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The change in your son's back is amazing. I forget what you did at first. Was it casting or hard bracing? When did you get Spinecor? Did they find out what caused the scoli at his age?
thanks, melissa! as for the questions, look at my signature. hopefully that clears everything up.
deshea
mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
spinal detethering due to a tight/fatty filum at 22 mos;
tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
and ruby (3 1/2 yrs old and a handful!)
north of boston, ma
Thank you for the article it really helped me make a decision. I scheduled her MRI during feb vacation. I researched all options and need to go with sedation. I do not want it to be too tramatic considering this is going to be a long hall.
I do want to make a quick comment about vest testing without opening a can of worms. When I first found out about the spinecor brace I did a google search for docs and was directed to a chiropractor which does the tests at the initial visit. I must say it was very expensive and made the spinecor treatment seem to be not legitamite. Then I found you folks and was rediercted to Montreal. A fraction of the cost (not that $ is a big issue I would have put a 2nd mortgage on the house if necessary)
As a desperate parent I was on the look out for scammers. I was very glad I continued to look at spinecor because it was the best option for us.
I do need to mention however that some of the vestibular testing does make some sense although there are practioners taking advantage (ie$$$)
I have been seeing a chiropractor EVERY 3 weeks for the last 11 years and have been vitirally pain free because of him.
Christine
from CT, USA
6 year old daughter diagnosed 7/06 33* T9
Spinecor 8/06 - 8/2012
8/06 11* 3/07 5*-8/07 8*-2/08 3*
10/08 1* 4/09 Still holding @ 1*
10/09 11* OOB 4/10 Negative 6*
10/2011 Neg.11* IB 11yrs old 0 rotation
4/2012 12* OOB 0 rotation
8/2012 18* OOB for 2 weeks. TSLO night time
2/2013 8* OOB 3 days TSLO nightime
3/2014 8* Out of Brace permanently
I *really* wish that entire discussion in the other thread hadn't taken place. It's not like I'm some reporter for Sixty Minutes...I'm just a parent. Why should I care about this ???? I don't know but I do. What was said months and months ago between we parents in this thread was light frivolous conversation. When my words were taken out of context to suit Structural's slanderous agenda, I had no option but to respond. This happened Christmas Eve and it was highly inconsiderate! I can tell you it ruined Christmas for me.
Canadian eh
Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008
I know it must be frustrating but please keep in mind that the reason I come here is to learn and hear different opinions. Even though your discussion gets a bit "heated" at times it is still very informative.
Christine
from CT, USA
6 year old daughter diagnosed 7/06 33* T9
Spinecor 8/06 - 8/2012
8/06 11* 3/07 5*-8/07 8*-2/08 3*
10/08 1* 4/09 Still holding @ 1*
10/09 11* OOB 4/10 Negative 6*
10/2011 Neg.11* IB 11yrs old 0 rotation
4/2012 12* OOB 0 rotation
8/2012 18* OOB for 2 weeks. TSLO night time
2/2013 8* OOB 3 days TSLO nightime
3/2014 8* Out of Brace permanently
Celia,
Don't let structural freak you out. He twisted everthing you said and attacked you at every turn. I only posted once or twice to him and he twisted what I said too. I never said that vestibular testing was not useful anywhere in medicine, only that exorbitant charges for it in relation to scoliosis were motivated by profit and not research. He twisted what I said in his reply to me, and I decided not to argue with that yahoo.
You are one of the most valuable members of this forum and the information you post has saved several infant lives, I would bet. I know the support and information that you and the other Spinecor pioneers on this forum posted and the encouragement that you have given me, gave me the courage to pursue Spinecor for Rachel. I has been such a blessing. She would have already had to have had surgery this year without this brace, probably. With her 38 degree thoracic curve, ( she progressed 20 degrees with 2 cm growth in 2005), and absolutely no correction with a TLSO brace, I was out of options and out of time. The Milwaukee might have held her, but would have been torture. On the other hand, it was the accepted alternative.
This year, she has grown 3 or 4 inches and I don't think her curve has progressed at all. I am fairly certain, even though we haven't had out of brace x-rays, that she has improved out of brace. I know she looks good in brace. She has no pain and is happy.
