spinecor

[jillw]

Gerbo, Sigh, I know you had been worrying that there had been progression and I am very sorry to hear that it was confirmed. I'm glad her nightmares have gone away, but feel bad that she has been having them at all...has she had them every since she started wearing a brace? (My daughter, interestingly, started sleeping with a nightlight again about a week after she got her brace and I can't help but think the two are related). So if I'm interpreting correctly, Lisanna's primary curve was a lumbar curve and her secondary curve's apex is at T4? I hope that given Lisanna's age she never progresses to 50 degrees.

[stephanieC]

Gerbo,

I am so sorry to hear that Lisanna has progressed. Guilt is a tough emotion to carry around for a long period of time. Let go of yours. You are a great dad who has done everything a parent should do for their child.

Let Lisanna enjoy being brace free right now. Enjoy it with her!! She does not feel the burden of a possible future surgery the way you do. Kids are lucky that way.

Hugs to you.
Stephanie

[stephanieC]

Cheryl,

I am glad your daughter is comfortable in her new brace. What is the cheneau brace?? Is it for larger curves?

Stephanie

[cherylplinder]

The Cheneau is a brace that is popular in Europe. It is similar to the Boston, but different enough to help curves that are often not helped by the Boston. It is a custom TLSO with pressure achieved by indentations in the brace at the level of the curves. There are negative pressure areas to allow for curve movement in the desired direction. It also corrects rotation. It is useful for small and large degree curves.
Luke Stikeleather is a master orthotist and in some cases achieves permanent correction even of large curves. He says he wishes he had gotten his hands on Rachel a couple of years ago. At this point, I do too. He said that when her curve was 17 degrees at 7 years of age, he would have braced her. Our ortho refused. This is an amazing brace. I'll bet it would have worked. I also think the Spinecor would have corrected her then. Her curve was very gentle, i.e. not sharp, then.
Ann, one of his staff, told me that she brought her 12 year old to him with a 45 degree curve that he permanently corrected to the low to mid 30's by the age of 15. Every shred of hope helps.

[mpj]

Back from Canada

Hello all,

We just arrived back from Canada. Another good trip. Snowed the entire time! Madeline's curve is at 3 degrees. We started around 24, at our last appointment it was about 5. She looks straighter each visit. We have been using Spinecor for a little over a year. Dr. Rivard said that things will probably stay about the same until she starts her big growth spurt. She is 91/2. So we will just sit tight and keep our fingers crossed.



Gerbo,

Sorry to hear that you have not had the news you hoped for. As my mom says "Let's not worry until we absolutely have to." Hard advice to follow!Hoping you can avoid surgery, but knowing you will get through whatever lands in your lap.

Take Care.

Sarah

[emarismom]

mpj,

It's great to get some good news around here!! You must be thrilled!!

Michelle

[cherylplinder]

Sarah,

I am so thrilled. We have been on this forum for a long time. When Rachel progressed, I wondered how many people I had influenced with Rachel's initial results, to make this decision. The first year Rachel's response was great!

And if I had changed courses in July to the Cheneau/Schroth, I would have done much better.

Madeline was one I thought of. I remembered that we corresponded by e-mail at first. That makes me feel better.

Hurrah!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am more than happy for you!

Cheryl

[cherylplinder]

The Cheneau is a brace that is popular in Europe. It is similar to the Boston, but different enough to help curves that are often not helped by the Boston. It is a custom TLSO with pressure achieved by indentations in the brace at the level of the curves. There are negative pressure areas to allow for curve movement in the desired direction. It also corrects rotation. It is useful for small and large degree curves.
Luke Stikeleather is a master orthotist and in some cases achieves permanent correction even of large curves. He says he wishes he had gotten his hands on Rachel a couple of years ago. At this point, I do too. He also said that when her curve was 17 degrees at 7 years of age, he would have braced her. Our ortho refused. This is an amazing brace. I'll bet it would have worked. I also think the Spinecor would have corrected her then. Her curve was very gentle, i.e. not sharp, then.
Ann, one of his staff, told me that she brought her 12 year old to him with a 45 degree curve that he permanently corrected to the low to mid 30's by the age of 15. Every shred of hope helps.
__________________

[AILEA]

I am so thrilled. We have been on this forum for a long time. When Rachel progressed, I wondered how many people I had influenced with Rachel's initial results, to make this decision. The first year Rachel's response was great!

