spinecor

[emarismom]

Well I'm very glad to see that the tension on this thread has subsided. It truly is a wonderful place to gather information and support. I don't know how I would have gotten through all of the decisions I've had to make in the last year if I didn't have this forum to come to.

Just as a note, my daughter does not have AIS. Her scoliosis was caused by Chiari and a syriyx. A few months ago, when her curve increased with her spinecor brace, I called Janice at Shriner's in PA. I wanted to find out "if my daughter was even a candidate for VBS", if Emily were to continue to progress. According to Janice, Emily is a candidate for VBS, even though she has had decompression surgery and continues to have a syrinx in her spinal cord. So it seems as though VBS is not only being used in AIS cases, but is now being used in scoli caused by neurological issues.

As of this moment, I am trying to stay positive and confident that Emily's curve seems stable in the Spinecor brace. I have no idea what the future will hold, but I do know that this brace has given me some hope that Emily's curve "might" improve. If it doesn't then at least I have the knowledge that I have tried to do something to help my daughter. By taking the wait and see approach, that the orthos STILL recommend I do, I would be
A) allowing her to progress
B) resigning her to "at least" having a 20 something degree curve for the
rest of her life
C) putting myself and her into a position were we may have to be reactive
instead of proactive

Scoliosis caused by Chiari tends to be very aggressive if it progresses. So at this point if her curve were to progress, then we would be on a plane to PA. As I see it, there are no right or wrong treatments or paths. Rather what is right for someone at one point in time, may not be what is right for them at another point in time.

Finally, ALL of the children of the parents on this board are VERY blessed to have parents that are here, searching for options, trying to do all in their power to help these children. I am a teacher. I have told three different parents of elementary school children to take their children to the pediatrician to get checked over the last few years. (You know how NOW you see scoli everywhere you go, but never noticed it before). One parent has not asked their doctor to check the child. The other two kids do have curves according to their pediatricians, but the parents have not even taken the kids to an orthopedic. It is so infuriating.

We are all here for our kids, we shouldn't be here to say that one treatment option is better than another. It is all dependent on each individuals particular situation.

Just my 2 cents.

[shaes mom]

Emarismom,

I'm with you, keep trying and searching out new avenues/procedures. Better to be proactive then sit and wait. Like you said, at least you know you've done what you can.

As far as recommending to other parents to take their kids to be checked - maybe they don't understand the severity of scoliosis. I know I didn't. When Shae's doctor told me she needed to be checked I was like "ok". So I took her that day for an x-ray. Then I found out she had two 20° curves and I then started researching it. What a pit in my stomach. I thought my world was coming down on me. But really, in the beginning I had no idea. I had heard of scoliosis and knew that it was a curve in the spine but never, never, never knew it could be so bad.

Have a good night.

[pat]

Deshea,

You're my life saver this week. I hadn't even thought of passports. My husband is the only one who has one. Oh boy, best get moving!

Passport info: www.travel.state.gov, now taking 4-6 weeks, expedited 3 weeks.
p

[shaes mom]

Thanks Pat!

[shaes mom]

Can anyone recommend a hotel in the Montreal area?

[mpj]

Hi,

Just a suggestion, and maybe some of you are already doing this, but we have our daughter followed by Dr. Rivard and our local orthopedic. Dr. Rivard has so far done the in brace x-rays and our orthopedic follows her progress with out of brace x-rays. Then I feel like my Drs. can keep each other accountable. So far their reports have been very consistent.

As far as hotels in Canada, we have stayed at the Hyatt Regency and the Delta. They are both really nice, and we have gotten good deals with airfare on travelocity.

Sarah

[desheah]

theresa,

sorry my husband has family in northwestern vermont so we always stay with them. no help on hotels.

another option is a passport "card" versus "book". supposedly cheaper and possibly quicker? take a look at the gov website and see if anyone can get one or if there are special requirements.

deshea

[desheah]

emarismom,

your post is very well said. all of us just want to do what is best for our children. we all come from different backgrounds, but we have that in common.

good night,
deshea

[pat]

theresa,
another option is a passport "card" versus "book". supposedly cheaper and possibly quicker? take a look at the gov website and see if anyone can get one or if there are special requirements.

deshea
The card is cheaper, considerably, but definitely not quicker . . . I've been told as a Passport Acceptance Agent, that we should tell anyone who applies they'll have them in hand sometime mid June, at the earliest . . .
p

[jillw]

Theresa,

When we have taken an extra day to make a mini-getaway we have stayed at the Springhill Suites (http://www.marriott.com/hotels/travel/yulsh-springhill-suites-old-montreal/) Its a Marriott property in the "old montreal" section which is quaint. It isn't a suite per se (i.e. not a separate room with a door) but it does have an extra sitting area with a pull out couch/microwave/mini fridge in addition to the regular room part. Clean rooms. Indoor pool which the kids enjoy and a good breakfast is included. Parking is extra. Its an easy 20 min. drive to the hospital-they can give you directions at the front desk. Rates vary but the AAA rate we got may have been around $169? Another visit we got in late and left immediately after so we just stayed at "Ruby Foos" which is closer to the hospital and is a cheaper property. I believe the rate was under $100, but the rooms have an older feel to them - yet were adequate. Good luck

What age do you need passports for if you are driving? I don't remember what the cutoff is, but I know with my 7 and 5 year old we only needed an original birth certificate for them (and a passport for us). If time is really an issue, perhaps your husband could take her up (I know, you wouldn't want to miss the appointment, but if you had an appointment and your passport didn't arrive in time ...)

[jillw]

Theresa, like you I didn't have any idea of the severity of scoli either. Although my daughter's pediatrician recommended that I take her for xrays, he said it was no rush (I don't think he realized she already had scoli, I suspect he thought she just had a mild assymetry to begin). I scheduled an appointment as soon as possible and got her in within a couple weeks, but the truth is, the reason I got her in so quickly is because school was about to start again and I didn't want her missing school for the appointment. The day of the appointment when I found out she was already in full blown scoliosis and I did more research, I also felt as if the world was crashing down and couldn't believe that I had been so blissfully ignorant during the 2 weeks we were waiting for her xray (I really assumed the assymetry wouldn't become an issue until she hit 12 or so worse case....and even thought it might go away on its own before then based on the pediatricians words) I think many doctors take a very casual approach to getting the scoli xrayed and diagnosed.

Emaris, during the 5th grade screening, a small "hump" was found on my neighbor's daughter. They took her to the pediatrician, but not an orthopedist so it hasn't been xrayed. I keep telling her to get an xray so she has a good understanding of what they are starting with - which is hopefully nothing/false positive, but at least they'd know....

[shaes mom]

Thanks all for the information on hotels. I would let my husband take her alone (if I absolutely had to) the only thing is the long drive. I'm sure he could handle the 5-6 hour drive if he had to but I'm sure it would make it much easier if we could share the driving.

I'm still waiting to hear from Dr. Rivard's office. I called and emailed last week and called again today and emailed again today. I am ANXIOUSLY awaiting a response. Now that we've made the decision I just want to get it done. In the meantime we'll get our applications in order and I'll continue to hold my breath (does anyone else find themselves holding their breath when they get anxious?)

[christine2]

Shaes mom
As I said before we make mini vacations out of our trips. Up until our Montreal trips we were basically home bodies. I tell my daughter that because of her Dr. trips we get to see and do new things.

We have been to Lake George, Lake Placid, Parc Safari Zoo (that was fun) The Great escape .....

I am not sure what to plan for this summer (July we hope) Anyone have any ideas??????

I remember our 1st trip. I was so nervous. I need to pace when I am anxious, but you can't pace when you are in a car for 7 1/2 hours!! We had rented a cottage on a lake but then found out about the scoliosis. Dr Rivard saw us quickly but the date landed right in our vaca week. We spent a ton of $ that summer. The cottage (which we used for 2 days) the brace.

It was odd being in a French speaking hospital. It was like walking thru a maze to get to the bracing clinic. But it was all worth it, I felt like we won the lottery when Dr. Rivard gave us the #'s after the 1st inbrace x ray!!!!

My daughter is so young, she handled everything great. She did not feel well on the ride home but my husband and I agreed that once that brace goes on we follow instructions "to the letter", 20 hours a day right from the start! And that is what we did. My daughter is so good about compliance. I ask her if she wants out of brace time and she says no. I am very lucky

I will throw out info as I remember it:

We have had a terrible time find body suit or under clothing for the brace. My daughter will only wear the Spinecor bodysuits. Every time I am there I pick up 1 or 2 new ones. It is a PAIN to get them shipped!! If I had know I would have purchased 1 or 2 extra on the 1st visit.

We ask for my daughters x rays on a disk while we are there, again a PAIN to get them sent.

I keep a small notebook, I write everything down in it (DR phone #'s, Insurance info , ? I have to ask Docs) I also care for and elderly mother so all her stuff is in there too.

We also need to get passports, the info I have says birth cert. can be used up until summer 2008 but double check that, things can change especially when it comes to Homeland Security.

[christine2]

I just did some research and it appears that we will not need passports until June 2009. If that is the case that could save a couple hundred $ (for now).

Anyone have info other than that please let me know

[shaes mom]

Hi all,

Good news. I spoke with Dr. Rivard today and we've gotten Shae in on May 22nd to see him. I'm excited and scared and nervous. I know we'll be in good hands though and that's reassuring.

Hope all is well with everyone!

[emarismom]

Right now passports are NOT needed to cross the border into Canada if you are driving in. They ARE needed if you are if you are flying into Canada though. So if you you were to fly to Montreal, you would all need them. If you were to fly to Vermont, and then drive into Canada, you would not need them yet.

They will be needed by next year. You maybe able to save the money for now, but remember the process of getting the passports can take several months. Last year it took me three months to get passports for my kids.

[desheah]

hi everyone,

we got back from montreal late last night. dragging this morning . . .

lucas is the same (which is definitely a good thing). in nov he was 24/18. now he is 21/19. he looks good overall. just a little adjustment to the straps. we need to loosen the pelvic straps since they are chafing a bit. dr. coillard recommended that we do it. next appt. in sept.

need to get back to work.

my best,
deshea

[2kids]

Right now passports are NOT needed to cross the border into Canada if you are driving in. They ARE needed if you are if you are flying into Canada though. So if you you were to fly to Montreal, you would all need them. If you were to fly to Vermont, and then drive into Canada, you would not need them yet.

They will be needed by next year. You maybe able to save the money for now, but remember the process of getting the passports can take several months. Last year it took me three months to get passports for my kids.

Here are the details on travel by air, land, and sea. http://www.cbp.gov/xp/cgov/travel/vacation/ready_set_go/

Get a passport for everyone in your family now! You never know when a great travel opportunity will present itself. :)

[jillw]

Deshea, yay! I'm glad you got good news. I didn't understand...the pelvic straps are chafing now but you need to wait until September to loosen it? In any case I'm happy to hear things went well.

[RugbyLaura]

Excellent news Deshea!

I'm reading your post as Dr Coillard recommended that you loosen the straps (now) to stop the chaffing and (seperate point) next appointment in September. :D

I don't think you'd want to wait until Sept :eek: !!

Laura

[desheah]

laura,
thanks for making the clarification. :o yes, that is exactly what i meant and i loosened the pelvic straps this afternoon. everything is a-ok.

jill & laura,
thanks for the congrats! it's nice when things go smoothly.

as a little aside, dr. rivard recommended that we keep lucas' brace on during gymnastics. he would prefer giving him a break when he wasn't active. i'm not sure if lucas was so keen on this, but we'll give it a try! that was the only change/suggestion.

deshea

[RugbyLaura]

I think keeping the brace on during gymnastics is a great idea! Hopefully Lucas is young enough to comply! Immy is reluctant to wear it for gym / dance / PE / anything!

Start as you mean to go on... (& good luck!)

Laura x

[jillw]

duh, Jill! If I'd paid attention to Deshea's periods I would have realized what she meant the first time!

I had also been told to have the out of brace time be during less active times - I guess the theory behind the brace is that it is through movement (while wearing the brace) that makes the brace effective. So far, other than swimming or during a recital where the brace would show through the costume, Katie has been wearing the brace for gym/dance/soccer/etc. (although on occasion during more vigorous movements, a snap comes unpopped). Deshea, good luck getting Lucas to try wearing the brace during gymnastics!

[shaes mom]

Deshea,

That's fabulous news! You must be so happy. It must be so nervewracking every time you go there. Now get some rest until September (yeah, right, I know).

[jillw]

Shaes mom,

I meant to post that I think Christine's pointers from a couple days ago were good ones (get extra bodysuits/going full time from the start, etc). Like Christine posted, my daughter was also uncomfortable on the way home. She was very disturbed when first wearing the brace and putting her in the car for a 4 hour car ride was probably not the best thing. So I'll throw in my advice, bring distractions!!!! We brought DVDs that she had never seen for the portable DVD and we stopped at a Friendly's and got her a big sundae (once we crossed the border back into the states and got into Plattsburgh)...the combination of movie/ice cream did calm her down and distract her for which I was eternally grateful.

Another word of advice, if you get spinecor (or any brace for that matter) try to hide your anxieties. The night we got home and tried to put her brace on after the bath was stressful because I was afraid I was doing it wrong. Then my husband put a strap on a way that was wrong and I had to undo it and both husband and I were tense and tentative and my daughter picked up on it and freaked out that the brace didn't feel right. It took us hours to calm her down (and more distractions...i.e. letting her film things around the house with our camcorder ) Anyway, maybe you will have more confidence than we did (and it does get easier), but if you don't, fake it! :)

[shaes mom]

Thanks for the advice Jill,

Good advice is always welcome. I will be sure to buy many bodysuits (do you think 4 or 5 would be okay?). I plan on bringing my camcorder to video how they put it on just in case we have any questions about it at a later time. I have to start making a list of things I need to take care of. This is going to be a whole new learning experience. I will bring a dvd player as well.

I have her previous (April 9th) x-rays on a CD. I am planning to bring those. Do you have any other advice as to what to bring, what I should have her wear?

Thanks so much!

[shaes mom]

I just spoke with Dr. Rivard and answered one of my questions. She will need to wear a bodysuit (one is provided with the brace). Each addt'l is $60. So maybe if I buy 3 ($180) that would be sufficient (at least for my checking account). By the way, if anyone else needs to know ... the brace is $3,100, the x-rays are $350 and the appt. is $100. To go to NY it would have been $3,800 for the brace, $400 for the exam, $375 for 2 x-rays before bracing and $175 for an additional x-ray with the brace. That's $4,725 v. $3,550 ($1,175 difference) WOW! That will cover the hotel, food, gas and the bodysuits!

[HaleyMom]

Hello Shae's mom
You may want to hold off on buying too many body suits until you know if your daughter likes them.

My daughter thought they were too much trouble. She prefers a long cami and her own underwear. She takes the whole brace off everytime she needs to use the bathroom. It takes her less than a minute to take it off and snap it all back on.

The one body suit we did get, is too small after just 9 months - she's grown 1.5 inches.

[emarismom]

Shae's mom,

I'm going to second the point of not buying the bodysuits unless you are sure that your daughter will wear them!! My daughter did not last one day in hers. We literally went to Target on the first day she got her brace and bought some very tight tees and some of the boxer type undies for girls. She wore these for awhile and then I found some form fitting longer tees that actually come down under the brace. She has worn those for 8-9 months now.

A few days ago I bought some tees at J C Penny in the juniors department that Emily loves!! She says they are awesome because they are super soft and thin. They are very long, form fitting, and have a crew neck type.

[christine2]

Sheas Mom

The others may be right about the bodysuits. My daughter is still too young to take off and put on her brace so she needs the bodysuit with croutch snaps so she can deal with it at school. Her little fingers are not strong enough to do the snaps and I don't want her to go to the nurse everytime she needs to go to the bathroom or the LOO as some of the others say (I LOVE IT) Your daughter is old enough that she may be able to do it herself. You may find some good alternatives to bodysuits. We have 4 bodysuits at all times this way I can keep them washed and ready.

As soon as we got back from her 1st appt. We had some playdates with some of my daughter's closest friends and we told them about the brace. I also discussed it with their parents so they could have conversations with their kids about how my daughter may need some extra attention and understanding at first. This seemed to help, I found her talking to them about it rather than trying to hide it. That made her more comfortable.

We also took pics to help us remember, on the plastic base i wrote with a laundry marker #'s and arrows, we had a session with the school nurse and daycare on how to resnap if need be. That has come in handy.

[jillw]

Haleys Mom, I'm impressed your daughter can put her brace on in a minute...it takes me longer than that! (and in fact it takes my daughter close to a minute just to snap her bodysuit and reattach the crotch snaps after the bathroom...but she's still young. When she's older and can actually put on the brace herself, she may prefer something other than the bodysuit also). Just curious, isn't it a pain in a public(and often germ laden) restroom (school/stores etc)...where does she put the brace while she's going to the bathroom?

Emily's Mom, so does that mean emily takes her brace off every time she goes to the bathroom also?

Shaes Mom, Although I'm sure you posted it, I don't remember how old your daughter is. If she is younger, its unlikely she'll be able to put the brace on herself so you'll need some sort of bodysuit or snapped underpants. On our first appointment, we got 2 extra bodysuits (for a total of 3) to see how they worked. I'm doing a load of laundry nearly every day so we get by with 3 but sometimes its challenging. Maybe get 1 extra bodysuit and commit to doing laundry enough to always have one clean. Then you would be going back for followup one month after the brace, so if she likes the bodysuits you could get more then. If she doesn't like it, you haven't wasted too much extra money.

Also, regarding xrays...when you get your xrays from st. justines, they put all previous xrays on the CD. When we left after Katie's first appointment we were exhausted and just wanted to go home (and didn't want to wonder around the hospital and wait to get xrays). The next visit (a month later) we got xrays and it had xrays from both visits. Just a FYI in case you too find yourself exhausted after the first visit....

[emarismom]

Emily only unsnaps the crotch straps and undoes the velcro on the legs. Then she lifts the pelvic base a little and uses the restroom. Afterwards, she readjusts the pelvic piece and connects the straps and leg bands. It does take her a few extra minutes in the bathroom.

At first I was worried that she wouldn't put everything back on right. But it seems to be going well. She reallly prefers for the leg bands to be VERY tight around her legs, so this helps to keep the pelvic piece tight and in the right spot.

When we had the bad xray in Dec., the chiro here blamed it on the way Emily was wearing the pelvic piece. Since we have started seeing the original chiro who braced her again (he is out of state from me), he is very satisfied with how she wears it (and the brace seems to be working properly now). He has told me not to worry that she does things differently than other children might, he says that all the children he sees have different preferences and ways of wearing/dealing with the brace.

[christine2]

JillW

The same thing happened to us, we were so tired we did not even think about getting the x rays. After our last visit I got a disk but when we got home her most recent x rays were not on it, the tech neglected to burn it. Needless to say I was a bit ticked off. I tried to get them but what a pain, I decided to wait till next visit.

Good point about the one month follow up and getting more bodysuits if wanted. They are $ but I have decided that they are a necessity for my daughter. We are very carefull to take care of them. We have had problems in the past with broken snaps. I tell her dont "rip them apart" that has helped. I have tried applying velcro, no good. Had a seamstress apply velcro, no good. What can I say, my daughter has expensive taste.

Emarismom

If it works for Emily, I say don't mess with it!! They all have to find their own way to be comfortable and confident.

[shaes mom]

It helps me so much to see you guys bounce your ideas off of each other. I think I will buy 2 for now. I was just concerned with the warm weather coming and sweating a lot. Shae is very active. Currently she does Tae Kwon Do 2x a week, dance 3x a week and afterschool kickball 1x a week. So I figured after a heavy workout (Tae Kwon Do) she might to use more than one a day. But I guess I can even wash them by hand if I need to in the beginning. Shae's 11 so she can probably manage everything herself.

I'm a little confused on the x-ray thing. Should I ask for it on a CD or no?

Thanks again everyone for all your help.

Theresa

[christine2]

Yes I would ask for an x ray on CD. I copy them onto the computer and share with my daughters doctors as well as impress my freinds with them.

[MJB]

Hi, my name is Marlowe and I have an 8 year old daughter that was diagnosed with Scoliosis on January 11th of this year. Her first xrays came back as only 20T/25L on Jan 11 and she was put in a brace on March 20th by Dr. Rivard and Dr. Colliard, her 20 degree curve was now 32 degrees.

We go back to see the Dr. this week, so we'll see how this brace is working for her, so far I think it's pretty good, although I have some concerns of other shifting happenig, hopefully it's nothing, Dr. Rivard says with a high Thoracic curve, it's common.... anyway, cross your fingers for us!

[emarismom]

MJB,

I will keep my fingers crossed. That seems to have been a very rapid progression from January to March. Have the doctors given you an explanation for this rapid progression. Have you had them remeasure both xrays to make sure that they are both accurate readings.

[HaleyMom]

MJB
Good luck this week with your appointment.

I was concerned about shifting as well. My daughters back looked very different after a few months in the brace. The compensating lumbar curve was straightened, making her look more crooked on top. After 9 months her thorasic curve has decreased but it's elongated and the apex shifted down 2 vertabrae.

Shae's mom
Your daughter should have no problem with the brace if she's 11. The snaps are really stiff and would definitely pose a challenge for a younger child.

