ray at that time when she was moving into the full-time brace, but has not had one since as neither her doctor nor orthotist feels it is necessary given her history of excellent in-brace correction. She also has been fully compliant with the brace, with normal exceptions for certain events, and has found it comfortable to wear, which I'm pretty sure is a big part of her acceptance of it.

Chris

michael1960
04-07-2010, 09:12 AM
Thanks Chris

That is a great in-brace correction. I think that it is so important for the brace (or some other treatment) to take the spine as close to 0 degrees as possible or maybe even over correction.

This is why I am so interested in the Rigo-Cheneau brace, the amount of in-brace correction. Syd is getting 30 down to 13 in the Boston brace (maybe a little better as I begin to tighten it more). On one of the websites for the RC brace it shows a girl, maybe 9-11 yrs. old being corrected from 34 degrees to -9 degrees in the brace.

We got into the Boston brace because we were at Shriners Hospital to discuss VBS. They wanted to see Syd down to 25-30 degrees to consider her for "stapling only" versus "stapling and a growing rod". The doctor there suggested the Boston brace (he was not familiar with the RC brace). And there was no charge for it so we decided to try it.

It would be awesome to have Syd down to 3 degrees in a brace. Did you have yours fitted with Luke? I am sure we discussed this before. I talked to Luke a couple months ago.

Also, when you are getting cobb angle measurements, do they always measure the worse curve or measure from the same vertebrae each time. I have heard of two different approaches, and maybe both need to be done.

For example, with Syd her initial largest curve was 36 T4-T12 (and T5-T12). That curve today, about 5 months later with SpineCor and some chiropractic treatment, is now only 23 degrees (out of brace).

However, the T5-T9 curve has increased from about 25-28. So, her worse curve is now about 28 but it is between T5-T9. So, when comparing worse curves she has gone down from 36 to 28. But when comparing same vertebrae measurements of her worse starting curve she has gone down from 36 to 23. I would very much value your thoughts on that.

Thank you so much for sharing what you have done and the results. I have been thinking about the RC brace for some time now. Had we not gotten the free Boston brace we may be in it already. After we spent a lot of money (no insurance help) in treatment and travel between Nov 2009 and Mar 2010 a free brace was welcomed!

I will probably wait and see our first out of brace measurement with the Boston brace (June or July) and then consider moving forward with the RC brace and being much more aggressive. It is results like yours that give me hope that I can keep Syd out of surgery, if nothing else, for a few more years. The longer we can wait, the more she grows, and the more time for new minimal invasive surgical techniques to be developed and proven.

One last question, did you see much improvement in rotation (rib hump) with the RC brace. While the Boston brace can work on derotation, it seems the RC brace design may emphasize more derotation. Also, sorry for all the questions, is yours an Rigo-Cheneau brace or Cheneau brace? I read someplace they are different.

Thanks Again

Michael

jillw
04-07-2010, 09:30 AM
Wonderful News! and thanks for posting your update. I find it very interesting to hear about children's results over time in various types of bracing.

Congratulations on the part time bracing also!!!! When will she get her next xray?

mamandcrm
04-07-2010, 11:58 AM
Thanks all for your kind congratulations.

Jill, she will get her next x-ray in 6 months. I'll be drinking a lot of pina coladas this summer while biting my nails.

Michael, I will send you a PM shortly.

jillw
04-07-2010, 10:25 PM
Even better that her reduced brace wearing time is just in time for summer! Good luck!

mamandcrm
04-09-2010, 04:31 PM
It's 49 degrees here right now and she's running around in a halter top (which she plans on wearing out tonight!)...because she can...I love it...I love this brace!

mamandcrm
06-17-2010, 04:17 PM
I've been meaning to post these x-rays for a while for anyone who is interested. I don't have a copy of the one from when G was 35*. The 2009 x-ray here is a later one from when she was 27*, about 4 months after she started wearing the Rigo-Cheneau. The 2010 is the most recent x-ray from April--11*. I had a hard time re-sizing these to be within the limits so hopefully this works. [This is a duplicate of my last post. I deleted and reposted because I needed to reattach the x-rays and couldn't figure out how to do that in the original].

Bigbluefrog
09-08-2010, 10:30 AM
Great results I am happy for you, hope this means less brace time?

We looked into the cheneau brace and met with the orthotist and he stated my dd curve would likely progress regardless of chaneau brace...so I decided to go with Boston brace. We will see what happens in Dec. xrays

I haven't been online much....busy with family stuff...ykwIM
Besides the Boston brace, she does a 1/2 hr of PT each day, and massage therapy, and chiropractor care. Honestly I feel the PT is the best therapy using schroth and 2nd is the massage, her massage therapist releases muscle tension..which help her feel better. She wears the brace about 18 hours a day, It irritates her skin so breaks are needed.

Anyway ...just want to say Congrats!

mamandcrm
10-05-2010, 02:09 PM
After 6 months of reduced brace time (23 hours to 12 hours), and significant growth, G's curve remains at 11 degrees out of brace. Her history is posted below in my signature.

Pooka1
10-05-2010, 02:40 PM
That's great news!

I wish there was much more study on bracing in JIS. It might have a better track record than in AIS.

