spinecor

[MATJESNIC]

Carly's Mom,

What are your daughter's curves?

Caroline,

Dr. Rivard is right. If the curves start progressing, you will know. Nicole's curves were basically 34 in the brace for about a year. Five months later, it was 48 in the brace. Since she was getting a 10 degree correction up until this point, our biggest fear was that her curve was now 58 without the brace. But thankfully we found out that her curve was now 52 without the brace. (I told you 55, but CHOP measured it at 52. I like that better!!!!)
This means that Nicole went up from 44 to 52 in 5 months and the brace was no longer giving her more than a 4 degree correction.

You will know. Trust them. But I hope you never know of that. It is such a sinking feeling.

Olivia's Mom,

I am thrilled that you finally talked to Dr. Rivard and are seeing him. I wish all of you the best of luck.

[christine2]

Hi Caroline

I was worried about not having out of brace x rays too but it is way too soon for our girls. My thoughts: their muscles need to build to hold the in brace curve. after a couple years of bracing the muscles, spine and posture will be re trained to stay straight (I HOPE, I HOPE!!!) I definately have those days too!!! My kids are having a great time e mailing your daughter. Thank you for including my son.

Amy
I am so glad you got to speak to Dr. Rivard. Isn't he great. I can't believe he called you while on vacation. Well I am not really that surprised he is awesome. I was also surprised in the cost. I was quoted a $ significantly higher elsewhere (we won't open that can of worms). We get the best at a better price. You don't see that much.

Christine

[Celia]

Hey gang,

I'll be silent for the next little while as I'm leaving on Sunday and won't have computer access for close to a month. I'll try to sneak a peek at an internet cafe just to see how you're all doing but that's not guaranteed. I know Cheryl has her followup next week and was asking that I send her a hug. I'll send it now (((((hugs Cheryl))))) Anyway stay strong everyone!

[gerbo]

Anyway stay strong everyone!

do not feel strong at all, as we were not pleased at all at review!!

In january we still had an 18 degree in brace primary curve, with this 28 degree sec curve. To deal with latter some tension was taken of two of the bands, and recently we really, really felt optimistic on how l looked.

the q-scan at the beginning of the appointment appeared to confirm that impression (that it all looked straighter) but x-rays do not lie and whilst the sec curve was similar at 30 degrees, the primary curve had shot up to 25 degrees. OK, l had grown3.8 cm in 6 months, there is always a margin of error, and method of measuring was different (on computer rather than by hand), but both louise and I felt terribly disappointed, the only vaguely positive person being L herself (and the consultant, but he hasn't got a clue what to do anyway)

bit at a loose end now; mr mills is going to get second opinion from dr rivard, so waiting for that.

Now feel very insecure, the stability and control we thought we had is gone and the next 6 months are going to be nerve destroying

The option of including "alternatives" becomes suddenly more attractive (desperate as we feel), but what to go for??? None of them have any evidence of effectiveness behind them, so how do you choose???? Was thinking of talking to a osteopath locally to see whether he can offer a reasonable plausible approach. And it be the end of heavy schoolbags, whether she likes it or not, it will be a roll along little suitcase.

Thought it was better to hold back a bit posting this as i did not want to unnerve anybody going for their checkups today.

[cherylplinder]

Gerbo, I didn't expect that. She's been stable for a long time in brace. I'm so sorry. I was afraid your report wasn't what you expected when you didn't post right away.

[MATJESNIC]

Gerbo,

You know how sorry I am for your disappointment. Any idea if there is still correction going on in-brace? I hope you get the answers you are looking for. We all want the best for your family.

[RugbyLaura]

Thought it was better to hold back a bit posting this as i did not want to unnerve anybody going for their checkups today.

Gerbo, how typically caring of you; putting others first even when you're feeling so low. I'm sorry things are not as you'd hope. I have no practical advice as I'm new to all this, I feel bad about that as you have been so strong for me.

I was not inclined to post, thinking it insensitive, but you have persuaded me, so here goes...

Not the most informative of visits, but very pleasant. Mr Mills does not do xrays at follow up, only at 6 monthly intervals. Inbetween he uses various measurements to give him a picture of what's going on. Only if these look worrying will he ask for xrays. He tightened the brace & said all looks fine. I had a peek at his records & last visit thoracic rotation was 10 out of brace & 7 in, lumber 6 out can't remember in & "shift" (alignment of top & bottom of spine) was 15 for both. This time thoracic was 11 & 8, lumber 3 & 0 and shift 0 & 0. He seemd to thing this was all good news & said that her initial correction was "better than average". The one thing that he found very odd was that she's grown 1.5cm in a month!! He had to re-measure her & said that sort of growth was not possible, particularly in a child of Imogen's stage of growth. He said it must be to do with posture.

Gerbo, what is a q-scan?

Laura

[Celia]

Gerbo,

This is very serious! I would rethink your strategy and perhaps pay a visit to that remarkable orthotist in Germany that many speak of? Another option as it appears she is in the midst of very rapid growth is to put her in a corrective EDF cast ASAP and hopefully get some permanent correction during this period of growth????? I honestly don't know if it's possible to get this with an adolescent but its worth a try At the very least it will prevent further progression during this volatile period. I know Dr. Mehta did this with many of her patients. I believe casting is still very common in France and perhaps even in England to some extent. Once that phase is over perhaps the Spinecor would help. I do recall and I'm sure you remember the study by Weiss which showed that adolescent children going through the period of rapid growth did not fare well with the Spinecor and we all attributed this to the fact that he wasn't properly trained??? Another alternative is to get a consult with drs Coillard and Rivard since they know their brace better than anyone else and would give you an honest prognosis. I really don't want you to go down that too familiar road. It would crush a lot of us!