That is what I’ve been feeling, We too had good results at first with the spinecor, and I’ve been concerned about the fact that someone has made their decisions because of our first results; Perhaps I was too optimist, thinking spinecor was like a little “miracle-brace”, and well, in fact there are no miracles, and nobody knows what is going to happen with some curves….
So, I’m very thrilled for all of you who are having good appointments, and I’m looking forward to hear from all you… Congrats Sarah!

[mpj]

Change of Plans

Hi Cheryl,

Thanks for the info. on the new brace. Don't feel bad about influencing us. We still work with our orthopedic in Madison and our primary care doctor as well.

Thanks for the good thoughts.

Sarah

[mpj]

How far into treatment did progression begin?

Aliea and Cheryl,

How long after using SpineCor did progression begin for your kids? Was it gradual or fast? How old were they? I have a hard time keeping track of everyone.

Since our orthopedic in town has thought we should just watch and wait for now, we thought that we would try SpineCor in the mean time. We would switch to more conventional bracing if needed. Hopefully we won't have to though

Sarah

[stephanieC]

Thanks Cheryl,

I wish Rachel much success in the cheneau.

I know what you mean about influencing other parents. But all we are doing is sharing our stories and journeys with eachother. At this point with my daughter, who just had VBS surgery and is doing great, I pray and do believe the stapling will hold. But we all know that the "growth spurts" are the time of testing so to speak. My daughter is 9. I will feel better when she is 16 or so and has stopped growing. Only then do we know if our chosen path or paths have worked. Let's face the truth, some children progress to fusion no matter what we do, or how many things we try. We all pray it won't be our child, but we have all learned that children do well and live beautifully even after a fusion surgery. This we know thanks to other parents who continue to share there journey with us even after there original hopes were crushed.

Parents make there own decisions about their child's care. We simply let others know their options and what we are all doing. Look at how many different paths we have all taken. New parents have full access to all our paths, then they choose.

We are all doing the best we can for our own child and simply sharing the journey.

Stephanie

[jillw]

Sarah, Yay! I'm glad to hear your good news. We are like you, we were told to watch and wait so are trying spinecor in the meantime.


But many thanks to all of you who have posted with your initial good results because they DID influence us and I am glad it did! (otherwise we'd probably just be waiting now). And thank you for continuing to post so we can get information that helps us make decisions in the future as well. From the beginning I've had it in my mind that we might need to try something else when (or slightly before if we could time it) she's getting ready for the big growth spurt. Maybe spinecor usually works well for those who start it with small curves, or maybe it only works well for a year or two, but either way it is a good thing, in my opinion, because the quality of life during that time period it does work is so much better. So please don't feel bad about any of your postings. I am in all of yours debt from the help I have received!


I would LOVE it if spinecor could take my daughter through her whole treatment period, but I know the odds are not on her side.

[jillw]

Cheryl, How does the cheauneux (spelling it wrong but too lazy to go back and look!) fit under the clothes compared to a boston brace?

[stephanieC]

Hi Jill,

I remember speaking with Dr Rivard on the phone and he seemed very positive that curves under 30 degrees are held very well with the spine cor. If Katie's compliance with wearing the spine cor are good and she wears it through her coming growth spurts, over the next 6 years, it is my understanding that your daughter would fall into the "best" category as far as likely success. Her spine is currenty being held very straight as she grows and strengthens. This is the philosophy of the spine cor. I really hope Katie has success and others too!! It would be nice if 6 years from now you and I could be writing about our different paths to SUCCESS for our children. Giving new parents options!!

Stephanie