spinecor

[MJB]

Halle's shoulders, ribs and chest are now uneven and they never used to be before we got her in spinecor... I am worried about when she develops during puberty that she is going to be very lopsided in the breast area... has anyone else experienced this?

[MJB]

I also made an appointment with our family doctor for Jan 2nd to get an out of brace xray... I want to see what her curve is really looking like, her xrays right now she looks SO leaned to the side in them.

[BellasMom]

My daughter had hew first dance lesson yesterday in a SpineCor .

She just told all of her friends that she is wearing a brace and let them feel it through her clothes. Nobody paid much attention after the first 5 minutes

[MJB]

see Halle wore is last year in her classes and she got a lot of stares from kids, teens and adults... all just curious i'm sure. she goes to a very large dance studio, so i guess she feels like there are just too many people to stare and she's not comfortable with it this year... not to mention her brace is getting in pretty bad condition now, it doesn't look so new anymore lol.

[jillw]

Marlowe, Katie doesn't wear a leotard to dance - just jazz pants and a fitted tshirt so she doesn't have that issue - is Hailey required to wear a leotard? (I'm assuming that she would wear her brace over her leotard which is why people would see it so much? I've seen pictures of ballet dancers dancing with the spinecor on top- the people who stare are probably wondering what cool new gadget she has to help her become a world class dancer and are wondering if they should get one too!!! :) If I recall , ballet is one of the types of dance Hailey does so they probably do require a leotard (would they allow a fitted shirt on top and the little ballet skirt below to make it less obvious?) I know what you mean about the brace not being as white anymore - epecially the plastic pieces (but they could be covered by the little skirt). Maybe they'd make an exception for the dress code for Hailey-better she wears the "wrong" clothes than sits out the class.

Regarding shoulders, Katie has a right thoracic curve and her right shoulder is lower than her left - it is done intentionally and part of the "corrective movement". I'd definitely send a pic when you get a chance to take one.

Also, a good idea to get an out of brace xray for your peace of mind. Just remember that Hailey should be brace free for a couple days prior to get a meaningful measurement. If her curve is the same or below the size of her curve when she was diagnosed/pre-brace, then you would probably feel more comfort. I wouldn't expect a smaller curve though since she hasn't been braced long enough for changes to become permanent.

Re which braces show less under clothes-I'm not sure. I know a Milwaukee is hard to hide, but the boston braces could probably be hidden if she wears loose clothes. I'd post that question separately in the bracing forum so you'd get responses from those with more experience with hard braces than those who have only worn spinecor so far.

Good luck ! I hope you get some good answers from the doctors.

[jillw]

By the way...I just got a nice insurance check in the mail to reimburse me for the brace! It's subject to "out of network" levels of reimbursement, but more than I expected because the brace itself must not have been subject to the out of network restrictions. I was totally psyched. Thanks to all of you who helped answer my questions in earlier posts about codes and strategy and such! I didn't even have to go through an appeals process like I expected!

[BellasMom]

Happy holidays to everybody!

I have new concern - Bella has been in SpineCor for a month already and she's been doing just great: figured out how to put it on all by herself, it stopped bothering her thighs etc

But we are having new issue now - when she takes it off, especially at night, she complains of a back pain. When I ask her where it hurts, she points to the muscle on the left of her lumbar curve. This muscle seems to be much more tense to me that it used to be before. This is the muscle that is pulling her spine to the left.

Has anybody had this problem? What do you think it might mean - that the brace is not working? that is working? anything else?

I'll write to Dr. Rivard, but they are on holidays till January 12th, so I would not expect an answer from him anytime soon

[BellasMom]

Dr. Colliard called us today (unbelievable service!)

She said that it's nothing out of the ordinary and suggested to massage the muscle and use Bengay on it

[christine2]

Bellas Mom

Sorry I am just getting to this but between work, the holidays and my sons hockey schedule there has not been much me time. My daughter was getting muscle spasms in her neck from time to time. I am able to message them out. My Chiropractor taught me how. We immediatly use ice packs them message. It seems to do the trick. I would immagine they are due to the rotation in my daughters shoulders. She was very rotated for 2 years. Dr Colliard has relaxed the tension on the bands (due to 2 years in brace and relaxing on treatment a bit until the major spurt). My daughter has not had a spasm since our last visit. We are going back in April for a new brace, hers will be almost 3 years old by then and getting very tattered. I will be interested to see her x rays after the loosening of the bands for 6 months

[BellasMom]

Thanks for the reply, Christine;

Bella seems to be Ok after we massage it a little and used some Bengay

[concerned dad]

Wow, this is a long thread. I have not been able to read through all of it. Hard to keep track of where I leave off.
But, last night I did read some of the more recent discussions and wanted to add something.
While discussing the Wong paper (showed poor SpineCor results for a study in Hong Kong) this summer, Sharon made the following very valid observation about 30 pages back.



Some things I consider when looking at this situation is why was the rebuttal published only on the Spincor website and not in the journal? Maybe the journal doesn't publish rebuttals but maybe they do and did not accept this rebuttal for some reason.



I just wanted to add that since the time of that discussion, the rebuttal was indeed published in the Journal. It says much of the same as the rebuttal on the SpinCor Website. But, for me at least (and I am guessing Sharon), seeing it in the journal carries much more weight. It was in the Dec 1, 2008 issue of Spine.

What I took away from this is: Iff the SpineCor is an effective treatment, it DOES make a difference in who applies/fits the brace. I decided at that point that, if we were going w/ the SpineCor, we were going to Montreal. (Not that I dont think you can get good results elsewhere, but I would sure stay away from Hong Kong)

[BellasMom]

I totally agree with you on the subject of who fits it

Our regular doctor is the lead ortho in Boston Children's. He used to use SpineCor about 10 years ago, but then stopped. As he said, there were great results first year, but then they deteriorated. I suspect that he was not fitting the brace himself (being such a big fish), but was using technicians and I was not 100% sure that his technicians were all trained properly

We had an option to go to Connecticut or to Montreal, we obviously have chosen driving twice as long for the much better service

[concerned dad]

Perhaps some of the folks here can consider the
Question (http://www.scoliosis.org/forum/showthread.php?p=69423#post69423) I posted in the insurance section.
Thanks

[concerned dad]

This info may be useful for folks who travel to Montreal for treatment.

The Hyatt hotel in downtown can be had for $55 though Priceline’s opaque bidding product. (and this pricepoint may change in the future)

Details on how to do this are available on a forum whose sole purpose is to help people make informed Priceline bidding attempts. It is www.biddingfortravel.com
That forum is moderated with an iron fist, so before you post a question there (or attempt to bid) you should read the FAQ (frequently asked questions). You can see information there about Montreal hotels if you scroll down to the Canadian hotel threads.

I just booked two rooms at the Hyatt for $55 each. The best non-opaque price I see for this hotel is $130US. So this represents a savings of a fair amount of money (which I may need for some extra bodysuits).

The biggest caveat (and there are others) to be aware of is: No cancellations and no refunds.

I know it’s not for everyone, but thought I would throw it out there.

[pat]

Thanks for the bidding for travel website; we're heading up next week.
p

[LeahsMum]

Hello to all. I am one of those who have silently read these threads and never posted but now that I am one of you felt the need to post and say a HUGE thank you to all of you. I am from Australia and have an almost 7 year old daughter with right thoracic scoliosis at 28 degrees. We saw the orthopaedic surgeon who recommended the milwaukee brace which frightened the life out of me. I did as much research as I could and came across the SpineCor brace which interested me. It wasn't until I found this forum and read all of your stories, some successes and some not that it helped me make what was a difficult decision. We live in Queensland and as of yet the brace is not available here so we would need to travel to New South Wales so on top of the brace fee we also would have regular airfares as well. After putting it all together, the research and the personal stories we took the leap and decided to try the SpineCor first before anything else. Leah has now been in the brace 6 weeks and have just flown back to Sydney to have her first check where we also had her in brace xray. We we over the moon to see that at in brace she is 13 degrees. This was more than we had hoped for and is such a wonderful start and such a relief to us to know that we made the right decision for her at this time. We know that it's a long road ahead but so far so good. Once again I can't thank you all enough for putting the time and effort into sharing your stories and helping me make the right choice for my daughter. I hope to get to know all of you throughout this journey.
Tammy

[RugbyLaura]

Welcome Tammy!

My husband's parents live in Queensland.

Laura x

[concerned dad]

Hi folks, we’re back from Montreal and everything went well. Her curve went from 38 to 27 in brace. The hardest thing we are dealing with are the snaps. Hopefully they will become easier to snap as they get used more. Perhaps my daughter would disagree, but the main issue seems to be one of cosmetics rather than comfort. She will have to modify what she wears if she wishes to hide the brace. We picked up 3 bodysuits. Perhaps we’ll look at bodysuit.com to see if any others are suitable/acceptable to her.

I was impressed at how meticulous they are with the xrays. They are obviously trying to minimize error and variability. I was also happy to see they had one of those low rad xray machines that significantly reduces the dose.

I was also happy to see that they provided a letter to our insurance company with information necessary for reimbursement (assuming the insurance company reimburses out of network).

The hotel that I linked to above that we got through Priceline was fine. We booked two rooms and when we checked in I asked if we could have adjoining rooms (no guarantee of this w/Priceline). They upgraded us to a two room suite which was nice. Parking was expensive ($29 valet). The hotel is built above a large underground shopping complex and I understand that if you make a $25 purchase at any merchant they validate your parking. We didn’t learn this until too late. The hotel is located right on Rue St Catherine in the heart of the dining and shopping areas. Old Town Montreal would be a short walk (in the summer, not last week). St Justine’s Hospital is not close though, it is about 6 miles away.

We did some sightseeing. If I get up enough guts, I’ll share a story about one of our stops in another post.

[CAmomof2]

Concerned Dad,

Glad to hear that you made it safe there and back. The snaps do get easier - they probably are already! The outfits do need adjustment - my daughter has to wear shirts that have a higher neckline, and her pants need to be a size larger.
We are going back to Montreal in March for her next appointment. I am starting to get a bit nervous!
How is your daughter adjusting to her new brace? It seems to take a week or so to get used to it. Hope she is doing well and you too - it is hard on the parents as well. :)

[BellasMom]

Snaps really do get easier - we could not snap #4 all together - Dr. Colliard, me and my husband :) Now, Bella does it all by herself

We have an appointment on Tuesday for her first check-up - I am nervous. I won't even be there - my husband will drive Bella there on Monday and back home on Tuesday

Wish us luck ;)

[concerned dad]

OK, this post is a little hard for me to write. If anyone has followed or joined in some of the discussions on the other threads you may know that I am a scientist at heart. Although raised a strict catholic, I am not a religious person. I am not anti-religion, I guess the only strong feelings I have on the topic are that, while science and religion are not incongruous, religion has no place in a science classroom.

In any event, I decided to share this story in honor of my late mom. She would have wanted me to at least acknowledge it happened. Some may find it a mere coincidence; others may sense a deeper meaning. So, here it goes…..

While preparing for my trip to Montreal I used, as I often do for trips, the website Tripadvisor. I pulled up a map of Montreal and found St Justine’s Hospital. Now Tripadvisor also shows points of interest (POI’s) to tourists. I saw the closest POI to St Justine’s was a church. My wife and I enjoyed visiting old churches and cathedrals during previous trips to London and Rome. I figured I would click on the POI link and read some reviews.

It turns out the church is called St Josephs Oratory. I started reading a review from a visitor. He mentioned a chapel loaded with votive candles and discarded crutches and braces hanging on the walls. This jarred a distant memory for me. I googled the church and found that it is a pilgrimage destination where faithful people come and pray to St Joseph for intervention. Part of the pilgrimage involves crawling up a long flight of stairs on your knees praying. Well, this jarred another distant memory.

I should say now that my mother was very religious, a strict old school catholic. She believed strongly in the power of prayer, miracles, Saints, pilgrimages, the works.

So, I emailed my siblings and asked if any of the older ones recalled anything about this church. My sister wrote back and told me that when my grandmother was dieing, our mom took us on a pilgrimage to St Josephs Oratory to pray for a cure. This was a long trip for us as we lived on Long Island. I was about 6 years old but I do remember the old crutches and discarded braces on the walls and crawling up the long stairs on my knees. My sister reminded me that grandma still died (thanks sis).

Well, the thought that I find myself back, 40 years later, almost across the street from this church filled with discarded braces and crutches where I made a pilgrimage with my mom, now getting a brace for my daughter, sends chills up my spine. I can imagine St Joseph saying, See Mrs. “Concerned dad”, you came to this chapel, like so many faithful, to pray for a cure for your mom. It is her time to come home, but I’ll tell you what - that young boy at your feet will give you a lovely granddaughter. One day that little girl will have a serious problem and I will steer her father back here close to this church for help. Not only that, but when he realizes this, he will rethink his skepticism of the power of prayer”.

I have to tell you, before I walked into that hospital, I turned around and looked across the street at the towering Dome of the Basilica of St Joseph’s and said a prayer.

[Susie*Bee]

Thanks so much for sharing.

[Pooka1]

Hey Concerned Dad,

That's the kind of story that should be on the radio.

StoryCorps (http://www.npr.org/templates/story/story.php?storyId=4516989)

[pat]

That is a beautiful story, thank you. 3-1/2 years later, and 7 inches taller, and we're holding in brace at an 11. Drs. Rivard and Colliard are pleased, naturally we are too.
p

[mariaf]

Concerned Dad,

What a story! I just wanted to say that I smiled several times while reading it - your mom sounds a lot like mine, lighting candles in church, saying "novenas", etc. (right down to the fact that my family is from an area about 15 minutes from the Queens/LI border!). I actually could describe myself pretty much as you did - not "anti-religious", but not very religious either (certainly not compared to my mom - LOL!)

That said, I do believe things happen for a reason and that there are no coincidence in life.

Again thanks for such a great story.

[jillw]

I guess I somehow missed new posts to this thread over the past week or so...

so Tammy, belated Welcome to the boards! I'm so glad that your daughter's fitting and results went so well. My daughter is in a similar boat (see my signature). They wanted to put her in a Milwaukee also since she'd have so many years in brace that they were afraid of rib deformities if she was in a TLSO. My daughter had an initial correction in brace similar to your daughter's and then when we went back a month later, she had even more correction (although we've given up a couple degrees of correction since).

Concerned Dad, thanks for the info about priceline. I'll have to look into that for our next trip. Also, it's good to hear about your daughter's initial results. What a story! I'll be thinking of you when I see the church our next visit. I agree with you on the xrays. I love that they have the lower radiation machine (when they first got it they were 1 of only 2 hospitals in the world to have it - presumably some more hav e gotten it in the past couple years). I also like the precision of the xrays with the foot positioners insuring a similar stance at each xray.

Pat, 11 degrees is great! I missed your earlier post, but I now see you posted last week that you'd be going up soon so I'm guessing that your post is after the Jan visit? Always such a good feeling to come home from an appointment that goes well!!! How old is your child? (you may have posted it before, but I don't remember)

CAmomof2, we go back in March also and I'm starting to get nervous as I always do. Especially since the other day when I saw her out of brace it seemed to me like maybe her curve was a little bigger? Although my husband thinks it looks the same. I hope he's right this time (even though normally I insist that I'm the one whose right)!

[concerned dad]

thanks for the kind words folks, I'm glad you enjoyed my story.

I'm just happy I discovered this AFTER I decided to go to Montreal. The stubborn scientist part of me may have decided against going thinking I was being biased by a memory of my mom or something.

Sharon, I enjoy NPR. It would be great to hear, say, Dr Rivard, Dr Dolan (in Iowa) and perhaps Dr. Weiss (see my upcoming post on the "Why I decided ..." thread) discussing AIS bracing with Ira Flatow on a Science Friday show. For me, that would be a "driveway moment".

[pat]

Pat, 11 degrees is great! I missed your earlier post, but I now see you posted last week that you'd be going up soon so I'm guessing that your post is after the Jan visit? Always such a good feeling to come home from an appointment that goes well!!! How old is your child? (you may have posted it before, but I don't remember)


Yes, it was after Jan. visit; she's 15.
p

[LeahsMum]

Thanks for the welcome. I was wondering if anyone else had a problem with the base riding up. We put the leg straps tight, the strap around the hips tight but after about an hour of wearing the brace, the base rides up about an inch or so which makes the number 3 strap loose. The brace has been adjusted which has improved it slightly but it is still riding up. Do any of the other younger kids have this problem.

[CAmomof2]

Yes, it was after Jan. visit; she's 15.
p

Hi Pat!
I was wondering since your daughter is 15 - did they say when she could start weaning herself out of the brace? Must be a lovely feeling to even imagine that! S. :)

[CAmomof2]

[QUOTE=LeahsMum;70319]. I was wondering if anyone else had a problem with the base riding up.

