spinecor [Archive] - Page 2 - National Scoliosis Foundation Forums

cloggerx3

01-16-2006, 07:11 PM

I appealed to our insurance company (Aetna) on paying for the spinecor. The key point I used to get them to pay was that the spinecor is FDA approved, and that it was the brace that we wanted to have our daughter in. I also challenged them to check prices elsewhere to prove that the charges were legitimate. Then I requested to know how much they would pay for a Boston brace...I never got an answer but then we received more payment. :) (They initially only paid $100.) I also fought the "out of network" provider payment by insisting that there was no other doctor "in network" who was trained in the spinecor. I have been approved to have the doc treated as an "in network" provider. Total charges submitted for her fitting and tests were about $5300. So far, I have gotten the insurance to pay just shy of $3000. I am still bugging them though! DON'T GIVE UP! Keep fighting, it is ridiculous how much we pay in premiums and copays and then they don't want to pay anything. Remember the squeaky wheel gets the grease!

Clogger's mom- Lori

MATJESNIC

01-16-2006, 09:49 PM

Lori,
Good for you. Thank you for your input. I would like to know the code number for a hard brace so that I could find out how much they would pay for it. They can't tell me without a code. This is all so frustrating. I have paid around 6 thousand dollars, too. It is so difficult that we have to deal with this, on top of all the worrying about scoli. Good to hear from you. Hope you and Lauren are doing well.
Melissa

cherylplinder

01-18-2006, 10:25 AM

HI guys!

We had a visit with our regular orhto Monday. First one since I started researching Spinecor. He had never heard of it, but was supportive of trying new things. I was afraid from what his nurse had said in earlier conversations that I would encounter a lot of resistance. She indicated that they didn't use soft braces, (which is true!).

But he had never heard of Spinecor and was very interested in information on it. I know he would love to have something to offer parents of children with curves lower than 25 degrees. I know I would have jumped on anything he could have offered me two years ago. Since the hard braces weaken the back muscles, he does not use them in lower curves.

I can't tell y'all how much your posts give me encouragement and strength!

Gerbo, you are right, the stats on the Boston are no better than Spinecor, and the studies are not as extensive. Things just get accepted as the status quo! ANd I have had a really hard time getting any correction in Rachels. Her x-ray on Monday show an in brace correction of only 2 degrees. We went to get the brace modified, but I don't know whether the modifications are correct. They don't appear so. The pads do not appear to be where the ortho indicated they should be. And I may have to wait a while for them to work us in to check. I get so frustrated!
Cheryl

Alison

01-18-2006, 11:08 AM

I just wanted to say this thread's quite interesting....whilst I'm well past bracing and surgery, it still quite interests me to read this thread. The SpineCor brace kind of fascinates me, and kind of has my curiosity (in a way :-). I do wonder how all your kids in their Spinecor's will go. Just wanted to say....quite an interesting thread, makes for good reading :-)

Regards

Alison

cyprusmom

01-18-2006, 11:20 AM

Hi Pola,
I am glad that Anastasia's curve is stable. I assume he confirmed everything the spinecor doctor said. I agree with you that surgeons are going to prepare for surgery because that is what they are trained to do. I have said a prayer for Anastasia that this brace continues to hold her curve. We both know our girls are at "high risk." That is not news at all. Did the Dr. have anything positive to say about Spinecor?
As far as exercises are concerned, they are to be done in the brace. Every movement that is made is supposed to be conditioning the body to be made correctly. That is why our girls should have their 2-hour break when they are just sitting around watching t.v. or doing homework. When they are active in dance, or running around, or playing a sport, they need to wear their brace. Did your surgeon say this to you today or did your Spinecor Doctor say it? Because I thought the surgeons didn't believe in exercises for scoli.
Anastasia mentioned something about possibly coming to the United States this summer? We would love to meet you somewhere if you come. Let me know. Take care. My thoughts are with you. If our girls need surgery, we will all get through it like all the other children have. We are in the same boat even though we live so far away!
Melissa

