spinecor

[Celia]

.... we did not get an in brace x-ray in the new tlso. i was quite flabbergasted. -- i will stop here because it's taken years of therapy for me to talk calmly about our first ortho! just kidding, therapy in terms of chocolate (right, celia ) and wine!

Deshea,

I can totally understand your frustration! I didn't know you ate chocolate as well That is too funny! So chocolate is a common coping mechanism for a number of us. LOL!!! They should have a box of chocolates in the clinic room when parents first find out their kids have scoliosis. My main form of escape is to turn the music *really* loud when no one's around... I don't know why but it works for me.



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[gerbo]

when we were still working with a hard brace we had to "fight" to get an inbrace xray and when we eventually got one consultants were not concerned at all about the "only" 25% reduction and no attempt was made to try to improve the correction towards the 50%. My conclusion was that really they were not interested, bothered and didn't have a clue. the frightening thing is, that this seems to be common practice in the UK. What hope scoliosis sufferers for a non surgical solution to their problems!!

[Kalarasy]

my son experience with the haard brace

When I first got the Providnce night brace for my son his thoracic curve was 22 degrees. The doctor took one X-ray with brace on while lying down and his curve was 15 degrees. He said the brace is working very good, we got 7 degrees corection. My son couldndn't wear the brace too long, so we ended up at 31 degrees in one year. When we saw Dr. Rivard he did an x-ray without the brace while lying down and his curve came down to 15 degrees. Now I wonder was the Providence night brace really working? My regular doctoe never did an X-ray without the brace while lying down, even though I asked for it. I went against his recomandations and got the spinecore brace. Sometimes I can't belive myself that the spinecore brace can help so much, but you know I got the x-ray and I can see my son position. So I say thank you God every day for my son's brace. I think it is worth trying it. It is better to choose spinecore than hard braces.
Adriana

[MyBabyGirl]

Great answers..didn't mean to tweek a nerve.

Since you all see Dr. Rivard and you all seem to get similar results (which are outstanding , yet rather unusual in the field of scoli) do you ever wonder/worry if he could be bending (no pun intended) his facts and figures to 'sell' the success of an otherwise new-to-the-field brace? 

I mean, it literally sounds too good to be true! And you know what they say about 'when it sounds too good to be true...it probably IS.' Why isn't absolutely every doctor prescribing this brace if it consistently gets these wonderful results? Why does anyone have to endure the other kinds out there.....? 

I realized, as I posted that question, that it might seem like I was trying to insight a riot. But on a blog, there just doesn't seem to be many options to show my true curiosity about what your (the collective 'your') experiences have been...your thought processes are and continue to be....etc.

This fact-finding mission (read: roller coaster) I have newly found myself on would be alot easier over coffee, donuts and large box of kleenex. But I don't get that option!

I find myself the mother of the only girl in her entire middle school who is about to put on a scoli brace and wear it 22 hours a-day for the next 3-5 years. I also find myself hunting, madly, through the internet for any tiny crumb of information I can possibly get to educate myself about this subject that I have found I know NOTHING about. All the while being strong and 'we'll get through this' in front of my daughter, her brother and even her father.

So, please bear with me as I try to ask questions that I cannot find answers to anywhere else. I don't mean the questions to sound skeptical at all; I am just trying to find out, quickly, what you all have had to work out over time. I am afraid of to spend years going down a wrong path only to arrive in a position where we have run out of options.

I know that we could wait too long and then stapling (if we chose it) would be taken off the table because she is done growing. That scares the you-know-what out of me.

Anyway...way too long here. But please hang in there with me...you little tiny people in this little box, called my computer, are all I have right now!!!

MBG

[desheah]

mbg,

no tweaked nerve here! please ask questions. we were all in your place once and realize the emotional roller coaster especially at first (and at every appointment). we're all here to help one another and hopefully, learn what we don't always get from appts.

deshea

[mariaf]

mbg,

No tweaked nerves here either. Please don't be afraid to ask questions. One of the reasons we are here is to share our experiences in the hope that we can help someone else.

good luck,

[Snoopy]

MBG,

No offense, but are you sure your daughter is the only one in her middle school who wears a brace? I too thought my daughter was the "only one" when she was prescribed a brace. Funny things is, once she started talking about it, we found more and more kids who were in braces, one of which lived in our own neighborhood! Again when we found out she needed surgery, we thought she was the only one...not true. Another young lady had the same surgery a year or two earlier and a boy in her class had it done about 9 months before Jamie and just never knew.

I know this is an amazingly hard time for you (and your family), but you will get through it. Of all the times for a child to go into a brace, I truely believe it is hardest in middle school. Middle school seems like the place all the kids are trying to find there place in this world and being different in any way, is difficult. Shoot, just being in middle school is difficult!! Please know that we are all here for you and we've all been in your shoes. It does get better, I promise!