LeahsMum,
This has happened to us as well and we were told that it was ok. S. :)

[pat]

Hi Pat!
I was wondering since your daughter is 15 - did they say when she could start weaning herself out of the brace? Must be a lovely feeling to even imagine that! S. :)
Since she only just got her period, we've got probably two years ahead of us still, but now there is a light at the end of the tunnel, but the next 6 months to a year . . . he stressed how important it is during this time to wear brace more then ever. p

[BellasMom]

My daughter was supposed to see Dr Rivard today - it would've been her first check-up in brace

My husband and her drove yesterday all the way from Boston, just to find out that both Dr. Rivard and Dr. Coillard are out of town today

Nobody knows where they are and nobody called us to re-schedule an appointment

My husband had to plan his business trip to Russia around this appointment

I am soooo pissed off ......

I can't believe it .... This is so unprofessional ......

[christine2]

Bellas Mom

I am sorry to hear that. I have had their office call to reschedule the day before, ( we drive 7 hours and need to plan pet sitters and hotels stays way ahead of time) but never just not be there. I hope they are OK. I do know that they have a new receptionist, it will be hard for her to fill Sue Ann's shoes. I understand how mad you are, not only the planning but the anticipation of the visit, must be dissappointing. I always call to confirm our appointment ahead of time since the cancellations.

[mariaf]

Bella's Mom,

I can certainly understand your feelings. We, too, travel (about 3 hours NY to Philadelphia) to our appointments - and on the rare occasions when they have had to be rescheduled, we recieved notice WEEKS in advance. I would be upset if I was given only a day or two notice because I juggle many things around these appointments (work, my other kids, etc.). But to travel all that way only to find that the doctor wasn't there would be inexcusable in my opinion!

I hope you get a good explanation (not that ANY explanation would be acceptable) as to why this happened and hopefully it never happens to you or another family again.

[BellasMom]

I always call to confirm our appointment ahead of time since the cancellations.

Trust me! From now on, I'll be this smart too :(

[BellasMom]

I hope you get a good explanation (not that ANY explanation would be acceptable) as to why this happened and hopefully it never happens to you or another family again.

I have a feeling that it has something to do with his secretary, rather than with him.

You see, my husband tried to at least have an X-Ray done, so that Dr. Rivard could send us results by email, but the radiology technician was nice enough to talk him out of it, because Dr. Rivard makes the adjustments first and then the X-ray. But that's not the point - the point is that the technician had some patients scheduled for tomorrow for Dr. Rivard, but did not have any record of Bella coming today. So, I assume that he did cancel our appointment, but his secretary did not follow it all the way through

But it's not acceptable anyway

[mariaf]

I agree it is usually the staff (not the doctor himself) who is responsible for mistakes of this nature.

I also agree that it can't hurt to call a few days before to confirm. I do that as well, when I remember - but I think after hearing your story I will do it EVERY time :-)

By the way, what's the next step for you? (I mean as far as having adjustments made to the brace).

Good luck - and I hope it is smooth sailing for you from here!

[BellasMom]

Next steps: I left them a voice mail and sent a very angry email.

I hope to hear from them sometime soon and will schedule another appointment. My poor husband will have to do another 5 hour drive there and 5 hours back

I don't have a choice unfortunately :(

[mariaf]

I hear you - we do what we have to do for our kids - hopefully they will squeeze you in again soon - it's the least they could do!

Hopefully, it will all pay off if you get some good news on your visit!

[concerned dad]

Hopefully, it will all pay off .....


Yeah, like maybe a dozen free body suits!

Sorry, I couldnt resist the poor attempt at a joke. :)

The cost of travelling up to Montreal far outweighs the medical cost of the bracing. What, between time off of work, school, flights, rental cars, hotels.... It's not like you're going to the dentist across town.
I certainly hope this is an anomaly.

[BellasMom]

I certainly hope this is an anomaly.

me too ... me too ...

[christine2]

This is the 1st I have heard of this. Like I said I have had appts rescheduled last minute but have been able to cancel hotels ect... Time @ work is tough because I work by appt only. I basically lose out on some revenue. I would immagine it is a receptionist issue which I would bet Dr Rivard will handle.

Free bodysuits ????? Great idea!!!!

[BellasMom]

Just got this email from Dr. Rivard


===================================
I have to really apologize for this mistake, but when I leave for Germany, I was sure that all the appointments has been rescheduled. Accept my apologies and I will try to arrange something to compensate you trouble
===================================

As I suspected, secretarial problem, but does not make it feel better :(

Confirm, confirm and confirm!!!!!

[BellasMom]

I keep forgetting to ask you, guys, how much you pay for the follow-up visits.

There is so much information about the initial one and nothing about the follow-ups ;)

Do I pay for the X-ray? Doctor's fee? How much?

Thanks

[christine2]

We pay $100.00 per visit with the orthos and $278. for hospital fees (x rays). We used to get reinbursed for those fees although our ins. has recently changed to a $1000. deductable per person...ouch!!!

[BellasMom]

Just an update - the secretary called me in the morning and she was way unprofessional.

She kept telling me that she knows better, because she has a note that she indeed did call me and re-scheduled for the 29th. I kept telling her that she was mistaken, but she kept insisting.

Yeah, right, I am such a total and complete idiot that I would make my husband and child drive 5+ hours there and 5+ back just to piss her off

Anyway, my husband, being a hero he is, is driving to Montreal tomorrow again and coming back home TOMORROW. A one-day trip!

[jillw]

Bellas mom, Wow, I can't even believe how you must have felt! It is such a major ordeal for my husband to get off work and the time to drive up there (not to mention the emotional preparation). I am so sorry that happened! I guess I will now call and confirm each appointment also! We've been up about 5 or 6 times and never had any issues - quite the contrary, WE'VE been the ones to try and reschedule last minute once or twice and they have been very accomodating. I was thinking that is so unlike them - until Christine mentioned that the receptionist left.

Christine, first of all, I didn't know her name was Sue Anne....I thought it was Joanne!!! How embarrassing, I've been calling her the wrong name all along. When did she leave? I didn't know that. What a bummer! She would never be rude and I wouldn't see her letting that type of mistake happen.

Bellas Mom, as Maria said, I hope you get totally wonderful news today to compensate for the major major hassle. I forget where you are from - but you're from the US, right? Because to me, going to french canadian territory is more involved than driving the same distance within the US. I really have to get myself psyched - where are the passports, i get nervous going through customs (I don't know why, its not like we have anything to hide), I don't speak french, etc. All I know is that I am very tired after a trip and to have to make that trip for no reason would be a real bummer. I can understand your anger and frustration.

[BellasMom]

speaking of "where are the passports" :)

They left today at 7 in the morning and called me at 7:30 saying that they are almost back home - they did forget the passports :)

This is so unlike my husband, but thank G..d he remembered 15 minutes away and not at the border :)

[BellasMom]

Here is the name of the current secretary: Johanne

[BellasMom]

Just got a call from my husband - all is well. When Bella was first fit for the brace last November, she had L20 and in brace she measured L15

She is the same L15 today, which is very good according to Dr. Rivard

They are driving home right now, I just wish them an easy and safe trip home. Such a tiring week

[CAmomof2]

Bellasmom,

Glad to hear the good news. Sorry you all had such a bad week. Thanks for the heads up - we'll be calling to confirm our next appt. :)

[christine2]

JillW

I could have been wrong about her name too. Perhaps I should feel bad. At our last visit in Oct. she told us she was leaving because of her long commute and low pay. Because the Spinecor is a "bracing clinic" and is still in the stage of establishing recognition in the orthopedic world, I don't think the doctors or staff makes much $.

[christine2]

Good news Bellasmom!!! Next week can only be better :)

[concerned dad]

snip.....

They are driving home right now, .....snip

Do they have a trunk full of body suits to declare at the border? :D

I'm glad the results were good for your daughter.

I would also be curious to know if the inbrace xray was performed after adjusting the brace. I imagine that they are.
I asked the Drs about the tension of the straps. I was wondering if the straps were tightened wouldnt we expect to see better correction. Dr Rivard basically said that Dr Coillard shoots for the "sweet spot" (my words, not his) between too much and too little tension.

The other thing I am curious about is, do we have any parents on here who have a child who was braced before the adoloscent growth spurt? and then continued on in the brace after the growth spurt.

[BellasMom]

I doubt that they have any free bodysuits - I did not get a chance to talk to my husband at length (roaming charges ;) ) - he said that he'll call me after they cross the border

Yes, they do an X-ray after the adjustment. We found it out on Tuesday - my husband tried to get an X-ray at least done, so Dr. Rivard would've looked at it and tell us whether we should come at all, but the technician in the radiology department told my husband that it would not make sense, since Dr. Rivard always sends people for the X-ray after the adjustment. She was even nice enough to go with my husband back where he paid for the X-ray and help him get his money back

[mariaf]

Glad to hear the news was good, Bellas Mom and that the appointment went well.

That's always such a relief!

[concerned dad]

I have a personal story to share. I guess it’s OK because I am anonymous. It is related to the scoliosis bracing but not in the way one might think. You folks have been great in helping me understand this whole scoliosis issue. This forum has been my own private thing. My family knows I tend to obsess over stuff, they tolerate me. I figure I should spend at least as much time trying to understand my daughters scoliosis as I spent trying to figure out the best plasma TV to buy - and I spent a lot of time pondering that. The internet is a great resource and you folks have been fantastic.

Anyway, my dear 14 year old daughter left a letter for me on top of my computer last night. She got the SpineCor brace about 2 weeks ago. I am not going to share the letter but I want to share the postscript on the bottom – but you’ll have to keep reading to see it.

Let me start off by telling you a bit about this special girl. She is beautiful inside and out, she takes after her mother, a great person in her own right. My daughter is a very giving person as evidenced by the couple of afternoons she spends each week volunteering at the local food pantry. But, not only does she have a heart of gold, she is incredibly smart; when she was in 7th grade she was accepted into a very elite gifted math program at our local university based on her PSAT scores. (She decided not to go because, as she said, “Daddy, I may be good at math, but I don’t particularly enjoy it”). She has a great circle of friends and a little brother she tolerates pretty well. All around, she is a wonderful girl and her mother and I are very proud of her. I can guarantee you that this young lady will do more than her part to make the world a better place. I can hardly wait to see.

Which bring me to the letter. It was a plea for me to stop smoking. It didn’t mention scoliosis, it didn’t mention her bracing or any of the things she has been going through these last couple months. It didn’t mention any discomfort she is feeling or her frustration at not being able to wear the clothes she likes. It was a heartfelt plea for me to take care of myself so that I would stick around to share all the promises the future holds. She wants me to be here to share in the joy of graduations, wedding, births (<cough>, in that order I hope). Her timing was impeccable. I am reading this letter thinking, oh my god, what an idiot I am. Here I am asking my daughter to wear a brace to help correct her spine in the hopes that her future health will benefit, and I am still sitting here smoking. What a terrible example I’m setting. Could quitting smoking be harder than getting used to wearing a brace? What a hypocrite I am. Wow, it seems so clear now what I have to do.

Anyway, my eyes tearing up I turn the letter over and she ends it …….

“I love you with all my heart daddy”

Then, the postscript….

"PS: Thank you for being such a “concerned dad” the past few months. I really appreciate it.
(And I go on all the same websites you do.)"

So much for being anonymous, somebody found me out.
The cigarettes are in the trash.

[jillw]

Concerned Dad,

My eyes are tearing up....what a special girl you have there! Good luck to you in quitting smoking. It won't be easy- but it sounds like you have a great motivator. (and a lesson to all of us who think we're anonymous on the internet! :) Fortunately this is one where it doesn't matter that you have been discovered)

Also, in answer to your earlier question, Dr. Coillard does have xrays taken AFTER the brace has been adjusted.

Bellas Mom, I'm glad to hear her results were good and I hope they had an "easy" uneventful trip back. I also hope future visits are smoother (and have continued good results) .They must be EXHAUSTED from the 2 trips.

Christine, based on what Bellas mom says, I wonder if she didn't leave after all (or didn't leave yet anyway) and that her name isn't Sue Ann. I have to say, if it is her, I am surprised both about the messup with Bellas appointment and the attitude afterwards - maybe she's already checked out in her mind.

[CAmomof2]

Concerned Dad,

You and your wife are truly blessed to have such a special and smart daughter (good advice). I love that she knows that it's you writing the posts! :p

She will remember forever how much time you spent trying your best to do what's "right" for her. She is truly fortunate to have parents who love her so much. :)

[BellasMom]

Concerned Dad, this was such a sweet gesture from your very special daughter!

[Pooka1]

It's obvious you're a good Daddy doing a great job parenting, Concerned Dad. :)

Good luck with the quitting.

[mariaf]

I figure I should spend at least as much time trying to understand my daughters scoliosis as I spent trying to figure out the best plasma TV to buy - and I spent a lot of time pondering that.

Ahh, how true. I think that line would be an eye-opener for a lot of dads :)

But you are clearly not just "any" dad - and to reiterate what everyone else said, you clearly have a VERY special young lady there. I'm sure it's a reflection on you and your wife.

Good luck quitting smoking. I'm sure it won't be easy but my money says that with the motivation you've been given, you'll succeed!

[RugbyLaura]

Immi's 18 month review yesterday.

X-ray (in brace) - 24 degrees.

We are over the moon! Not completely out of the woods yet, but so much better that we could have hoped for 2 years ago...

I urge every parent with a child going through this to investigate Spinecor - without this forum (leading us to Spinecor) Immi would either be in a rigid brace 23/7 or on the surgery list - this is the opinion of her consultant spinal surgeon.

[Pooka1]

Hey that's extremely encouraging!

It certainly seems like the brace is redirecting the growth to go against the curve.

I hope she is a success story.

sharon

[emarismom]

Laura,

Congratulations!! That is wonderful news!! Quite a drop from where you started!! Is Immy wearing the brace 20 hours a day now? I think I remember she was taking a little extra time for dance a while back (forgive me if I'm confused, it's happening often lately :confused:) That is wonderful if she is still reducing the curve and having longer breaks!!

[RugbyLaura]

Thank you Sharon, I feel (at the moment at least) very fortunate with the way things have gone. Had we looked into her curve earlier (it has definately been around since she was 7), who knows what course of treatment we would have followed? I would have been very interested in VBS, if it was available in the UK; her 1st consultant would have gone down the growth rods route; we were also interested in the Providence.

Spinecor gets a bad press - I really don't understand why. Immi's consultant is one of only a handful in the UK that prescribes Spinecor. He describes himself as a sceptic but is of the opinion that there is no better option; at least spinecor does no harm and is reasonably easy to wear - why not give it a go? He explained (again) the theory of the pressure on the growth plates encouraging the slow growing side to speed up. He said that it is not all understood, even used the word 'voodoo' :eek: (has he been talking to you??)

The handful of consultants all use Mr Mills or one of his personally trained colleagues to fit the brace and they are collecting the data with a view to having some results in about 2011. The consultants have no vested interest in the brace - they want to know, one way or the other, how effective this brace is.

Immi is still growing steadily - no peak velocity growth seen yet - perhaps it is her growth pattern that is enabling the brace to be more effective? If she continues to grow slowly and never has a true 'spurt', who knows??

That's the problem - no-one knows!

But we'll keep trying and hoping. I can't describe the joy I feel when I compare her 38 x-ray with the 24. One day I might find out how to post them here :o

Cheryl's Rachel is having her surgery on Monday - I know Cheryl would appreciate your prayers.

Laura x

[RugbyLaura]

Michelle, Hi!

Yes, she's pretty good but we don't let it rule her life. She takes it off for between 2 and 5 hours per day - normally all in one go, and closer to 2 than 5. Her consultant was pretty relaxed about this and said, "whatever works for you."

[jillw]

Laura, That's great! A slow and steady trend in the right direction! IT's interesting because my understanding is that VBS works on the same concept (but different execution)...pressure on the growth plates.

Anyway, I'm very very happy to hear your news. Thanks for posting it!
(particularly because we take Katie in for a checkup in a month and I've started my period of excessive worry-particularly because I got a glimpse a couple weeks ago where her curve seemed more pronounced. so it's great to hear good news)

[BellasMom]

Hurray! This is great news! I wish you to keep going in the same direction ;)

So happy for you!

[Pooka1]

I'm a bit surprised at your surgeon using "voodoo" in association with Spinecor.

Someone edify me here but isn't there really only one possible mechanism -- compressing the growth plates on one side and allowing growth on the other so as to use growth to remove the curve?