We got a new set of elastic bands at our last appointment - the original ones had lost their elasticity and strap 4 was constantly popping off. The snap was on the ends of original elastic bands. But on the new bands, the snap is on a short thin ribbon sewn to the end of the band - much easier to snap on and off. If your daughter is very active, be careful washing the brace. The bands can really shrink in the dryer. We only wash the top half once a month and then let it air dry.

[RugbyLaura]

Marlowe, good luck with your appointment. Please let us all know how it goes.

Theresa, Re body suits, etc. Immy has................ 8 (yes, eight!) She has not wanted to wear anything else up to now & I'm not very organised so tend to run out :eek: The new ones are a little more roomy and a little softer. Immy actually prefers the old ones, she wears the XS size. The poppers take a little getting used to and can be frustrating & time consuming at first but they soon get the hang of it. I tried velcro in the early days but it was not successful. Light velcro was not strong enough and the stronger stuff was too thick & uncomfortable.

The other day Immy put her brace on with nothing underneath (well, just a pair of knickers), a friend's daughter wears it this way and finds it much cooler in the summer. She said it was fine but would be better with poppers on the knickers. She would not be keen on taking the brace on & off when she goes to the loo (There, said it; just for you Christine :D) as it's time consuming & "boring". I shall have a go at putting some poppers on regular knickers. This would also solve the problem of always forgetting to take underwear with us when she goes to an activity where she takes the brace off. (I always carry a pair in my handbag these days - Could be a little embarassing if pulled out instead of my hankie??)

Getting the brace IS very stressful; it's soooooooooo much better than the rigid brace but is still distressing for child and parents. It can rub to begin with and you will probably have tears (yours and Shae's) - We certainly did. But persevere; it will get better & better. I agree that it's best to wear it as much as possible straight away. We bought Immy a memory foam mattress topper which is fantastic! (I want one) and she slept in the brace the first night. She has never had any trouble sleeping in it which was one of my worries. Spinecor is now just part of our everyday life. A slightly annoying part but Immy's rigid brace is prominently displayed in our house as a reminder of how wonderful Spinecor really is.

I wash her brace once a week (almost every week) as an ordinary item & tumble dry on a low heat. The brace is fine with this but Immy has a moan every Saturday that it's got tighter.

Laura x

[jillw]

Hi Marlowe, I hope you get good news at the next appointment!

Laura, this will be our first summer where Katie was braced and I was wondering if the brace would be comfortable without an "undershirt" or bodysuit on top. Sounds like your friend does fine. I was thinking of looking into adjusting underwear with snaps to accomodate some of the hotter weather days, but I didn't know if Katie would end up with brush burn/irritation where the straps wrapped around her torso. If you figure out how to add poppers let me know how it works! Funny, we just got a new bodysuit for Katie and I thought it seemed softer, but I attributed it to the fact that it hadn't been one of 3 bodysuits in rotation for the past 6 months that have gotten a lot of wear and washing!

Emily's mom, interesting, that might be another way to get around needing a bodysuit yet not having to take of the entire brace (my daughter can do all the pieces on the pelvic piece so she would be able to do what emily does) Good because I need various ideas for the hot summer months.

Shae's mom, Just an FYI the bodysuits do shrink a little (and a little more after consecutive trips to the dryer) so we try to air dry the bodysuits as much as possible. Having said that at least once a week I'm throwing one in the dryer because I need one ready quickly.

[shaes mom]

Marlowe,

Best of luck with your appt. I will be taking my daughter there next month and I'm praying she doesn't get worse before then. The anxiety of every appt. must be awful.

Hello everyone,

A few questions you might be able to answer for me.

How often do you wash the brace?
Do you wash only part of it?
All of it?
Do the extra straps cost (not that it matters) but would they provide you with an extra set at the beginning just in case (like if they stretch out or get soiled)?
Shae hasn't had her period yet but I'm wondering what you do in that case. I imagine there isn't much you can do to prevent soiling. Any suggestions?
Are the bodysuits sleeveless? Do you know if anyone out there just makes briefs with snaps?

Again, any and all help is appreciated.

God bless all,

Theresa

[sparklegirl59]

i'm currently in a boston brace, but i wuz wonderin if the spinecor is any better, comfort wise, and is it 2 hard 2 velcro the crotch straps when needed 2 use the restroom. :confused: u guys say it takes a couple extra mins. in the bathroom, so i wuz wonderin if i should ask my doc if i should get a spinecor and my back is lookin MUCH better (2 me) than wut it started out as. that just goes 2 show that my prayers r workin!!! ;) i'm happy bout that but i hate the brace i'm in now. it's 2 hard and i hate when i hit somethin and it 'klanks'. i hate even thinkin that i have 2 wear a brace in the 1st place!!! i HATE it draedfully and i want it off NOW!!! i cry all the time about it and i wunder if that spinecor is any better and would be of any relief 2 me. thx 2 any1 who replies!!! :) God bless!!! -val :p

[Pooka1]

(snip)that just goes 2 show that my prayers r workin!!! ;) i'm happy bout that but i hate the brace i'm in now. it's 2 hard and i hate when i hit somethin and it 'klanks'. i hate even thinkin that i have 2 wear a brace in the 1st place!!! i HATE it draedfully and i want it off NOW!!! i cry all the time about it and i wunder if that spinecor is any better and would be of any relief 2 me. thx 2 any1 who replies!!! :) God bless!!! -val :p

Val, I have been thinking a lot about you lately. I really like and admire you.

I am so sorry the brace is making you so miserable.

Maybe you are right that you could benefit from another type of brace that might be more comfortable for you. Do your folks know how difficult it is for you?

My daughter wears a night-time bending brace. It took her a while to get used to it but now she sleeps through the night with it and she isn't sore.

Maybe at your next appointment you can ask your orthopod about whether or not you could try another brace. I have no idea what she (he?) will say but even if they say no, it might help you just having asked the question.

Good luck.

[christine2]

Theresa

The way I do the washing is as follows

Once a week I wash the whole brace. I have 2 small laundry bags I put the top in 1 bag the bottom in the 2nd. I wash in cold water on delicate cycle with detergent (no fabric softener) I add some Oxyclean. Dry on low in the dryer. I put some towels in dryer with it so it does not bang around and we are good to go!!

We have only had 2 times when we have had emergency cleaning, but remember my daughter is only 7. Yours is older so you may not need to worry.

There is a small sleeve on the bodysuits which helps protect the arm pit. I had been working with a woman at bodysuit.com on coming up with a new bodysuit design but she had some family problems and that has been delayed. I tryed to alter underpants myself but my daughter will only wear the Spinecor suits. I also tried to get her to just wear the brace with no top for the summer but she said it felt "weird".

We are still on our 1st brace. It is a bit worn but still very effective. I have had to have 2 snaps replaced at the local shoe smith twice, they did it right there while we waited.

Val
I am not sure if the Spinecor is better than the Boston brace. What I do know from the research I have done is that a brace is only good if the wearer is compliant. It can't hurt to research other options but what ever you choose you need to work hard and do whatever it takes and have faith.

[RugbyLaura]

Val, I'm sorry that your brace makes you so sad. I know it's hard but you need to try to think of your brace as a GOOD thing. It's doing an important job and yours is doing it well! You're getting an excellent correction in it. Spinecor is not right for everyone and is still uncomfortable and annoying. Have you spoken to your parents about how you feel?

Theresa, Immy's brace gets the rough treatment from me! I chuck the whole thing in with whatever else needs washing (light colours only, but does the colour really matter?). I wash it on an ordinary 40 degree programme with normal detergent (Fairy non-bio, don't know what your equivalent would be) and fabric conditioner. The only concession I make is to reduce the spin to 800rpm. Having said that, I have been known to accidentally leave it on 1400 with no ill effects!

I either tumble dry it on a low heat, put it on a radiator or hang it on the line; depending on the weather, time, etc. All options work equally well & it takes very little time to dry.

We're still on the first brace and it looks fine. Immy has had new crotch straps as they were always falling off (not the fastener end) and a new number 4 as it came undone a few times at night. Yes, you have to pay for them.....

Christine, re wearing the brace with nothing underneath - this was actually Lisanna (I hope Gerbo won't mind me saying). She found it more comfortable like that & had no problems. I imagine it's like anything else; if you build up to it gradually, the skin will get tougher where it needs to.

Re periods. I don't know! We're in the same boat there & it's something I do worry about. BUT Melissa (Matjesnic) always said it was no problem - just apply the pad to the bodysuit (if I remember correctly). Immy is tiny & physically still quite a way off this I think.

The main problem Immy had early on was chaffing caused by the leg straps & crotch straps. I saw a lot of posts in the early days about moleskin & rubbing alcohol. We never used anything, just allowed the skin to heal & harden naturally; but perhaps Immy was lucky?? What we have been told is NEVER to use a cream - this will prevent the skin from hardening & will prolong the problem.

Hope this helps,

Laura x

[desheah]

quick addition to everyone else's responses regarding the brace washing. i do it once a week in separate bags, cold water, no fabric softener and in the dryer for 1/2 the amount of time as normal (i have a really old dryer). one snap gave us a lot of problems and eventually broke. my husband replaced the snap from a fabric store on the pelvic base and the strap.

as far as replacing the straps, dr. rivard and coillard specifically said this time that they are seeing better results from keeping the same straps. we've had ours almost 2 years now. he would like to wait until 3 years unless something happens to them. dr. coillard does check them when she does the readjustment. so, yes, our brace is not pristine, but it's doing the job.

my best,
deshea

p.s. we'll be away in florida leaving tomorrow for a week so i won't be posting or reading for awhile. i need a little break from thinking about scoliosis! i'm sure everyone knows what i mean . . .

[jillw]

Like Laura's daughter, we experienced issues with chafing. She is fine with the leg bands now, but still can be sensitive at times where the crotch straps go. We tried to just let it go to toughen it up also - which has generally worked, but not perfect. If the skin under the crotch snap seems to be getting more tender at times. I generally just put a big bandaid on her (under where the crotch snap hits) which reduces the friction and seems to help during those times.

[HaleyMom]

as far as replacing the straps, dr. rivard and coillard specifically said this time that they are seeing better results from keeping the same straps. we've had ours almost 2 years now. he would like to wait until 3 years unless something happens to them. dr. coillard does check them when she does the readjustment. so, yes, our brace is not pristine, but it's doing the job.
.

"every 2-3 years" That's very interesting. :confused:
Our expensive chiro says he typically replaces the straps after one year (and yes we have to pay for the new ones). He feels that once they start to lose their elasticity they are no longer effective. Haley's bands had no stretch left at all by 9 months but she's very active and wears it for dance, gymnastics, PE, etc.

I was worried that too many times in the dryer was making them stiff. That's why we now wash the bottom half once a week but the top half only once a month and let it air dry.

[RugbyLaura]

Have a great holiday Desheah!

Jaymes10, I have seen your post in Val's thread & wanted to tell you how pleased I am for you! At our last appointment Immy's consultant said that some children (Immy included) are just so flexible that you'd get a different result from each each xray - even within minutes of each other.

I'm really surprised was given the summer off..........

Laura x

[MJB]

quick addition to everyone else's responses regarding the brace washing. i do it once a week in separate bags, cold water, no fabric softener and in the dryer for 1/2 the amount of time as normal (i have a really old dryer). one snap gave us a lot of problems and eventually broke. my husband replaced the snap from a fabric store on the pelvic base and the strap.

as far as replacing the straps, dr. rivard and coillard specifically said this time that they are seeing better results from keeping the same straps. we've had ours almost 2 years now. he would like to wait until 3 years unless something happens to them. dr. coillard does check them when she does the readjustment. so, yes, our brace is not pristine, but it's doing the job.

my best,
deshea

p.s. we'll be away in florida leaving tomorrow for a week so i won't be posting or reading for awhile. i need a little break from thinking about scoliosis! i'm sure everyone knows what i mean . . .

I was also told by Dr. Rivard that my daughter would have the same brace for 2-3 years, which at that time it would need to be replaced.

[MJB]

Well we went for our 1 month check up to see how the brace is doing and get it adjusted. Her in brace xray didn't change but that's ok, we are extremely pleased because her first in brace xrays last month were unbelievable!

Her brace was adjusted and it is sooooo tight that she is uncomfortable, she had to sit out of 1/2 of her dance classes today because it was hurting her. She looks so crooked right now in it but I've bought her a lot of babydoll tops to try and help with that.

[MJB]

I would just like to say that with our past experiences in Montreal I am happy to say that we finally found a hotel that we were impressed with! It's near the airport, just off the highway and only a 10 minute drive to the hospital. I highly recommend the Residence Inn Marriot Montreal Airport. The room was spotless, the guest services were amazing, they have a complimentary breakfast buffet in the morning that has everything you would want on it, hot and cold. The pool is a salt water pool, it's a little chilly but within seconds of getting in you are fine and there is a hot tub also. It's also a fairly new hotel, only a few years old which is good because many things in montreal are very old and in need of renovations. We booked it through expedia because it was $30 cheaper on there.

*edited to add* it's also in walking distance to many restaurants and a mall.

[MJB]

Does anyone know why there isn't an "out of brace" xray until treatment is completed? Does this mean that I wont see the *true* results for years from now?

[RugbyLaura]

MJB, I'm really glad your appointment went well & that Halle's measurements haven't changed. Was the xray taken before or after the brace was adjusted? Immy has hers taken before adjustment so we never see what improvement is achieved.

She is due to have an out of brace xray at her next appointment (in June). As discussed before, this will not be a true out of brace x-ray as she will only have taken it off some moments before. Mr Mills says that the important measurement is the in brace one.

I will ask him for further detail when we next see him & post his answers for everyone.

[emarismom]

Next time we have an x-ray, which will be in late June/early July (just over a year in brace), we will have it out of brace. We were told to take Emily out of the brace 24 hours before the appointment to get a real picture of where her curve is actually at.

Emily's ortho is not exactly thrilled that we haven't had an out of brace in so long. In fact, I'm going to actually do the out of brace x-ray here at home with her orthopedic doctor, and then either go to Atlanta to see the chiro for a brace adjustment, or if he thinks no adjustment is needed, maybe be able to postpone the trip until September.

At this point I am very anxious for the out of brace xray!!

[MJB]

MJB, I'm really glad your appointment went well & that Halle's measurements haven't changed. Was the xray taken before or after the brace was adjusted? Immy has hers taken before adjustment so we never see what improvement is achieved.

She is due to have an out of brace xray at her next appointment (in June). As discussed before, this will not be a true out of brace x-ray as she will only have taken it off some moments before. Mr Mills says that the important measurement is the in brace one.

I will ask him for further detail when we next see him & post his answers for everyone.

Thanks Laura! We went down to the Dr's first and they adjusted her brace and sent us for the xrays.

They also said the same thing to me about the important measurement being the in brace one.

[MJB]

Next time we have an x-ray, which will be in late June/early July (just over a year in brace), we will have it out of brace. We were told to take Emily out of the brace 24 hours before the appointment to get a real picture of where her curve is actually at.

Emily's ortho is not exactly thrilled that we haven't had an out of brace in so long. In fact, I'm going to actually do the out of brace x-ray here at home with her orthopedic doctor, and then either go to Atlanta to see the chiro for a brace adjustment, or if he thinks no adjustment is needed, maybe be able to postpone the trip until September.

At this point I am very anxious for the out of brace xray!!

Yeah see I don't know but I feel like and out of brace xray should be important, I mean it would show the true result right? It's looking like we will have to wait a few years until we get one.

[mariaf]

Yeah see I don't know but I feel like and out of brace xray should be important, I mean it would show the true result right? It's looking like we will have to wait a few years until we get one.

MJB,

I agree about out of brace x-rays. My son never wore a spinecor but I did ask Dr. Betz once why he requires patients to be out of ANY brace for at least 24 hours before x-raying them. He said that it takes that long for the muscles to return to their normal positions and it's the only way to get a true and accurate x-ray reading. He said that if you x-ray someone right after they take their brace off you could get a reading that is significantly less that what the actual curve is.

Hope this helps.

[MJB]

Thank you for the response Maria! I think at some point I will probably get the family Dr. to get my daughter an xray done and have her out of her brace for 24 hours prior to it. Not for a while though because she has only been in it for a month but I just want to make sure that this brace is helping.

[mariaf]

Hi MJB,

I think that's a good idea to get an occasional out-of-brace x-ray. Just be sure to have a pediatric ortho read it and do the measurements.

Good luck - you sound like you have all your bases covered!

[RugbyLaura]

Hi all,

Marlowe - how is Halle doing now? Have you spoken to the Drs about her uneven hips? It is certainly nothing I've heard about before with Spinecor. I hope she's having less pain now - If you're a bit under the weather everything is that much harder to deal with & you need your mummy more. Perhaps the unexplained fever & headache were symptoms of a virus. Hope she's better now.

Well, Immy has been wearing her brace without a body suit, just over a pair of boxer short style knickers, for a couple of weeks now. She finds it much cooler & pulls the shorts to the side to go to the loo. So far no problems! She does have some fairly nasty looking marks on her skin but she assures me that they don't hurt.

Had a bit of a panic last week as, since replacing the crotch straps at her last appointment (in March :eek: ), she's been wearing the base of the brace too high. This has meant that the bands have been a bit loose & she hasn't had the correction she should. Have discussed it with Mr Mills & corrected it now - much to Immy's disgust as she had got to like the new, more comfortable, position!

Hope you're all doing well. Our next appointment has come through - 23rd June.

Thinking of you Theresa - not long now. :)

Laura

[MJB]

Hi all,

Marlowe - how is Halle doing now? Have you spoken to the Drs about her uneven hips? It is certainly nothing I've heard about before with Spinecor. I hope she's having less pain now - If you're a bit under the weather everything is that much harder to deal with & you need your mummy more. Perhaps the unexplained fever & headache were symptoms of a virus. Hope she's better now.

Well, Immy has been wearing her brace without a body suit, just over a pair of boxer short style knickers, for a couple of weeks now. She finds it much cooler & pulls the shorts to the side to go to the loo. So far no problems! She does have some fairly nasty looking marks on her skin but she assures me that they don't hurt.

Had a bit of a panic last week as, since replacing the crotch straps at her last appointment (in March :eek: ), she's been wearing the base of the brace too high. This has meant that the bands have been a bit loose & she hasn't had the correction she should. Have discussed it with Mr Mills & corrected it now - much to Immy's disgust as she had got to like the new, more comfortable, position!

Hope you're all doing well. Our next appointment has come through - 23rd June.

Thinking of you Theresa - not long now. :)

Laura


Thank you for asking how Halle is, she is doing much better now. She only really complains about these bruises she has from the brace.

She is sick right now and unfortunately I am catching it too, but when it comes to the brace she is pretty good!

About the uneven hips, I think I was looking at it wrong, it's more because the brace is pulling her so far to the opposite side that her one hip sticks out so far, so it's not really uneven I guess.

[Kalarasy]

We came back from Montreal today. My son thoracic curve went down to 6 from 11 degree last time. We almost have 2 years since he is in spinecor and we never had out of brace x-ray. We asked dr. Rivard and he said we will do one when his curve is stabilized. So far his curve's been up and down, between 11 and 3 from 31. I am wondering when his curve will get stabilized?
Also one of his leg is shorter by 9 mm and his primary physician said to not do anything about it, but he gets heel pain when he runs a lot. Did anybody else have this problem? Thank you for your advice. Even though I am not writting a lot I always read your posts. It's a great place to be. Because of you I decided to choose spinecor over providence brace. Thank you soo much!

[christine2]

Shaes Mom

Your appt in Montreal is coming up!!!! I can't wait to hear how things went PLEASE let us know!!!

[shaes mom]

Hello everyone,

I'm sorry I haven't been on. My husband was diagnosed with an aortic dissection (aneurism in his heart) and underwent emergency open-heart surgery on 4/27. He made it through that but 10 days post-op suffered a stroke. They discovered he had a hole in his heart (same as Tedy Bruschi) and had that repaired. He is paralyzed on his left side but is starting to regain some movement. Yesterday (5/19) he developed an abscess on his original incision and is back in the hospital and receiving antibiotics. So far everything looks ok. His CAT scan came back negative but the doctor wants to wait 24 hours to make sure his cultures come back clean (no infection).

We're leaving in the morning to go to Montreal (my sister is going with me). Her appt. is on Thursday. I have our passports, her last x-rays, body suit, camera (so I can video everything for the hubby since he's a PT). Today is the only day I have to prepare so if anyone has any last minute advice I'd greatly appreciate it.

Fondly,

Theresa (Shae's Mom)

[mpj]

Hi Theresa,

Wow, you have lot on your plate. Best wishes for your Canada trip and with your husband.

Take Care and God Bless.

Sarah

[emarismom]

Theresa,

I will keep you and your family in my prayers for a speedy recovery for your hubby and good news in Montreal.

Michelle

[christine2]

My Goodness you and your family have delt with a ton . Best wishes to you all !!!

The only advice I can give you for Thursday is write everything down, on your car ride there make note of questions, take notes when you are there and don't forget a disk of your x rays (I forgot our 1st time). Make sure you get receipts for insurance too.


When you get back we all can give our motherly and fatherly advice so don't worry you are not alone.