Laura,

We had an x-ray at our one month followup. It sounds encouraging that her posture has improved if that kind of growth is not common???

[mpj]

Gerbo's News and Swimming

Gerbo,

I am sorry to hear about your appointment. I hope Dr. Rivard and Mr. Mills can come up with a new strategy for your daughter to try.

I too was wondering what a "q-scan" is.

We will keep you in our prayers that your next visit is more reassuring.


Swimming:

Does time swimming in a pool count towards "out of brace time", or is it still considered "in brace time?" With the hot summer, Madeline has been spending a lot of time in the pool, and I am afraid we have exceeded our four hours out of brace several days this summer because of it.

Thanks for the info.

Sarah

[pat]

Gerbo, I read your post, I feel for you. I don't understand this whole scoliosis thing, and I can only think, as I've been told by doctors, that some curves are just pre-determined to do what they're going to do, no matter what you do. Progress or do nothing. And I would still, no matter our outcome, rather have had my child in the Spinecor/soft brace this last year and half.

I've been told swimming is considered "time in brace," if they're truly swimming, doing laps, not playing/standing in the water.

p

[momw/scoli]

Dr. Marco Houston

Hi! I'm new to this forum.
My daughter is getting a boston brace next week and a second opinion with Dr. Marco in Houston to discuss the possibilities of a spinecor in Sept. I found that there was a 45%-49% chance the boston brace would work because my 12 year old daughter has curves of 36l and 38t. Does anyone know the stats of the spinecor? It looks great for kids with curves below 30. What about kids with bigger curves. Is it worth the time and money to travel to Houston? I live in Texas but, a long way from Houston. I'm not a big fan of rigid bracing, but surgery is scary! Is anyone having luck with the Spinecor in Houston?
Thanks,
Becky

[cherylplinder]

I have been pondering the lack of use for casting for adolescents all week, not just after your post, Gerbo. I don't understand.
I am fairly certain that Celia's Dr. Hedden did this with his adolescent patients to get their curves corrected enough for bracing, if I understood her correctly. Does anyone know why this is not common practice in the U.S.?

I was reading your discussion on casting this week, Celia, and once again, found myself wondering about the application to AIS or Juvenile, also.

[MATJESNIC]

Cheryl,

I have often thought about this, as well. Do you think that it is a compliance and psychological issue? Most teens don't want to wear a hard brace because of comfort, looks, clothes not fitting over the brace. We know of some who just can't do it. At least if they do wear it, they know they can take it off for proms, other social parties, special sports activities, etc. With a cast, you can't take it off. So maybe asking a little child to wear it would not have the same affect socially as asking a teen to wear a cast. No showering, no dance classes, no sports, etc. for years. It would probably be thought of as unacceptable for many. Gerbo's daughter is a ballet dancer. From what he has said, she is also a very good dancer. If she were in a brace that she could remove, she could take it off for her classes and performances. No way could she do ballet in a cast. So she would have to give up ballet for the next few years. To teens, a few years seems like an eternity.
I could be wrong about this because I know nothing about casting. Maybe someone else could shed some light.

[RugbyLaura]

Lisanna is an exceptional dancer. For her age one of the best in the country. She has a career in ballet ahead of her if this is what she wants. I hope you won't mind me saying this Gerbo, if you do I will edit it out!

I know that it's very important that all of our children receive the best treatment, but I can understand too why this must hit their family particularly hard. I really don't know much about casting but I imagine that if a short period of time in a cast could guarantee a positive result, we would all jump at it. For such a talented dancer, a short period of time off would not be too detrimental to her prospects - however heartbreaking at the time. But is it an option??

[mariaf]

Cheryl,

I have often thought about this, as well. Do you think that it is a compliance and psychological issue? Most teens don't want to wear a hard brace because of comfort, looks, clothes not fitting over the brace. We know of some who just can't do it. At least if they do wear it, they know they can take it off for proms, other social parties, special sports activities, etc. With a cast, you can't take it off. So maybe asking a little child to wear it would not have the same affect socially as asking a teen to wear a cast. No showering, no dance classes, no sports, etc. for years. It would probably be thought of as unacceptable for many. Gerbo's daughter is a ballet dancer. From what he has said, she is also a very good dancer. If she were in a brace that she could remove, she could take it off for her classes and performances. No way could she do ballet in a cast. So she would have to give up ballet for the next few years. To teens, a few years seems like an eternity.
I could be wrong about this because I know nothing about casting. Maybe someone else could shed some light.

Melissa,

I know nothing about casting either, other than what I have read, but you and I sure have had many discussions regarding teenagers

Having two teens myself, and judging by their attitudes and feelings, as well as that of their friends, I think you are right on the money.

To teens, a few years - or even months - DOES seem like an eternity. My daughter cried because she had to wear braces on her teeth (with the worst thing known to man - rubberbands no less!) to high school. She told me I was ruining her life. OK, she's a drama queen (LOL), but in my years of experience raising teens, I have found that the worst thing - in their minds - is anything that makes them feel different in any way from their peers.

Perhaps parents of younger kids wouldn't know this to be true, but I'm sure that most anyone who has raised teenagers can understand exactly what you are saying.

Once again, I'm thrilled Nicole's MRI was fine and she's in my thoughts and prayers always.

Gerbo,

Your daughter, as well as Nicole, is in my thoughts and prayers. I hope it all turns out better than you are now imagining. As parents, we all worry about the worst case scenario. I know how awful it feels not to get the results you were hoping for and my heart goes out to you.