I mean this isn't like Lithium where they can't figure out the biochemical pathway from among hundreds/thousands of pathways, especially given it might be novel.

I'm not a medical type but the scale of figuring out how bracing works for scoliosis seems much smaller/simpler than that for figuring out the biochemical pathway for Lithium and how it works to moderate bipolar disorder.

I know I keep bringing up Lithium but that is the only example I have ever heard of where a cure is found for some condition but they don't know why it works. Totally empirical. Bracing doesn't seem empirical at all. Quite the opposite.

[txmarinemom]

I have a personal story to share.

... snip, snip, snip ...

Which bring me to the letter. It was a plea for me to stop smoking.

... snip, snip, snip ...

I am reading this letter thinking, oh my god, what an idiot I am. Here I am asking my daughter to wear a brace to help correct her spine in the hopes that her future health will benefit, and I am still sitting here smoking. What a terrible example I’m setting. Could quitting smoking be harder than getting used to wearing a brace? What a hypocrite I am. Wow, it seems so clear now what I have to do.

Concerned Dad,

This post was particularly poignant for me. In Sept 2006, I realized my 18 year old son had started smoking. I'd been smoking for almost 25 years at that point ... since I was 13.

I watched my Dad die, at 67 (in 2003), of lung cancer.

I saw what it was doing to my face.

I was under NO impression it was in any way "good for me".

And I'd quit a million times ... never REALLY seeing myself at the point of cessation as a non-smoker. It was imaginable to think of sitting at the computer (which, BTW, is what I DO for a living), having a drink, etc. without a cigarette.

It took me seeing my child take it up to truly know I couldn't encourage HIM to avoid the same path my Dad did, and the path I was most surely headed.

(At this point, I hadn't even *thought* about surgery - and there's no way I could have had it if I were a smoker.)

On Sept. 26th, 2006, I declared I was quitting, and told my son I'd buy him gum/lozenges if he quit with me ... that if *I* could do it, surely HE could.

For the next 3 days, I tried go to cold turkey, and cheated with 2 borrowed cigarettes each day. On Day 4, I started the 4 mg lozenges. It took me almost a year to wean completely off them (surgical recovery finished off the occasional 1/4 lozenge - I was splitting them by then - I had a day), but I haven't had a cigarette since - and the split seconds that come (rarely) where I want one, pass as quickly.

My son quit, as well, and good thing: He enlisted in the USMC, and graduated Pfc. after 13 weeks at Marine Corps Recruit Depot, San Diego. Boot's tough enough with 100% lung function!

Anyway ... I wish you the best in your endeavor. Use whatever aids help, but know the #1 key to success is really, TRULY wanting to quit ... and you sound like you're there! I believe everyone who does has their own reasons, and their own motivators ;-). Children, no matter their age, are pretty powerful ones ...

Regards,
Pam

[LeahsMum]

Laura that's terrific. I'm hoping for you that the positive results keep coming!!
Tammy:)

[RugbyLaura]

Jill, I was CONVINCED that Immi's was worse and was dreading the appointment.

Good luck to you and Katie!

[christine2]

Laura

Sorry for the slow reply but here it is. Excellent news!!! I must agree with you about wanting to stand on roof tops and yell check out the Spinecor. I know it is not for every child and every curve but for some kids it is a godsend. My daughter is leading a normal, fun life in this brace. I know we are not even close to being out of the woods but at least I know that we are doing the best we can for her.

Jill
I feel for you. About 1 month prior to our check ups, I need to start planning our trip. I get anxious and check my daughters back every chance I get. Sometimes I think it looks worse and have to have my husband look and he usually tells me that I am seeing things. I checked her back last night and I must say it looks as straight as her twin brothers!! The poor boy gets checked as much as she does. Paranoid me!! I am wishing you LOTS OF LUCK!!!

[concerned dad]

snip
.... I believe everyone who does has their own reasons, and their own motivators ;-). Children, no matter their age, are pretty powerful ones ...

Regards,
Pam

Thank you Pam and everyone else for the kind words. Yes, children are powerful motivators. I am over 1 week now. The only trouble is that I am not really able to put any substantive thoughts together yet, hence the ceasation of my seemingly endless posting.
And I do want to share some stuff about the Tanner Whitehouse Staging compared to risser (and the important implications for bracing trials) but my mind is still a bit distracted.
But perhaps a quick update on my daughters SpineCor. She is doing fine, no real complaints. I dont think we will necessarily stick with it for the "18 -24 months" listed as their minimum treatment, rather we will keep her braced till she reaches Tanner Whitehouse Stage 7 (she is at 5 now). We will be going back to Montreal in March and then to a "local" orthopedic guy in early summer for an out of brace spine xray and hand xray.

[txmarinemom]

... I am over 1 week now. The only trouble is that I am not really able to put any substantive thoughts together yet, hence the ceasation of my seemingly endless posting.

Hooray for you, Concerned Dad! The first week is the hardest, and you did it ;-)! This week won't exactly be a walk in the park, but it won't be nearly as tough as last week: It gets MUCH easier - and soon (maybe as soon as the end of this week - and no later than Week 3 or 4), the physical cravings - if you're having them - will be gone.

I'd completely forgotten about the challenge to concentrate, feeling spacey, and trouble remembering things I experienced immediately following cessation until you wrote that, but I had it too. The lozenges alleviated those for me - along with sleeplessness, irritability, jitters, along with a multitude of not pleasant withdrawal symptoms.

Even if you decide to stick it out without nicotine replacement therapy (NRT), your mind will clear again soon. Hang in there.

Although you've pretty much cleared the hump of any physical addiction (the psychological aspect is more of a battle), your body still needs special care.

Be sure to drink LOTS of fluids to flush lingering toxins from your system and keep yourself hydrated. Water's best, but orange juice is great also to replenish the vitamin K depleted by nicotine.

Just a note ... dark green veggies also provide vitamin K, but watch your vitamin K intake if you're on Coumadin/Warfarin. Vitamin K can decrease the effect of the drug. Although my Mom doesn't smoke, she did just start on Coumadin, and the vitamin K effect was really stressed.

Also, if you take any regular meds, you might want to ask your doctor if the doses should be adjusted; nicotine screws with how your body metabolizes some medications.

If you have a weak moment and cheat, take it for what it is. I know it's hard, but you just have to forgive yourself and move on. One stutter step isn't worth throwing in the towel ... just pick up where you left off and keep seeing yourself as a non-smoker.

You've come so far ... keep up the good work! I look forward to hearing of your continued progress. ;-)

Best regards,
Pam

[RugbyLaura]

Sharon, thinking back to it, I have to confess that I was a little zoned out when the voodoo word was used. I think he used it in defence of my (our) decision to allow flexibilty in Immi's out of brace hours. I think his point was that according to the protocol, 12 active hours per day should be spent in brace, plus 8 sleeping, leaving 4 out of brace. His feeling was that not enough is currently known about this issue - perhaps this was, in his opinion, the voodoo part. He was happy for us to adapt the hours to suit as long as it was 'about right'. I will now make sure she has an hour less sleep if she has an extra hour out of brace ;)

I remind you that he has no vested inerest in the brace and played no part in inventing it or writing the protocol.

Concerned Dad, well done you! I have a(nother) confession... I am an ex-smoker :eek:. I gave up in December '07. It is hard at first, but well worth the effort. I tried a cigarette in November and wondered why I had ever enjoyed them. I do miss it a little though and even now enjoy the feeling of taking a deep breath in. However, I am now concerned that any health benefits gained by giving up the dreaded weed have been outweighed (literally) by the additional 20 pounds I'm carrying around. That's the next battle. *Sigh*.

Laura

[Pooka1]

Oh that makes more sense. The choice of hours to be worn is driven at this point by picking some numbers and trying to be consistent for the research as far as I can tell. That is, they have published no data to the effect that the present regime is just enough and not overkill. It might be overkill or not enough. Nobody knows.

[RugbyLaura]

Hi here are copies of Immi's xrays:

1) from June '07 http://i634.photobucket.com/albums/uu66/Rugby_Laura/june07.jpg

and 2) Feb '09 http://i634.photobucket.com/albums/uu66/Rugby_Laura/feb09.jpg

[CAmomof2]

RugbyLaura,

Wow - you can sure see the difference - great!!! Hope it continues!:)

[LeahsMum]

Excellent results!! Is the second xray at 24 degrees? A huge difference, makes you feel so much better when you can see what the brace is doing for yourself doesn't it.

[jillw]

JenMom, you had mentioned before that you were looking into the cost of a spare bottom for the brace. What did they say it would cost?

My daughter's pelvic base is yellowing and the bottom straps are looking quite mangy. I'm not sure if they'd be replacing the whole brace at the next appointment, but if not I wouldn't mind having a new bottom for those occasions when she's changing in front of other children.

[concerned dad]

We're flying back to Montreal Wednesday. I am guessing that the examination will be quick, refit the brace and another xray. Am I correct? Any advice on what to do in the area of the hospital while waiting for the appt? Any nice little cafe's?

[christine2]

Concerned Dad
I posted to you and others on the other Bracing site. Good luck at your visit. I can not give you advice for your wait time because we always drive and are right on time for our appts. ( difficult to do when flying) They docs in Montreal are always on time, no waiting. Again good luck and if you think of it can you ask Dr Rivard about the progression test they have been working on.

[jillw]

Concerned Dad, How did it go? We might have seen each other and not known it. Too bad. We were there yesterday. What time was your appointment? We were the first appointment (1pm ish) and the couple other families that arrived around when we did spoke french. However when we left, there were some other families in the room - perhaps you were one of them.

We had a good appointment. Katie's curves are basically holding steady in brace. They were measured at 2T and 5L which is actually a degree less than the last appointment. Of course there is the margin of error, but I have to say when I saw the xrays side by side her current xray did look a teeny bit straighter. I tell you, I was convinced it was bigger so this is a big relief. I think what it might have been is that since her thoracic curve is barely visible, that the lower curve looked bigger in comparison? Maybe that's what caught my eye?

Next week we are going to get out of brace xrays. Dr. Rivard doesn't find them necessary this soon in a situation such as katie's , but we're just doing it independently for our own edification. Since her correction has been mostly holding steady - yet it's too soon for corrections to become permanent (I think they have found that takes a minimum of 2 years), I would guess her curve after a couple days out of brace would be pretty close (plus or minus) to her original curve of 19/13 degrees? But we'll see soon enough....

[concerned dad]

Concerned Dad, How did it go? We might have seen each other and not known it.

Our Appt is next Week. :D

Glad to hear all went well. Hope you share the out of brace numbers w/us.

[jillw]

Concerned Dad, oh - I misread your post. Well, let's change that to Good luck next week. I hope you get good news!

I'll definitely share the results (whether good, bad or ugly! - but hopefully good or neutral) I put every visit so far in my signature so people can see the progress - i like to see people's trends/experiences etc also.

[christine2]

JillW

Excellent news!!! You must be so relieved.

My daughter has an appt the 2nd week of April. I have not started stressing out yet but I am sure that will happen soon. Dr Colliard really loosened the straps at our last visit. We are kind of in limbo till her major growth spurt. I must say though her back looks great. She swims once a week and I sit and watch her as she prepares to dive and can not take my eyes of her back. Her shoulder blades are so symetrical now. She gets a new brace this time. Thank goodness she has had this one for over 2 years and it is tattered!!

[Pooka1]

We had a good appointment. Katie's curves are basically holding steady in brace. They were measured at 2T and 5L which is actually a degree less than the last appointment. Of course there is the margin of error, but I have to say when I saw the xrays side by side her current xray did look a teeny bit straighter.

That's great news, Jill. Seems to be working so far.

I have to remember to read this thread for updates when they aren't posted in a new thread.

[RugbyLaura]

Great news Jill!

Good luck CD and Christine!

Immi had new lag straps at the last visit. They were £52 each :eek: They look much better though and are more comfortable.

[leahdragonfly]

Hi Jill,

Thanks for sharing your good news about Katie's latest x-rays. I will be very interested to hear how the out of brace x-rays go (and I think that's a VERY wise idea to check those). Wouldn't it be great if her numbers were decreased. Good luck!

Take care,

[mariaf]

Great news, Jill!!

I could not be happier for you!!

[jillw]

Thanks everybody.

Laura, I'd actually be pleased to pay 52 pounds....

I'd asked and new thigh straps are $500 and to replace the entire pelvic base including thigh straps would be $1500. It's not needed for functionality, but I thought for aesthetic purposes - especially since she changes in front of others during dance competition season and that brace is so far from the pristine white it used to be (christine, i know what you mean about tattered!) We didn't do it though - not as much because of the cost, but when I looked at our checkbook I realized that there were no checks left in it! They don't take credit cards for that and we didn't have enough cash to cover that. Really, we were quite unorganized this time. When we got to the border crossing the border agent said, "do you realize your passport is expired?" My husband and I's surprised "Whose?" must have been convincing since he let my husband into the country after he showed him a drivers license. Of course, getting out of this country isn't the hard part, getting back IN is the trouble so we spent the rest of the afternoon wondering what would happen on our return. Fortunately we were OK - the fact that the passport had expired only a few days earlier may have had something to do with it.

Sharon, are you aware of the "New Posts" function on the boards? it's across the top in the blue border next to the "search" function. That's what I always hit when coming to this board because it shows a summary of the threads that have new info since the last visit and I can decide which ones of those I want to open up and read.

Christine, Good luck with your appointment. I seem to recall that Halley has an appointment coming up very soon also.

Gayle, It would be nice to see an improvement, but Dr. Rivard had said in their experience the brace works more slowly and subtley and that they wouldn't expect to see a reduction in the curve yet (out of brace) I believe it would take at least 2 years for that. So if I see a reduction, realistically I would attribute it to the fact that the couple/few days that I'll keep her out of brace prior to xrays weren't quite enough to let her back relax to it's true curve. Nonetheless I'd LOVE to see a reduction, but I would be cautious about what they meant. It's more that I want to make sure I'm aware of what progression there might be. I scheduled the two appointments so close together so that it would be the "same" curve getting xrayed....i mean what is the liklihood of her growing and having her curve change in less than a week?

Maria, I'm actually headed to Philly for the xrays. I'm looking forward to meeting the folks down there - i'd started to post it on the vbs board but it was part of my post that disappeared and i did't have time to repost that part yet.

[mariaf]

Maria, I'm actually headed to Philly for the xrays. I'm looking forward to meeting the folks down there - i'd started to post it on the vbs board but it was part of my post that disappeared and i did't have time to repost that part yet.

I'm sure you will love the folks in Philly, Jill. Which doctor are you seeing and when is your appt.? Best of luck!!

[jillw]

Christine, so your daughter is approximately 9 years old? (just doing the math from your signature). I know Dr. Rivard said 11 is approximately when the spine growth speeds up (of course it varies based upon the maturity rate of the child). So I guess in another year things will really be telling. It's amazing that even after Dr. Coillard loosened the straps considerably that the in brace curve was only 1 degree. It must make you very happy to see her straight back as she swims. I find myself admiring straight spines in general these days....if it was my daughter, I'd be thrilled!

[christine2]

Jill

My daughter will be 9 in May. She is going to follow my foot steps and will be tall. She is almost 2 inches taller than her twin brother. My husband & I have been marking "the wall" tracking her height. We were just talking about getting on a regular schedule measuring her so we can keep track and know when to be super diligent about her brace, not that she is not compliant now.

Hey your results are amazing too. Your daughter must look as straight as mine.
I will make a mental note to make sure I have checks in my checkbook for our next visit :) We just got our passport cards. So we are safe there.

[emarismom]

Congratulations Jill!!

That is great news!! You must be thrilled. I did go ahead and get an out of brace xray at the 18 month mark. Unfortunately, the curve did not reduce at all. I am sticking with the brace and Emily is very compliant so I am hoping that at 2 years or 2 and a half we will see some reduction. Being as she will be 11 at that point, I can't see us stopping using the brace at such a tender age.

[CAmomof2]

We're flying back to Montreal Wednesday. I am guessing that the examination will be quick, refit the brace and another xray. Am I correct? Any advice on what to do in the area of the hospital while waiting for the appt? Any nice little cafe's?

We were just there yesterday (Thursday). Flew in as well. There isn't much of a waiting period. They get you in and out very quickly - a bit too quick I feel - esp.
Dr. Colliard. She doesn't seem to like many questions asked.... Not sure if anyone else has run into this???
Dr Rivard will answer anything you ask on the other hand.

Our daughter is 9.5 and has been in the brace for 6 mos now. She started out at 27* and is at 14* now. No change this visit - was told this is good as she grew 3 cm.

We are getting the blood test to see abt the progression gene (not sure what the test is called) when we go back in August. He said that they need both parents there to take blood samples as well.