[jillw]

Shaes mom, I am so sorry to hear about your husband's illness. I had a hard enough time dealing with decisions about treatment for scoliosis when my daughter was diagnosed so I can only imagine what a challenging time all this is for you.

Good luck in MOntreal - I hope you have a productive appointment. Your husband and your daughter are in my prayers.

Jill

[shaes mom]

Hi everyone,

Shae got her brace. She was 20T 17L pre-brace and 5T 4L post-brace!!! Unfortunately, it was so tight she cried most of the way home and for the first 2 nights went to sleep crying with a dose of Benadryl (that helped). Now she is doing great! She's adjusted quite nicely and I'm very proud of her. The only problem I'm having (she's having) is that she wants to take it off during activities when it's hot. I told her she had to be at rest. At least that's what I've read here on the posts - is this true?

After we got over the border back into the states she called her Dad in the hospital to tell him about it. Then we found out my husband was having another surgery. It was a long 6-hour ride home. It seems he developed a very rare infection and his ribs had become unstable. So they opened him back up, removed part of his sternum and reconnected the ribs to the pec muscles. He will now be part of a case study because the bacteria is so rare and will be on antibiotics for life because they are not sure if the replacement aorta (made of Dakron) has any bacteria on it which could be lethal for him. It has been one hell of a rollercoaster ride for us that's for sure. This has also set him back on his rehab and his shoulder has dislocated because it is "just hanging there". We hope to have him back in rehab by the end of this week and get him mobile. He had his first good day yesterday - thank God for miracles.

I know this is the Spinecor thread but I thank you all for your prayers and well wishes.

I hope to catch up now that everything finally seems to be going in the right direction. I hope everyone else is well out there.

Theresa

[jillw]

That is wonderful news about Shae's correction!!! My daughter also had a terrible time sleeping the first few nights (and even a few nights after that she would sleep but would whimper in her sleep...it broke my heart) She has no trouble sleeping now. This is a tough time to get the brace since the weather is warmer...my daughter is used to doing all her activities in the brace by now and because we live in upstate NY its only now starting to get warm....I'm not sure how she'll react to the brace this summer in the heat, I suspect there will be some challenges.

I'm sorry to hear about your husband. That's so scary. I hope things stabilize soon and they get the infection under control. Please keep us updated on how he is doing.

[christine2]

Theresa

Sounds like a great visit. From what I understand the better the initial correction the better the long term outcome. My daughters curve has been going down every other visit and Dr Rivard is very optimistic. I would assume that is the same case with your daughter's prognosis!!

I am sorry you are going thru so much, I wish I could say something to help!!! Just know that my family wishes yours all the best.

[shaes mom]

Shae is doing great in her brace!!! She has already forgotten to take her breaks.

Thank you all for your concern. My husband is expected to go to rehab this week. Last night he slightly opened his hand which has frustrated him greatly (he plays guitar, not to mention everything else). I feel things are on the upswing (I'm afraid to even say it since it has been backfiring on me every time). Even though he's depressed a lot of the time and wishes time would pass quicker things have been moving forward and he has shown progression as to his movement. It will be a long road ahead but we will get there I am sure of it.

Bless you all,

Theresa

[emarismom]

Theresa,

That's wonderful that Shae is handling the brace so well! My daughter also adapted well. Now we are at the one year mark and she is starting to really complain about it. It's been really hot and humid lately, were in Miami, and she has been having a hard time. I had signed her up for summer camp this year, but I don't know if she can handle it. Last year she stayed home in AC most of the time. I'm getting worried about how this summer is going to work out.

I'm glad to hear that things are starting to look up. We have to have faith that GOD knows what he is doing and NEVER gives us more than we can handle. (Although at times he sure puts us to the test).

[christine2]

Emilys Mom

It must be tough in Miami, we are fortunate to be in the North East. Not too hot. I was also concerned with summer camp. I found one through our local comunity college, a science program and a program called acting adventures. It is indoors (A/C). We chose 1/2 days. It is and enrichment program. This way the kids can make new friends and we can still enjoy the outdoors when comfortable.

[emarismom]

Christine2,

I'm sending both of my kids to a camp they have been to before. Last year I didn't send them anywhere (I am a teacher, so I'm home in the summer). It's just that there is NO WAY I am staying home with my 12 year old son again all summer. I don't want to be the entertainment committee anymore. Since Tristan is going, Emily wants to try it. She does have the option of not going, but I feel bad for her to be "bored" with "noone to play with".

The doctor who braced her said that if she is at 10 degrees out of the brace when we get an xray in June, that he may take her out for awhile and see how she does. I'm not sure I agree with taking her out of the brace completely, even for just a few months to see what happens. But the idea of taking her out of it during the day for the summer months is really becoming appealing. I am so confused right now. I really WANT to take her out, if the curve is low. By the same token, I'm terrified that if we give her a break, she will enter a growth spurt at just that moment.

All through the past year having her in the brace has really seemed easy. Lately, it seems we are all just not handling it as well.

[jillw]

emarismom,

I hope her out of brace curve is around 10 degrees! I would feel the same as you do, especially since Emily is hitting the age where the spine grows more quickly. I suspect if I were in your shoes I would still have my daughter wear her brace much of the time...but instead of her wearing it 22 hours a day, it would great to be way more relaxed about it...and if once or twice a week there is a pool day where she would be out of brace for 6 consecutive hours or so it would be so nice to not have to worry since it would still be better than the "doctor's orders"

I have wondered what people wearing braces (spinecor as well as the other types) do in the summer since swimming and playing by the pool time increases drastically.

[emarismom]

Last year I bought an above ground pool since I was home with the kids. Emily would take two hours out of the brace in the morning. Then dry off and quickly put on the brace. Then in the afternoon she would go back in for 1 hour 45 minutes, then run straight to the shower. It became our daily ritual.

By the end of the summer the kids were bored with the pool and only wanted to go in it when they had friends over. That pool really did help her get through last summer, but this year neither of the kids wants me to set it up again.

Emily has been allowed to wear her brace for 20 hours a day, not 22. The Spinecor is so much better than a hard brace, and I am very grateful that we have been able to chose this path. But having said that, this path is filled with bumps and turns too.

[RugbyLaura]

Hi All,

Theresa - I'm thrilled for you that the brace is working so well for Shae (and envious that you caught the curve so early!). I sorry to hear about your husband's problems & wish him all the best for a speedy recovery.

Marlowe - if you're reading this - just to say that Immy has never had any problems with bed wetting (pre or post brace). I certainly agree with Cheryl that it needs checking with your doctor but would also say that my son (no brace!) has the odd "accident"; generally when he is extremely tired. Perhaps Halle is just adjusting to the brace and things will be back to normal (or as near as possible) soon.

Michelle, we're holidaying in Florida in August this year - probably not the best decision ever! Even given the size of Immy's curve I am going to ask her consultant what is the minimum time she can get away with wearing the brace. I am seriously contemplating leaving it behind :eek:

Has anyone travelled through airport security with a child in a brace? Last year (pre-Spinecor) we flew to Paris and Immy had to go through the machine 4 times, taking off different things each go, as she kept setting the alarm off. She was really embarassed. It turned out to be her jeans popper! I dread to think what will happen with Spinecor!!

Laura

[emarismom]

Laura,

Firstly, I would not leave the brace behind completely (while I'm sure that Immy would be thrilled too). Yes, the heat is at times unbearable. Over the past month, we have seen too many days around 95 degree with 75% humidity :eek: However, when you are indoors, air conditioners are ALWAYS running.

I would suggest she brings the brace and wears it in the evenings and when you will be indoors. I did take Emily to Busch Gardens last year in August and she wore the brace during the morning hours in the park. As the day got hotter, we took the brace off and I stuck it in my bag. She was fine with it. The next day we did go to a water park where she was out of the brace for 8 hours straight. (The only time we have done that in the year she's been in the brace).

As for airport security, it has never been an issue. This year we have traveled by plane three times and never has the metal detector gone off with the brace. I usually carry a copy of the Spinecor brochure with me, just in case. (Most of the time I am also carrying x-rays too).

Hope this helps,

Michelle

[cherylplinder]

Do any of you have a way to contact MJB directly? Her last post about bedwetting has me really concerned about the possibility of diabetes in her child. She said she had an appointment for next Tuesday, but with her last post describing symptoms, I feel I need to contact her. Give her my e-mail and number if you can.

601-681-8047 cherylplinder@hotmail.com

[jillw]

Cheryl, that's kind of you to take such an interest. I hope she checks back on the board so she can read about your concerns.

[WNCmom]

Hello All--

I think this may be my last post on the Spinecor thread.

A short history: my 12 yo son Sidney was diagnosed with AIS 18 mos ago (T30/L25 approx), and after 6 mo in a Boston brace (9 mo after diagnosis), the curve was progressing, so we switched to SpineCor, thinking we had nothing to lose. After 4-5 months in SpineCor, he was still progressing, so we tried an intensive therapy program (not Schroth; it was something new offered by the chiro who fit the brace) and actually had modest success after a week, but who knew whether it would last?

I had promised myself we would check out VBS, so I contacted Janet Cerrone at Shriner's in Philadelphia, and she squeezed us in for a consult with Dr Betz on June 10, which worked because we were to be up in VT for a family reunion and had a day and a half to make the (6-hr) drive down and back. We were overdue for a visit with the first ped ortho surgeon we saw, and considered this not only a consult, but a much-needed second opinion.

The consult revealed some new information. Although Betz thinks Sidney probably does not have Marfan's Syndrome (he has ordered tests to rule it out), he believes S has enough marfanoid characteristics to indicate that the scoli is not ideopathic. He determined this very quickly by, among other things, looking at a spot on the pelvis on the x-ray, where he saw a "thin space" (there's a medical term for it that I don't have in front of me) that is indicative of Marfan's. Marfan had been mentioned by our first ortho, but S was still classified as having AIS.

The bottom line is that Betz believes the scoli is being driven by the underlying condition, and not only is S not a candidate for VBS and/or VEPTR, no amount of bracing will affect the curve. In addition, S now has a second T (compensatory) curve above the main T curve. Betz is recommending posterior fusion T1 or 2 to L1 or 2 within 3-4 months. He suggested we take some time to think, but that in the meantime we get penciled in for a surgery date. We were so impressed with all the Shriner staff, and with Betz and Janet, that we did so (although we have no surgery date yet). We also met with Dr. Cahill, who would be doing the surgery. He is much younger than Betz, has been at Shriner's 9 months, has done about 60 such surgeries, and all he does is work on spines. Janet told us that "in our world," on a scale of 1-10, this would be a "straightforward" posterior fusion--about a 1.5.

We had been worried about future growth: Sidney will be well over 6 feet tall--even with his curve he is over 5'7" at age 12. He would be 13 by surgery time. We were told he would lose very little height with fusion, which I have heard elsewhere. We are also concerned about correction--on a supine bending x-ray, the main curve only reduced to about 30 degrees; it appears to be quite stiff. I have read more than once of kids whose curves turned out to be more flexible than originally thought; I hope that's true for Sidney. His main curve measures approx 50 degrees; the other two are about 50 and 40. (They are measured differently by each doc--even on the same x-ray--and we are getting used to that!)

I have some questions for anyone reading this:

1. Anyone have experience with Dr. Cahill?
2. Dr. Betz recommended S wear a rigid brace between now and the surgery. We are very reluctant to do that and told Dr. Cahill so (and that we are willing to continue with the SpineCor). He seemed okay with that. S is very slender and has not much muscle development at this point (it's just the body type--my husband was like that as well, and many others in his family). We are concerned about muscle atrophy. And we wonder: if no amount of bracing would control the curve, how would a brace help now?
3. I'd be interested to hear the experiences of parents of boys fused at age 13. It's still hard for me to think about. Sidney is more cerebral than athletic, but he enjoys playing a little basketball, backpacking, whitewater kayaking, and ultimate frizbee--I guess it's good he doesn't go in for full contact sports.
4. Anyone else here have a child whose scoli is being driven by Marfan's or Marfan-like conditions? I'd be interested in hearing about that, too.


So--that's where we are. I am sleeping okay, but at the moment, my days are real emotional rollercoasters.

One more thing: do I regret the SpineCor and other things we've tried? Not at all. For all I know his curves would have been larger without them. And I just had to feel I'd left no stone unturned to avoid fusion. I still believe SpineCor is a good option for lower curves.

It occurs to me now that I should have posted this on the surgery thread, but this is where I started, so it seemed right to put it here.

I know it's a long post, and appreciate the chance to write it; this forum has been, and I expect will continue to be, a huge help to me, both for support and information. Thanks, everyone.

Mary Ellen

[jillw]

Awww Mary Ellen, I'm sorry to hear that S isn't a candidate for VBS and you must be disappointed to hear that fusion is required - however I am glad that Shriners was able to identify what is going on. I have no experience with Dr. Cahill, but have seen very good things posted about him (and Shriners Philly) on the yahoo VBS forum. I'm assuming you have been to that forum? (http://support.vertebralstapling.com/user/Discussions.aspx)

When they say Dr. Cahill has done 60 surgeries, is that 60 fusion surgeries or is that aggregating both VBS surgeries and fusion surgeries together?

I'm inclined to agree with you that if no bracing is going to hold him (which has been your experience with the boston and spinecor braces), it might be better to keep him in spinecor in the interim so he can maintain more core body tone and have an easier/less restrictive time while waiting for surgery....having said that, I would try to get him on the calendar for fusion ASAP so that his time for further progression is limited. Although frankly, if Dr. Betz/Dr. Cahill felt it was very important to get him in a rigid brace over spinecor in the interim, I would probably defer to them. They seem to be open minded about various scoli treatments and the quality of life of their patients - so if they strongly recommend a rigid brace over spinecor, I would know they are not saying it lightly and would probably follow their advice. In this case it seems like Dr. Cahill is OK with S remaining in spinecor... does Dr. Betz know your concerns?

Good luck - I hope you get some good answers to your questions and please keep us updated!

Jill

[flowerpower]

Hi Mary Ellen,

I'm sorry that after all your efforts to avoid, your son will need to have a spinal fusion. My son was 14 when he had fusion surgery, and yes, he did lose a bit of height as he continued to grow afterward. My son is much like Sydney, more cerebral than athletic. I'm happy to answer any "boy" or other questions regarding the surgery, it sounds like he may have about the same # of levels fused as my son. As far as the brace right now, it may just help keep the curve from progressing more rapidly (which could, but not always, mean less correction). Best wishes to you and Sydney, you will be in my thoughts and prayers.

Renee

[Susie*Bee]

Dear Mary Ellen-- I'm sorry that your son will need surgery, but it sounds like things are falling into place for it. You have worked hard, I can tell, with all you've done for Sidney.

You asked if anyone knew anything about Dr. Cahill-- and that is the main reason I'm responding. I googled the Philly Shriners to doublecheck, and the picture and first name match up with the Dr. Patrick Cahill I came to know a little over a year ago. He was finishing up his fellowship in spine surgery at Rush, working with my surgeon, when I had my surgery. I can only testify about his pre-op and post-op treatment, because I don't think he took part in my surgery. (At least his name isn't listed on the op-report.) I found him to be a very thoughtful, helpful and encouraging doctor-- both in my last appointments pre-op, and as I recovered in the hospital. I looked forward to his visits and his encouragement during the 11 days I was in the hospital. I even have his picture in my scoli scrapbook. :D He's a very nice fellow! I was going to send him a thank-you, but by the time it occurred to me, he was no longer at Rush.

That may not help much, but as far as helpfulness, demeanor, and bedside manner go, I give him an A+.

[WNCmom]

Thanks for your replies. My understanding is that Cahill has done 60 of the kind of fusions recommended for Sidney.

Our plan is to get the tests done in late July or early August (S leaves for a month of camp next week--he will of course be wearing his brace during that time)--all at Shriners were okay with that and said that fall would be the earliest he could be scheduled in any case--they just told him to have a fun, active summer. We're just taking baby steps with this, and have not made the final decision yet, but are proceeding as if we have--does that make sense? They can't confirm a final date until we have the test results back.

Mary Ellen

[Pooka1]

Hi Mary Ellen,

You know, I never thought of my kids having either AIS or Marfanic scolisois but the idea makes sense. They were diagnosed as having AIS but I think they could equally have Marfanic scoliosis.

My girls have most of the skeletal indicators for Marfans... tall, flat feet, long fingers, mild/moderate pectus excavatum as infants/toddlers (has since completely resolved on its own), scoliosis, etc. But the clincher was when I looked up Marfans and it said "blue sclera." My heart sank a million miles... my girls had blue sclera as infants for a period of a few months. I walked around numb for a few weeks after reading that recently. The pediatrician at the time saw that and said it might indicate a rare condition but that I shouldnt worry about it and didn't tell me which condition.

I'm going to have them tested for the heart and eye problems. They don't have any eye issues to date so I'm hopeful it's just skeletal with no aortic involvement.

Best regards,
sharon

[MJB]

I am reposting this in here because it's regarding the spinecor brace...

Has anyone elses spinecor brace rusted? there are 2 spots that have rusted on her brace and I don't know why, she has had her brace since March 20th.

[WNCmom]

Sharon:

Sidney has excellent eyesight so far, so I'm hoping for him what you're hoping for your girls--no other serious marfan characteristics.

Mary Ellen

[Pooka1]

The bottom line is that Betz believes the scoli is being driven by the underlying condition, and not only is S not a candidate for VBS and/or VEPTR, no amount of bracing will affect the curve.

Hey Mary Ellen,

Can I ask you about this comment from Betz?

Is Betz saying that *if* the scoliosis is due to either Marfan's or marfan-oid cause then braces are KNOWN to be ineffective?

If so, I'm getting a diagnosis on Willow and if the cause of her scoliosis is thought to be non-AIS then she can lose the brace immediately I take it. Unlike Savannah, Willow doesn't appear to be progressing over the last several months, before or after the brace, but I can't eyeball it with so little rotation.

sharon

[ReneeM]

Mary Ellen,

My 10 year old son had VBS performed by Dr. Cahill in February of this year. He is AMAZING and was so patient with all of us. We have to travel to Philadelphia and Dr. Cahill has been very accomodating in dealing with us "out of towners." Please send me private message if you'd like to talk about our experience in more detail.

Renee

[WNCmom]

Sharon:


Is Betz saying that *if* the scoliosis is due to either Marfan's or marfan-oid cause then braces are KNOWN to be ineffective?

That was my understanding. Of course, that is his opinion. I have not read or heard elsewhere that that is true, but then I haven't researched it. Betz does have a 50+ page resume with a long list of research papers he has produced....he is well-known and respected in the field. Others on this forum are more knowledgeable than I about his qualifications (and about Marfan's as well, I'm sure), but he is certainly highly qualified.

Renee:

Thanks for the offer! I sent you a PM.

Mary Ellen

[Pooka1]

Mary Ellen,

Thanks for this.

I am going to contact our surgeon tomorrow about this and also our orthopod who recommended our surgeon.

If necessary, I will get another opinion from someone experienced in this area.

If Willow doesn't have to wear a brace then I'm going to find that out ASAP. Just knowing this is a possibility, I already feel bad for every night she has worn it already. :( :mad:

sharon

[WNCmom]

Sharon:

I'll be interested to know what you find out.

Mary Ellen

[Pooka1]

I have been googling. Betz has considerable agreement for his statement.

Check out the last line of this abstract...

http://cat.inist.fr/?aModele=afficheN&cpsidt=1515743

"Physicians should understand that most patients with Marfan syndrome who have a curve of more than 25° and a Risser sign of 2 or less will reach the surgical range, even with brace treatment."

Willow is in that category (ETA: Assuming she is diagnosed with Marfan's). Savannah was in that category (ETA: again assuming she has Marfan's) and has been fused.

Well, I guess if this pans out, the silver lining will be Willow can lose the brace immediately.

Thanks so much for mentioning that comment from Betz.

sharon

ETA: As I understand it, if my girls only have the skeletal issues and no aorta/heart/eye involvement then they do NOT have Marfan's Syndrome. It must be certain skeletal issues plus another system like heart or eyes. They have no issues with their eyes or heart or stamina to date so I'm guessing the diagnosis will not be Marfan's but we will see. Anyway, I wonder if bracing is still considered ineffective for kids without the syndrome but just the bone issues. Somehow, I doubt there is any study that has examined that question. :(

[WNCmom]

So here's a question for people who know more about VBS: if a child with Marfan's or marfan-like characteristics is stapled within the eligibility limits for VBS, would staples be expected to hold better than an external brace?

I know I have kind of hijacked this thread, but from another perspective it's worth knowing whether SpineCor will work or not in a case like this, and if not, what else might.

Carmell? Maria? Anyone?

Mary Ellen

[RugbyLaura]

Mary Ellen - Sorry to hear your news. I know very little about VBS and even less about Marfan's so am not best placed to answer your question. I'm sure others with more knowledge will be along soon to help.

My feeling would be that the issue is rapid growth. Do you find that Sidney's brace needs to be adjusted greatly at each appointment? Perhaps your orthotist (or US equivalent) may have a view on this.

My own instinct (regarding the rigid v Spinecor brace) is that 1) Spinecor is much more comfortable and convenient (quality of life) and 2) it allows the spine to remain more flexible leading to a better surgical correction.

Good luck with your search for answers.