Have you talked to a guidance counselor and/or nurse at school? I know they can't give you names of any kids who have Scoliosis, but our guidance counselor took my information and passed it along to the parents of the other kids with Scoliosis and left it up to them to contact me. It might help.

Mary Lou

[MATJESNIC]

You would have to say a lot to offend us. Asking questions is good. We have all been where you are right now. Most of us are still on this journey. So feel free to ask away. Many of us are unsure whether we have taken the right path. But we do know that we are doing the very best for our children with the information we currently have. We can't ask much more from ourselves, now can we?

I wish you and your daughter the best of luck. We are all here for you even if it is just to be a sympathetic ear. Nobody else will appreciate what you are going through like we will. I know for myself that most of my friends are very uninterested and/or unsympathetic. So I am glad I have y'all.

[arairdon]

X-rays

I just thought I'd add my experience. In the 5 years that my daughter wore a Boston Brace, she only had 2 x-rays that were in brace. The rest were taken out of brace for varying amounts of time (depending on how long we sat in the waiting room).



I also agree whole heartedly that Dr. Rivard and Dr. Coillard are trying to figure out the best course of action for your particular child.

Ann Rairdon

[mariaf]

Mary Lou,

How have you been?

My experience was actually similar to MBG's. When David wore his brace, I wanted to make the gym teacher aware of it, and he happened to come out with the fact that he never had a kid in his gym class with a brace before. He didn't mean anything by it - he just said it in passing to explain his lack of knowledge about any restrictions, etc.

In David's school I am nearly 100% sure nobody else wore a brace - but it only went up to 8th grade. However, that still includes kids who are up to age 13/14 or so.

I think it's just kind of a random thing. One school may have several kids and another just one.

I do agree, though, that often when we are going through something, we think we are alone - and then all of a sudden we start talking about it and find out others are dealing with similar issues.

take care,

[gerbo]

So, please bear with me as I try to ask questions that I cannot find answers to anywhere else. I don't mean the questions to sound skeptical at all; I am just trying to find out, quickly, what you all have had to work out over time. I am afraid of to spend years going down a wrong path only to arrive in a position where we have run out of options.

sorry MBG if my reply was a bit sharp, I was just in that kind of mood at the time. You asked a very valid question, one which I asked myself, initially as well. And yes, we all have been there. searching for the "ultimate" answer and knowing "for sure" we were doing the right thing and nothing more could be done.......only finding out that there were no certainties, no garantees, its all judgements we make, balance of probabilities to be considered....., and you need to go through that, as, whatever the outcome, you (and your daughter) will have to live with the consequences of the choices you make. And as you cannot look in the future now and predict outcomes, you need to lbe able to look back from the future and be able to say to yourself, I considered all the options carefully, and yes, I made the right choice (whether the outcome was favourable or not)

So, keep them coming (those questions.....)

[gerbo]

and just to confirm, i have no doubt in my mind we made the right choice by changing our 12 year old daughter (29 degree T11 curve) from a hardbrace to a spinecor. Correction is better, spinecor is so tolerable (one year of hard brace was horrible, child-cruelty and torture Lisanna still calls it) so quality of life is so much better (which is very important)

Have you looked at the spinecor website to see their "evidence"? I know, only one article published, compared to many on bostonbraces, but level of detail and results (better than published boston brace results) mean you have to at least consider it.

If anything, if you are not sure (and you can afford it) have a trial fitting of the spincor and see what it looks and feels like. You won't loose anything but money and would get peace of mind in return.

(....and so sorry again for my reply, it gives the correct considerations, could have done without the cynical bits. Saying that, Melissa did get all my "wit and humor" for once, which is worthwhile if it cheered her up a bit)

[Celia]

sorry MBG if my reply was a bit sharp, I was just in that kind of mood at the time.

Gerbo,

Your post was very VERY funny!!! I love the concept of the conspiracy theory LOL!!!


MBG,

This is understandably a difficult time for you, but hopefully we can soften the blow by letting you know that some of us are defying the odds and we're still standing!!!


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[gerbo]

I know it was kind of funny, but that is easier for you to appreciate, (and ofcourse a revelation for melissa to experience ) but you know me, and know i do not mean any harm. For somebody just starting "on the road" it reads a bit as a "i'll put you in your place" type of reply.

re CT; the one which doesn't go away here in the UK is about Diane (PoW) being murdered by the royal family, rather than just having an ordinary carcrash. Did you hear about that in the frozen wastelands of Canada??

[Celia]

Yes, we've heard that one here in the frozen tundra! The one I really like is Prince Harry being Princess Diana's love child with Mr. Hewitt.



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