Hope your daughter has good results!!!:)

[christine2]

I think that Dr Colliard is also not as "comunicative" (if that is even a word) as Dr Rivard. But I think that is how the "team" works. She does all the measurements and he does all the decifering. I am fine with that because I feel like I can talk to Dr R about anything and he will take as much time as I need. He has also called me or e mailed me anytime I had a ?.
Great results. No change w/ that amount of growth. You must be very happy .

I am going to ask about the progression test the next time I am there.

[pat]

Dr. Colliard. She doesn't seem to like many questions asked.... Not sure if anyone else has run into this?
It's truly just her English, now on the other hand, if you know French . . . . .
p

[Pooka1]

Sharon, are you aware of the "New Posts" function on the boards? it's across the top in the blue border next to the "search" function. That's what I always hit when coming to this board because it shows a summary of the threads that have new info since the last visit and I can decide which ones of those I want to open up and read.

Yes I knew about that but it seems like rather than start a thread about the visit folks tend to put Spinecor visit updates in this massive thread.

Maybe I shouldn't be starting a new thread with each visit my kids make like it's front page news?? :confused:

[leahdragonfly]

Sharon,

I don't think Jill was talking about starting a new post, she was talking about viewing the new posts each time you visit the forum. You had mentioned that sometimes you don't see updated posts on the SpineCor thread or something along those lines. I know I always go right to the 'new posts' tab when I visit, to see which threads I want to read.

[Pooka1]

Ah I was unclear.

I do go to"New Posts" but I don't always read the Spinecor thread new posts because I didn't realize until recently that most folks with kids in Spinecor put their updates in that thread rather than starting a new thread.

[jillw]

I was going to say what Pat said....my sense is that Dr. Rivard is more comfortable speaking English than Dr. Coillard. I think Dr. Coillard's english is EXCELLENT and I wish I could speak french even a tiny fraction as well as she does english - but I get the impression she's not as comfortable with english as is dr. rivard.

Sharon, it's almost like this thread has evolved into its own forum - but instead of being a technically separate forum like say, the vbs forum, it's housed here in NSF. I know some don't like it, but, personally, I like that everyone posts in the same spot with results for spinecor and such. When my daughter was first diagnosed it was WAY easier for me to follow people's progress since most of the spinecor people posted in one place. Yes, reading through gazillion posts was time consuming, but because they were in mostly one place it actually took a fraction of the time it would have taken if there were 200 different posts with different questions about spinecor or different updates for the patients (and I could always skim through less relevent ones. However, you are correct in what you have recently figured out that most updates are posted here.

I think it's different in your case since there isn't really an equivalent "night bracing" section and maybe its not needed since it is more mainstream? In general, it seems like spinecor and vbs folks (on the separate vbs forum) post results after every visit, mainly I suppose, because they are newer treatments and this anecdotal evidence is interesting. I wish more who were in night braces or boston braces kept us updated on how their curves were doing from visit to visit-so you continue to post your front page news!;)

Christine, I guess I hadn't realized our daughters are the same age. So we'll both start to sweat profusely right around the same time! :eek:

emarismom, it makes sense there wasn't reduction - typical with their experience before a couple years or so. Dr. Rivard said that they used to take annual out of brace xrays in the earlier days and from this they realized that any potential corrections take longer to stick (my paraphrasing). However, they would prematurely lose patients who were discouraged that the in brace correction wasn't holding a year or so into it and that out of brace xrays showed curves at approximately the pre brace levels. I consider holding at pre-bracing levels to be a victory, personally, so it wouldn't deter me. However that doesn't keep me from hoping for a true correction over time.
sorry for the overabundant use of emoticons...i'm feeling more like my daughter than a middle aged woman at the moment. must be the spring in the air....

[CAmomof2]

In case anyone was wondering if the brace "sets off" the metal detector at the airport - it doesn't!! My daughter walked right through but they had to scan me!!! :) We had a laugh over that!!

[christine2]

Hi all

We had a re check on Tuesday, My daughter is still holding at 1 degree!!

My daughter adjusted very well to her shiney new brace. Her new brace is a bit larger and snugger. Spinecor now has a a bodysuit with shorts. My daughter LOVES them.

[CAmomof2]

[QUOTE=christine2;74820]Hi all

We had a re check on Tuesday, My daughter is still holding at 1 degree!!


Congratulations!!! Wonderful news! :)

[BellasMom]

Christine, this is great news!!!! Congratulations!

[concerned dad]

yes, congratulations Christine.

I'm curious (if you feel like sharing), any talk about what to do next?

Dr Rivard told us that if we took my daughter out of the brace before Risser 4 she would loose all correction and it would be as though everything she had done would be for naught. I didnt really buy that (mostly the Risser 4 -vs- say, another measure of skeletal maturity such as a DSA) but we discussed it at length.

[CAmomof2]

CD,
We were told that it takes about 18 months for the brain to be "retrained" to hold the muscles / body right. I'm not saying that is all our daughter will wear it for - she is almost 10, so lots of growing to do!

[samsdad]

Hi. My 8-year-old daughter, Samantha, was recently diagnosed with juvenile scoliosis.

Quick family history: I also have scoliosis. It was not detected until my mid-teens. I had no treatment until age 22 when I underwent spinal fusion surgery in 1985 (47 degree pre-surgery curve) and attained pretty good correction (about a 10-15 degree post-surgery curve).

Needless to say I was devastated to confirm what I had long feared -- that I would pass my condition/burden on to my children. Given my history, I think I am at least subconsciously sensitive to my children’s posture. About 4 months ago I took my daughter roller skating and spent about 2-hours skating behind her and noticed a slight asymmetry. Her 8-year-old check-up was coming-up so I made a note to ask our pediatrician to do an evaluation. The pediatrician agreed that there appeared to be a slight rib-hump and recommended I take her to an orthopedist.

She had an appointment with an orthopedic surgeon on April 2nd - the same doctor that performed my surgery. He took front and side x-rays and measured her curves as:
19 degree Left Upper Thoracic
22 degree Right Middle Thoracic
1+ rotation
Some hypokyphosis (slightly flattened)

The orthopedic surgeon recommended that we wait and watch for now. We have a follow-up appointment in July to see if the curve has progressed. The doctor indicated that if the curve does progress he would likely prescribe a Boston brace. I had done some research on my own prior to our appointment and asked about the Spinecor brace as an option. He said it wasn’t proven yet and that his practice goes exclusively with the Boston brace.

Both my wife and I are not in favor of putting our young daughter in a hard brace for what would likely be many years given her age. As far as we can tell, our only other options to a hard brace at this time are either the Spinecor brace or vertebral body stapling (VBS). Of those, Spinecor is our first preference since it is non-surgical and we would likely only consider VBS if the Spinecor brace was unsuccessful in stopping the progression of the curves.

We decided to send Dr. Coillard and Dr. Rivard an email describing Sam’s case to see if they would consider accepting her as a patient. I couldn’t believe it when Dr. Rivard called us later that same night and then called me back the next day to schedule a brace fitting appointment. We go to Montreal on May 7th! Given this I’m not so sure I will keep our July appointment with the orthopedic surgeon; I certainly wouldn’t want more x-rays taken in addition to ones that will be taken in Montreal.

I’ve spent some time reading this thread on the forum and I’m impressed with the support and knowledge you all share. Does anyone have some advice on how to make that first appointment go smoothly for my daughter? Also, we are driving from NJ (I think it’s about a 7 hour drive). We plan to drive more than half way, stay overnight at a hotel, then drive the last couple hours the next morning of our appointment. We then plan to spend one night in Montreal (to be close to the hospital in case we encounter something with the brace that first night that we would want help with) and then drive straight home the next day. Can anyone recommend a hotel about 2 hours outside Montreal (coming thru NY)? How about a hotel in Montreal near the hospital? Also, I noticed the post above regarding a body suit with shorts (Christine2). Do you get some of those as part of a fitting appointment? I could go on and on (I probably have a hundred questions) but I better stop for now. Thanks in advance for you support!

[christine2]

Samsdad

We either stay in Plattsburgs NY or Old Montreal. There is a very nice hotel, Springhill suites in Montreal. You can walk to the science center, lots of resturants, ect.. Plattsburg I am not sure, the last hotel we stayed in was a bit runned down. I am going to look for a nicer one.

You get 1 bodysuit with the brace. The last time we were there we bought 4 x tras. They are expensive $60.00 a piece. Bodysuits is a real problem for us. My daughter only like the spinecor suits.

[concerned dad]

Samsdad,
earlier in this thread I mentioned using priceline to stay in Montreal.
here (http://scoliosis.org/forum/showpost.php?p=69761&postcount=3515)
I dont recall seeing many (any?) hotels near the hospital. The Hyatt I mentioned and "Old Town Montreal" Christine mentioned are east of the hospital in areas (in my opinion) which would be preferable to stay (more to do and see).

Also, You can get your xrays in Montreal and share w/ your local doctor. They (St Justines) use a low dose x-ray machine.
You will likely have a follow-up 4 - 6 weeks after your initial fitting.

There are a lot of folks here who have children Sams age who have reported very good results with the Spinecor.

[jillw]

Christine, Great news!!!! I'm very glad to hear it!

On our last trip we got some of the newer "shorts" type bodysuits - but unlike your daughter, Katie hates them. She finds it harder when using the bathroom in them because the "flap" that you unhook isn't as long. Usually she pulls her bodysuit up and away and tucks it into her brace to keep her hands free (yet her bodysuit clean). This "flap" on this one isn't long enough. It's a bummer because we bought several shorts bodysuits and no regular ones at our last visit. I should have just bought one to see how she'd like it and stocked up on a couple of the older, tried but true ones. It's all a matter of personal preference I guess! Speaking of which, I've been meaning to go back to that bodysuits webpage to see if they ever did start selling bodysuits in children's sizes. We simply don't have enough "regular" bodysuits to last us until our next trip.

Samsdad, we have stayed at Springhill Suites while in Montreal also. Nice facility and nice cute location (the kids say the neighborhood reminds them of Hogwarts with its stone buildings). Nice tourist diversions right in walking distance. We have also stayed in Ruby Foos. We stay there when we are doing a quick over nighter and not going to have time to enjoy Montreal. It is much closer to the hospital and tends to be quite a bit cheaper also (not near points of interest; more near highway, strip malls etc). They have 2 grades of rooms. If you were to stay there, you might want to consider spending a little extra for the higher grade room (i forget, is it called deluxe?). Those rooms have been recently renovated and are very clean and modern whereas the other rooms, while adequate, are older.

Regarding hotels on the way...2 hours out is kind of tricky because it's fairly remote going up I-87 in that part of upstate. As Christine mentioned, Plattsburgh is a fairly developed area and would have several hotels/motels to chose from, but that is closer to Montreal than what you were looking for...it's approx 65-70 miles from montreal although it does take some time with the border crossing and all. What would you all say, is it 1 1/2 hours or maybe a little more from plattsburgh to the hospital?

South of Plattsburgh is pretty rural so don't know what lodgings are offered. Next closest "developed" area would be the Albany/Saratoga Springs/Lake George Corrider which is approximately 3-4 hours away depending where you stay. We live near Albany so I haven't stayed in hotels here, but there would be numerous hotels right off of I-87 near Albany, Latham, Clifton Park , etc. Of course that would leave you a longer drive than you want the next day.

My daughter is a similar age/curve size as your daughter (you can see more details in our signature, below). We also went through a similar thought process as you state. You say you've been reading the forum so you are probably already familiar with Shriner's Philly. They don't do spinecor, but they are the inventor's of VBS. However, in addition to VBS, they are a great resource for everything outside of spinecor. They try to think outside the box and come up with a customized solution (to the extent possible) that will work for a child and they are on top of (and/or behind) the latest scoli research. Did the orthopedist who diagnosed her say anything about getting an MRI? Although some doctors differ on their protocol, I believe it's fairly standard to have a full spine MRI when a young child is diagnosed with scoli (i.e. JIS not AIS). This is to rule out other underlying conditions which may be contributing to the scoliosis such as chiari malformation/syrinx, tethered cord, neurofibroma. Especially when there is a left thoracic curve - so I'd imagine that it would be warranted in your daughter's case. A question to ask the various orthopedists you meet with anyway....

Good luck! Let us know how it goes.

[concerned dad]

Jill,
if you feel like sharing, I would be interested to hear details about that March 09 out of brace x-ray.
I would have expected (hoped) for a lower number (of course it could have been double that had you never braced I suppose).
How long out of brace and who did the xrays?
Did Dr Rivard offer any comments/analysis?
CD

[samsdad]

Thanks everyone for the hotel information. Plattsburg and Old Montreal sound like the right option for us. We'll look into the Springhill Suites and also see what is available via Priceline.

Did the orthopedist who diagnosed her say anything about getting an MRI?
jillw -- Yes, he prescribed a full spine scan (actually 3 separate scans) just "to be safe". At the time he didn't indicate that he had a specific concern or noticed some symptom, but I figured we'd do it as part of a normal protocol. Then when I called to make the appointment and was told that due to my daughter's age they may need to sedate her (or break it up into 2 or 3 separate appointments) because it would be more than 2 hours in the tube, I had second thoughts. My wife and I decided not to go ahead with the MRI because it seemed to us it was a "just covering my butt" kind of procedure for the Dr. I will do more research on the need for an MRI given my daughter's age and ask the doctors in Montreal what they think. Thanks for the insight.

[jillw]

Hi Concerned Dad,

Sorry- can't remember where I have posted what! Before we got out of brace xrays, we had asked Dr. Rivard what he would expect to see if we did it. Dr. Rivard had said that after 3 days out of brace, they would expect curves to revert to their original level at this stage in Katie's treatment. That is exactly what happened. She went 3 days out of brace and her curves were basically the same. The upper curve was measured at 20 degrees and I didn't write down what the lower curve was at but remember thinking it was also pretty much the same (maybe also a degree different) Dr. Rivard's group have found that curve improvements (which isn't a guarantee but something that spinecor has been found to deliver in some cases) generally don't show until the child has been in the brace longer and is closer to weaning. In the beginning, they used to do out of brace xrays also and this is how they learned that. They stopped out of brace this early in treatment because they were quite confident on their experience that if an out of brace curve was progressing there would surely be an in brace progression as well (and presumably to limit radiation exposure also?). On the other hand, some parents were disappointed that curves were unchanged instead of permanently reduced earlier in the treatment. It makes sense to me that curve reductions in spinecor wouldn't "stick" until after a while....a hard brace can often give a partial correction that will at least partially "stick" after 1-2 days out of brace. However, my understanding is that spines often become less flexible during full time bracing (not sure if that's the case for overnight only bracing). So a hard brace could move a curve into a better position and as the spine becomes less flexible the curve holds (until 2 years or so after bracing ends which is the period I have read it takes for hard braced curves to settle in to it's "true" curve). On the other hand, the spine remains very flexible in spinecor - so you won't have a bit of "stiffness" to help hold a curve in the earlier stages. That's my supposition, anyway. What's interesting is Dr. Rivard says 3 days out of brace. Other docs say 1-2 days. I'm curious if I had kept her out for, say, 36 hours if I would have seen another number. Next time she gets out of brace xrays I might do that just to get a feel for what is going on.
If my plan was to keep katie in spinecor no matter what (even if there was progression), then I don't think I would get out of brace xrays...I'd limit her radiation exposure. However, I do have VBS in the back of my mind and there is a limited window of opportunity there that I wouldn't want to miss so I do want to supplement with occasional out of brace xrays also)

[christine2]

Excellent posts Jill. I have to say I am happy that my daughter is getting most of her x rays in Canada using the Q Scan.

[jillw]

Christine, I fully agree - I can't help but worry about the radiation exposure over the years, but am happy that all the montreal xrays expose her to a lower dosage of radiation. I'd read somewhwere that that machine might be coming to the states soon, but dont know if it has yet. Hopefully it will become more widespread in children's hospitals so others can benefit as well.

[jillw]

Has anyone ever needed spinecor bodysuits between appointments and if so, what have you done? If I send a check will Montreal mail them to me? (I wish they took credit since that would speed up the process). How much does shipping throw on top? Does it take a long time to get through customs? thanks!