Laura

[jillw]

Mary Ellen, don't apologize! You're not hijacking the thread - all these issues are inter-related and please keep posting here because we want to know how Sidney is doing (or if you don't I"ll be on the lookout for you on other threads) AND we all learn from these posts.

[mariaf]

So here's a question for people who know more about VBS: if a child with Marfan's or marfan-like characteristics is stapled within the eligibility limits for VBS, would staples be expected to hold better than an external brace?

I know I have kind of hijacked this thread, but from another perspective it's worth knowing whether SpineCor will work or not in a case like this, and if not, what else might.

Carmell? Maria? Anyone?

Mary Ellen

Oh boy, I missed a day or so on the forum and it seems a lot has transpired!

Mary Ellen - I am so sorry to hear that you did not get the news you were hoping for about your son. That sort of thing is often harder on the parent than the child. My heart goes out to you as a parent.

This is such a difficult question above (and I, of course, am not a medical professional), but from what I read you said that Dr. Betz felt that neither VBS nor VEPTR would help your son avoid fusion, correct? and that this was due to the fact he felt an underlying condition was driving the curve?

I know that he (Betz) will not recommend VBS if he feels there is not a very good chance for success because he would not want any child to have to undergo TWO surgeries - VBS and then ultimately, fusion.

As an aside, I have known Dr. Betz for four and a half years and seen him in action. In fact, I have sent a lot of parents to him, some whose kids had difficult and complex cases. There has not been one time the parents were not pleased and impressed. In fact, a few times the parents went to him for a second opinion and were SO impressed, they switched their childs' care over to Betz and Shriners.

All that being said, all of these questions (about bracing and/or VBS/VEPTR being effective in kids with Marfanlike skeletal characteristics, etc.) are for the medical professionals as they are very complicated. If you prefer e-mail communications, Janet Cerrone can be reached at:

janetcerrone@comcast.net

I also have an e-mail address for Dr. Betz. If you'd like it, please PM me or email me.

I also wanted to add my gut feeling (and hope) that neither your son nor Sharon's girls have Marfans but rather just some "marfan-like" skeletal characteristics. I don't know all that much about Marfans but I have heard or read of several kids having only some characteristics but NOT actually having Marfans.

Best of luck,

[RugbyLaura]

Hi all - have just waved Immy off to a residential activity course with school.

She will be gone until Friday evening and will be doing all sorts of activities while she's away - abseiling, canoeing, climbing, caving, etc, etc. She is very private about her brace so I don't think her teachers take it very seriously - hope she's OK! To be honest, the brace will probably be the easy part - I should be more worried about what state her hair will be in when she gets back! Dreadlocks I imagine!

Has anyone else's child been on this kind of trip in a Spinecor brace?

Laura

[WNCmom]

Of course you are right, Maria. These questions are best for Janet (who as you said, was wonderful, by the way--and so was Dr Betz), and when I have a few minutes to gather my thoughts and think I can be articulate enough, I will send her an email. I think she can answer any of them, or get the answers.

Maybe Sidney's curve would have progressed regardless of anything we did. But being a "no stone unturned" kind of person, I wish I'd asked more questions back when Sidney's curve was at 30--18 months ago. That was before I found this forum. I know you will all say not to beat myself, but it's a challenge not to play the "if only" and "what if" game. The truth is, it's been nearly 9 months since we knew fusion was becoming more and more likely. And what we have is what we have.

All water under the bridge. I'm now doing my best to let go and be grateful that fusion is even an option. We are very fortunate to be living in this day and age.

Mary Ellen

[mariaf]

[QUOTE=WNCmom]Maybe Sidney's curve would have progressed regardless of anything we did. But being a "no stone unturned" kind of person, I wish I'd asked more questions back when Sidney's curve was at 30--18 months ago. That was before I found this forum. I know you will all say not to beat myself, but it's a challenge not to play the "if only" and "what if" game./QUOTE]

Ahh, Mary Ellen - we ALL tend to beat ourselves up simply because we are the parents and we feel we "should" be able to FIX everything for our children.

My friend, Carmell, says that "guilt is a useless emotion".

I can't tell you how many times I have said that to myself over and over - I know in my head that it is true, but our hearts are a different story.

It only means that you are a great mom and love your son dearly.

But, please don't beat yourself up too much. The truth is, most of this is out of our hands. Your son is lucky to have a mom like you who IS trying to leave no stone unturned and to be at his side every step of the way.

Hugs,

[HaleyMom]

Hi all - have just waved Immy off to a residential activity course with school.
Has anyone else's child been on this kind of trip in a Spinecor brace?

Laura

Hi Laura
Haley spent a week at girl scout camp last summer -cabins with no air conditioning. She wore her brace over a one piece bathing suit all week. The brace was filthy but she survived and had a really great time.

I'm sure Immy will have a great time as well.
Lisa

[jillw]

Elain/qiling,
Hi. Back in the fall I remember you posting that when you went to Montreal that blood tests were taken by Dr. Moreau as part of his research and that he would send you the results. Just curious, did you learn anything interesting? How is his research coming? And how is your daughter Jennifer doing?

Thanks, Jill

[mpj]

Hi All,

I am a little tardy in posting, as we visited Montreal a few weeks ago. Just a little crazy with the end of the school year and getting into the summer groove. Anyway, all is well. Madeline is still holding at about three degrees.

Sarah

[RugbyLaura]

Sarah, excellent news about Madeline!

Just back from Immy's 1 year review. Curve measured 26 degrees, she has grown 1.5 inches in 3 months. All is well.

Only in brace xrays for the forseable future. We are happy with this approach.

Laura

[bb1013]

I was wondering if anyone has even seen Dr Craig Cohen. He is in Charlotte,NC. I spoke with him last week and was considering taking my daughter to him. I was just wondering if anyone had any opinions?

Thanks,
Jason

[jillw]

Jason, Sorry I dont know anything about that doctor.

Sarah, what wonderful news! Thanks for sharing. I don't remember, how long has she been wearing the brace?

Laura, great news about Immy too! I always wonder how spinecor will do during that fast growth spurts that come with pre-adolescent and the fact that her curve held despite the fast growth is very encouraging! When do you go back, in 5 months?

[emarismom]

Laura and Sarah,

Great News!! I am taking Emily to her regular orthopedic doctor here in Miami on Thursday, as we haven't seen him in over 6 months. She will be getting an out of brace xray. I hope I et the same type of news that you two did!!

Michelle

[mpj]

Hi Jill,

Madeline has been in her brace for a little over 1.5 years. She started out at about 21 degrees.

Sarah

[jillw]

Sarah, I hope in another 10 months or so (which will be approx 1.5 years for katie) that we will be in your shoes!

Michelle, good luck on thursday - let us know how it goes! How long are you going to have Emily out of brace before the xray? Don't they say it should be at least a few days? (if i recall correctly)

[emarismom]

Her appointment is for 2:30 on Thursday, so I am going to take her out of the brace on Wednesday morning. That will give her about 30 hours brace free. (She is so excited) If her curve is around 10-12 degrees out of the brace, I think we are going to try keeping her out during the days at least for the summer. Her chiro (Dr. Oulette) told me to have her xray done here (Miami), let him know the results, and if things are going well, we can try and see what happens.

Remember, that Emily's curve is not idiopathic, it is caused by her Chiari/Syringomyelia. That may be why he is willing to handle her case a little differently. He also mentioned that he did not want to have to keep her in the brace for a straight 6-7 years. Since she was braced at 8 and is a risser 0, and has no signs of development yet, I guess he thinks we can give her a few months of wait and watch. I'll be talking to him on Thursday afternoon to see what he thinks after the xray.

All I know is that I think I am more excited about the thought of taking her out of the brace than she is. It has been so hot here, I feel so bad for her.

[emarismom]

Emily's appointment went well and there has been no progression of her scoliosis in the past year. I guess that is the "good" news. The bad news is that her out of brace curve is 23 degrees. This is basically the same as it was one year ago when we put her in the brace (21 out of brace then).

So while it isn't bad, it leaves us in the exact same place I was one year ago. Except we are one year closer to maturity, when this will hopefully all be over with.

At this point I have no idea if the brace is holding Emily's curve, or if the scoliosis is never going to progress. I guess everyone here is in that position, but because of Emily's prior surgery (brain decompression for Chiari), that may have halted the scoliosis progression, which has been stable for the 4 years since the surgery. She has stayed between 18-24 during this time frame.

I put her in the brace hoping to keep her curve low and to hopefully reduce it. I'm sorry for the ranting, I'm just disappointed and really not even sure if it is fair to keep her in the brace, with no proof that it is doing anything to "help" the situation. Part of me wants to just take her out and wait for actual progression to start. Of course if I were to do that and her curve did progress I'd be miserable too.

I was very surprised that the orthopedic was really leaning towards keeping her in the brace, stating it is better to over treat than under treat. I expected him to say "I never thought she needed it in the first place". I contacted the chiro who is following her. I am going to send him pictures of her in the brace tomorrow and FED Ex him the xray from today and the last one he took. Then we will decide when I need to make my next trip up.

[WNCmom]

Emarismom--

I just want to acknowledge your post. It must be frustrating to be in this situation. But what wonderful news that the curve has not progressed! I wish that were true for my 12 yo son, whose curve is progressing in SpineCor. Dr. Ouellette also fitted my son's brace. Lately we have been told his scoli is also not ideopathic, but a Marfan-like condition is driving it. We are looking at surgery (And I apologize if you already know this; I can't remember all the people who responded to my post). In spite of that, he is now attending a residential camp for a month, SpineCor and all. Of course, it's a bit cooler here in the NC mountains than where you are.

I just want you to know that if you do continue with the brace, it's still so much better than a Boston or other rigid orthosis.

Thank you for posting, and I hope you'll continue to let us know what's happening. I'm thinking of you.

[emarismom]

I know that the Spinecor is MUCH better than the rigid brace!! One of the reasons I got the Spinecor was to try to prevent the need for a rigid brace in the future.

Emily isn't even that upset that she won't be losing her brace now, as we hoped to try and do. Today she told me the real reason it is bothering her is that at camp when the girls go swimming, she has to take it off and hide it in her bag. She is really scared that the other kids will see it. She has recently become very concious of people seeing it or asking about it. Sometimes if someone new asks why she wears that (with some shirts a portion is visible), she replies "It's none of your business." Granted she is right, it's nobodys business, people, especially children are curious and want to know.

It is wonderful that your son is able to go away to camp. We spent a week in the NC mountains about a year and a half ago, what a beautiful place it is.

[RugbyLaura]

Hi Michelle,

I'm so sorry that Emily's curve measurement was disappointing. I don't really know what to say other than at least it has not increased...

Immy had an activity residential last week as thoroughly enjoyed it! She was totally independent as to when she took the brace off and appears to have been very sensible. She said it was a bit annoying having to remember to take it off / put it on / carry it around but her friends are all aware of it & are not really interested anymore. The only interest they show is when they argue over who is going to "help" Immy because they want to feel special too!

She is also reluctant to wear anything that shows even the smallest bit of brace - I am trying to understand this obsession but still think she should wear it with pride!

I hope Emily has THE BEST time at camp & please keep us up to date with what the chiro thinks.

Love,

Laura

[RugbyLaura]

Hi all,

Just going back to the "How long do the straps last" conversation of some time ago...

At Im's last appointment - 1 year into wearing the brace - most of the straps were replaced. She had some really bad rubbed bits on her waist & Mr Mills said these had been caused by the straps getting old & losing their elasticity.

The lack of elasticity means that they don't move with her when she bends & stretches.

Just a word of warning to others, if unexplained chaffing occurs out of the blue, check out the straps!

Her new straps are much better (although, as always after an appointment, I'm worried that he has made them too loose!)

Laura x

[christine2]

Hi Laura

Dr Colliard does not want to change the straps unless absolutly necessary. We are coming up to 2 years in the same brace, no replaced parts except for snaps. We will be needing the new crotch staps this next visit only because they are getting to short. My daughter is growing like a weed. Tall and slender!!

[mymollybt]

My daughter Brooke has just been diagnosed. She is 7 1/2 and her initial xray shows an S shaped thoracolumbar curve 33 degrees and 29 degrees. We're not new to scoliosis as my older daughter has been monitored for the same curve but so far holding at about 18 degrees (fingers crossed!)........We will be seeing our local ped. orthoped tomorrow (deals mostly with broken bones not juv. scolio)....and we will be visiting Shriners in Philly next week. I've been reading up on everything offered and am VERY interested in learning more about the SpineCor brace. Am I going to have to fight to receive a prescription for this brace? The data seems so promising regarding this system and the philosophy behind it makes so much sense to me. Also I love the fact that sports can be played in brace. She is a competitive soccer player who plays on a U10 team at 7 years of age.....she'll be crushed if she can no longer play...that is one of my biggest fears.

Anyway.....please feel free to pm me any info, stories, etc....or just reply here.......are your children adapting well to this brace. I am so afraid of bracing just crushing her spirit. I've been a wreck since we received this diagnosis........I've got to snap out of my funk and focus on what to do here.

Thank you so much for any info you can supply.

[mariaf]

Hi Mymollybt,

I just wanted to say that you will be in great hands at Shriners, Philly. We have been taking my son there since December, 2003. In fact, we went there to find an option to full time bracing for him.

As far as I know, none of the doctors there will prescribe the Spinecor brace.

(Who are you seeing by the way?)

That being said, they are TOPS in the field and it will be great to at least get their opinion on your daughter's case. In addition to bracing, if your daughter were to require surgery, they offer several non-fusion alternatives, such as VBS which my son had.

Best of luck to you - and feel free to ask me anything or e-mail me.

[mymollybt]

Thank you Maria,

We are seeing Dr. Cahill...who mostly works out of Erie.......from what we understand he is one of the dr's at Shriner's who will prescribe the SpineCor.....but we could be wrong - my husband is the one who did all the phone work as I was too much of a mess that day. I am very interested in learning more about VBS although to be honest that scares the hell out of me right now....but this whole situation pretty much scares me to death.......

Thanks for your support...I truly appreciate it.

Tracey

[mariaf]

Hi Tracey,

Nice to know your name!

Hmmm....I didn't know Dr. Cahill worked out of Erie. I actually know who he is and I thought he worked exclusively out of Philadelphia but I could certainly be wrong about that. In any event, I know a few VBS patients of his and the consensus among the parents is the Dr. Cahill is great. As I said I've seen the team in Philly in action for four and a half years and have talked to countless parents - and I can't stress enough what great hands your daughter will be in.

As an aside, IF you want to learn more about VBS, please check out this website:

www.vertebralstapling.com

Again, best of luck and keep me posted!

[jillw]

Hi Tracey, My daughter is also 7 1/2 and as you can see from my signature she was diagnosed last fall. I understand your feelings totally - the fear you articulated of "crushing her spirit" were the exact words I used with my husband. I'm guessing most mothers have this fear but it is probably even stronger for those who are diagnosed so young and face close to a decade of treatment.

Like you the philosophy of spinecor appeals to me because their daily life isn't compromised as much (in U10 soccer I'm sure she has many days with games and practices where a couple hours out of brace wouldln't be nearly enough time). Also, because my daughter is so young, I like the idea that she is still using her muscles and we don't have to worry about the side effect of muscle atrophy that can go with hard bracing. My daughter does EVERYTHING (but swim) in her brace. She has danced in dance competitions with it on (in the acts that the costume covers up the brace), she has played soccer, etc.

I will be interested to hear how your appointment in Philly goes because, like Maria, I didn't think Philly Shriners did Spinecor. I had heard a Dr. Sanders in Erie Shriners did (this was back in the Fall so things may have changed), so I guess it makes sense if Dr. Cahill works out of Erie also he might be able to prescribe spinecor? But also you can hear more about VBS and other options from Shriners. It would probably make sense to get Tracey in a brace ASAP while you weigh all your treatment options.

My feeling would be that if you were going to go with Spinecor, if you could make it to Montreal (where the brace was invented) that would be best. Nonetheless I am glad you are going to the Philly Shriners because they would be the people I would go to for any other treatment. I also realize that monetarily going to Montreal would likely be much more costly so you may prefer to get spinecor through shriners if you can. But if you can't, you might want to consider a visit to Dr. Rivard/ Dr. Coillard in Montreal. Or you can call Dr. Rivard and explain your situation and see what he thinks. I don't have his number handy right now but I'll post it later.

My only concern is this, Spinecor seems to work best for the smaller curves and your daughter's curve is on the larger side for spinecor (although if you read through this board you will see there have been some who had success so far even with curves starting in the 30s that have been reduced in brace. However, there are others with "bigger" curves who had good results initially, but over time the brace was unable to keep their curve from progressing and they did go on to require fusion surgery.) If you wanted to have your daughter braced for spinecor and she had a good correction, it could very well be part of the solution. But I would caution that it might not be a long term solution - for example as your daughter approaches that pre-adolescent growth spurt in the 9-12ish age range you might want to proactively decide if another treatment is called for. (but you still might have bought her a couple/few years)

In my opinion VBS (which I would go to Philly Shriners for) would be one of the other palatable options for someone in your daughter's shoes. I can understand that it seems overwhelming right now, but you would want to be careful about waiting too long because if she progresses she might not be a candidate for VBS alone (they might need to do VBS with a hybrid rod).

Who knows, maybe you can get her in spinecor which can halt progression for a while and as you further research options and speak to the folks in Philly. Then you can figure out if maybe VBS is worth it.

Decisions Decisions....they are overwhelming ! But it seems like you are off to a great start. Going to see the folks at Shriners Philly is a great start and obviously you are doing your research so your daughter is in good hands! Good luck.

p.s. I will send you a PM with my phone number - if you have any questions about spinecor or our experience with spinecor don't hesitate to call.

[mariaf]

My only concern is this, Spinecor seems to work best for the smaller curves and your daughter's curve is on the larger side for spinecor (although if you read through this board you will see there have been some who had success so far even with curves starting in the 30s that have been reduced in brace. However, there are others with "bigger" curves who had good results initially, but over time the brace was unable to keep their curve from progressing and they did go on to require fusion surgery.) If you wanted to have your daughter braced for spinecor and she had a good correction, it could very well be part of the solution. But I would caution that it might not be a long term solution - for example as your daughter approaches that pre-adolescent growth spurt in the 9-12ish age range you might want to proactively decide if another treatment is called for. (but you still might have bought her a couple/few years)

In my opinion VBS (which I would go to Philly Shriners for) would be one of the other palatable options for someone in your daughter's shoes. I can understand that it seems overwhelming right now, but you would want to be careful about waiting too long because if she progresses she might not be a candidate for VBS alone (they might need to do VBS with a hybrid rod).


Very well said, Jill. Looks like you've covered all the issues that need to be taken into consideration.

At 33 degrees, there is practically NO window for VBS alone. The newly-revised criteria are to "generally" use VBS and the hybrid rod, I believe, starting at about 35 degrees - and to use VBS alone only for curves under 35 degrees.

(Of course, no two cases are the same and there are always many factors to consider. No worries, though, they will look at the entire picture in Philly and advise accordingly.)

If it were my child, I think I would be leaning towards VBS now, not only to avoid the need for the hybrid rod, or to try to avoid fusion later on, but also in light of the instances you mentioned, that I was aware of as well, where Spinecor did not work in the LONG TERM on the larger curves.

Another important thing to note - with Spinecor all of the x-rays seem to be taken "in brace". However, I have heard some parents say that they go to an ortho as well for "out-of-brace" x-rays intermittently to be sure they are measuring the "true" curve. Dr. Betz, whose reputation speaks for itself, once told me that the only way to get an accurate measurement of a child's curve is for the child to be WITHOUT the brace for at least 24 hours. He insists on that for all his patients prior to all x-rays.

Tracey - please feel free to e-mail me as well. I am happy to chat by phone too if you like regarding my experiences with VBS or Shriners or anything.

[christine2]

Hi Tracey

As you can see from my signature we are having good results with Spinecor. We go to Montreal. In my opinion that is the best place for Spinecor treatment. It is a huge commitment to travel there but we are happy and willing to spend ALL OF OUR VACATIONS up north.

Unfortunatly scoliosis is unpredictable. We can only make the best informed decisions we can. Dr Rivard is very confident that we can avoid surgery. He said about 80%!!!

As far as wearing it it is very easy to do activitys in. My daughter only takes off the brace for swimming or when it is very, very hot. I would be happy to discuss this more if you would like.

[MJB]

I am really curious to know what Halle's "true" curve is now. I would like to have an out of brace xray around the end of the year to see how this brace is helping but that would require her to be out of the brace for 24 hours or more and her dad will not agree to that. Dr. Rivard will not give her an out of brace until she's been in it for 2 years, which is so far away because she only got it at the end of March.

[MJB]

during the time between visits (5-6 months) when the brace loosens a bit, does that cause a great risk for the curve to progress? It's too bad that when we go to Dr. Rivard they don't take the xray before adjusting the brace again.

I find that Halle's brace is loose in many parts, the Dr's. are not worried about it though.

[emarismom]

My ortho here was very concerned that the Spinecor protocol only called for inbrace xrays. He wanted me to take an out of brace xray 6 months ago, but I didn't. After the first full year, I figured I had to do what he asked.

The reason they don't take an out of brace xray before they readjust the brace is that in order to get a "true" measurement, the patient needs to be out of the brace for 24 hours. They need to see what the spine will do on its own.