I thank you all for your help and support. You have been a fortress of support and information and kept me sane this year. I love you all.
Blessings in the coming year, my friends!
Cheryl
God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.
Canadian eh
Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008
Just wondering if any of you who visit Montreal have ever requested copies of your child's xray. I thought if I could get a copy of my daughter's next set of xrays from Dr. Rivard, that she might not need xrays when when we go visit our orthopedic doctor in Madison. Our Madision Dr. could just look at the copies.
I'm sorry you have to resort to more negative comments on the matter...
There was nothing "slanderous" or "twisted" about my inital post clarifying Celia's claim that it was a "chiro thing" and that it's a bunch of "phoney baloney". I responded very directly to those comments. Her original comments were slanderous in and of themselves and other people deserve to know that vestibular rehab in conjunction with other treatments is nothing of the sort that you described - a chiro thing or phoney baloney.
...my words were taken out of context to suit Structural's slanderous agenda, ...This happened Christmas Eve and it was highly inconsiderate!
Celia, what is my "slanderous agenda" anyway? It doesn't make me a bad person to consider both sides of the coin, or to clarify a misrepresentations. And Celia, that conversation began on the 9th of December and I attempted to end it on Christmas Eve, but you insisted on keeping it alive.
Cheryl,
I beg your pardon? My initial posts on this forum are anything but rude. They become rude when I get attacked by 'others'.... . I don't like the rude nature of these posts anymore than you do, but let's consider how it began and how it continues to persist with those two individuals making sarcastic and denigrating comments long after I willing "surrendered" to their attacks. I think you're showing a bit of selective favoritism here.
I'm sorry you condemn an entire field of medicine because of a few bad apples out there... but those few 'financially motivated' practitioners do not represent them all, nor does it illigitimize the efforts put forth.
You call that "twisting" your words and being rude? Did you read the post you directed at me? ...now that was rude. Cheryl, calling me a "yahoo", is that not another insult without prompting on my part?
I'm sure the two of you, and others, have proven to be very hepful and supportive to folks here, but that doesn't mean there isn't room for a differing opinion on things. I find the two of you to be very hypocritical. Don't worry, this is the extent of my postings on this.
If you e-mail dr Rivard privately, I'm sure he will send you a copy of the x-rays
Canadian eh
Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008
I had the same problem. But try to E mail him as celia said. I learned my lesson. I will get copies of x rays and reports while I am in Montreal for now on. We ended going to our 3rd ortho opinion with out spinecor x rays. The doc did another. It was of no help to the ortho here or Dr Rivard because of different techniques. Unnecessary rad exposure (BAD MOMMY) I learned a lesson and will be more careful in the future.
Christine
from CT, USA
6 year old daughter diagnosed 7/06 33* T9
Spinecor 8/06 - 8/2012
8/06 11* 3/07 5*-8/07 8*-2/08 3*
10/08 1* 4/09 Still holding @ 1*
10/09 11* OOB 4/10 Negative 6*
10/2011 Neg.11* IB 11yrs old 0 rotation
4/2012 12* OOB 0 rotation
8/2012 18* OOB for 2 weeks. TSLO night time
2/2013 8* OOB 3 days TSLO nightime
3/2014 8* Out of Brace permanently
Just wondering if any of you who visit Montreal have ever requested copies of your child's xray. I thought if I could get a copy of my daughter's next set of xrays from Dr. Rivard, that she might not need xrays when when we go visit our orthopedic doctor in Madison.
Sarah
Hello Sarah, after every visit w/Drs. Rivard and Colliard, we leave with a disc of our daughter's x-rays. pat
6 monthly review today with xray in and out of brace. Not too unhappy as out of brace xray showed original T11 curve at 20 (from mid to late 20's), and in brace at 15 degrees. (whilst having grown 3.5 cm in 6 months)
Slightly worried as we noted a compensatory curve to the left at about T7, which actually measured at 28 degrees!
However, mr mills thought this was purely due to action of brace and would disappear on discontinuation of brace; i.e. not develop into a permnent curve. Hope he is right!. Will write to de rivard though to see what he thinks
did confirm that once a week washing is essential for brace to keep its proper shape and elasticity, and chnging straps too often is not a good idea as they need a bit of time to loosen up requiring more frequent adjustments
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