Sams Dad, We struggled with the same issues you bring up regarding my daughter's MRI. She is 8 like your daughter and I couldn't possibly imagine she'd be able to stay still for 2 hours in an MRI machine, but I was told if she was sedated it would be general anesthesia and I didn't want that either. Sometimes there is a middle ground - some people's pediatricians have written prescriptions for one oral dose of Ativan which has some anti anxiety and mild sedative properties. I had asked about people's experiences here and on the vbs website if you want to see how others with young children did it (http://support.vertebralstapling.com/User/Discussion.aspx?id=161431 and http://www.scoliosis.org/forum/showthread.php?t=8600&highlight=experiences)

We decided to try it without sedation and see what happened. My daughter is 8 like yours and also required a full spine MRI (i.e. technically 3 MRIs) They scheduled 2 hours for it. My daughter was anxious about her ability to stay still - but we talked about how it worked and we discussed it with the technician who agreed to ask katie every 10 min or so if she needed to scratch or wiggle a tiny bit. I was surprised (and thrilled) at how well it went. We brought a fleece blanket from home and they covered her with a blanket as well. They also put little wedge pillows on each side of her head to help hold it in position. Because she was warm and cozy she eventually went into a zone and towards the end even dozed off (unbelievable given the noise, but true; others posted the same experience) The time she spent in the MRI tube ended up being much less than 2 hours (about 65-70 minutes) . I think the 2 hours allows a cushion for if they have to retake a bunch of screens due to moving. They did have to retake one screen for my daughter (when her foot started to twitch as she was falling asleep) so I guess it technically could have been less time. When I scheduled the MRI, I had suggested that they schedule 1 session, take someone else in so we could take her to the bathroom, eat, let her wiggle and then finish about 45 minutes later. They didn't want to do that and it annoyed me. In hindsight, they probably realized it would go much faster if they just kept going instead of having to set things up again. Plus we went on a Saturday when it was much slower at the hospital so my guess is that if she had really needed a break, they could have squeezed one in. You can PM me if you wanted more details on how we prepared her, etc.

[jillw]

Sam's Dad, you might have to register at the VBS forum in order to see the post - but it's easy and free. There were more responses from those with younger kids there because usually an MRI is part of the VBS pre-op.

[christine2]

Hi Jill

I called Montreal and they sent them to me, I sent a check after getting the bill and the bodysuits. It did take a while for them to get to me, a couple weeks, Not sure if it was because of customs or the secretarys slow response. I believe the Docs are out of the office untill early May now.

[jillw]

Thanks Christine - was "international" shipping very expensive or was it comparable to a similar package sent in the states?

[christine2]

Jill

I really don't think they charged me for shipping, mistake perhaps, not sure but I'll take it.

[RugbyLaura]

Immi's review tomorrow - 22 months into treatment. Hope you're all well.

Laura x

[CAmomof2]

Immi's review tomorrow - 22 months into treatment. Hope you're all well.

Laura x

Laura,

Hope everything goes well tomorrow. We'll be thinking of you both. :) S.

[Pooka1]

Immi's review tomorrow - 22 months into treatment. Hope you're all well.

Laura x

Good luck, Laura!

[jillw]

Laura, How did it go? Good I hope.

[RugbyLaura]

Hi all, Have just got back from seeing Blood Brothers at a local theatre (or theater to you!) - which has not improved my mood.

The appointment went reasonably well. Was an interim visit (the one with no xrays) so no curve measurement.

Immi got a completely new brace as her old one was both far too small and a mangled wreck. Not lookng forward to the bill!

Good news was that her rotation was down from the previous visit - not quite down to last year's level, but a significant improvement on both October's and February's measurements.

One large worry though is that the secondary 'compensatory' curve, which is very high - C? - looks worse. We are keeping an eye on it and he has adjusted her brace so that her shoulder is not pulled so far down. He said that this is rare - only happens in 2% of cases. I have to admit that we are worried. Sounds like Lisanna all over again...

Perhaps it's something to do with ballet dancers.

Thanks for your good wishes.

Laura

[concerned dad]

Thanks for the update. Good news on the rotation.
Can you elaborate on Lisanna?

You mention the new brace and the costs. Insurance doesnt cover it in the UK?

[Pooka1]

Laura,

Good news on the rotation.

Compensatory curves are not an issue as far as I know. Someone correct me.

I mean both my daughters have (had in Savannah's case) a second curve that is compensatory and the surgeon never mentions it.

[RugbyLaura]

Hi,

Lisanna is the daughter of Gerbo - the founder of this thread. Lisanna developed a worrying cervical curve whilst wearing Spinecor. This curve grew to become bigger than the original thoracic one. She is a beautiful ballet dancer and is about 3 years older than Imogen.

We pay privately for all of Immi's treatment - we could get it free on the NHS but her grandfather prefers it this way (and is paying for it!).

Laura

[concerned dad]

Thanks Laura,
I searched back and found the last update here (http://www.scoliosis.org/forum/showpost.php?p=54144&postcount=2752)
Boy, this thread is full of so much heartbreak and promise.
I wish the best for everyone.

[emarismom]

Laura,

Glad to hear the rotation has lessened. The compensatory curve is an issue, I'm not sure how I would repond if Emily were to start to develop one.
I believe Immi got her brace one week after Emily did, to date we are sticking with it, although recently I have been having second thoughts. We will be going to see her orthotist on June 24. So I guess we will continue on until then. Summer here in Miami with a brace is difficult. This week the temps have been in the low 90's. Though Emily hasn't complained at all, I feel badly for her.

Sharon,
I think the concern with the compensatory curves is that they develop after (as a result of?) treatment with Spinecor. Are we trying to fix one, while causing another?

[Pooka1]

Sharon,
I think the concern with the compensatory curves is that they develop after (as a result of?) treatment with Spinecor. Are we trying to fix one, while causing another?

Okay someone correct me if I'm wrong but compensatory curves go away when you address the structural curve. That's why they are called compensatory, yes?

For example, my daughter's compensatory L curve completely disappeared when her T curve was fused.

The surgeon never told me a measurement on the L curve at any point on either girl though they both had/have obvious second curves. That's why I don't think surgeon's are concerned by them.

My one question is do compensatory curves ever become structural by sheer dint of time? That is, if you don't fuse a T curve fast enough, can the compensatory L curve become a structural curve? That would be a reason not to delay fusion surgery all else equal I would think. I need to bring that up at Willow's next appointment... we may be wasting time in this brace.

[emarismom]

None of the doctors I have seen have ever commented on Emily's comp curve, except to measure them and say that it is there. They have basically disregarded the comp curves. I think the "issue", if it really is even an issue, came up several years ago when several parents on this thread noticed that while in the Spinecor brace, their children's comp curves began to move in the wrong direction. Most often those curves were in the upper thoracic or cervical areas.

I think there was also some type of study at one point that suggesested that the Spinecor was the cause of the changes in the curve. Thus some parents were worried, rightfully so, that the treatment may be causing harm.

This is going back probably about a year and a half ago or so, you may want to do a search on this thread of compensatory curves or something like that, as I really don't remember the details.

"we may be wasting time in this brace." originally posted by Sharon

I'm beginning to think that this may be the case in my situation to. Although with my daughter being so young, I don't see where I have any other "viable" options.

[Pooka1]

"we may be wasting time in this brace." originally posted by Sharon

I'm beginning to think that this may be the case in my situation to. Although with my daughter being so young, I don't see where I have any other "viable" options.

JIS is a harder situation than AIS but there are still options it seems. Bracing with a soft brace is not out to lunch at this point in my opinion.

Once the Chiari is fixed, do most curves stop progressing? I would think so but what do I know?

Good luck.

[jillw]

Laura, I'm glad the rotation is better, but bummed to hear about the high thoracic/cervical curve. You say it looks worse - did she have one all along or did it develop after spinecor? Did they see what appeared to be the worsening curve while she was in her brace or did it not show up until she was out of it? sigh - i hope when you go back you find out the curve is not bigger. did the dr. seem concerned about this? Is he aware it has been an issue for others?

[emarismom]

Sharon,

The hope is that once the Chiari was fixed, the scoliosis will improve or stabilize. Which has been the case with Emily. She improved some and has been stable. The problem is that IF a chiari related curve begins to progress, it usually progresses very rapidly until surgery is required. The short term studies 1-4 years post op (cranial decompression) seem to indicate that stabilization/improvement is the norm. The longer term results are not as consistent and there aren't very many long term studies.

My hope with the Spinecor was first and foremost to by time, which so far we have done. Then of course to see some improvement in the curve, which in brace may be happening. However, I did have an out of brace xray last year which was the same as the pre bracing number. So the jury is still out on if the brace is really having any effect.

Since it is not having any really negative effects and compliance hasn't been an issue, I've stuck with it. It is hard though in summer. I just keep thinking she is entering a major growth spurt soon and don't want to take her out at exactly the wrong moment.

[RugbyLaura]

C curve was first noticed about 6 months into Spinecor.

It appears to have grown worse.

Mr Mills draws little Xs on Immi's vertibrae and at this visit pointed out that one is quite obviously out of sequence with the others - I would say somewhere around C5/C7. He said that this indicated that something structural was going on. We are feeling a bit flat about it all at the moment.

Immi has had enough of the whole brace thing after nearly 2 years (and I guess she's at that age now where appearance is becoming more important and she is starting to question things). I have just spent half an hour mopping her tears and telling her to just hang on for a bit longer - this is hard to do when you don't even know whether the brace is now doing more harm than good.

I have loosened the #4 strap that was pulling her shoulder down and am letting her have vast amounts of time out of brace. Am I a bad mum?

[Pooka1]

Am I a bad mum?

NO!

Go with your gut.

[emarismom]

Laura,

You are a wonderful mother! You have spent countless hours searching for help for your daughter, that doctors are unwilling or unable to provide! I have gone through this journey with you for the past two years and a "bad mum" you are definitely NOT!!

As I said earlier, I too am having my doubts at this point. You need to do what you feel is the right thing. Have you considered taking Immi to another orthopedic and having an out of brace xray done to have a comparison. I did this last year, and am considering it again. The thought of exposing these girls to more xray radiation is scary, but my ortho once told me that she is exposed to 4 times more radiation simply flying cross country. Since we fly often, I'm beginning to wonder if having an extra xray or two is really such a big deal.

[jillw]

Laura, you are NOT a bad mum!

So when Dr. Mills said he thought there might be a structural component, did he address whether he thought the brace was causing it? Did he loosen the number 4 also?

You know, since you're giving her some more time out of brace anyway, maybe you should take it off for a couple days and get an out of brace xray to get a sense of the magnitude.

It is so hard sorting through all the decisions we have to make. When Katie was first diagnosed i wished she didnt have itat all (as i'd guess we all did). Now that Ive accepted that she has this, I wish that she was 12 when she was diagnosed with her 19 degree curve...

[RugbyLaura]

Thank you my lovely friends.

I am feeling a bit happier this morning - you know how it is; it breaks your heart to see them so sad.

Mr Mills did adjust the brace - #4 now does up at the front, so wraps around her whole body. His reasoning behind this was to pull the shoulder back rather than down. My husband said that he became a little more sceptical at this point and felt that there was an element of making it up as he goes along. I'm sure that this is not true, but it is unsettling.

We are going to wait until we see her consultant in early August before making any drastic decisions - in the meantime we shall be more relaxed about the brace. We have moved our holiday to after the appointment just incase we end up taking it off altogether!

Thank you for your support! It's so good to 'talk' to others who know how this whole thing feels. I have plenty of good friends who are very caring and (mostly) sympathetic but they don't *really* know what we're going through.

I also feel very about guilty voicing my doubts on a public forum - Spinecor has been wonderful for Immi; her life has been much more bearable than it would have been with the rigid alternative. I don't want our experiences to put people off - but I do think that we have a duty to report all experiences; good and bad.

Laura

[mamandcrm]

Hi Laura,

I just wanted to let you know that I, for one, really appreciate your candor with both the good and the bad, and I'm sure others do as well. We are all trying to make decisions based on very murky information and the experience and reporting of people who are trying various devices/methods is invaluable. So thank you.

[concerned dad]

I also feel very about guilty voicing my doubts on a public forum - Spinecor has been wonderful for Immi; her life has been much more bearable than it would have been with the rigid alternative. I don't want our experiences to put people off - but I do think that we have a duty to report all experiences; good and bad.



Ditto that for me.

[samsdad]

Samantha had her brace fitting last Thursday, May 7th, in Montreal with Dr. Rivard and Dr. Coillard. The trip went well. Getting to and into Montreal from NJ was no big deal. It is about 420 miles.

Going into this appointment we were assuming that Samantha’s two thoracic curves were both structural, which we understood would have made this brace less effective in stabilizing or correcting her curves. We got some really good news when Dr. Rivard told us that her middle right thoracic curve (apex at T8) was structural but that the upper left thoracic curve was a compensatory curve. It was actually sweet how genuinely excited Dr. Rivard was to find this out and tell us the good news. He seems really relieved and more confident that the brace could help.

Out-of-brace her curve measured 24 degrees, in-brace it measured 12 degrees. My daughter is adjusting pretty well to the brace, though somewhat uncomfortable at times and a bit of a hassle to fit into her daily routine. You all know the routine; we go back to Montreal for an initial evaluation/adjustment in 5 weeks (June 11th) and then we will go back every 5 months for the same until treatment is done. Now I have to see what Aetna will cover – I’m pretty sure there is a clause about not covering out-of-country treatment, though I’m hoping the brace itself may be covered.

We do have some questions about the brace fit/comfort to anyone with experience that may be able to answer.

- Initially Sam was walking like a cowboy, all bow legged, saying the thigh and crotch bands were uncomfortable. She has gotten used to them being there more since last week, but occasionally walks a little stiff legged or wide. She also tends to bend with her legs wide to pick something up. Is this an indication that something is not fitting right or will she simply get used to it and start walking/bending more normally.

- She played her first softball game in the brace on Monday night. She had no problem throwing or swinging a bat that I could tell, though again her running and bending was stiff. Thinking about it after, I can understand how her running stride could be hindered since her thighs are tethered to the brace’s base. She was supposed to have “full range of motion” in the brace – does that include all out running? Again is this something that she will simply get used to or is it an indication that something is not fitting right?

- When Sam unsnaps the crotch bands and sits to go potty it seems that the base rides up little. This seems apparent because when she goes to re-snap the crotch bands they are tighter. We have been trying to re-shift (push down) the base lower on her hips (it will only move slightly) before re-snapping the crotch bands and that seems to do the trick. But, is it normal for the base to ride up slightly when the crotch bands are unsnapped and she sits to go potty?

- This morning for the first time Sam woke up with some red marks caused by, I believe, her crotch bands. I assume the brace rode up during the night. How tight should the crotch bands be between her legs? Should they touch her skin or should they have some slack so as not to touch the skin between her legs?

Finally, thanks all for the conversation above regarding the Spinecor potentially aggravating upper compensatory curves. Since Dr Rivard declared Sam’s upper curve non-structural he did not even give in or out of brace measurements on it. I know from Sam’s initial diagnosis in April that the upper curve was measured at 19 degrees. I will do what I can to research this concern and certainly ask the docs in Montreal about it. I think I will insist that they track the upper curve measurements as well.

[CAmomof2]

samsdad,

The way you described your daughter walking / running etc. sounds normal to me. It is the way our daughter reacted too! She will get "use to it" with time. The crotch straps should be a bit loose. They should not rub her skin, and yes the base does ride up and we were told that it is normal and not to worry. Feel free to ask any more questions... :) S.

[christine2]

Excellent news Samsdad

It does take a bit to get used to, my daughter is even able to do cheerleading in brace, her back bends need a little work but she is getting there. My daughter has a small compensatory curve. I don't think it has ever been measured either. I watch it at every x ray and don't see a change in my eye but will watch it also.

My daughter does not undo the crotch snaps at all. She discovered this herself. No problems so far. We also had some redness from the crotch bands there is actually some thickening of the tissue in that area now so she is not bothered by it. I was told by (not sure who) that you can criss/cross the straps too.

[RugbyLaura]

Hi Sam's Dad,

Immi did walk like a cowboy to begin with, but soon got used to it and now I sometimes can't tell whether she's wearing it.

Immi had problems with the crotch straps rubbing in the early days. The skin has toughened up she's had no more problems in that area. They should not be really tight though - the pelvic base should not be using them to remain in place.

Movement will become easier and more natural in the brace - but, in my opinion, there will inevitably be some loss of freedom / flexibilty / extension because of the brace. Immi takes hers off for 'important events', ie when she wants to be able to run at her fastest, etc.

Glad Sam is getting on well.

Laura

[jillw]

Wonderful news that the high the other curves are not structural! And that's a great initial correction. If you check my signature you'll see that we had similar initial results and then it went down even further a month later.

Ditto the cowboy walk with Katie. It does get better, but even to this day she does walk a little bit different.