Now, I feel even more worried than I did before, because now I wonder if the brace is actually doing anything for Emily, or if her curve has stayed stable because she has not entered a rapid growth phase, or if her curve will never progress because of the Chiari surgery halted the progression. I hate the idea of keeping her in the brace, if she is not progressing. If only I knew when she was going to start puberty? :rolleyes:

[mariaf]

I am really curious to know what Halle's "true" curve is now. I would like to have an out of brace xray around the end of the year to see how this brace is helping but that would require her to be out of the brace for 24 hours or more and her dad will not agree to that. Dr. Rivard will not give her an out of brace until she's been in it for 2 years, which is so far away because she only got it at the end of March.

Hi MJB,

You say Halle's dad will not agree to her being out of the brace for 24 hours - I assume he thinks that will be detrimental to her treatment? (I can figure out no other reason).

Please tell him that one 24 hour period out of ANY brace is not going change the ultimate outcome. If you think of all the hours someone wears a brace - say 22 hours per day - and you consider this over MONTHS and YEARS, one 24-hour period is a VERY small percentage of time.

That is why most, if not all, orthos will allow a child out of their brace for a day or more for illness (fever, stomach bug, etc.), or sometimes for skin conditions/rashes, etc. (I'm not speaking of spinecor here because I don't know what those docs allow, but speaking of all other braces).

Our former ortho once explained it to me the way I did above that in the "grand scheme" of things a day here or there out of brace isn't going to change the ultimate outcome of what the curve will do.

I hope her dad will reconsider as it is really important IMHO to occasionally get an out-of-brace x-ray to know what the true curve is.

I base this opinion on many things, including speaking to parents whose kids wore the spinecor (some of whom progressed but that's not my point here) - the point is those parents felt it was necessary to get and out-of-brace x-ray occasionally, and often it was quite DIFFERENT than the in-brace numbers. Some of these kids, whose out-of-brace x-rays indicated a larger curve, did end up progressing, some needing fusion and so the point being that the in-brace x-rays "can" catch progression earlier before the curve is "out of control".

Also, Dr. Betz explained to me at length recently why a child MUST be out of any brace at least 24 hours before he will x-ray them. He said doing it any other way can "mask" progression that may be taking place. With his reputation, years of experience and number of kids he's treated, that opinion holds a lot of weight for me.

Again, I really hope her dad will reconsider and I wish her all the best!

Regards,

[mariaf]

Now, I feel even more worried than I did before, because now I wonder if the brace is actually doing anything for Emily, or if her curve has stayed stable because she has not entered a rapid growth phase, or if her curve will never progress because of the Chiari surgery halted the progression.

Hi Emarismom,

Funny you should mention that - I recall being told once that curves with underlying conditions (such as chiari) may never progress once the underlying condition is addressed - so that "could" be the case with your daughter.

Of course, whether or not that really IS the case is the $64,000 question I suppose.

I'm trying to follow in your signature what has happened so far - you stated that after one year you felt you had to listen to your ortho who recommended an out-of-brace x-ray. Has that x-ray been taken yet? If so, what did they measure her curve at?

You have a tough call to make about whether or not under these particular circumstances it is necessary to keep her in the Spinecor. You sound like a great mom who is weighing all the factors, and I wish you all the best!

[emarismom]

Maria,

Emily was diagnosed at age 5 with 28 degree scoli. First MRI showed Chiari and Sryingomyelia. (Syringo is a fluid filled cyst that is inside the spinal cord and is presumably the "cause" of the scoli). She had a brain decompression surgery which dealt with the Chiari and reduced the Syringo. The cysts are still there but are MUCH smaller than when she was diagnosed.

The thought is that because the "presumable" cause of the scoli has been treated, the scoli may not progress. However, all studies are not in agreement on this. Some say there is initial stabilization of the scoli, while others indicate that 4-7 years after decompression "scoli progression is the norm". Scoli progression in kids with Chiari/Syringo is harder to control and progresses very rapidly, more rapidly than in kids with AIS.

She has been stable since the surgery. She has stayed in the 18-23 degree range for the past 4 years. I opted to put her in the brace because I did not want her to begin to progress rapidly and not have the benefit of bracing her before she reached the 30 degree point.

So in my situation, the question of bracing is even more daunting. The ortho is now leaning more towards caution, telling me to keep her in it as long as she tolerates it. Of course this is since he knows I am obsessive (just a little). He also knows that I will not put her into a hard brace. Her current out of brace xray (June 28) was 23 degrees. So she is still in the stable range. She has never since the surgery, been near the 28 degrees we started at.

I'm hoping that once school starts, Emily will tolerate the brace better. It has been so hot and uncomfortable here lately, that I really feel bad for her. The meltdowns have been frequent and I am having a hard time enforcing the brace, when I'm not sure it is helping.

[emarismom]

MJB,

I have to agree with Maria on the need for out of brace xrays. After a year with no out of brace xrays, I think parents can get a real "false sense of security". Not me per se, as you can see from my signature, that Emily's numbers have been all over the place, even with the brace.

If there is no OOB xray for two complete years, then when you finally get one, if the results are not the what you had hoped, it could feel devastating and misleading.

While I do believe at this point, that the Spinecor offers my daughter a better chance of staying stable, I also realize now that
a) it is not a guarantee.
b) every doctor who sees her will offer different opinions
c) every time I get an xray done, it is only a view of a certain moment in time. That image may not be the case tomorrow
d) I cannot be so rigid with her wearing the brace the alloted time, that I make my daughter completely miserable. She has already gone through too much. I do make her wear it as prescribed. However, for special occasions, days at the beach or pool- I have to be a little flexible. In the grand scheme of things, these few extra moments won't have a major effect on the progression of the scoli. But these moments may have a lasting impact on my daughter.
e) Most importantly, all that I am trying to do to prevent a fusion surgery may not work. If that is the case, then it is not a reflection of me as a parent.

[mariaf]

Hi Emarismom,

Thanks for explaining Emily's history. Sounds like you've done your homework and have come up with a good plan. So long as she's having the occasion out-of-brace x-ray then presumably the Spinecor can't harm her, so I guess you have nothing to lose by having her wear it - except of course for the fact that she doesn't seemed to be thrilled with it right about now -but I think your "flexibility" of allowing her a little extra time out here and there should go a long way in helping with that issue - at least that is my hope :-)

Keep up the good work.

[emarismom]

Maria,

I have also looked into the VBS and found that Emily is a candidate. I was pretty surprised by that one. As of now, with no definite progression, I am not pursuing that option. Should there be a change, then I may have to look more closely at that option.

Michelle

[mariaf]

Hi Michelle,

I figured you had heard of VBS so I didn't mention it as an option. I also didn't know whether or not you preferred to stay with a non-surgical approach (bracing).

But since you brought it up, just something to keep in mind in the future - recent studies at Shriners have shown VBS to be more effective for curves under 35 degrees. If one's curve was to progress over 35 (and hopefully that's never the case with Emily), then they would most likely recommend VBS plus a hybrid growing rod. They feel that a lot of the times (not always) the VBS alone is not enough to hold a larger curve (i.e., over 35 degrees).

So just keep an eye on her curve and you should be able to keep all of your options open :)

[emarismom]

If her curve ever measures 25 degrees, we are going for a visit to Shriner's. I'm not waiting for "significant" progression. Since she has remained relatively stable for so many years, anything higher than 23 is definitely a sign of progression.

Is the hybrid rod new? I don't remember reading about that. Since Emily will need MRI's regularly, up to now they have been yearly-at our last visit in April we were told we could wait 2 years :) , I have to be careful as to the type of metal that can used. As some metals interfere with MRI images. I think that titanium is okay. There are way too many things to be aware of.

I see that your son started off at 40 degrees, did he have the hybrid rod put in? Do you think that the VBS is all he will ever need?

[mariaf]

Hi Michelle,

Yes, the hybrid rod is relatively new. Earlier this year they re-evaluated the VBS data and while it has been largely successful overall, the highest success rate was with curves under 35 degrees.

So they decided that since VBS alone wasn't enough to stop CERTAIN 35+ curves from progressing, rather than put a child through VBS and then have them need another surgery later on, they would do VBS together with a hybrid growing rod for most curves over 35 degrees. My understanding is that the hybrid rod is not like a traditional growing rod, but rather more like the VEPTR in how and where it is attached, and therefore there is much less chance of spontaneous fusion than with a standard growth rod.

David did not have the hybrid rod because four years ago it wasn't used. I guess he was one of the lucky ones who started with a curve larger than 35 degrees but has remained stable. In answer to your question, of course we hope VBS is all he will ever need - and that certainly "may" be the case according to Dr. Betz - but unfortunately, as we all know, there are no guarantees with scoliosis. So we take it a day at a time - so far, so good.

Getting back to the hybrid rod, it's something to be considered when there is no other option that may prevent the need for fusion.

By the way, one of the spinal surgeons at Shriners (Dr. Samdani) is also a neurosurgeon, so Shriners might be a really good fit for you - even if you just wanted to go at some point to get an opinion - this way you'd already be in the system if the need for VBS or other intervention ever arose in the future - hopefully it won't, but there's absolutely nothing to lose.

You could even ask their opinion about whether or not Emily needs to remain braced, post-chiari surgery, at 23 degrees - or whether they feel she's not in danger of progression because the chiari has been addressed. Not saying you'd have to act on their advice right away or anything, but at least you'd have it to weigh in with all the other factors now or in the future (hope that makes sense).

Also, at Shriners (and I'm sure elsewhere) they are using "night-bracing" in CERTAIN instances as opposed to full-time Boston bracing. Again, just something to perhaps consider if Emily ever gets to the point, when she gets older, where she won't tolerate wearing a brace all day (to school, activities, etc.)

Best of luck to you. Feel free to e-mail me as well if you think that's easier :)

[MJB]

Hi MJB,

You say Halle's dad will not agree to her being out of the brace for 24 hours - I assume he thinks that will be detrimental to her treatment? (I can figure out no other reason).

Please tell him that one 24 hour period out of ANY brace is not going change the ultimate outcome. If you think of all the hours someone wears a brace - say 22 hours per day - and you consider this over MONTHS and YEARS, one 24-hour period is a VERY small percentage of time.

That is why most, if not all, orthos will allow a child out of their brace for a day or more for illness (fever, stomach bug, etc.), or sometimes for skin conditions/rashes, etc. (I'm not speaking of spinecor here because I don't know what those docs allow, but speaking of all other braces).

Our former ortho once explained it to me the way I did above that in the "grand scheme" of things a day here or there out of brace isn't going to change the ultimate outcome of what the curve will do.

I hope her dad will reconsider as it is really important IMHO to occasionally get an out-of-brace x-ray to know what the true curve is.

I base this opinion on many things, including speaking to parents whose kids wore the spinecor (some of whom progressed but that's not my point here) - the point is those parents felt it was necessary to get and out-of-brace x-ray occasionally, and often it was quite DIFFERENT than the in-brace numbers. Some of these kids, whose out-of-brace x-rays indicated a larger curve, did end up progressing, some needing fusion and so the point being that the in-brace x-rays "can" catch progression earlier before the curve is "out of control".

Also, Dr. Betz explained to me at length recently why a child MUST be out of any brace at least 24 hours before he will x-ray them. He said doing it any other way can "mask" progression that may be taking place. With his reputation, years of experience and number of kids he's treated, that opinion holds a lot of weight for me.

Again, I really hope her dad will reconsider and I wish her all the best!

Regards,

Thank you for your response, I completely agree with you and I hope he reconsiders too! He is worried about her being out of the brace for more than 2 hours at a time.

[MJB]

My ortho here was very concerned that the Spinecor protocol only called for inbrace xrays. He wanted me to take an out of brace xray 6 months ago, but I didn't. After the first full year, I figured I had to do what he asked.

The reason they don't take an out of brace xray before they readjust the brace is that in order to get a "true" measurement, the patient needs to be out of the brace for 24 hours. They need to see what the spine will do on its own.

Now, I feel even more worried than I did before, because now I wonder if the brace is actually doing anything for Emily, or if her curve has stayed stable because she has not entered a rapid growth phase, or if her curve will never progress because of the Chiari surgery halted the progression. I hate the idea of keeping her in the brace, if she is not progressing. If only I knew when she was going to start puberty? :rolleyes:


I am worried about when Halle starts puberty too... I hope her curve holds through that, I worry about how loose the brace has gotten since her visit in April and she still has to go until October.

[MJB]

MJB,

I have to agree with Maria on the need for out of brace xrays. After a year with no out of brace xrays, I think parents can get a real "false sense of security". Not me per se, as you can see from my signature, that Emily's numbers have been all over the place, even with the brace.

If there is no OOB xray for two complete years, then when you finally get one, if the results are not the what you had hoped, it could feel devastating and misleading.

While I do believe at this point, that the Spinecor offers my daughter a better chance of staying stable, I also realize now that
a) it is not a guarantee.
b) every doctor who sees her will offer different opinions
c) every time I get an xray done, it is only a view of a certain moment in time. That image may not be the case tomorrow
d) I cannot be so rigid with her wearing the brace the alloted time, that I make my daughter completely miserable. She has already gone through too much. I do make her wear it as prescribed. However, for special occasions, days at the beach or pool- I have to be a little flexible. In the grand scheme of things, these few extra moments won't have a major effect on the progression of the scoli. But these moments may have a lasting impact on my daughter.
e) Most importantly, all that I am trying to do to prevent a fusion surgery may not work. If that is the case, then it is not a reflection of me as a parent.

Thank you! your points are all very true for me too! I wish her dad would consider being more flexible sometimes with her out of brace time.

[MJB]

Does anyone ever post pictures on this site?

I was thinking that it might be nice for Halle to see pictures of other children that have to wear the brace too, right now she feels like the only person in the world that has to wear it.

[mariaf]

Thank you for your response, I completely agree with you and I hope he reconsiders too! He is worried about her being out of the brace for more than 2 hours at a time.

Hi MJB,

Please don't take this the wrong way, but as her mom, if you feel it is in your daughter's best interests to get an out-of-brace x-ray, then perhaps you need to consider going against her dad's wishes and put your daughter's best interest ahead of what HE wants. Isn't that (what's best for her) what should come first?

Again, I apologize - I am not trying to chastise you or give you a hard time - and I tried to find the words to say this as gently as possible - but I am thinking of your daughter here and what is best for her. If it were my child, I would do what I thought was best for HER and let the chips fall where they may.

Good luck and I truly hope you don't mind my candor.

[Pooka1]

Thank you for your response, I completely agree with you and I hope he reconsiders too! He is worried about her being out of the brace for more than 2 hours at a time.

I'm just curious about this... why is he worried about being out of brace more than two hours at a time versus more than one or three or five hours at a time? It seems arbitrary unless based on some data.

If there is some study out there showing this, could you point me towards it?

Thanks in advance.

[RugbyLaura]

Hi,

I know I'm going to regret this but...

I don't understand why everyone is so hung up on this out of brace xray issue. If the curve is progressing it will show up in an inbrace xray - read back over this thread & see. As I understand it the brace is supposed to prevent progression, not correct the curve. It doesn't always work and we won't know whether it has until we come out of the other side and maybe not even then.

Sorry Maria but can't we just leave this in the hands of the medical professionals? Should I start recomending that staples are removed periodically to see whether VBS patients are 'really' stable?

I don't want to start a huge argument again but I do feel that Marlowe could do with support & reassurance rather than incitement to marital disharmony!

x

[Pooka1]

I don't want to start a huge argument again but I do feel that Marlowe could do with support & reassurance rather than incitement to marital disharmony!

x

:eek:

I guess that's a consideration for some folks but aren't there limits when a child is involved?

If my husband started laying down rules unsupported by anything resembling data I would quash that in no uncertain terms. Of course he doesn't do that and not because he knows I would quash it in no uncertain terms.

Maybe I'm off-base here but there is a child involved. It's not just a marriage.

[Pooka1]

How is staying out of the brace for 24-48 hours different from starting the bracing 24-48 hours after your started the bracing?

Is there a rational person who would claim that starting a bracing regime at:

Time = X hours

versus starting at

Time = X + 24 hours, or

Time = X + 48 hours

is going to affect the outcome? I think not!

[RugbyLaura]

I totally agree Sharon, if my hubby did anything that I felt was wrong for my children I would be down on him like a ton of bricks.

My point was that I really don't condsider the out of brace xray to be worth the argument. I don't think it will be a source of meaningful information & is just more exposure to radiation.

I would not be worried about the additional time out of brace, I just think it's a pointless excercise. I agree with you that the prescribed hours out of brace appear to be fairly arbitrary. There have not been enough (if any?) studies to pin it down, we therefore take them with a pinch of salt & make the brace fit our way of life rather than the other way around ;)

[jillw]

MJB,

My daughter feels the same way (about being the only one...she knows there are others from seeing them at Dr. Rivard's office, but with the exception of one boy, they were usually much older than her so it didn't help her) I'm not comfortable posting my daughter's pics on the internet, but if you want to PM me your email I could email you some pictures of my daughter - she'll turn 8 next month so they are similar in age. Is Halle going into 3rd or 4th grade next year?

[RugbyLaura]

Oh and...


If my husband started laying down rules unsupported by anything resembling data I would quash that in no uncertain terms. Of course he doesn't do that and not because he knows I would quash it in no uncertain terms.
Too right BUT I don't think Marlowe's husband is doing this - he is actually wanting stick to the instructions of the medical professional that they have chosen to treat their daughter.

Edited to add, Marlowe - I would be more than happy to send photos of Immy if you pm me your email address. I also know that Celia (old member with daughter of similar age) is putting together a video for you tube. I'll keep you posted.

Laura

[Pooka1]

I totally agree Sharon, if my hubby did anything that I felt was wrong for my children I would be down on him like a ton of bricks.

My point was that I really don't consider the out of brace xray to be worth the argument. I don't think it will be a source of meaningful information & is just more exposure to radiation.

That's a reasonable point. I don't have a bead on this question of out-of-brace versus in-brace x-ray. What is the state of the data relating the in-brace to the out of brace curvature? Do we know 24-48 hours is even enough? It seems like the recently out-of-brace is measuring "something" and the in-brace is measuring "something" but it isn't clear which one, if either, is related to the final outcome. They can't even relate unbraced to final outcome so I doubt either of those x-rays can be related to final outcome. It could very well turn out that somehow the in-brace numbers are a better predictor of the final outcome. Who knows?


I would not be worried about the additional time out of brace, I just think it's a pointless exercise. I agree with you that the prescribed hours out of brace appear to be fairly arbitrary. There have not been enough (if any?) studies to pin it down, we therefore take them with a pinch of salt & make the brace fit our way of life rather than the other way around ;)

I suspect the limits on out-of-brace time are more related to staying used to the brace and avoiding multiple break-in periods than they are in terms of influencing outcome.

I mean when you add up the total number of in-brace hours and then look at relatively small numbers of out-of-brace hours in that time period, it is hard to imagine that could ever affect outcome. But what the hell do I know!

[RugbyLaura]

Do we know 24-48 hours is even enough? It seems like the recently out-of-brace is measuring "something" and the in-brace is measuring "something" but it isn't clear which one, if either, is related to the final outcome. They can't even relate unbraced to final outcome so I doubt either of those x-rays can be related to final outcome. It could very well turn out that somehow the in-brace numbers are a better predictor of the final outcome. Who knows?

Perfectly put Sharon. Both our consultant and orthotist did explain why out of brace xrays were a waste of time but I'm afraid I can't remember their exact words. Yours are better than anything I have been able to come up with and I think the fact that you have distance from the issue helps you be more rational. (Not that I think I'm irrational, just that others may feel I'm being influenced by my subconcious desire to bury my head in the sand)

x

[Pooka1]

My gut on this issue is that I'm keeping my daughter out of the brace for at least a week before she goes back for the next set of x-rays. Maybe two weeks.

sharon

[emarismom]

I do think that an out of brace xray is needed. There is no more exposure to radiation, because I did the out of brace xray instead of the in brace xray. I will be waiting until Sept/Oct to get another xray. That one will probably be in brace as it will be with the Spinecor doctor.

It is reasonable to say that the in brace (Spinecor) xray will show progression of the curve only if the xray is taken before any adjustments are made to it.

For example: If I walk into the office and the doctor checks the brace, readjusts the brace, and then takes an xray. That xray will show the in brace curve after the brace has been corrected, that doesn't mean that the child has necessarily been getting that same correction for the months prior.

Further, if there is progression, at that point the true amount of progression could be masked by the readjustment of the brace.

I have my daughter in a Spinecor, and as I have said before, I do feel it is my best option at this time to offer some sort of prevention of curve progression. However, I also feel that two years without an out of brace xray is too long.

In my case the situation is complicated as I am not able to travel to Montreal and am seeing a chiropractor for the brace. I also see my regular ortho, as I am not willing completely forgo the medical establishment. I'm trying to balance to sides that have very differing views on treatment and follow very different protocols.

[Pooka1]

Emarismom,

I think you are doing an admirable job balancing the two approaches!

That's an excellent point about the in-brace x-ray taken before the adjustment. Makes sense.

Is that the protocol? Or do they only do the in-brace after the adjustment?

What is the rationale for doing the in-brace x-raying by the way? Do they have data relating what their protocol is to eventual outcomes? Or are they still gathering data to answer this question?