Thanks for all your good thoughts. The orthopedic surgeon we see in Greece is in favor of the spinecor and collaborates with the orthotist. Although his first reaction was to prescribe the Boston probably because of her advanced curves, he later said that both have the same chances of success or failure. And he added that the hard ones fail mostly because of the kids discomfort and ending up not wearing it sufficient hours. (It is also the financial matter as with all of us, Boston is cheaper than Spinecor,and most people here in Cyprus do not have medical insurance that would cover that.)

As far as exercises, both the orthotist and physiotherapist instructed us originally to do the spinecor exercises out of the brace and everything else, ballet, PE, basketball, etc in the brace. The surgeon insisted that ALL exercises should be in brace. Like I said, this surgeon is in favor of the spinecor and believes in its philosophy about movement. I think Anastasia prefers to do them in brace anyway so maybe she won't react so much now.

These next 3 months will be so critical for her. She is in good spirits which is so important but I will be on top of her like never before.... :o I will be watching that shoulder blade and the thorax like a hawk.....

We also have an appointment with doctors from a Shrinners hospital who visit Cyprus every April. For a second opinion, hopefully not a confusing one.

As far as us visiting the US this summer most probably we will be in California but I will send you a private message on that.

MATJESNIC

01-18-2006, 02:20 PM

Pola,
I think it's wonderful that the orthopedic surgeon is supportive of Spinecor. I would love to find someone like that here. I just sent a letter of appeal to my insurance company who is insisting on paying us $250 for a $3,500 brace. That is great that Anastasia will get looked at by a doctor from Shriner's. Nicole hasn't done her exercises for the last 2 days. Sometimes it is difficult to find the time because when she comes home from dance, she has to take her 2-hour break. She can't do the exercises without the brace. Sometimes it's after 10 on a school night and she is beat. Every day is different as far as schedules is concerned. But it really upsets me when we miss. At least she is doing her corrective position when she does the side bend in ballet. She just started district chorus. That is one more thing to add to the list. It is so difficult to find a 2-hour block of time. I usually leave it til the end of the day because Nicole hates taking it off and putting it back on when she is pressed for time.
Nicole just bought a dress for the father-daughter dance. In the back, I can see where her shoulder blade sticks out. I wonder if I would have noticed if I didn't know about it. As far as the bodysuits go, Nicole doesn't like the ones from Special-Clothes. But is wearing them. She really loves the Spinecor ones. Take care, Melissa

Celia

01-19-2006, 11:02 AM

Hey gang,

Some of these insurance companies are really the pits ! We've had really good service with our insurance company, so I can't complain.

Pola, congrats on the positive appointment with the ortho ! Hopefully we'll see further improvement at the next visit. I think Gerbo and Lisanna are having their fitting with Mr. Mills tomorrow and I want to wish them well. Cheryl is also scheduled to have an evaluation with Dr. Rivard next week ? If so, good luck !!!!! How long is your stay in Montreal ? Try to visit the Biodome and the old Montreal district - very fascinating !

Alison, thanks for the kudos ! :D I've read your story on Spinekids, very nice !

gerbo

01-19-2006, 12:04 PM

I think Gerbo and Lisanna are having their fitting with Mr. Mills tomorrow and I want to wish them well.

thanks (+ Louise, my wife, is coming as well) All very nervous, not somuch about the brace as such, but about lisanna being braced again after 5 weeks of bliss and freedom (head in the sand can be a comfortable position)

gerbo

MATJESNIC

01-20-2006, 06:52 PM

Gerbo,
Lots of luck with the appointment.
Well, gang, Nicole just left for the Father-Daughter Dance at her school. The last one because she is in 6th grade. She is brace-free for the evening which will probably be about 5 hours total (the ice cream place afterwards is always so crowded). But she has earned it. She is wearing a beautiful pink dress and looks like a teenager already. My baby is all grown up. Hopefully she won't do any growing until she comes back and puts her brace on!! Have a good weekend all!
Melissa

cherylplinder

01-20-2006, 07:07 PM

Gerbo,

I've had you on my heart all day. Hope you had a wonderful fitting!