I thought the crotch straps would be snug...even if they had been set looser, the pelvic base would then ride up higher as she moved, thus making the crotch snaps snug again. That is the "problem" area for us. It's not a huge problem, but as Christine mentioned, there is some thickening of the tissue . I have read of similar issues with TLSOs, and the advice there is NOT to put soothing lotions on the trouble spot because it softens the skin instead of making stronger. For the hard braces I have even read recommendations of putting rubbing alcohol on trouble areas to help the skin toughen up quicker (but I didn't do that for my daughter given how close that area is to parts that I wouldn't want exposed to rubbing alcohol). We generally try to do less, so her body could adjust, but there are times when it seems extra sensitive and then we put a big bandaid where the strap hits to lessen the rubbing. - maybe when your daughter will be doing a lot of running it and has multiple games in a tournament it might make sense to protect that area with a bandaid or moleskin. My daughter has been running daily half miles in gym class recently (trying to beat a time so although not a sprint, it's pretty much all out running) and she has been OK (so far at least) Her skin around there , though, is always pinker than the other areas.
I'm just re-reading your post...in your fourth bullet point did you mean the thigh bands rode up? Or was it the crotch straps (which are already right up there)? If the former, the thigh straps were a bit of an adjustment at first, but they don't bother her at all anymore (altlhough if you look closely she also a little pinker in that area as well)

But overall, over the next couple weeks I would expect her to become more natural with her movements while in the brace.

[Mom_15]

Last year we switched from the Boston Brace to the Spinecor brace. We were not seeing any correction in the Boston Brace, in fact the curve progressed. Since wearing the Spinecor brace, we have seen consistent improvement in both curves and rib displacement. In addition, her quality of life has improved. The Spinecor brace is less noticable under clothing, and allows for more freedom of movement.

We highly recommend the Spinecor brace over the Boston brace.

[jillw]

Hi Mom_15, Welcome to the forums. I saw elsewhere that you posted your daughter has a checkup coming up...good luck! I'm glad to hear spinecor is working for your daughter.

I'd love to hear more about your experiences. How old is your daughter currently? How long has she been in the various braces? How large are her curves currently (and what were they in the past). It's always nice to have new input here. I'm guessing you don't go to Dr. Rivard since you go in for more frequent checkups than they do - do you have to travel far for her treatment?

[Jenmom]

Hi everyone,

It has been some time since I have posted. Jen went to her appointment with Dr. Chang on Monday and had a hand xray to see if she has stopped growing and he said she has (she is 14 now). He did an out of brace xray and her curve was 17, he did not do an in brace xray. He said at 17 she should not have to worry about her curve as an adult. She has to wear her brace full-time until December and then wean off six more months and she is done. We are very excited!!

Kathy

[CAmomof2]

Jenmom / Kathy,

Wonderful news! Thanks for sharing - it gives hope for the rest of us! What was your daughter's degree of curvature when it was 1st discovered? What age was she? I bet she is counting down the days!! Congratulations! :) S.

[jillw]

Kathy, great news! I also am curious about how old she was/how big her curve was/etc. How exciting it must be to see the light at the end of the tunnel!

[samsdad]

It’s been some time since I last posted. Sam just had her 1st 5-week follow-up/adjustment appointment in Montreal. Based on the further correction achieved by some of the younger kids described in this thread we had hoped for some more in-brace correction compared to her initial brace fitting. That didn’t happen, but we are very thankful that her curve is holding at 12 degrees. It’s probably not likely that we’ll see any more correction, but if she can hold under 24 degrees by the time she finally stops growing (like 6 or so years from now) we will be very pleased.

Dr. Coillard adjusted bands 3 and 4 to be tighter. She positioned them further back where they attach to the bolero at her shoulders. This has caused the brace around her shoulders and neck to be a little more conspicuous. It tends to shift closer to her neck on her left side so now you can see the edge of the brace with collars on shirts that didn’t show the brace before, which has been a little upsetting to Sam (and my wife since these shirts were bought specifically to help hide the brace).

Other than that, Sam has been adjusting to the brace better than we would have expected. I’m sure that I am like many other parents on this site who are thoroughly impressed and proud of their child for dealing with this so amazingly well.

It’s taken these 5 or so weeks for my insurance company to finally make a decision (EOB for those familiar) on my claim for the Spinecor brace. Their verdict: Not Approved. Their reason: “Experimental services and supplies are not covered under your plan…” Apparently the only braces that Aetna considers to be medically necessary for the treatment of scoliosis are the Boston, Milwaukee, and Charleston braces. They consider Spinecor, Providence, Copes, and Rosenberger to be experimental and investigational.

So now the long hard, and probably fruitless, appeal process will begin. That’s OK; I didn’t have anything else to do ;)

[christine2]

Good news Samsdad

This post must be quick, getting ready for wrk/school. My husband has been fighting the insurance company for a # of reasons one being Spinecor. He has been very diligent and winning. Don't give up!!!

[RugbyLaura]

Hi All,

Had Immi's 2 year (actually 2 years & 2 months) appointment today.

Curve measured 35 degrees in brace. Sounds bad but is really not too awful. The brace has done a great job up to now and she's still in with a shout of avoiding surgery.

Compliance has been a bit of an issue recently, but we'll have a go at being better for the next six months.

Laura x

[jillw]

Hi Laura, thanks for keeping us updated. I wish your news was better, but as you point out, it's not the end of the world, either. How is her cervical curve looking - I know that had been a concern or yours at the last interim visit? I wonder if the adjustments they made to address that cervical issue gave up some of the correction with the primary curve - which would be a fair trade off in my opinion. Did her rotation go up from the previous visit (hadn't it gone down at the previous visit)? How does Immy feel about trying to wear the brace more after having a bit of a "holiday" from full time wear. At least she had some more out of brace time during the summer-that's the hardest time for bracing, isn't it? Also, curious, had she grown more than usual between visits...I guess she's at that age... I have a lot of questions don't I?

Well, good luck with the compliance!

[Pooka1]

Hi Laura,

I agree you might still dodge the surgery bullet... still low enough.

Do you have Risser or other bone maturity indicator?

Willow has an appointment next month and I expect to hear she is done growing but we will see.

[christine2]

Hi Laura

I wish you had better news. We have been less compliant as well, both due to the weather and also my daughter has a pretty good skin irritation on her upper thighs. She torrorates the heat pretty good although we have had a mid summer so far. once Fall comes you can go like gang buster with compliance :)

Bodysuit issues
anybody come up with anything new?????

Her bodysuit keeps riding up so the brace is acutally touching her skin. I have kept her out of brace at night a few times. The bodysuit issues are ticking me off. We are going to try Med size, she is now in smalls. We tried the boxer legged spincor suits but my daughter does not like them.

I have tryed to have some suits custom made but my daughter does not like them. She only likes the spinecor suits but I don't.

[RugbyLaura]

Jill - The cervical curve actually turns out to be a very high thoracic curve. Her consultant is not concerned by it at all - said that, IF surgery becomes necessary, he could deal with it usiing "a couple of implants" :eek: I shall investigate this further IF the time comes.

I wonder if the adjustments they made to address that cervical issue gave up some of the correction with the primary curve - which would be a fair trade off in my opinion.
Spot on! Exactly what was said by both Mr Mills and the consultant.

Rotation holding at 10 - 12 degrees. Top & bottom rotation had disappeared (probably due to above). Consultant called her rotation minor, which I debated with him. However, he said that as I'm her mum, he'd expect me to feel that way but that really she is doing very well rotation-wise and that many children would be happy to be at her level AFTER surgery.

Re growth - she has grown about 3cm in 3 months and is in the middle of peak velocity. He expects her to grow another 4 inches or so (sorry for mixing units of measurment, we Brits - particularly those of a certain age - are fairly schizophrenic when it comes to metric/imperial). She has grown about 6 inches since she went into Spinecor, so we're over half way there...

He anticipates a further growth of 1.2cm in the region of the spine that he's interested in; we need to hold our breath for the next year or so.

She has LOVED the brace holiday!! Has been doing a lot of sailing and wearing skimpy clothes, but does understand that this must now be reined in - I guess we'll have to invest in a drysuit.

Sharon, no maturity measures at all, he just eyeballed her, me and her dad & said, "Nearly there"! I'm happy with this, and with him in general.

Fingers crossed for Willow.


Christine, Immi has one of the new bodysuits with legs, but she doesn't like it because of the gaps in the inner thigh area. She wears ordinary Spinecor suits with very stretchy short style underpants over the top. She is still wearing Xsmall and they are now very snug! (she's a very skinny 4'9") He didn't have any mediums in his bag so we took the legged one - but we won't be getting any more.

Nice to catch up!

Laura x

[emarismom]

Laura,

Well it seems that things are going well enough, though not as good as we would all like to see:rolleyes:. So glad to hear about the cervical spine not really being an issue as I know that you have been very concerned about it. Also glad that Immy has been pretty stable even with her "brace vacation".
She must be thrilled!!

Christine,

Emily uses long tight fitting t-shirts that go under the leg straps. This has helped keep her from getting rashes. No part of the brace actually touches her skin directly except maybe the crouch straps. I have been buying them recently in Old Navy.

At our last consult we did try on the new biker short type of brace bottom to hopefully get rid of all of the straps, but Emily did not like it at all. She did not like the material or the way it felt on her. So we too have stayed with the older pelvic piece.

This week we will again be leaving on vacation so Emily will again be given some extra time out of brace. Once school starts things will get back to normal will get back on track.

[mamamax]

Hi Laura


Bodysuit issues
anybody come up with anything new?????

Her bodysuit keeps riding up so the brace is acutally touching her skin. I have kept her out of brace at night a few times. The bodysuit issues are ticking me off. We are going to try Med size, she is now in smalls. We tried the boxer legged spincor suits but my daughter does not like them.

I have tryed to have some suits custom made but my daughter does not like them. She only likes the spinecor suits but I don't.

Hi Christine - I have used boy cut bathing suit bottoms - worn under the bodysuit (both the short and long ones) and that seems to work very well. I've tried other body suits but like the Spinecor best. Congrats again on your great results!

[christine2]

Hi everyone. I had a little x tra time today so I thought I would try to post some x rays.504

505

[RugbyLaura]

Wow! They look GREAT!! Thanks for posting.

xx

[jillw]

Just got back from Montreal and the news was good. In brace curve is holding (actually improved slightly) at 1 degree on top and 2 degrees on the bottom. Her rotation was down a degree also (which is considered the same rotation, but i'd prefer for the "same rotation" to be one degree less rather than one degree more). So glad that's behind us, I get to nervous when the visits approach.

Christine, those xrays look great! Nothing new on the bodysuit front that i'm aware of...i meant to check if bodysuits.com ever did create the bodysuits in children's sizes. they said they were going to a while back, but when i checked back in the time frame stated, i didn';t see anything online. i either emailed or left a message, but didn't hear back and haven't followed up. katie dislikes the spinecor boy short style also because of the big gap so we still use the original. unfortunately the original aren't wide enough on the bottom to reach between her crotch straps and her skin so she has perma-irritation there.

[christine2]

Awesome news Jill!!! Congrats, now you can relax for a bit.

Bodysuit.com did make a kids size suit but it has elastic legs, NOT Good. We are going to try a med size and see if that works.

Our next appt is in October. We are heading down to Washington DC for vaca, I hope the weather cools for us otherwise my daughter will have some x tra out of brace time.

[leahdragonfly]

Hi Jill,

Congratulations on the great news! I know you're thrilled. Yes, as Christine wrote, now you can relax for a few months. Do you go back in 5 months?

Leah's next x-ray is in a couple of weeks. Fingers crossed...

[jillw]

Christine, We're (probably) going to DC also! Katie's class learned about DC this year so we thought we'd pop down for a few days so she could see it while still in her memory. I hadn't thought about it - you're right, DC will be hot in august!

Gayle, Good luck in a few weeks! Hoping for continued stability or even improvement for Leah! We actually go back in 6 months this time (don't know if that's specific to us or if they have changed their protocol???)

Jill

[mariaf]

Great news, Jill!! I'm so happy for you!!

[pat]

almost 4 years in, and our appointment shows she's at a 12 in brace, riser 1, gained a couple inches in the last year, over 5'8" . . . . think we see an end in site, but a pretty critical year coming up now, and she is so tired of the brace, hope we can keep her compliant. Drs. Rivard and Colliard are very pleased, so far, so good.

[jillw]

Pat, how wonderful that she's holding steady in the brace. If I recall she had gotten her period earlier this year so I'm guessing the rate of growth will slowing down now? Wow, it's exciting to see someone on these boards who really is seeing the light at the end of the tunnel. I forget (or maybe I never knew), but how large were her curves prior to bracing?

Thanks for the update!

[christine2]

Hi Pat

WOW light at the end of the tunnel, I am SOOOO jealous!! 12* is awesome! It will be so worth the work your family has done. Just put your head down and go for it.

Lots of congrats.

[pat]

Hey Christine!!! Jill, until you'd asked, I almost forgotten how far we've come. . . I had to check back into the archives. Just about four years ago, she was diagnosed with a 20 curve at age 12, brace brought her down to a "7," and four years later, and 10 inches taller, she's a "12" in brace. We braced her with a low number of "20," because her sister had spinal fusion.
p

[jillp]

Is spinecor right for her?

[christine2]

JillP

There are alot of treatment options availible. Has your daughter had an MRI yet? Try to read through the forum for some ideas. that is how I started after my daughter was diagnosed.

[mariaf]

Hi Jillp,

To add to the good advice above, I would suggest that you to get an opinion (maybe a few opinions) from a pediatric orthpedic surgeon who see lots of younger kids with scoliosis - not someone who treats mainly teenage patients.

Scoliosis in a 4-year old is much less common than scoliosis in an older patient, and therefore not all doctors are used to seeing patients who are this young. The treatment of juvenile cases sometimes requires more expertise in this specific type of scoliosis in order to get the best outcome.

Depending on where you live, I'm sure you can get some good dr. recommendations here.

Best of luck to you.

[christine2]

well said Mariaf

[jillp]

Thanks, I have not had an MRI, just an X-ray. Do I really need the MRI? Hate to do that to a 4 year old. I have spoken to Janet at Shriner's Philly and she got me in for next week so I am going to talk to her and Dr. Betz. Janet has been great to me. I have also spoken with Dr. Rivard in Montreal just today. He sounds great too. I guess I'm just confused with all of the different options, and is there an option closer for me to Hartford area than Montreal or Philly? CCMC? Boston? Also confused on how Dr. Rivard can say my daughter is a good fit for the brace when he hasn't even seen the x-ray. Also confused if Dr. Sid in NYC is any good for spinecor bracing? I will go anywhere for my daughter...just confused on who is the best to start with for someone so young. Help?:)

[mariaf]

Hi Jill,

Unfortunately, I think that any good doctor will tell you that you do need an MRI to rule out any underlying causes of her scoliosis (since she is so young). It really is necessary. My son had an MRI when he was even younger than your daughter and he did fine. They did sedate him but it was something very mild just to put him to sleep. There will be a pediatric anesthesiologist there who is well trained in these things.

We live in NYC (not that far from Hartford, relatively speaking I guess) and have found the best care, IMHO anyway, at Shriners in Philly. That said, you should feel free to get a few opinions and hopefully as time goes on it will become clearer what you should do. It is very overwhelming at first I know. Feel free to email me as well with any questions or if you just want to chat.

(and yes, Janet is awesome!)

[Mom37]

Jill P-I agree that an MRI to rule out any spinal cord issues is something that I would certainly ask your doctor about, and see if it is a consideration. If they order one then it sure won't hurt to be sure. It took a third doctor for a 3rd opinion from a pediatric orthopedic surgeon to be the first to recommend it, and wish the others had done 9 months earlier, as my child did have a medical condition we were unaware of with her spinal cord. My youngest daughter (who doesn't have scoliosis) had to have an MRI when she was about 3 or 4 to rule out or determine other possible medical issues. I held her and she was sedated rectally and she didn't seem to feel more than a slight discomfort and almost immediately was asleep. It was really no big issue and she did fine other than mentioning she didn't like them making her wear a "pull-up" just in case she needed it. As they don't have control when sedated. My older daughter was 12 and not sedated and did fine. Best wishes.

[christine2]

JillP

I was also nervous about sedating my daughter for her MRI. But it turned out that the whole procedure was easier than I thought. I am very happy we did it, if we had not,it would have always been on my mind.

We just got back from D.C. what a awesome trip. We were able to see the preperation for Senator Kennedys funeral at Arlington cemetary. The kids will never forget that. The US lost a very important political figure. I just hope someone will follow in his footsteps.

It was very hot in the city, my daughter had alot of out of brace time. Our next appt. is in October so its back to compliance for now.