In re my daughter, because she is in a bending brace, an in-brace film seems to have a high chance of being irrelevant. That's why I think I'm taking her out for at least a week before the next x-ray. It will be interesting to see what the surgeon says. Whatever he says, I'll get the rationale.

[emarismom]

I'm not sure if there is a protocol on the order of which to do things when a patient comes in for a follow up. But every time I go in, it is done in that order, check the brace (ask questions, etc), readjust the brace, take the xray. Thus we are only given the curve degree once the brace has been adjusted.

I don't know if any studies are being done in relation to the use of only in brace xrays. But dare I say, that the use of in brace xrays to determine the effectiveness of the brace does not seem appropriate. If I remember correctly, the use of out of brace xrays is irrelevant because the patient is remaining braced and progression can be recognized in both types of xrays. But again, because the the readjustment of the brace, I think progression could be masked.

I'm not sure if a week or two out of brace is necessary (although I'm sure your daughter will be thrilled!) I think I would contact the doctor and just do what he says.

[RugbyLaura]

Michelle,

Oddly enough, our xray procedure is the other way around:

Arrive
Xray
Chat & brace adjustment
Go home

I always wonder what the measurement would have been post adjustment!

Laura

[mariaf]

Hi,

I know I'm going to regret this but...

I don't understand why everyone is so hung up on this out of brace xray issue. If the curve is progressing it will show up in an inbrace xray - read back over this thread & see. As I understand it the brace is supposed to prevent progression, not correct the curve. It doesn't always work and we won't know whether it has until we come out of the other side and maybe not even then.

Sorry Maria but can't we just leave this in the hands of the medical professionals? Should I start recomending that staples are removed periodically to see whether VBS patients are 'really' stable?

I don't want to start a huge argument again but I do feel that Marlowe could do with support & reassurance rather than incitement to marital disharmony!

x

Hi Rugby Laura,

I tried VERY hard to word my post so it would sound the way I meant it - to cover all bases in the BEST INTEREST of the child, not to start any marital disharmony. I'm sorry you misintrepreted it.

The medical professionals (at least the vast majority, here in the U.S. anyway) DO FEEL THAT XRAYS WITHOUT THE BRACE FOR AT LEAST 24 HOURS ARE NECESSARY. That's not MY recommendation - it is theirs.

Comparing the staples to the Spinecor in the way you did is silly. The staples are in there permanently and kids ARE monitored to be sure everything is stable and holding. You wouldn't remove a rod from a post-fusion patient to see what their curve was, would you? But the Spinecor (or ANY brace) is not permanent but rather just something that is worn so it NEEDS to be removed in order to see how the curve truly is doing.

I personally KNOW of cases where the x-rays taken in the Spinecor were masking progression and by the time it was discovered the curves were quite large.

I guess we'll just have to agree to disagree on this one. I really was not trying to start any debates and I truly want the best for ALL these kids.

I just can't see what the harm could be in getting an out-of-brace x-ray - can you? If you can, I truly wish you would explain it to me.

[RugbyLaura]

But the Spinecor (or ANY brace) is not permanent but rather just something that is worn so it NEEDS to be removed in order to see how the body really is.

Why??

Laura

[mariaf]

Because it is NOT a part of their body. When it is removed the body will surely shift and change, no?

And I'm sure there are other reasons why nearly ALL the orthos in the U.S. only consider x-rays taken with the brace off at least 24 hours to be valid.

If you like, next time I see our ortho (Dr. Betz) I will ask for an explanation in more medical/scientific terms. But when I asked him once why he requires the brace to be off for 24 hours prior to an x-ray he said "because it takes at least that long for the spine to return to its natural shape - otherwise we could get an incorrect reading that is masking progression".

I don't know if they were his EXACT words but pretty close.

[RugbyLaura]

I tried VERY hard to word my post so it would sound the way I meant it - to cover all bases in the BEST INTEREST of the child, not to start any marital disharmony. I'm sorry you misintrepreted it.
Bound to be my fault ;)


Comparing the staples to the Spinecor in the way you did is silly.
It was meant to be silly! I obviously was not seriously suggesting such a thing!!


I personally KNOW of cases where the x-rays taken in the Spinecor were masking progression and by the time it was discovered the curves were quite large.
Really - what do you have against Spinecor??? We are all here trying to do the best for our kids. Your way is NOT the only way.

[mariaf]

Again, you put words in my mouth.

I have NOTHING against Spinecor. I just think it is much safer to occasionally subsitute an out-of-brace x-ray for one taken IN the Spinecor. I really don't see the harm in that? Do you?

If you fail to see that my intentions are good (i.e., making suggestions to help others, just like we all do), then I don't know what to say to convince you - in fact, I won't even try. As a matter of fact, I have no problem posting something that may bring some heat on myself if I think I can help even one child. I'm pretty thick-skinned.

I believe, though, that I am allowed to post MY opinions which, believe it or not, are based on a LOT of research, reading, talking to those in the medical profession, following a large number of scoli kids, talking to their parents about their experiences, etc.

I am NOT saying that I know any more than the next person - but I won't stop trying to share what I have learned either.

I would hope that everyone would do the same.

[emarismom]

Laura,

That is really interesting that your doctor does it differently. I guess that for every doctor out there, there is a little variation. Just like every doctor will have a different opinion. It really is just a personal decision as to what the best way to care for our children is.

I have done ALOT of research over the past several years and there is no RIGHT treatment for scoliosis. There are many options and ideas about things we can do to help our kids. Those range from nothing to yoga to staples and everything in between. We as parents have to look at our UNIQUE situation and make determinations based on that. What is right or appropriate for one, is NOT necessarily what is right or appropriate for another.

As odd as what I'm about to say may sound, I find solace in knowing that fusion surgery is available for my daughter should that be the end result of all of this. My daughter has a condition, that at least there is something out there that can resolve it. The condition that caused her scoli is 10 times worse than the scoli, and at this point it appears to be resolved. There are a great many children with conditions for which there is nothing that can be done.

[Pooka1]

As odd as what I'm about to say may sound, I find solace in knowing that fusion surgery is available for my daughter should that be the end result of all of this. My daughter has a condition, that at least there is something out there that can resolve it. The condition that caused her scoli is 10 times worse than the scoli, and at this point it appears to be resolved. There are a great many children with conditions for which there is nothing that can be done.

Exactly so. Fusion gave my daughter's life back to her from becoming an ever-increasing pretzel. We are lucky there is a successful procedure out there for these children. It could be worse. A lot worse.

[MJB]

Hi MJB,

Please don't take this the wrong way, but as her mom, if you feel it is in your daughter's best interests to get an out-of-brace x-ray, then perhaps you need to consider going against her dad's wishes and put your daughter's best interest ahead of what HE wants. Isn't that (what's best for her) what should come first?

Again, I apologize - I am not trying to chastise you or give you a hard time - and I tried to find the words to say this as gently as possible - but I am thinking of your daughter here and what is best for her. If it were my child, I would do what I thought was best for HER and let the chips fall where they may.

Good luck and I truly hope you don't mind my candor.

Thank you for your response!!! I really would like to do this but I don't know how I could get away with it without him getting upset about it. Maybe once she has been in the brace for close to a year he'll understand more and think it's important too, hopefully he just thinks it's too early right now to have her out so long.

Thank you again, you are right!

[MJB]

I'm just curious about this... why is he worried about being out of brace more than two hours at a time versus more than one or three or five hours at a time? It seems arbitrary unless based on some data.

If there is some study out there showing this, could you point me towards it?

Thanks in advance.

He just always says "we are not the doctors" and if Dr. Rivard thought that being out of the brace for more than 2 hours at once was ok, then he would've said so.... I will tell him that there are other people that wear the spinecor brace that make exceptions and he says that he would prefer to go with what the doctor has said. It's frustrating because it even makes it hard to do fun outings that involve swimming.

One day I had her out of it for 3 hours for dancing pictures and he was calling me at the studio and was quite disappointed in me.

[MJB]

MJB,

My daughter feels the same way (about being the only one...she knows there are others from seeing them at Dr. Rivard's office, but with the exception of one boy, they were usually much older than her so it didn't help her) I'm not comfortable posting my daughter's pics on the internet, but if you want to PM me your email I could email you some pictures of my daughter - she'll turn 8 next month so they are similar in age. Is Halle going into 3rd or 4th grade next year?

Thank you! I understand about posting pics online. Halle is going in the 4th grade in Sept. What about your daughter? I agree, Halle has only seen older children there at her visits.

[MJB]

Oh and...

Too right BUT I don't think Marlowe's husband is doing this - he is actually wanting stick to the instructions of the medical professional that they have chosen to treat their daughter.

Edited to add, Marlowe - I would be more than happy to send photos of Immy if you pm me your email address. I also know that Celia (old member with daughter of similar age) is putting together a video for you tube. I'll keep you posted.

Laura

Laura that is exactly it! He is just thinking that if more than 2 hours at a time was ok, then Dr. Rivard would've said so... When we asked if swimming could be counted as "in brace" time, he said no, it had to be counted in the 2 hours.

[MJB]

It is reasonable to say that the in brace (Spinecor) xray will show progression of the curve only if the xray is taken before any adjustments are made to it.

For example: If I walk into the office and the doctor checks the brace, readjusts the brace, and then takes an xray. That xray will show the in brace curve after the brace has been corrected, that doesn't mean that the child has necessarily been getting that same correction for the months prior.

.

That is exactly my concern as Dr. Rivard does the xrays AFTER the adjustments have been made, so I have no idea how the brace has really worked during the 5 months between the appointments.

[mariaf]

Thank you for your response!!! I really would like to do this but I don't know how I could get away with it without him getting upset about it. Maybe once she has been in the brace for close to a year he'll understand more and think it's important too, hopefully he just thinks it's too early right now to have her out so long.

Thank you again, you are right!

Hi MJB,

I'm relieved and very glad that you understood I meant no harm, but rather my intent was exactly the the opposite.

Perhaps when you feel the time is right, you can have a talk with him (I'm sure you have tried before), but have him read here or elsewhere about the protocol for out-of-brace x-rays and the 24 hour period being quite standard and how in the grand scheme of things that one "timeout" won't harm her. I don't know if you have a doctor in mind that you would bring her to for an out-of-brace x-ray but if you do, then perhaps he or she could explain as well how they have all these kids take their braces off for 24 hours prior to x-ray and it does no harm.

Absent that, I guess just try to keep an eye on her - maybe not as good or as accurate as an x-ray but moms often can "see" when something is off or wrong. Look at her both when she is wearing the brace and when she's not. If she looks like she might be progressing to you, then you know it'll be time to take action.

By the way, and maybe someone else can answer this, but has anyone ever asked Dr. Rivard if an OCCASIONAL out-of-brace xray with no brace for 24 hours would cause harm in his opinion? He sounds like a good guy and a reasonable man so perhaps he'd agree to it if it puts a parent's mind at ease. Just curious if the topic has ever been discussed with him.

I've learned that sometimes it is a good thing to question doctors. Even among themselves there is not always agreement on treatment options and sometimes as the parents we need to weigh in.

My son had been seeing an ortho with a very good reputation in NY but she was very conservative and only believed in bracing or rods (fusion or growth rods). She did not embrace VBS when I mentioned it five years ago because she felt it was too new. I felt I needed to find a better alternative than her plan to "brace David for his entire childhood and then probably fuse him anyway". So I spoke with other doctors, then with parents of kids who had VBS, then I read whatever info was out there at the time and my husband decided that while there were no guarantees, we'd go ahead with VBS as it made more sense to us - both in the treatment of his scoliosis and for his quality of life.

Now I am NOT comparing your situation to mine because this is the plan you have chosen NOR am I questioning that plan. I'm simply saying that you should NOT be afraid to ask whatever questions are on your mind. They are the doctors but WE are the parents. Even now when I see Dr. Betz, I always have one or two questions for him if I don't understand why he is doing something a certain way. Most good orthos will not mind at all but rather appreciate a parent who is so involved and informed.

MJB, I wish you all the best - and keep us posted,

[Pooka1]

He just always says "we are not the doctors" and if Dr. Rivard thought that being out of the brace for more than 2 hours at once was ok, then he would've said so.... I will tell him that there are other people that wear the spinecor brace that make exceptions and he says that he would prefer to go with what the doctor has said. It's frustrating because it even makes it hard to do fun outings that involve swimming.

One day I had her out of it for 3 hours for dancing pictures and he was calling me at the studio and was quite disappointed in me.

I would bet my bottom dollar Dr. Rivard has NO DATA showing that 2 hours is okay and 24 hours is not okay in terms of outcome.

He pulled the number out of a bodily orifice. Ask him next time you see him. Because your husband doesn't understand this, he isn't making an informed decision w.r.t. your daughter though he thinks his position is informed. I think Rivard will admit he has no data and made the number up out of thin air.

If I was dealing with that, I would have my husband talk to the doctor.

[Pooka1]

Dr. Rivard is engaged in trying to show that his brace, Spinecor, is efficacious.

The way to prove that is to publish in the refereed medical journals with clear results.

The way to have the clearest results is to hold as many things constant as you can.

In this case, Dr. Rivard has decided on a protocol that includes 22 hours a day in brace. This is almost certainly ARBITRARY at this early time in the research on Spinecor. If he doesn't stress this to parents then he risks muddying his data. So he tells them 22 hours a day and lets them think less per day, or a day or two out of brace, will matter in the end. I doubt he actually utters those words (unless he is a nutball and I don't think he is). Still he will have to get a feel for compliance rate and report that as a caveat to the protocol.

So the 22 hours per day figure is not based on any data but is important in evaluating the protocol. Twenty years from now it might become clear that only wearing it 12 hours a day is just as effective as wearing it 22 hours per day. I don't know and neither does Dr. Rivard.

The bottom line is the 2 hours out of brace is just a number that Rivard picked that is untethered by any data showing that it is at all relevant to a positive outcome. Given that, being strict about not taking a child out of brace for a day or two for an x-ray or a few days for a vacation is not rational.

Doctors know best about what they know. They do NOT know best when they are doing research to figure out what is best and trying to standardize the protocol where they can. That is an important distinction that some folks apparently miss.

In my opinion, a child's well-being is more important than Rivard's resume.

On the other hand, if he was PAYING folks to participate rather than the other way around, things might be different. But he is not paying folks but rather charging them A LOT. In that case, when there is no data, the parent should use their best judgment and not pretend the doctor knows stuff he doesn't know.

[mariaf]

Well said, Sharon.

I have never heard any ortho ever say that allowing a child to be out of brace once in a while, say for a special occasion, is going to be detrimental in the long run. But more importantly, that theory just doesn't make sense - if you have a child braced 20-22 hours a day EVERY day and you give them a few extra hours over the course of a year, what is that percentage-wise? A VERY small percentage of time.

Even when David was braced full time by our former ortho (who was quite pro-bracing) she did say that on occasion I could allow David extra time out of the brace so long as it did not become a habit and that it would not alter the ultimate outcome.

To think otherwise, I agree, is not rational.

[MJB]

Hi MJB,

I'm relieved and very glad that you understood I meant no harm, but rather my intent was exactly the the opposite.

Perhaps when you feel the time is right, you can have a talk with him (I'm sure you have tried before), but have him read here or elsewhere about the protocol for out-of-brace x-rays and the 24 hour period being quite standard and how in the grand scheme of things that one "timeout" won't harm her. I don't know if you have a doctor in mind that you would bring her to for an out-of-brace x-ray but if you do, then perhaps he or she could explain as well how they have all these kids take their braces off for 24 hours prior to x-ray and it does no harm.

Absent that, I guess just try to keep an eye on her - maybe not as good or as accurate as an x-ray but moms often can "see" when something is off or wrong. Look at her both when she is wearing the brace and when she's not. If she looks like she might be progressing to you, then you know it'll be time to take action.

By the way, and maybe someone else can answer this, but has anyone ever asked Dr. Rivard if an OCCASIONAL out-of-brace xray with no brace for 24 hours would cause harm in his opinion? He sounds like a good guy and a reasonable man so perhaps he'd agree to it if it puts a parent's mind at ease. Just curious if the topic has ever been discussed with him.

I've learned that sometimes it is a good thing to question doctors. Even among themselves there is not always agreement on treatment options and sometimes as the parents we need to weigh in.

My son had been seeing an ortho with a very good reputation in NY but she was very conservative and only believed in bracing or rods (fusion or growth rods). She did not embrace VBS when I mentioned it five years ago because she felt it was too new. I felt I needed to find a better alternative than her plan to "brace David for his entire childhood and then probably fuse him anyway". So I spoke with other doctors, then with parents of kids who had VBS, then I read whatever info was out there at the time and my husband decided that while there were no guarantees, we'd go ahead with VBS as it made more sense to us - both in the treatment of his scoliosis and for his quality of life.

Now I am NOT comparing your situation to mine because this is the plan you have chosen NOR am I questioning that plan. I'm simply saying that you should NOT be afraid to ask whatever questions are on your mind. They are the doctors but WE are the parents. Even now when I see Dr. Betz, I always have one or two questions for him if I don't understand why he is doing something a certain way. Most good orthos will not mind at all but rather appreciate a parent who is so involved and informed.

MJB, I wish you all the best - and keep us posted,


You make a good point, when we go back to Dr. Rivard I am going to question him on having an out of brace and her being out for 24 hours. Last time I asked him if he would do one but he said not for 2 years.

[Pooka1]

I think the issue here is overestimating what Rivard knows. I can understand how a parent who is unfamiliar with how research is done might misunderstand instructions from a doctor particularly in reference to a relatively new approach like Spinecor and think it's all based on hard data. In fact very, very, very, very, little of what Rivard tells folks can possibility be based on hard data because he doesn't have much but is gathering some.

I hope MJB's husband can see this point for the sake of his daughter. There is nothing MAGIC about 22 hours. There is nothing MAGIC about avoiding being out of brace for a day or two. All you have to do is imagine that you started the bracing a week later. This seems obvious.

I am also getting the impression that MJB's husband might think the brace is guaranteed to work if they follow the instructions to the letter. I really hope someone disabuses him of that if he thinks that.

Last, this stage of the Spinecor research seems more akin to a clinical trial. He really should be providing the brace free until he shows it is effective. I'm a bit morally outraged that not only does he not provide it free but charges an arm and a leg for it. So desperate folks are essentially taking a chance and funding his research on this. I find that somewhat offensive but that's just the hair pin I am. :mad:

[MJB]

I would bet my bottom dollar Dr. Rivard has NO DATA showing that 2 hours is okay and 24 hours is not okay in terms of outcome.

He pulled the number out of a bodily orifice. Ask him next time you see him. Because your husband doesn't understand this, he isn't making an informed decision w.r.t. your daughter though he thinks his position is informed. I think Rivard will admit he has no data and made the number up out of thin air.

If I was dealing with that, I would have my husband talk to the doctor.

I guess my hubby is just going by when I asked about swimming and considering it "in brace" time and Dr. Rivard and Dr. Coillard said no, she could not go longer than 2 hours at any given time. So now my H is worried about that, I guess i understand where he is coming from but I feel like there has to be times that you bend the rules a little, like when you are at a waterpark or something.

[Pooka1]

I guess my hubby is just going by when I asked about swimming and considering it "in brace" time and Dr. Rivard and Dr. Coillard said no, she could not go longer than 2 hours at any given time. So now my H is worried about that, I guess i understand where he is coming from but I feel like there has to be times that you bend the rules a little, like when you are at a waterpark or something.

Yes but it seems that your husband thinks the reason to avoid being out of brace more than 2 hours a day is because there is HARD DATA SHOWING it will have a deleterious effect on outcome. There is no data, soft or hard, showing that to my knowledge. It is an arbitrary number and I think if you buttonhole Rivard he will admit it.

Does your husband understand that the ACTUAL reason Rivard and Coillard said to stick to the 22 hours per day is so they can publish their data more easily???

[MJB]

Yes but it seems that your husband thinks the reason to avoid being out of brace more than 2 hours a day is because there is HARD DATA SHOWING it will have a deleterious effect on outcome. There is no data, soft or hard, showing that to my knowledge. It is an arbitrary number and I think if you buttonhole Rivard he will admit it.

Does your husband understand that the ACTUAL reason Rivard and Coillard said to stick to the 22 hours per day is so they can publish their data more easily???

no I understand what you mean... like to me, what will an extra hour do if we are out swimming, when it takes like 24 hours for the curve to be accurate, if that's even true? I guess he just feels that Dr. Rivard is the Dr. and I am not, so he would rather just go with his medical advice.

[Pooka1]

I see what you are saying but I disagree with calling what Rivard is telling you on this matter

"medical advice."

That is not medical advice. It is more accurately described as

"picking an arbitrary number so we can standardize the protocol so we can publish our data and add to our resume."

Rivard will admit this I'm sure. If he admits this in front of your husband then I think you and your daughter will have an easier time with the brace at no known cost to a positive outcome.

Good luck.

[MJB]

I see what you are saying but I disagree with calling what Rivard is telling you on this matter

"medical advice."

That is not medical advice. It is more accurately described as

"picking an arbitrary number so we can standardize the protocol so we can publish our data and add to our resume."

Rivard will admit this I'm sure. If he admits this in front of your husband then I think you and your daughter will have an easier time with the brace at no known cost to a positive outcome.

Good luck.