Maybe it is even like IIS where there is a benign type (the most common type IIRC) that responds to conservative treatment and a type that doesn't.

jillw
10-05-2010, 03:46 PM
How wonderful that her curve is holding at a mere 11 degrees even after 6 months of overnight only!!! Thanks for the update. Please keep us in the loop as you have future appointments. (how much has she grown in the past 6 months)?

mamandcrm
10-05-2010, 04:18 PM
Hi Jill, she grew an 1 1/2 inches in the last six months. Next update for her may not be for a year. At her next 6 month appointment, she currently just is scheduled for a clinical exam. We'll do an x-ray at that time only if it looks like there has been significant change.

mamandcrm
04-07-2011, 06:41 PM
Had the next 6 month interval check-up, clinical exam only. No observable change, so no x-ray. (FYI, the clinical exam first, x-ray only if doctor deems necessary is not standard protocal but at our request.) Next appointment in 6 months. Will have an x-ray at that time. So after a full year of reduced bracewear, things still look good. We go on.

leahdragonfly
04-07-2011, 09:01 PM
Hi Chris,

This is wonderful news, and I am so glad to hear G can continue with the reduced wear. I am sure she is thrilled! And good job on minimizing the x-ray exposure.

Leah will be one year post-op VBS in May, so hopefully we will have some good news to report as well.

Take care,

Gayle

Ballet Mom
04-08-2011, 10:42 AM
Great news mamandcrm! :-)

jillw
04-10-2011, 11:06 AM
Good news mamandcrm!

Gayle, I look forward to your post in May which should have more good news!

mamandcrm
04-10-2011, 01:52 PM
Hi Jill, Gayle, and Ballet Mom, thanks.

Jill, how is your daughter doing? Is she 11 now? Gayle, I look forward to hearing about Leah's recheck! It seems like we are all starting to get to the scary age when they really start growing and all heck can break loose (and I suppose there are other reasons it's the scary age too :eek:;) )

MJB
04-11-2011, 12:45 AM
That is so great!!! I wish that Halle did as well with the Cheneau Brace.

Resilience
04-11-2011, 11:40 PM
Congratulations mamandcrm and G!

mamandcrm
10-04-2011, 12:45 PM
Hi All. G just had a new x-ray (it's been a year), and her curve is measuring at 10*. She has continued to wear the Rigo-Cheneau brace 10-12 hours a night. I don't keep close track of her height but she grew over an inch just in the last 3 months. She'll have a clinical exam again in 6 months, and we'll only do an x-ray then if it looks like there is change. She is so straight now, it would be easy to see. :)

Pooka1
10-04-2011, 01:55 PM
Wow that is great news! Fabulous.

JIS certainly appears to respond to bracing. That's what Dr. Hey said in the one blog entry. I wish they would study that more to rule out spontaneous improvement. I wonder if anyone has ever seen a 35* JIS curve spontaneously improve. If not then the brace was effective.

Congratulations.

leahdragonfly
10-04-2011, 07:35 PM
Hi Chris,

Congratulations on more wonderful news! I am sure you are all thrilled.

Leah will turn 10 in January and she has been growing like crazy the last 6 months (2-3 inches during that time). So far, so good...her next x-ray is May 2012.

Thanks for sharing the good news,

jillw
10-04-2011, 07:38 PM
Wonderful news! Thanks for sharing.

Resilience
10-04-2011, 10:48 PM
Such wonderful news! So happy for you and your daughter!

mamandcrm
10-06-2011, 09:43 AM
Thanks, all. I feel like she now has made it safely through the growing rods minefield, and we go on now to adolesence and whatever that will bring. Our next hope is to get her safely to maturity without needing any surgery or full-time bracing. She has been a star throughout this whole process. It has been so valuable to me to be able to have this time where the pressure and worry has lifted, to be able to educate myself without the panic I felt at the beginning over 3 years ago.

TAMZTOM
11-18-2011, 04:59 PM
Thanks, all. I feel like she now has made it safely through the growing rods minefield, and we go on now to adolesence and whatever that will bring. Our next hope is to get her safely to maturity without needing any surgery or full-time bracing. She has been a star throughout this whole process. It has been so valuable to me to be able to have this time where the pressure and worry has lifted, to be able to educate myself without the panic I felt at the beginning over 3 years ago.

I feel your deserved pride, your daughter is a star. Inspiring. Thanks for sharing.

mamandcrm
06-13-2014, 10:34 AM
For those of you who are are in the early onset JIS world, my daughter is almost 13 and while she is not at maturity yet, it appears bracing has been a success for her. Her 35* curve at age 7 has held under 15* out of brace for almost 6 years, with one 16-month stint of full-time bracing at age 7-8, and the remaining years night-time only. She is now post-menarchal, has shot up significantly in the last year, and in her doctors opinion probably through her most intense period of growth, and on her last brace (which we just picked up). Bracing has always been OK for her, not presenting any physical or emotional problems. So that's the report, and I won't appear again except to modify my signature when she is done with her treatment.

leahdragonfly
06-14-2014, 10:32 AM
Hi mamandcrm,

I have thought of you and G many times over the last several years. She and Leah are really very similar in age as I recall, and both were diagnosed at a similar age. I am thrilled to hear how well G is doing. You and she are so very lucky that she tolerates bracing so well. Great news all around.

Leah is 12.5 years old now, and also post-menarchal. She is now 4 years post-VBS and her thoracic curve (which measured 30 at age 8) has been holding steady in the mid-teens since her surgery. Her last measurement in May was 14 degrees. A very different path from G, but how wonderful that they both have achieved a great result as they approach the end of their growth.

I know you decided to leave the forum several years ago, and you mention in your post that you will not post again, but I am glad that you are able to share G's results over time. As you know early onset scoliosis/JIS is a very lonely road for parents, and there are just not a lot of these young kids out there struggling with scoliosis from such a young age. It has been invaluable for me to connect with other parents in a similar situation. I am really glad you decided to post an update.

Take care,

Pooka1
06-15-2014, 07:59 AM
A very different path from G, but how wonderful that they both have achieved a great result as they approach the end of their growth.

Both these testimonials ahould give hope for parents of kids with JIS. It's so important that other parents know this given how relatively rare JIS is compared to AIS as Gayle stated.