[Ballet Mom]

Hi Pat,

Congratulations on your daughter's results! I'm curious about when the Spinecor people start taking out of brace x-rays so it can be seen what the true curve is? At what point do they wean the kids off the brace, or do they recommend continuing to wear the brace after maturity? Thanks for the info.

[christine2]

My daughter saw the Orthotist at one of our Orthopedic docs yesterday. She is very impressed with the Spinecor and has started to use it. We see her so she can follow my daughters case.

The orthodist was fasinated with my daughters progress. She checked for rotation out of brace and it was between 2-3.
Awesome!!

We will get an out of brace x ray when we see Dr Rivard in October. Fingers Crossed. That will be a nerve racking time!!

[Bigbluefrog]

Hi,

Newly diagnosed 13 yr old girl with scoliosis T25 learning more each day...we finally see the orthopedic surgeon tomorrow with more radiographs.

Really interested in the spinecor brace...it looks progressive in bracing.
We apt with Ortho, then Schroth PT and finally chiro who specializes in spinecor.
Tom Pappas D.C. Anyone seen him he is scoliosis specialist for the midwest?
http://www.scoliosis.org/forum/showthread.php?p=21453

I am interested in seeing if you had good results.....started reading this forum on p 22 and I realized it was only 2006 and most of those peeps graduated....except some of you are still here...and its great to see your outcomes...please do share....Would you use Spinecor all over again?

[christine2]

We are back from out appt. Out of brace X ray was 11* not bad but I was secretly hoping for another 1* reading. I was hoping she could come out of brace for a year. Gotta tell you all that this traveling 7 hours one way to Canada for appointments is getting old BUT I will buck up and do what I think is best for my daughter. I checked out airfare again. $700 – $800. per person, I could fly my whole family to California for that price!

My goal all along is to keep my daughters curve as low as possible now, so that we can stay below 20* during the growth spurt. Dr Rivard asked us what we wanted to do, My daughter was included in the whole discussion and it was unanimous, stay in brace till the end of growth.

Pat
Are you out here!!!
I think you said your family flys, am I missing something for decent pricing?? Which airline do you use?

[BellasMom]

Christine, I flew once in June for $300.00 per person round trip - it was Air Canada

[christine2]

I just checked Air Canada, approx $1500.00 for 2 people round trip. Am I missing something????

[BellasMom]

It always depends on when you are flying - we flew on Tuesday. Middle of the week is usually good or staying over Saturday night is good as well

I see $400 tickets now. You can try this website to find the tickets, but you can't buy them there - you'll have to go to the airline site directly: matrix2.itasoftware.com - you can just search by month and it'll show you when it's the least expensive to fly let's say in November for 1-2 nights

[christine2]

Bellas mom
Excellent info, I have added it to my favorites. I never even heard of Porter Airlines. THANKS!!!!!

[emarismom]

Christine,

11 degrees out of brace is a very :) number !! As moms we always want better though, so I do understand.

As for airfare, it is cheaper to fly into the US, then rent a car and drive across the border. (I'm not sure of the distance, but it may be an option).
Flying into Canada is very expensive because of the high taxes there.

[christine2]

emarismom
Great Idea, I will look into that.

BTW I am trying to look at the big picture, I know that because my daughter had such a large curve at such a young age that her progression will most likely be aggressive. Therefore I want the smallest possible curve before she starts her growth spurt. She will most likely progress. I want to try to start out as low as possible. If she were 12 or 13 yrs old I would take 11* in a heart beat. I am not looking for perfect, just long term pain free right now.

[concerned dad]

congratulations Christine. 11 degrees! Looking good.

[Ballet Mom]

Hi Christine,

I think your daughter's out of brace number looks great! Didn't you say that she was going to be out of brace for a few days prior to the x-ray? You've done a good job getting her curve down, and there's nothing that stops you from changing to a different brace when your daughter hits the adolescent growth spurt.

I think that might be the ideal use for the Spinecore...to get these young kids spines down to small degrees in their slow growth, and then switch to a more robust brace as they enter their rapid and peak growth periods, when the forces on the spine become quite large and harder to control.

Kudos to you!

[Pooka1]

We are back from out appt. Out of brace X ray was 11* not bad but I was secretly hoping for another 1* reading. I was hoping she could come out of brace for a year.

My goal all along is to keep my daughters curve as low as possible now, so that we can stay below 20* during the growth spurt. Dr Rivard asked us what we wanted to do, My daughter was included in the whole discussion and it was unanimous, stay in brace till the end of growth.

That is still quite amazing actually. 33* -> 11*

I am guessing the eventual Spincor usage will largely, if not only, be in the JIS crowd based on all I have read and where this seems to be going. But who knows?

Can I ask if Rivard still sticks by the protocol of never taking an out of brace radiograph until weaning?

If so, how does he interpret the 1* in brace and 11* out of brace? I imagine he has NO framework with which to interpret that given his protocol.

Was he surprised at the 11* out? What would he have predicted I wonder?

Was he perturbed at all that you took the out of brace shot? Does he still maintain it is completely unnecessary?

Anyway, congratulations. It's a big deal. I can't think of any other Spinecor "success" story besides yours.

[mariaf]

Christine,

I know that we, as parents, want to hear the lowest numbers possible, but 11 degrees is a really good place to be! Congratulations!

[Pooka1]

Christine,

I know that we, as parents, want to hear the lowest numbers possible, but 11 degrees is a really good place to be! Congratulations!

Actually considering the error bars, she may not technically have scoliosis any more.

[CAmomof2]

Christine,

Congrats! 11* out of brace is almost considered "normal" ! :)
Hope she can continue to hold the low numbers!!
Our 10 year old daughter is 14* in brace and has been in the spinecor for a little over a year now. She started out at 25* out of brace, and yes I have her xrays double checked by another ped. ortho. to make sure the #'s are correct! She sees both Dr's actually, but only has the xrays taken in Montreal because they have much lower radiation. She had a MRI this summer and everything is fine.
We live in Canada and have a 9.5 hour drive one way to the clinic in Montreal. We drive in the summer and fly in winter. Hope you can find good rates for her next appt. Take Care.

[jillp]

Christine, I have been thinking so much about you lately, because I knew your x-ray visit was coming up. I am so happy for you that you had good results. You are my inspiration and if this Boston bracing doesn't work, I will be calling you again for tips on seeing Dr. Rivard! Keep up the good work! Maureen Roberts will be thrilled!!!

Jill from CT (Liliana's mom, 4 yrs old)

[jillw]

Christine, WOWIE WOW WOW (to use junie b jone's phrase - could you guess i have a 2nd grader in the house)

I understand you were secretly hoping to see a 1 degree curve- but cutting her OUT OF BRACE curve by approx 66% is totally wonderful. And I further understand that with JIS you want the curve down to next to nothing before her big growth spurt so you have a larger safety net, but still, wow. yay. somehow i had missed your post - although i had been wondering when in october you would be going.

Pooka, from what I have seen anecdotally, with the hard braces they take an in brace xray at the original fitting to see that there is some sort of correction, but when the child gets subsequent out of brace xrays, the curve is usually HIGHER than it had been in brace (but perhaps lower than the pre-bracing xray) so I'm not surprised to see something similar with spinecor also. I've never read anything anywhere that indicated any kind of brace would give you an out of brace curve that is as small as it is in brace, although i'd love to find such a brace.

[Pooka1]

Pooka, from what I have seen anecdotally, with the hard braces they take an in brace xray at the original fitting to see that there is some sort of correction, but when the child gets subsequent out of brace xrays, the curve is usually HIGHER than it had been in brace (but perhaps lower than the pre-bracing xray) so I'm not surprised to see something similar with spinecor also. I've never read anything anywhere that indicated any kind of brace would give you an out of brace curve that is as small as it is in brace, although i'd love to find such a brace.

Jill,

I don't think I was clear.

I was just asking about the Spinecor protocol which as far as I can tell does NOT include any out of brace radiographs during treatment. Folks here insist on them over and above any possible objections from Rivard et al. as far as I can tell because it is a legitimate thing to do.

For hard bracing, the protocol is one radiograph in brace at the beginning and the rest are out of brace for whatever hours are specified.

Thus the two protocols are almost completely different and I would like to know why.

[christine2]

Just for the record, Dr Rivard did not argue about the out of brace x ray. He did indicate that it was not necessary. I understand his reasoning and in hindsight feel that the x ray was unnecessary. Dr Rivard has told me over and over that my daughters treatment is my decision. He has never insisted on anything and by far has been the most compassionate, professional Dr I have delt with.

Thank you everyone for you nice comments, my family feels very much at ease and relaxed right now. It's a nice place to be.

[mamandcrm]

Hi Christine, that's wonderful news for you and your family. How old is your daughter now? I'm sure it's in the thread somewhere but...anyway, enjoy your relief.

Chris

[christine2]

My Goodness Chris you are also having excellent results!! My daughter is 9 now. We still have a long road ahead. Sometimes I feel like it will be forever till we are out of the woods but it will all be worth it, I hope!!

[emarismom]

I have been on this road for 5 years now Christine, and there are moments when I am just so tired from it all and other moments where I am so grateful, because it really could be much worse! The worse times are right before each new xray.

Emily is almost 11 and has grown 1 1/4 inch since June. I think we are starting in the "most dangerous time". We haven't been as lucky with such great results. Most recent oob was 27:(

Will be going next month for an in brace-Keeping my fingers crossed.

[christine2]

Hi Emarismom

Good luck w/ the x ray. It is very nerve wracking. Thanks for the pep talk. We are doing the best we can. It must be hard facing "dreaded puberty" with or w/ out scoliosis. :eek:

[Snowwhite832]

Not even sure I'm doing this right,
but a big HUGE thank you for your kind words they were and are
very calming. I Shall call childrens national and see if they have a
SRS scoliosis research society person there, I know my appointment is with
a dr who specializes in childrens scoliosis and that, will be on Mon, Nov 9 and oh boy am I going to have a list of questions.

3 Days ago I didn't even know what Cobb was!

trying to read things, and looking up words at the same time. And YOU have already answered a huge question I had ! (thank you ) ...being totally ignorant here,
and reading through so much this weekend ...I did know if the , number, is
cumulative, or specific. I know the 18% is the only one I have to worry about now.

Another question for you , or anybody else out there,
and yes call me Snow,
any recommended books I can order up...I totally see knowledge is power, with this, and wanna feel like I have some power? (despretely) right now I'm just doing what the doctor tells me, (even if I dont understand half of it)

and thank you, for the vote of confidence, swimmingly, I'm not so sure,
but trying!
snow

[concerned dad]

maybe alot of you, werelike me, at one point


Hi Snow,
yes, most of us parents can totally relate to what you are going through right now.

I cant recommend any books. It would be good to educate yourself as much as possible so you can speak with the doctor and it sounds like you are well on your way.

I suspect that Linda will move your post out of this thread when she comes across it. Keep an eye out for the new location.

Dont hesitate to ask us any questions but remember, we are just parents like yourself with no formal training. We can just offer our opinions. They often differ.

And thank you to both you and your husband for the sacrifices you are making for our country.

[Snowwhite832]

I've read a ton of your posts over the weekend,
Your so ..smart about all this stuff
thanks for your kind words about my family and husband
lots of ..accolades (if I spelled that right, probably not) a few years ago
not many these days, though us as a family have lived with him
being in the middle east, about half the time , since 2002 or pretty close,
a big deal back then it seems, but now a days, except for me and kids, no big deal.
You mentioned moving the post, I'm probably posting in the wrong place,
where would be the best place for a newbie?

and, I started here, cause ..spinecore, good, bad, my savior if the watch and see, I can't deal with , or ...also , sortof reminds me of (please nobody get mad, I am a newbie) the ole medicine exlire guy , it'll cure anything and everything, ?
It's why I posted here, anyways, I already contacted them , pre-emtively
before even hearing for childrens nation hospital, an expert,
cause I'm afraid,
cause my son is so young
and he's so close to the curve 3% off,
I want action, I want ...to DO something
and from everything I've read, i'll have to wait
and, are there any ..blogs to complain about family members ?
I didn't see any
I have one brother, this weekend, head football coach yelling at me,
about surgery, my son isnt even, after reading up, a canidate for brace,
the other
saying, I know nothing and untill I talk to specialist, nothing is really real
it's all conghetore. (and I'm a fruit cake listening to people online)
which , I'm not, takign information and trying to research, doing exactly what doctor tells me do,
even though I dont understand anything , or what she's saying.

in short, I blogged here, cause ..after reading, I figured I'd bring my son ,
to one of those spinecore things, in NY in dec, if ...the childrens national hostipal specialist, doesnt ...do anything ? next week at appt,
wait and see ..not sure If I can, thinkng maybe I should but I dont know
I don't know ..even excerises, pt , whatever , wanna do something feel so helpless.
snow

[mariaf]

I suspect that Linda will move your post out of this thread when she comes across it. Keep an eye out for the new location.

Yes, I just replied to you, Snow, on another thread - I think entitled "Spinecor Brace for Adults".

[Ballet Mom]

Hi Snow,
yes, most of us parents can totally relate to what you are going through right now.

And thank you to both you and your husband for the sacrifices you are making for our country.


I agree Snow, thank you for your family's sacrifices!

[mamandcrm]

Snowwhite832,

You will find SRS specialists at Children's National. Just FYI, parking can be horrific there (in the parking garage) so go early so you don't stress about getting to your appointment (they do have a valet, as well, which IIRC is either free or nominal)...unless you are going to the Fairfax annex (I see you are in MD), where it's not a problem. Be sure to make a list of all your questions so you don't get "lost" during your appointment (it's easy to forget everything once you're in there), and not be shy about asking the doc any additional questions about anything you don't understand that comes up in the appointment. Your doc will not be a spinecor fan, so don't be surprised by that, very few are.

[emarismom]

Well we had an xray done yesterday. Emily's curve is 17 degrees in brace. :) I'm okay with that considering her age and amount of growth the past few months. Last xray (6/09) she was 27 degrees out of brace. So the brace seems to be giving her some correction, we will stay the course at this time.

[jillw]

Great news!!!! What a nice reduction since the last xray - especially since she's approaching that "dangerous time" of growth. Woo hoo!

[concerned dad]

Just a quick note in case it may help someone:

Should you decide to go to Montreal for treatment and plan on submitting an insurance claim, be SURE to ask them to indicate the currency used on the receipts.

For us, we paid in US dollars for the brace and in canadian dollars for the xrays. Our insurance company assumed that the charges were all in CN dollars.

I guess my point is, with all the busy and stressful activities going on during someones first visit, you may want to make a mental note to ask them to write US or CN on the receipts as appropriate. It may make life easier later.

[BellasMom]

Just a quick update on Bella - she saw Dr. Rivard yesterday. She is still holding at 14 degrees in brace

I guess the lack of bad news is good news in this case. She grew since her last appointment (my husband did not ask for exact height measurements), but she definitely grew and her curve is staying the same

[jillw]

Glad to hear it - stabile curve after growth is a good thing! Happy Thanksgiving!

[jillw]

Well, we had another appointment for Katie. It's been 2 1/4 years since Katie has been wearing her brace. I'd asked her doctor for an OUT of brace xray also this time-while he really didn't think it was necessary (for reasons discussed elsewhere) he kindly accomodated us. Her out of brace curve is now basically half of what it had been in the beginning:it is down to 10T/3T. (see my signature for it's history) I had been told it takes at least 2 years for curve reductions with spinecor to potentially start to "stick". Since we were so close to 2 years, I was just hoping to ensure that her out of brace curve hadn't crept up 5 degrees or more-I wasn't expecting to see a curve reduction. It was a pleasant surprise. I know with scoli we still have a long war ahead of us, but it's nice to have little victories here and there. Because the curve was so low they didn't feel they needed to take an in brace xray also so we avoided the extra radiation exposure.

Just thought I'd post my update...it's been quiet on this board and I hope the rest of you will post your updates as you have your appointments!

[jillw]

p.s. just saw my previous post from before today - where I referred to a "stabile" curve. what, do I think i'm channeling my italian ancestry? Like "fragile" in the movie "A Christmas Story" where the father pronounces, "frajeelay - must be italian"! This right before he opens the lovely leg lamp.

[mamamax]

My heart is smiling big for you and Katie :-) Cause to celebrate for certain - and a good day this!

[christine2]

Excellent news Jill


We also had an out of brace in Oct 09. 11*, did the same, did not bother w/ an in brace at that time. Yes we still have a long road ahead but the little victorys keep us going. I have a good feeling that when all this is done my daughter may end up around 11*. That would be incredible!!

My daughter is still doing well emotionally in brace. I have been slightly flexable about wearing it. She actually slept w/out last night. She does that prob. 2x a month.