I don't know, I will not be able to convince my H that our daughters doctors advice is not medical advice. He figures that Dr. Rivard knows way more than we do, people that didn't know anything about Scoliosis until January of this year.

I am not sure that I can go to Dr. Rivard and question him in these ways without coming across harsh, Dr. Rivard has been amazing to us, if I have any questions I just e-mail him and guaranteed within 30 minutes he calls me on the phone. I guess I will just take his advice for now because I don't think he or my H would appreciate me questioning him. I mean I do ask questions, don't get me wrong. I have e-mailed Dr. Rivard so many times with questions and he's always happy to answer and quick to respond.

I guess we will get through this summer being strict and then when we have our visit next year (after our October visit) that will be around April I would think, I will see if he will give us more freedom during next summer.

I do appreciate all your advice though, so please don't take my response the wrong way.

[jillw]

MJB, Although Dr. Rivard may feel that there isn't a need for an out of brace xray, he is in agreement with the other doctors that when an out of brace xray is taken, that the child should be out of brace for at least 24 hours prior. Well, caveat - he hasn't told me that directly, because we haven't had the out of brace xray discussion yet, but he had told others who had posted that here.

Sharon, I believe you are right...they have been gathering data and they have to decide on a protocol. They would say that the data they have (that looks very promising) is based upon not being out of brace for more than 2 hours at any one time (although to clarify, 2 out of brace periods are allowed per day as long as the brace is worn in between...i.e. a couple hours out of brace in the morning and a couple hours out of brace in the late afternoon for a total of 4 hours out of brace). I imagine they'd say that at this point they don't have any data to indicate whether the brace has the same success rates if somebody goes 4 straight hours out of brace on a REGULAR basis or spends 6 hours out of brace or whatever. I saw a similar evolution with the TLSOs....while people have been wearing them for decades, it was more recently (relatively) that studies were done to see whether wearing a tlso for 18 hours a day was really any worse than 23 hours a day. First they have to come up with a baseline, and then when the results of the baseline are well established they can start to tweak various controls (i.e. time in brace). Nonetheless, I'd be shocked if they said occasional exceptions are likely to be harmful.

[Pooka1]

Nonetheless, I'd be shocked if they said occasional exceptions are likely to be harmful.

I suggest any rational person would be shocked.

Every parent is trying to do their best for their kid. But not every parent understands every aspect of what doctors tell patients/parents and especially WHY these doctors say what they say. Sticking to two two-hour out-of-brace periods without exception like it was life or death is simply ignorant of the circumstances in this case.

I am a researcher and I understand the need for high-quality, highly controlled data to advance this field. But I don't think that goal is more important than my kid going to a water park for an afternoon out of brace if I were in that situation. The outcome won't change but the kid will be happier. Win-win. YMMV.

[MJB]

But I don't think that goal is more important than my kid going to a water park for an afternoon out of brace if I were in that situation. The outcome won't change but the kid will be happier. Win-win. YMMV.

I do agree with you on that, that is why I personally make exceptions when we are out swimming, although not every time we go... For a waterpark, which we went to one last week I made an exception but really in total with a lunch break in between (in brace) she only had about 4 hours at the most out of the brace, then I did not let her have one in the evening, which was fine because we left the park at just after 4 anyway. Although that week because I was off work a few days and we went swimming every day, I did not allow this every day, the days that we just went to the pool I followed her 2 hour breaks.

As for my H, I have no clue why he is so stuck on being so strict about it, trust me he knows I don't agree with him and we have discussed it but nothing comes of it.

[MJB]

I suggest any rational person would be shocked.

Sticking to two two-hour out-of-brace periods without exception like it was life or death is simply ignorant of the circumstances in this case.

.

Even though I agree with you on what I posted above, I do not consider my H to be ignorant though, he is just doing what HE thinks is best as a parent, where as I choose to do what I think is best... he is a great parent and isn't trying to make our daughters life miserable, she is a very happy little girl...

Some may think it's great that he sticks to it so well because then we wont get into slacking with it and being TOO easy with it and others may think he's being too hard on her with it.

[Pooka1]

I think you are in a very dicey situation.

Even though you realize the arbitrary nature of Rivard's advice, if you follow through on occasional longer out-of-brace periods and your daughter eventually does need fusion, your husband might incorrectly blame the failure of the approach on those occasional longer out of brace periods even though that isn't rational.

I have no basis to relate to your situation. I took the lead, if you will, on the scoliosis situation with my daughters and my husband trusts me to research the options and explain it to him. I do not have all the answers and brought him up to speed so he can help make decisions. He keeps me logical and rational and I keep him logical and rational to the best of our abilities... it's never going to be 100% because frankly, I find this business with both my girls having scoliosis, though having different trajectories, maddening. But we try.

But I have absolutely no experience with my husband misunderstanding about something that is arbitrary. He has a science background also and understands about data, research protocols, clinical trials, etc.. He has yet to take an irrational position w.r.t. our decisions about helping our girls with scoliosis. I suppose if he did, I would be obliged to ignore it. My kids come first. But it would be dicey.

[emarismom]

There have been many times that due to our schedules and life in general that we have not followed the 2 two hours out of brace rule. Sometimes we have done 3 hours and then 1 hour later. Sometimes we have done 1 three and a half hour break.

This happens because maybe we go out and she leaves the brace at home. If we take a few extra minutes here or there, she's out of it too long. Or she will be watching TV and not notice the time, so we have to adjust things around. Marlowe, as time goes by you will see that it is impossible to make sure that every single day Hallle is in the brace the specified amount of time.

Life keeps on going even though a child is in the brace. It is impossible and impractical to think that we can monitor every moment of our children's daily schedule so closely. We as parents are human and we will have days where we are thinking about something other than the brace or we are just to busy to pay attention to it. Of course, in the beginning it is ALL CONSUMING.

[leahdragonfly]

To Emily's Mom,

(sorry I don't know your name). Your post above is so well-said, and I agree with your philosophy about brace-wearing fitting in to the grand scheme of family life. My daughter is in a boston brace, not spinecor, but I just had to comment.

[RugbyLaura]

It's a tough one though isn't it?

We all want the best for our kids; The best life, to be happy, the best possible childhood and the best scoliosis outcome. Perhaps it's not possible to have it all? Just putting my thoughts down here - not intending to make any judgements!

Although bracing has been around for many decades and spinecor for ?15? years or so there is still relatively little data. I'm no expert but I would imagine that, to get reliable results, studies would need to follow children in different groups using the brace for different amounts of time. And some would need to be the control sample :eek: Given the fact that our childrens curves vary considerably by size, age, direction, position, etc it would take an enormous amount of children participating to get anything near meaningful results.

It would also mean that parents would have to stick rigidly to their child's prescription. And be totally honest! (given that some will not be honest for one reason or another, can the results ever be reliable unless children are watched 20 hrs a day by an outsider?? Ridiculous! But valid??).

Perhaps by being flexible with inbrace hours we are delaying meaningful results. By choosing to follow the medical advice (that we have sought) only up to the point that it stops suiting us, are we helping? Are we being selfish? By delaying this data (if we are) are we preventing our granchildren from having a chance of successful treatment?

I am not directing this at anyone (other than myself), it is a discussion I often have in my own head!


Regarding the idea that treatment should be free of charge for those "participating" in studies. Wouldn't that be great! But quite impossible, although I imagine that the Drs wish it could be. I truely believe that most doctors want to do good. (Ok, they need to earn a living too). Maybe I'm being naive, but does it really matter whether their motives are altruistic or monetary if the studies are rigorously evaluated and the results are reliable?

Laura

[Pooka1]

Perhaps by being flexible with inbrace hours we are delaying meaningful results. By choosing to follow the medical advice (that we have sought) only up to the point that it stops suiting us, are we helping? Are we being selfish? By delaying this data (if we are) are we preventing our granchildren from having a chance of successful treatment?

The data will always be delayed. I don't see how anyone can stick with a protocol like it's life and death absent hard data. And until they start paying folks to participate in these studies rather than charging them an arm and a leg, it's going to be tough going getting hard data. I, for one, would feel no obligation to stick to the protocol absent data if it meant sacrificing my child's comfort and happiness. It's not even a close call. But that's the kind of hair pin I am. YMMV.


Regarding the idea that treatment should be free of charge for those "participating" in studies. Wouldn't that be great! But quite impossible,

Don't you have sponsored clinical trials in the U.K.? It's not only possible but relatively easy to find a study. For example, my father was dying of myelodysplasia secondary to years of chemo for lymphoma. I found a clinical trial for him that would have been free.

The problem with bracing is that nobody appears to want to sponsor a clinical trial for bracing because there is not enough money in the end to do so, not because a clinical trial is impossible in principle. It's not obvious that this would be the case but there you go. Or maybe I'm misunderstanding you?


although I imagine that the Drs wish it could be. I truely believe that most doctors want to do good. (Ok, they need to earn a living too). Maybe I'm being naive, but does it really matter whether their motives are altruistic or monetary if the studies are rigorously evaluated and the results are reliable?

Well, I'll just say that it is hard to be totally objective when you have invented a device. I'm not saying that there is some funny business with the data so far on Spinecor because I don't know that. I AM saying at least one surgeon has questioned the published results as being "overly rosy." I don't know the basis of that comment but I can say there are fine lines sometimes between various ways of looking at data, massaging data, selecting data, etc.

In the bracing data, I note they often only look at a subset of the initial group for one reason or another. That is data selection and may or may not be justified. In my field, if I were reviewing a paper that engaged in overt and seemingly targeted data selection, I would stop reviewing it and send it back with a recommendation to reject. Same with QA/QC. I recently recommended rejecting a paper for lack of adequate QA/QC. You have no idea of the quality of your data if you don't monitor the quality. It may be good or it may be crap. And any study without a control group can be filed in the circular file from the get-go as you yourself stated above.

[emarismom]

Laura,

You have voiced many of the concerns I've been having lately. When our children are diagnosed, we go in with guns drawn, ready to take on the world, and we believe we will defeat the diagnosis. But as time goes on, the reality sets in, that this diagnosis IS ongoing. WE will not "defeat" it in a month, a year, or even five years. It will run its course in ours and our childrens life. It will not end until our children reach maturity. For some of us, this is a very long road.

As far as the data goes on bracing , there is really noway to be sure that any of the research studies that have been conducted are even valid. There are just to many variables and too many unknowns. (Which brace works the best?, How many hours a day? Who is a good candidate for bracing? , For how long should the brace be worn?, Is it worth the effort?).

I can say that we are delaying meaningful data, because if we are the the ones Spinecor is actually basing their data on, then obviously their data is flawed, because as a few of us have said, we don't follow protocol to the letter.

When the question of doctors motives comes up, I have a really big issue. My daughter is more valuable to her orthopedic if she progresses. That is a fact. The doctors know that they have a treatment (surgery), that can cure the scoliosis. They know there won't be any long term damage done by letting the child progress to surgery. So what is the real reason for the lack of good, solid research on bracing? Is it that it is almost impossible to conduct or is it that it is not financially beneficial?

Is the current trend away from bracing a result of "the lack of good data on the benefits of it" or is this trend related to $$ to be made when these children progress.

Michelle

[RugbyLaura]

Originally Posted by Pooka1
The problem with bracing is that nobody appears to want to sponsor a clinical trial for bracing because there is not enough money in the end to do so.
Yep, you've hit the nail on the head again. A study is obviously not impossible, a poor choice of word on my part. But it may be difficult given the variables. The main problem is the lack of funding.


Originally Posted by Pooka1
I, for one, would feel no obligation to stick to the protocol absent data if it meant sacrificing my child's comfort and happiness.
And I. However, I do have occasional feelings of guilt. Is there ever going to be any data if we don't stick to the protocol? Catch 22?

[emarismom]

Pooka,

We must have posted at the exact same time. I'm sure that MANY orthopedics have questioned the reliability of the published data on Spinecor. My orthopedic has been VERY clear to point out to me that all of the data conducted has been conducted by the inventors of the brace. Of course, they would have no reason to biased would they?

[Pooka1]

Is the current trend away from bracing a result of "the lack of good data on the benefits of it" or is this trend related to $$ to be made when these children progress.

Well, I have noted the OPPOSITE trend with both our orthopod and our surgeon. They never braced to my knowledge UNTIL the night-time brace came out with some promising data.

Both of them are surgeons and yet they went to bracing in the recent past based on the data as far as I know.

[emarismom]

Pooka,

What nighttime brace is your daughter wearing? Maybe I need to investigate this as an option in the future.

[Pooka1]

Pooka,

What nighttime brace is your daughter wearing? Maybe I need to investigate this as an option in the future.

It's a Charleston but I don't know why the Providence brace wouldn't work the same. They are both night-time bending braces.

[emarismom]

What has the research shown on this brace? I wonder what the differences are between the two braces?

I know that going forward during the school year with Emily in the Spinecor probably won't be too much of an issue. I really don't know if next summer I want to keep her in a 20 hour a day brace. It is so uncomfortable here. Just walking for the house to the car at midday gets you drenched in sweat. I feel so bad for her.

[RugbyLaura]

Michelle,

I truely believe that Immy's current consultant (3rd one!) would like nothing better than for Immy (and every other child in his care) to end up not needing surgery. Unfortunately he thinks this is an extremely unlikely (less than 5% chance). He, like Sharon's, has always been anti-bracing - stating that they are worse than useless; worse because they lead to muscle atrophy and encourage the curve to become rigid making surgical correction more difficult (let alone the discomfort).

He only uses Spinecor. He is a NHS doctor and has no financial incentive to use this brace. He does not guarantee that it will work, in fact I don't think he's too optimistic in Immy's case, but he thinks it is worth a try. Mainly he wants her to wear it to keep her flexible.

If the consultant was more optimistic - if he said that she'd stand a good chance of avoiding surgery if we stuck to the protocol - I'd probably be more rigid in my approach.

If this consultant, whom I trust with the treament of my daughter, indicated that there was a strong chance of avoiding surgery with Spinecor (even if based on flawed data/studies) - I would stick to the proctocol *to the minute* even if this meant missing out on certain aspects of her life.

[emarismom]

I'm sure that not all doctors are in it for the money. To be fair, Emily's ortho who has been with us for 4 years, has been great. He really has never even implied that surgery is likely or unlikely. Whenever I try to press him, he tells me things like "Michelle, I don't have my crystal ball."

I have become tired by all of this. I'm tired of xrays and MRI's. I'm tired of orthos, chiropracotors, and neurosurgeons. I'm having my own temper tantrum. I just want my daughter better-NOW!

[RugbyLaura]

Me Too!

I don't want to have to make these kinds of decisions & wonder whether we're doing the right thing. To spend the hours worrying & debating. OMG the hours I've wasted on forums!!!!!!!!

I must go & get some housework done but want you to know that I'm joining in your temper tantrum (I shall be bashing that vacuum cleaner into every table/chair leg in sight).

We're off to Florida next Saturday & I've no idea how my precious child is going to cope with the heat and restrictions. Restrictions which affect the whole family, for which she feels guilty! Makes you want to cry doesn't it?

xxx

[emarismom]

I want to cry alot!! Florida is hot! The humidity is awful. I assume you are visiting Mickey (Actually I think you posted about this a while back). Just try to head indoors when Immy is in brace.

Last year we went to Busch Gardens with Emily in the brace. I was able to get a Fast Pass type of card, because of the brace,that let us avoid Emily waiting in the lines. It was very convienient. (Dare I say a perk of the brace). Anyway, contact guest relations for whatever parks you will be going to and ask them if they make accomodations for children wearing a brace. Most of them will.

This information may be available online or you could just email them.

Just imagine if we got paid for all the hours on the forum!! What a paycheck that would be.

[RugbyLaura]

Thanks for that. Someone else has suggested the same thing but I felt too guilty to do anything about it (what is it with me & guilt?) I think I shall go for it now!

x

[emarismom]

Yes, you need to do it. There are MANY people who go to the parks and **fake*** being in a wheelchair, or having an illness (like MS), or something else in order to get those passes. You have a true and legitimate reason to get one so go for it!!

Besides I guarantee you won't feel guilty when you are standing in line in the hot sun for 60-90+ minutes to ride a ride!!

[Susie*Bee]

Ladies-- I hardly ever post in this area-- but I always read your posts! Just wanted to say how much I admire all of you for your strength and great love for your children. You deserve tantrums on occasion! ;)

Laura-- I sincerely hope you and your family have a wonderful trip! Let us know how it goes. And YES, do try to get the fast pass if it's possible! It's horrendous waiting in long lines with the sun beating down on you... it would be so much worse in a brace. This isn't a time to feel guilty! Go and ENJOY! (And send me a pic later of you and Immy (and the rest of the family?) having a blast.) :)

[Pooka1]

What has the research shown on this brace? I wonder what the differences are between the two braces?

I searched for pubs at the time but only found one or two showing that it was effective on low curves (lumbar and thoracolumbar IIRC) which was confusing because our surgeon said it was specifically effective on my daughter's type of curve which is thoracic. Maybe a more thorough search of the literature would reveal the papers he is relying on.

[RugbyLaura]

Sharon, Where is Willow's curve positioned? Immy's is at T9 and is considered to be pretty high - perhaps because it is a very long curve. I ask because of the following:

http://cat.inist.fr/?aModele=afficheN&cpsidt=14061691


My problem is that all these studies seem to be AIS based. Immy had early onset, although she is now (if only because of her age) adolescent. Are they relevent to her??

Laura

[Pooka1]

Sharon, Where is Willow's curve positioned? Immy's is at T9 and is considered to be pretty high - perhaps because it is a very long curve. I ask because of the following:

http://cat.inist.fr/?aModele=afficheN&cpsidt=14061691


My problem is that all these studies seem to be AIS based. Immy had early onset, although she is now (if only because of her age) adolescent. Are they relevant to her??

Laura

I was never told were Willow's apex is. I just broke out the most recent x-rays I have and I'm pretty sure the apex is at either T8 or T9.

I read that abstract. I don't recall reading that one but it is in keeping with the very high success rate for lower (down the back) curves vice higher (up the back) curves though they still claim success for those.

I am wondering about the natural history control subjects wherein a majority of those had significant progression. That doesn't seem to jive with what I thought was the background natural history wherein more curves do not progress no matter what you do. But I'm probably confused on that.

In re AIS vice JIS, I have no idea if those are truly separate things or not. I suspect their are the same animal but I don't know.

[emarismom]

Laura,

I would guess that AIS and JIS are basically the same thing. The difference of course being the age of onset. JIS being considered as having a higher likelihood of progression because of the fact that there is just more time before maturity.

At this point I think Immy would probably be classified as having AIS.

Those two articles give promising results for the nighttime braces. Are these braces "hard"? How uncomfortable are they?

[Pooka1]

The braces are hard shell and require a break-in period.

Judging from my daughter's comments, once broken-in, they feel "normal" and it is strange to sleep without it. My daughter said she actually assumed the bent-to-the-side position on the mini-vacation when she didn't bring the brace.

She also just told me she can actually wear it while working on the computer or sewing and such. So I guess once you get used to it, you REALLY get used to it!

She does not mind the brace at all at this point and even added two hours to her sleeping time because she realized she was supposed to get 10 hours and not 8 hours.

In re efficacy, I think the studies show that it is about as effective as other hard braces, not more. The huge advantage is that you only wear it when asleep and it is very well tolerated, at least according to how my daughter feels about it.

[emarismom]

Well at this point it is an option to look into for the future. Since Emily is only 9 1/2 (I sound like a child, but I add that half in to make myself feel better ;) ) we have plenty of time to think about our next move. I really don't have the heart to keep her braced until she reaches maturity :eek:

We are going to continue Spinecor for 4th grade and maybe 5th, but I'm not sure about sending her to middle school in a brace. Especially since that would be 4 years in it.

By the same token, I'm not willing to sit back and wait for progression to occur.

[RugbyLaura]

As they are not available where we live, I have not investigated the nighttime braces in any depth. I do feel that socially it must be so much easier to bear. No worries about which clothes to wear! That would be heaven to Immy right now. No having to find somewhere to change, hold people up & deal with their questions.

From the point of view of comfort, Immy has no problems with the Spinecor brace but its visibility is a problem to her.

I don't think any braces are as effective with high curves. When Immy was first diagnosed it was suggested that she should wear a Milwaukee brace. Needless to say I was a mess for a while.

[jillw]

Sharon, what research I had been able to find on the providence also indicated it was better for lower curves (it probably was the same studies). Also, although I haven't researched it since the fall, the research I found on the Providence Brace was published by the inventors of the brace also (D’Amato/McCoy – this is the same issue you brought up with spinecor). However, like spinecor, the brace is relatively new (compared to say the Milwaukee or boston). I’m wouldn’t be surprised if the initial clinical results on the boston brace (and others) were also published by the inventors. Then over time “independent” studies begin to be conducted.
The spinecor website indicates the need for independent results. It says
“Even though the effectiveness of the SpineCor brace is accepted world wide, we understand the necessity of collecting data from independent treatment centers to support the efficiency of the Dynamic SpineCor brace.
For this reason we are currently undertaking an International Multicenter Study, collecting results from independent SpineCor centers around the world, in order to reinforce those obtained at Sainte-Justine Hospital, upon which the effectiveness of the SpineCor brace is based.
If you are a SpineCor System prescriber or accredited professional and you are interested in taking part in this study, please contact us to receive the study protocol and detailed information about the project. “
Unfortunately I’m sure it will take years for these independent studies to be completed and be published (and I found it interesting that they used the words “in order to reinforce” the results found at St. Justines….instead of “expected” or “hypothesized” to reinforce).