Our next appt is in April, I will start stressing mid to end of March;)

[mamamax]

A reason for my heart to smile big two days in a row? How wonderful is that! Congrats and best wishes for continued success :-)

[jillw]

THanks guys.

Christine, glad to hear your daughter is still doing well emotionally. I'm feeling a little more relaxed going into the summer - not that katie isn't going to comply with brace wearing most of the time, but those days in the summer when she goes 4+ hours straight without the brace (instead of 2 hours twice a day) I won't worry as much. We have to be realistic and it happens numerous times over the summer with swimming and such, I just won't be as uptight in my head about it. That will be nice.... (on the other hand she's getting closer to that dreaded growth spurt that usually brings the onset of scoliosis for the AIS folks. i'm told 10 ish and on is when that growth often begins. i suspect she will be a late developer though)

[MJB]

We went to see Dr. Rivard yesterday and every time we go Halle is getting worse... Last time she had gone up to 14 degrees (in brace) from 9 and now this time she is up to 23 degrees (in brace). I don't know what to do anymore... she wears her brace 24 hours a day, only takes it off to shower, she doesn't take breaks because her back hurts during breaks. She is 10 years old now and starting puberty, so Dr. Rivard said that this time is critical... I am so worried because it seems like with her onset of puberty she is getting so much worse and this is IN her brace... what is she OUT of her brace? How is she going to hold up when she is full blown going through puberty, gets her period and everything?

[mariaf]

Hi MJB,

I’m sorry to hear of this latest result and can certainly understand your stress level. Did Dr. Rivard say anything else beside that this time is critical? Did he make any recommendation(s) to try to avoid fusion?

My first thought is that I would get an out-of-brace x-ray as soon as possible, after your daughter has not worn the brace for 24-48 hours. You need to know what her curve really is. Unfortunately, I’ve heard of similar cases before where a child’s in-brace numbers started to creep up, and then when an OOB x-ray was finally taken, the child had progressed to the point where fusion was the only option.

I am NOT saying that is the case for your daughter – but I feel you should act quickly – maybe get another opinion from a doctor who offers other alternatives (perhaps a different type of brace? VBS?). The bottom line, as I’m sure you are aware, is to keep the curve at a level where you can avoid fusion.

Depending on where you live, I’m sure you could get some recommendations. In particular, I would look for a doctor who specializes in juvenile scoliosis. You can’t go wrong with Dr. Betz and his team at Shriners in Philadelphia. There are also a few doctors in NY who treat lots of JIS cases and seem to be on the cutting edge when it comes to treatment options (Drs. Vitale and Lonner come to mind).

Hope this helps. Best of luck and please keep us posted.

[MJB]

Thank you so much for your response. I am terrified that out of brace her curve is probably so bad... she started off at 32 degrees, once they got her in the brace it was down to 9 degrees. Now it's 23 degrees in the brace. I have made an appointment with my family doctor for tomorrow, I called and left a message for a nurse at Sick Kids hospital in Toronto, which is where we live anyway. They have given me all the information to give to my doctor for a referral to them. They would use a different brace, as they do not use Spinecor there. She mentioned the TLSO brace, I am so nervous to put her in a rigid brace but I don't know what to do anymore. She is terrified that she will need surgery, she is only 10 and has a major growth spurt ahead of her, so I don't see things getting any better with the Spinecor.

[MJB]

and no, he didn't say anything else... all he said to her was "what's going on, are you not wearing your brace?" to which I jumped in and said she wears it 24 hours a day. He only spends like 2 minutes with us every time we go there, I feel so ripped off travelling 6 hours to get there for such a short appointment with him.

[Pooka1]

and no, he didn't say anything else... all he said to her was "what's going on, are you not wearing your brace?" to which I jumped in and said she wears it 24 hours a day. He only spends like 2 minutes with us every time we go there, I feel so ripped off traveling 6 hours to get there for such a short appointment with him.

OUTRAGEOUS! I guess he can't even imagine that his brace might not hold a curve. That is NO WAY to conduct research which he is claiming to do.

Maria has such good advice here. Don't start worrying yet. You might still be within VBS range and you are ahead of the growth spurt.

If the curve has progressed markedly, don't beat yourself up. T curves have the highest rate of progression. That's not your fault. All your decisions to date and into the future are correct by definition.

Good luck.

[emarismom]

MJB,

I am so sorry to hear that your daughter's curve is progressing like this. I am with Maria on this one. Go and get an out of brace xray. This is the one aspect of the Spinecor that I have always had issue with. I do not understand how they can go for years without an out of brace xray.

I too would be upset to travel that far, and having invested so much time, effort, and money into this "product" to be seen for such a short time. The reality of it is that you have done all that you can to try to prevent your daughter's curve from worsening. All of us who have gone this route have known that this may or may not work. If your daughter's curve has progressed, it is not because you didn't do enough. Some curves are like that.

By the way, Emily's out of brace curve has gone up too. It is at 27. In brace it is still in the upper teens. I think she is in her growth spurt, if not, she is very close. If I see that the Spinecor is truly not holding her curve, I won't be trying any other brace. I may consider VBS, but more than likely I would wait for surgery.

[MJB]

Thanks everyone! I appreciate the responses and encouragement! We are getting an out of brace xray tomorrow, she will only be out of her brace for 22 hours by the time she gets it tomorrow but that will be pretty good still. She has been complaining of discomfort since she took it off 3 hours ago, as I said before, she hates taking her breaks.

Her father does not want her in a hard brace, because of the muscle atrophy thing but we will see what Sick Kids says... He would really like her to somehow strengthen her core... Dr. Rivard will not allow any type of physiotherapy or chiropractor or anything. DH does not agree with that and he has already done his research today and found things to support having added things to the treatment. He is also going to start training her in boxing soon, he is a boxing instructor and teaches adults, teens and children... this will be good for her to gain some strength in her core for sure.

[MJB]

OUTRAGEOUS! I guess he can't even imagine that his brace might not hold a curve. That is NO WAY to conduct research which he is claiming to do.

Maria has such good advice here. Don't start worrying yet. You might still be within VBS range and you are ahead of the growth spurt.

If the curve has progressed markedly, don't beat yourself up. T curves have the highest rate of progression. That's not your fault. All your decisions to date and into the future are correct by definition.

Good luck.

Yep, that's exactly how I felt... that is why I jumped in and made sure he knows that she is probably one of his most serious patients with wearing her brace all the time!

[mariaf]

OUTRAGEOUS! I guess he can't even imagine that his brace might not hold a curve. That is NO WAY to conduct research which he is claiming to do.

It certainly is outrageous!! The patient in this case has obviously been very compliant - and even if she wasn't, geez, SHE'S 8 YEARS OLD!! How dare he try to make her feel that it was something she did that made her curve go up.

I can't even come up with the words to decribe how wrong that is!! As a parent, I would be absolutely furious with him as well.

I'm also in agreement with everyone else, MJB, when they say it is also NOTHING you did either. These curves sometimes have a mind of their own. Had you not been so vigilant with your daughter's care, her curve could be larger today.

Hopefully, there is still time to try other options. I think Sharon said it best when she said "your decisions to date and into the future are correct by definition".

[Pooka1]

You know, between the first hand accounts of mis-measuring Cobb angles and then this, it should not be surprising why the rest of the orthopedic community seems to dismiss the Spinecor literature.

As a researcher albeit in a different field, I would stop reading the papers from this group if this were my field FULL STOP.

[hdugger]

On misreading Cobb angles.

My *previous* ortho doctor told us one year my son's curve was 47 degrees, then the next year told us it didn't look like his curve had increased, except this time he measured it as 59. When we asked him how that could be, he went back and looked at the first xray and said "Oh, I guess I picked a different vertebrae."

Just to say, sometimes people just don't seem to be so good at measuring :)

[Pooka1]

On misreading Cobb angles.

My *previous* ortho doctor told us one year my son's curve was 47 degrees, then the next year told us it didn't look like his curve had increased, except this time he measured it as 59. When we asked him how that could be, he went back and looked at the first xray and said "Oh, I guess I picked a different vertebrae."

Just to say, sometimes people just don't seem to be so good at measuring :)

Yeah but with some it probably always goes in one direction. The residuals are not random. ;)

[mariaf]

Exactly.

I totally understand how, by using different vertebrae for example, measurements can vary depending on the person reading them and other factors (usually the variance is minor which is I guess why they came up with the 5 degree margin of error, instead of say, 10 degrees).

That said, there is a definite pattern here. It's seems to be the same story over and over - and sadly, it's the children who are paying the price.

[Pooka1]

When researchers are at the point of throwing 8 year olds under the bus, they have lost all objectivity. They should step back and reassess.

The papers from that group are, and will continue to be, GIGO in my opinion.

There is a reason why the bulk of orthopedic surgeons have not jumped on the Spinecor bandwagon and I'm willing to bet it is lack of positive results in the AIS crowd.

JIS an adult are the only hopes for Spinecor in my opinion.

[mariaf]

There is a reason why the bulk of orthopedic surgeons have not jumped on the Spinecor bandwagon and I'm willing to bet it is lack of positive results in the AIS crowd.

Yup, that's what Dr. Betz told a parent recently - that he hasn't seen anything that shows the brace's effectiveness so he doesn't prescribe it.

Also worth noting, we have compiled a list of doctors who perform VBS on the VBS website. These are names I think most folks here would recognize, and not just guys at Shriners (names like Oswald, Skaggs, Hresko, Lubicky, Vitale, Hanson, Durrani, etc.).

To my knowledge, not one of these guys prescribes Spinecor. That despite the fact that many of them, like Vitale for example, specialize in JIS so they obviously don't even feel it is worth using in these cases.

Makes you wonder..........

p.s. I agree that Spinecor's usefullness may come in the form of pain management for adults - a few folks seem to get relief from wearing the brace and if they can reduce their pain, that's a wonderful thing. Also, I'm wondering if Dr. Rivard's bedside manner (or lack thereof, based on how he spoke to this 8-year old) is better suited for adults anyway.

[txmarinemom]

There is a reason why the bulk of orthopedic surgeons have not jumped on the Spinecor bandwagon and I'm willing to bet it is lack of positive results in the AIS crowd.

Actually, quite a few orthos tried it ... but quickly jumped OFF the bandwagon. And you're exactly correct on the reason ...

[jillw]

MJB, I think you are taking the right first step in getting an out of brace xray to see what you are working with. I'm guessing that since there has been progression in brace (more than a few degrees), you will see progression out of brace as well - an xray is the only way to find out. Hopefully it won't be too bad. As you point out, with your daughter at or nearing her peak growth you have some decisions to make. Maybe you'll be surprised and her out of brace curve won't have progressed, but I would be surprised to hear that. If it has progressed more than a few degrees from where she started, it would make me think that the spinecor brace isn't going to hold her curve and its time to re-evaluate. I understand why you'd want to avoid a TLSO since she still has so many years of bracing ahead of her - but if she is wearing one and it is working, perhaps the time could be cut down to something more manageable, or maybe night bracing would do it which would vastly minimize your concerns about muscle atrophy since we don't use many muscles when sleeping anyway. Also, as Maria points out, VBS is an option. Unfortunately there are no guarantees. There are people who were progressing in hard braces and switched to spinecor - in some cases spinecor didn't do any better than the TLSO, in other cases its doing the trick so far, but the child isn't done growing so the jury is still out. Conversely, there have been children who have switched from spinecor when it wasn't working to a TLSO or they have had VBS and then continued to progress anyway. As others say, there are some curves that won't be held. I hope this isn't the case for your daughter.

I wonder how many orthopedists (regardless of which brace they prescribe) who had children whose curves were progressing in TLSOs recommended alternative treatment - a different brace or something. Anecdotally it seems like many just hope for the best. The thing that I like about VBS as an option, is that if it isn't working, you can try bracing in addition to the VBS. Maybe a brace alone wouldn't work and VBS alone wouldn't work, but the double whammy can do the trick. There have been cases where kids who had VBS had curves that were progressing despite the VBS who started wearing a brace again. In many of these cases the combination treatment was able to reduce the curve thus far. And often these children only need to wear the brace at night which is much more manageable. Good luck with your appointment today. Let us know what you find out. I do think that even if her curve hasn't progressed much out of brace, that your gut instinct is probably on target. Her large growth spurt is upon her and the brace wasn't holding it....I'd try for something else.

I have wondered in the past if a hard brace at night along with spinecor by day might be an option for those in the adolescent growth spurt who have shown some progression (assuming that her curves have only increased a minimal amount. ) There's actually a parent i heard of who is trying it - it will be interesting to see how it works out.

Good Luck.

As Maria said, a visit to Dr. Betz could be very helpful since he is one of the only doctors who don't think that a rigid brace is the only way to go (other than the folks in MOntreal). He understands your concerns about quality of life and tries to customize a treatment plan that might involve VBS or VBS with rods or VBS with bracing or bracing without VBS, etc. Also, as Maria said, Dr. Betz had told a parent that he hadn't seen results with spinecor - however, in fairness, he also said that hadn't seen that many patients who had used spinecor. I forget the number, but it was only in the mid-teens. And there is a bias of sorts...those who had success with spinecor are less likely to have visited him. Just like to read these boards one gets the impression that many of the children who were fused end up as adults requiring revision surgery or are living with chronic pain and other side effects. I really hope that isn't the case, I'm guessing, but not assuming, there are a multitude of adults who were fused as children who are doing fine decades later...they just are much less likely to have sought out these boards and to be posting here since they don't have problems. Another sort of bias.

[jillw]

MJB, a follow up thought...like VBS, spinecor sees the best results with smaller curves. Given that your daughters curve started at 32 degrees, even if she has only progressed a few degrees out of brace, her curve will be beyond the size that spinecor seems to have more success controling. That might be another reason to consider alternate treatment - again, i'm assuming that an in brace curve increase has to mean an out of brace curve increase also, but you will know for sure today.

[mariaf]

Also, as Maria said, Dr. Betz had told a parent that he hadn't seen results with spinecor - however, in fairness, he also said that hadn't seen that many patients who had used spinecor. I forget the number, but it was only in the mid-teens. And there is a bias of sorts...those who had success with spinecor are less likely to have visited him.

Hi Jill,

I agree with you that sometimes we see a bias because, for instance, folks seeking support here or seeking additional opinions from specialists, are often the ones for whom their current treatment method is not working.

That said, I get the impression (I could be wrong) that Dr. Betz came to this conclusion not only from the patients he has seen personally, but also from general information out there. I know for instance that he keeps current and shares facts and patient experiences with a whole network of doctors. For example, he is - as he put it - "a good friend" of Dr. Vitale. He also works closely with others (like Dr. Luhmann and Dr. Durrani just to name a few) in this respect.

So, my guess (and that's all it is) is that Dr. Betz's conclusion is not only the product of his experience, but more likely the consensus among this whole network of doctors.

Again, I could be wrong and it is of course just my two cents :)

[Pooka1]

So, my guess (and that's all it is) is that Dr. Betz's conclusion is not only the product of his experience, but more likely the consensus among this whole network of doctors.

This is precisely the sense I got from our surgeon about the consensus of the pediatric orthopedic community.

[mariaf]

Hey Sharon,

I noticed in your signature it says "now 50". I think we've had this conversation before, that we were very close in age - and I guess you just beat me - I turn the big 5-0 in two days!

Happy Belated Birthday :)

[Pooka1]

Thanks Maria. I turned 50 in January.

I remembered that we are very close in age.

Have a great birthday! I hope you do something fun. :)

[mariaf]

Thanks, Sharon. I knew you were only a month or two ahead of me :)

[jillw]

Sharon and Maria, congrats on the 1/2 century club ( a couple days early for you maria)

Maria, I hear what you are saying and that is a valid point. However, I would be curious how much experience the other doctors in Dr. Betz's network have had with spinecor.

Also, I feel terrible for MJB's experience - but I am surprised to hear it. We have found Dr. Rivard to be very compassionate and willing to answer detailed questions. Very kind to Katie. Quick to respond personally to emails or phone calls between visits. They are also very tuned in to how a child with scoliosis feels - this is what lead to the invention of spinecor (and numerous parents I have been in contact have told me of similar positive experiences)...much like Dr. Betz realized how hard it can be for some of these young kids to be in a TLSO for so many years. I would say maybe he was having a bad day, although MJB has felt like she hasn't had much of his time on previous visits also- and that is really a bummer. He does ask every visit how much she has been wearing her brace...i think that's a standard question he asks.
MJB, because the written word can be misinterpreted, I want to explicitly say that I'm not questioning your experience and I would feel like you did if I had a similar experience- I just wanted to point out that this is not how it always is for everyone in case anyone is wondering. I've been thinking of you today and wondering how it went...hopefully not too bad.