Also, a big pet peeve of mine, Scoliosis Research Society protocol (which was followed in publishing spinecor clinical results) requires Juvenile scoliosis patients to be EXCLUDED from any of these publications. That leaves us parents of kids with JIS with ZERO research to base our decisions on, as Laura stated. I do believe that juvenile and adolescent are different animals to a certain extent (if only because of a higher risk of progression due to the extra years of growth). Therefore I understand that juvenile shouldn’t be pooled in with adolescent data; however, I believe that studies should publish 2 results – one for adolescent, one for juvenile instead of just throwing out the data related to JIS. This is NOT specific to spinecor – this was the protocol set forth by the scoliosis research society. I have been able to find just a few studies that ignored SRS protocol and addressed JIS specifically (or were published before the protocol were established). However those studies were usually VERY small. Oh well….

[Pooka1]

(snip)(and I found it interesting that they used the words “in order to reinforce” the results found at St. Justines….instead of “expected” or “hypothesized” to reinforce).

As skeptical as I am, I think this could easily be a bad translation. Scientists/doctors don't talk like that to my knowledge.

They probably should have used, "corroborate" or "further verify."

[jillw]

Sharon, good point

[Haleysmom]

Hi all.

I have finally got access! My daughter is 12 3/4 years old with a riser of 4. We patiently (stupidly) listened to various doctors to "wait and see":eek: and that got us to t30 before we took control. We had Haley fitted for Spinecor two months ago and we are very comfortable with it. We chose Spinecor because it is giving her a chance to be the athelete that she is. She wears it for Basketball, and Volleyball, but takes it off for Softball (I don't want her sliding in it). I want to help design a swimming version because we do alot of boating! She is also in the new "adult" bottoms because she is already 5'6".

Since we braced her very late, I am looking for any others that are at the end of the recommended skelletal maturity. We are looking for stabilizaition only at this point, any correction would be a bonus. I see alot of younger kids and their results. I also joined so when I have my days that I worry constantly, I can talk to others that are in the same boat!

[MJB]

I was just talking about that the other day with family, they really need to develop a swim brace!!!!

Anyway, I can't help you with any advice but I am glad that you are here and that your daughter is doing well with the Spinecor brace!



Hi all.

I want to help design a swimming version because we do alot of boating! She is also in the new "adult" bottoms because she is already 5'6".

[emarismom]

Haleysmom,

Unfortunately most orthos do take the wait and see approach and this leads many children right to fusion. Most of them will say that since the research on bracing is not great, and bracing (with a hard brace) is such a diffficult treatment, they opt to just wait and see.

How does Haley like the adult bottoms? Those are like shorts right? We were offered those, but since my daughter was already adjusted to the brace, decided not to rock the boat.

[Haleysmom]

The shorts are tight like compression shorts. she has a bit of sorness where three of the straps are velcro'ed to the left hip, but that usually means it is time for a break in the day. But overall she likes them. She has been an amazing person thru this! She does take off all the straps to use the bathroom - she is not wearing a body suit and doesn't like to "pull the undies to the side". Because she is so active, the velcro straps were breaking free (which you don't want to happen in the middle of a Basketball game!). We adjusted by using the the 'belt' velcro to go over the straps to keep them attached.

Yes, it was the ortho's that had us wait.

[Pooka1]

I think it's the case that the majority of smaller curves like you daughter originally presented with don't progress. Someone correct me on that.

So in that sense, your daughter was saved from wearing a brace which, odds were at that time, she didn't need. Plus there is no guarantee the brace would have held the curve at a lower angle even if she was wearing one since diagnosis. Those two issues combined, when considered in light of the difficulty of wearing the hard shell braces and the general lack of data on all bracing, makes the watch and wait game viable in my opinion.

Good luck with your daughter. Thirty degrees can be stable. My daughter is (was?) at ~33 degrees and was stable for several months. Lately, though, I suspect she has progressed and is looking more and more like her twin who was fused this last spring. But I question the AIS diagnosis for my daughters vice having the skeletal indicators of Marfan's Syndrome. If true, apparently no brace would work and I will regret every second she was in the Charleston bending brace if she is fused.

Just another perspective.

[emarismom]

"I will regret every second she was in the Charleston bending brace if she is fused."



Pooka,

Didn't your daughter choose the bracing option? You haven't forced this on her. Nor have your daughter's been diagnosed with Marfan's Syndrome it seems. Since your daughter is wearing her brace only at night, it seems to me you are doing a great job of balancing what you **KNOW** at this time, with the possibilities of what COULD or WILL or WON'T happen in the future.

Having chosen the option of placing my daughter in the Spinecor at age 8, against the recommendation of her ortho, imagine the guilt I will feel if she ends up progressing to surgery in the future. If I think about the "regret" I would feel, well you may as well get my straightjacket ready now!!

You are doing a great job and certainly have nothing to regret!

[Pooka1]

(delete duplicate)

[Pooka1]

Pooka,

Didn't your daughter choose the bracing option? You haven't forced this on her. Nor have your daughter's been diagnosed with Marfan's Syndrome it seems. Since your daughter is wearing her brace only at night, it seems to me you are doing a great job of balancing what you **KNOW** at this time, with the possibilities of what COULD or WILL or WON'T happen in the future.

Yes she is gung-ho on the brace and it is her choice to wear it. And in re Marfan's, we have an appt. with a ped. cardiologist on Thursday for some heart/aorta imaging. If that is negative, I think Marfan's is ruled out per my reading because my girls don't have any eye problems or skin problems, at least to date. But I believe Betz says the kids with just the skeletal indicators who don't have Marfan's are pretty much in the same boat as the kids with Marfan's in terms of lack of efficacy of any bracing. That grinds on me. I have told Willow of this and she still wants to wear the brace. I just feel like were are on notice that the brace will likely not work.


Having chosen the option of placing my daughter in the Spinecor at age 8, against the recommendation of her ortho, imagine the guilt I will feel if she ends up progressing to surgery in the future. If I think about the "regret" I would feel, well you may as well get my straightjacket ready now!!

You are doing a great job and certainly have nothing to regret!

I think you have made good choices for your daughter, too.

I don't understand the point about your ortho being against the Spincor brace. I can see where the ortho might be skeptical that it works but it certainly can't possibly hurt!

Maybe I'm missing something.:confused:

[emarismom]

When I initially braced her the ortho "didn't think it was necessary" and "would have waited until we were sure she was actually progressing". He has agreed to keep seeing her, which I am thrilled about. (There is another one I have seen who probably would have thrown me out of his office for not following protocol).

At her most recent appointment, he was more amenable to the brace. He thought that since we have the brace, and she's used to it, there is no reason to stop using it. However, he is still not convinced that she needs it.

He did tell me that he had to respect my efforts and he wished more parents were like me.

[mariaf]

Sharon,

I agree with Emarismom that you have nothing to regret. Unfortunately, none of us have that crystal ball, so we do our best.

By the way, what skeletal characteristics did they feel make Marfan's a possible diagnosis for your daughter(s)? I know about checking the heart. And I believe that a tall/thin build is characteristic (although my hubby is very tall and was VERY thin and lanky in adolescence and early adulthood, until he put on some weight at middle age -and he doesn't have Marfans) so I guess a lot of folks can have the skeletal characteristics but not the syndrome.

You also mention eye and skin problems.

Thanks - I just like to educate myself as much as possible.

[Pooka1]

Maria,

Both the pediatrician and the ortho said they don't think my girls have Marfan's. But (ETA: At my request) the ped still gave us the referral to the ped. cardiologist and a geneticist so we could rule it out once and for all.

As I understand it, to be diagnosed, they must have a certain number of skeletal characteristics plus involvement of another system, either eyes (lens dislocation), skin, or heart/aorta. They have no eye or skin issues so that leaves heart/aorta which we will know by Thursday if they have.

The characteristics that they have include:

- scoliosis
- tall/thin
- pronated ankles
- flat feet
- arm span exceeding height
- arched palate
- mild/moderate pectus excavatum as toddlers (since totally resolved)
- long/slender fingers
- blue sclera as infants

It's quite the laundry list. I sent this to our surgeon and he still said he didn't think they had Marfan's. I hope he's right.

It's interesting to note that I have some of these - flat feet and arched palate - unfortunately NOT the tall/thin one! I'm 5' 6" and wear size 9/10 jeans so not thin unfortunately.

[mariaf]

Thanks, Sharon.

I hope your pediatrician is right as well (fingers crossed).

In my limited experience, it seems that MORE people/kids seem to have "Marfanlike" skeletal features and characterisitcs, but not the actual syndrome. As I said, my husband can be counted as having some of these features (tall and lanky, long fingers, etc.)

[Pooka1]

You're welcome.

Yeah now that I have attuned to these characteristics, I see other people who have this body type who I'm guessing can't all have Marfan's. Even I have some of these as I mentioned and my husband is tall (~ 6' 3") and was thin (though he is in shape again now). The ped remembered asking me after seeing the girls if my husband was tall. I guess that is part of the reason she doesn't think the girls have Marfan's.

[emarismom]

Good luck at your appointment Thursday Sharon. I'll keep you and your daughter's in my prayers.

It's true that once you become aware of the characteristics of a condition, you begin to see it everywhere. I see people with scoliosis everywhere now. Before Emily was diagnosed, I had never noticed it at all.

[Pooka1]

Emily's mom, thanks for that. :)

[Carly's Mom]

My daughter has MASS, it is similar to Marfan.

MASS syndrome: A genetic syndrome that is similar the Marfan syndrome but does not involve lens dislocation. It is a connective tissue disorder that involves the skeleton, skin, aorta and mitral valve. More detailed information about the symptoms, causes, and treatments of MASS syndrome is available below.

http://www.wrongdiagnosis.com/m/mass_syndrome/intro.htm

She wears the SpineCor brace and gets correction. She is treated by Brian and Brad Ouellette.

We do many other things for her to help with her MASS syndrome.

[Pooka1]

Carly's Mom,

Than you for posting that.

Well it seems there is no shortage of this type of syndrome. There seems to be a spectrum which may or may not be just different manifestations the same genetic issues.

Of the list of symptoms besides the heart stuff which I will know tomorrow if they have, they have the long limbs. One of my daughters has a long oval face as I do. Her identical twin, not so much if you can believe it. (They are definitely identical because there was only one chronionic sac.) Genetics is very squirrely if you ask me. :eek:

Of Marfan's and MASS, it seems MASS is less severe in terms of heart problems.

I'll definitely mention MASS also when we got to the geneticist although I suspect she will bring it up anyway.

My MIL's family have may members who are tall and thin with longish arms. My husband has one cousin on that side who has scoliosis. None have heart issues of this type to my knowledge.

Thanks again.

[MJB]

hmmm interesting.... Halle has a lot of these...

- scoliosis - obviously
- tall/thin - yes
- pronated ankles - yes
- flat feet - yes
- arm span exceeding height - not sure but curious now
- arched palate - don't think so
- mild/moderate pectus excavatum as toddlers - not that i noticed
- long/slender fingers - yes
- blue sclera as infants - yes

[Pooka1]

MJB, I just listed the ones my daughters had. The full list and specific diagnostic criteria are here:

http://www.marfan.org/nmf/GetSubContentRequestHandler.do?sub_menu_item_conte nt_id=4&menu_item_id=3

Index case:
Major criteria in 2 different organ systems
AND involvement of a third organ system.

Relative of index case:
1 major criterion in family history
AND 1 major criterion in an organ system
AND involvement in second organ system.

SKELETAL

Major (Presence of at least 4 of the following manifestations)

__ pectus carinatum
__ pectus excavatum requiring surgery
__ reduced upper to lower segment ratio (Note 1)
OR arm span to height ratio >1.05
Height ____ Arm span ____ Upper segment ____ Lower segment ____
__ wrist (Note 2) and thumb (Note 3) signs
__ scoliosis of >20° or spondylolisthesis
__ reduced extension at the elbows (<170°)
__ medial displacement of the medial malleolus causing pes planus
__ protrusio acetabulae of any degree (ascertained on radiographs)

Minor

__ pectus excavatum of moderate severity
__ joint hypermobility
__ high arched palate with crowding of teeth
__ facial appearance
__ dolichocephaly,
__ malar hypoplasia,
__ enophthalmos,
__ retrognathia,
__ down-slanting palpebral fissures

__ INVOLVEMENT: 2 major criteria or 1 major and 2 minor

OCULAR

Major
__ ectopia lentis

Minor
__ flat cornea
__ increased axial length of the globe
__ hypoplastic iris OR hypoplastic ciliary muscle causing decreased miosis

__ INVOLVEMENT: 2 minor criteria

CARDIOVASCULAR

Major
__ dilatation of the ascending aorta with or without aortic regurgitation
and involving at least the sinuses of Valsalva
__ dissection of the ascending aorta

Minor
__ mitral valve prolapse with or without mitral valve regurgitation
__ dilatation of the main pulmonary artery, in the absence of valvular or
peripheral pulmonic stenosis below the age of 40 years
__ calcification of the mitral annulus below the age of 40 years
__ dilatation or dissection of the descending thoracic or abdominal aorta
below age of 50 years

__ INVOLVEMENT: 1 minor criterion

PULMONARY

Minor (only)
__ spontaneous pneumothorax
__ apical blebs

__ INVOLVEMENT: 1 minor criterion

SKIN AND INTEGUMENT

Minor (only)
__ striae atrophicae
__ recurrent or incisional hernia

__ INVOLVEMENT: 1 minor criterion

DURA

Major
__ lumbosacral dural ectasia by CT or MRI

FAMILY/GENETIC HISTORY

Major
__ first degree relative who independantly meets the diagnostic criterian.
NAME _______________________
__ presence of mutation in FBN1 known to cause Marfan syndrome
__ presence of haplotype around FBN1 inherited by descent and unequivocally
associated with diagnosed Marfan syndrome in the family


Differential Diagnosis:
Homocystinuria - obtain plasma amino acids
Congenital Contractural Arachnodactyly (MIM 121050)
Familial Thoracic Aortic Aneurysm (MIM 132900)
Familial Aortic Dissection (MIM 132900)
Familial Ectopia Lentis (MIM 129600)
Familial Marfan-Like Habitus (MIM 154705)
MASS - myopia, mitral valve prolapse, mild aortic dilatation, skin and skeletal (at least 2, preferable 3 criteria)
Familial mitral valve prolapse syndrome
Stickler syndrome (MIM 108300) - myopia, vitreoretinal degeneration, retinal detachment, deafness arthropathy, spondyloepiphyseal dysplasia, joint hypermobility, midface hypoplasia, micrognathia, U-shaped cleft palate, mitral valve prolapse
Shprintzen-Goldberg syndrome (MIM 182212) - Marfan type skeletal involvement AND craniosynostosis AND development delay

[Pooka1]

That's a long post.

The most potentially serious issue with Marfan's is the heart issues. And the most common problem within that category is aortic dissection as I understand it.

As I understand it, aortic dissections can be avoided with surgery to correct them before they occur.

Aortic dissections can be surgically treated once they occur but it is much dicier so the point is to watch the aorta if you have or are suspected to have Marfan's as I understand it.

[MJB]

Thanks for the info! Judging by the full description I don't think that she has that.

[Pooka1]

Well I don't like adding to this monster thread but this is where I mentioned this topic so I'll post it here.

Their hearts, heart functions, aorta, mitral valve, pulmonary arteries, etc. etc. etc. are completely normal. He does not recommend that they need to repeat the measurements unless the geneticist, who we will see in mid August, suggests it to r/o emergent Marfan's or other of a number of connective tissue disorders.

I was impressed that the guy did an exam for Marfan's characteristics which I didn't think cardiologists necessarily do. I guess he does lots of cases ruling Marfan's in or out and knows what to look for in these kids.

Since they have no involvement with any other system (heart, skin, eye) to date and only have some of the skeletal characteristics of Marfan's, I do not believe they will ever get a diagnosis unless something changes. I also think MASS is ruled out unless something changes but there are other connective tissue disorders, a spectrum, that might never be ruled out as I understand it. It's a murky situation with this constellation of signs and symptoms. But I guess I don't care if they have something else as long as the heart issues are ruled out as appears to be the case.

I asked our pediatrician for the cardiologist and geneticist referrals... she didn't suggest it because, as I mentioned, she doesn't think they have Marfan's. But the cardiologist did say that he had parents coming in with kids who had less skeletal indicators for Marfan's than my girls. That made me feel better, like I wasn't crazy or generating my own medical advice! ;)

So it's a good day for my girls and a load off my husband and me. :)

[MJB]

I contacted Dr. Rivard and Dr. Coillard about Halle's pronated ankles, about whether she should get inserts for her shoes or not and this is the response I got... I had no idea! So I guess she can't get inserts until she's older? I don't know what to do because she really should have that taken care of or she may have problems with her ankles as she gets older...

"Except if your daughter have important feet pain you must not treat her feet because you have a very high risk to increase the scoliotic curve with any insert but the decision is yours.

Best Regards

Dr Coillard and Dr Rivard"

[Pooka1]

My daughters got inserts to correct the flat feet which I'm told can actually be corrected if caught early.

The inserts were not for the pronated ankles to my knowledge.

Also, I'd like to see the evidence for his statement that inserts can worsen scoliosis. It sounds like something a chiro as opposed to a medical doctor might utter.

[emarismom]

Sharon,

That is wonderful news that your doctor's appointment went well!! Celebrations are in order tonight:)

[mariaf]

Yes, Sharon - that is awesome news!

I was out all afternoon and came on here specifically to see how it went for your girls today.

I'm glad my gut instincts were right and that all is well!!!!!

[Pooka1]

Thanks Emarismom,

My husband is on business travel (China, Taiwan) but I immediately got an email off to him. He's going to be relieved. :)

It's a load off.

[Pooka1]

Thanks Maria.

You have some pretty good guts there! It was my feeling also but it needed checking.

I feel better going in to see the geneticist now. :)

[HaleyMom]

I contacted Dr. Rivard and Dr. Coillard about Halle's pronated ankles, about whether she should get inserts for her shoes or not and this is the response I got... I had no idea! So I guess she can't get inserts until she's older? I don't know what to do because she really should have that taken care of or she may have problems with her ankles as she gets older...

"Except if your daughter have important feet pain you must not treat her feet because you have a very high risk to increase the scoliotic curve with any insert but the decision is yours.

Best Regards

Dr Coillard and Dr Rivard"

Interesting response from Drs Coillard and Rivard!
Our Dr did prescribe custom-made orthotics for Haley. At first it was just her ankles that bent inwards but then her knees started to do the same. After 6 months of wearing the orthotics her legs look so much straighter and fortunately her back did not get any worse.

[MJB]

Sharon I'm glad your girls appointment went well!

[MJB]

Interesting response from Drs Coillard and Rivard!
Our Dr did prescribe custom-made orthotics for Haley. At first it was just her ankles that bent inwards but then her knees started to do the same. After 6 months of wearing the orthotics her legs look so much straighter and fortunately her back did not get any worse.

I know, I was surprised! I can't see how it would hurt her curve at all and her ankles are very important too, I think I am going to just go ahead and get my family doctor to refer us to someone for that.

[Pooka1]

Sharon I'm glad your girls appointment went well!

Thanks MJB. I appreciate it.

s

[mariaf]

Not sure if it is exactly the same thing, but I know lots of kids w/scoli who also have minor leg length discrepancies. A lot of orthos prescribe custom-made shoe lifts or inserts - and I have never heard that this can make the curve worse, quite the contrary.

Maybe I'm missing something.............

[MJB]

Not sure if it is exactly the same thing, but I know lots of kids w/scoli who also have minor leg length discrepancies. A lot of orthos prescribe custom-made shoe lifts or inserts - and I have never heard that this can make the curve worse, quite the contrary.

Maybe I'm missing something.............

Yeah actually there was a little girl at the office getting her brace the same day Halle got hers and she got a shoe lift in one of her shoes, so I know that Dr. Rivard does give those...

Halle is flat footed and her ankles are pronated, her dad is the same actually and only getting treated right now at the age of 29.

[mariaf]

Thanks for clarifying, MJB.

So I guess you are saying (or Dr. Rivard is saying) that there is a difference between the shoe lifts for LLD's and those for pronated ankles.

Like I said, I could be missing something here - please let me know if you learn more about this - very interesting........

[MJB]

Thanks for clarifying, MJB.

So I guess you are saying (or Dr. Rivard is saying) that there is a difference between the shoe lifts for LLD's and those for pronated ankles.

Like I said, I could be missing something here - please let me know if you learn more about this - very interesting........

Well after Dr. Coillard responded to me saying what I quoted above, Dr. Rivard said we'll look into this more at her appointment in October, so it sounds like he's willing to do something if he thinks it's necessary... Although would she need to be referred to a foot specialist for this though? That's what my H seems to think.

[mariaf]

Although would she need to be referred to a foot specialist for this though?

I'm not 100% sure on that - but I believe that the kids who got inserts/lifts for leg lenghth discepancies got them right from their orthos.

Keep us posted!