Melissa,
It's bittersweet to watch them grow!

cherylplinder

01-21-2006, 01:03 PM

We are all set for our visit Tuesday with Dr. Rivard. I am anxious because the Boston brace ended up not correcting Rachel's curve at all, even after modifications with pads. I started out thinking I needed to choose betweeen the two braces a couple of weeks ago. Now the Boston is not even an option.
IF this doesn't work I am not sure what our options will be, so pray that it does! :)
Thanks for all the encouragement and advice, all!
Cheryl

MATJESNIC

01-21-2006, 02:57 PM

Cheryl,
I wish you lots of luck on your visit. I will be thinking about you that day. Did you ever mention your daughter's age and degree of curve? If so, I am sorry I missed it. Some of the Parents have been discussing stapling as an option to bracing for kids whose curves are small enough. Did you see that discussion over on SpineKids. Feel free to ask me anything about Spinecor. I am always here to answer your questions. Also, if your daughter wants to talk to my daughter about it, that could be easily arranged. Good luck and God Bless!
Melissa

cherylplinder

01-21-2006, 11:00 PM

Melissa,

Rachel has a thoracic curve of 33 degress and lumbar 27 degrees. She is 10 years old and has had scoliosis for 2 years. In the beginning her curves were 18 to 19 degrees each. In July her thoracic curve increased to 24 degrees; he did not measure her lumbar curve on that appointment. He asked me what I wanted to do, as he usually didn't brace until 25 but 24 was close enough if I wanted to brace her. I just left the decision to him. I had never done any research and didn't know what a huge increase that was. She had been stable for 2 years and my older daughter's curves never increased ( although we didn't catch her scoliosis until she was 13 and had her period.) Sarah's curve was in the low teens and was a single curve. I was horrified at her December appointment at the 9 degree increase.
Do you know where they do stapling and what degrees? I asked my ortho about it last week, but he indicated it was still a surgery and didn't comment further. It seemed minimally invasive to me, and the article indicated good results.
I had been thinking about how to explore that option. I read about it at one of the Shriners Hospital sites, but the article was dated 2001, I think. I didn't know if it was still being done. I need to check out Spinekids. I have not been there.
Thanks for your encouragement and thanks for caring.
Cheryl

cherylplinder

01-21-2006, 11:00 PM

cherylplinder

01-21-2006, 11:00 PM

cherylplinder

01-21-2006, 11:00 PM

cherylplinder

01-22-2006, 12:42 AM

My computer went haywire as I entered that post! Sorry!

mariaf

01-22-2006, 09:47 AM

Hi Cheryl,

As you can see from my signature, my son had the stapling...and, yes, they are still performing these surgeries, more and more it would seem. I'd be happy to answer any questions you have here or you can PM me.

Best of luck,

gerbo

01-23-2006, 03:15 AM

Hi everybody

Long day on friday. First appointment with consultant due at 11.20, but running a good hour behind saw him at 12.30 only.

Pleasant at straighttalking, seemed to listen and answer questions much better then previous consultant.

Spinecor is the only brace they use mainly because of its wearing comfort and because the evidence is considered to be as good as for other braces, although as far as he was concerned, "the evidence for bracing in general wasn't particu;arly convincing anyway". However, "as we have nothing to offer between observation and surgery" "we might as well try the spinecor". "If he had a daughter, she'd be in a spinecor" He wasn't raving about the current spinecor evidence as it has been produced by the makers and developpers of the brace "who have a personal interest". However, on the other side "Lisanna should be an ideal candidate, with a curve in the 20's and major growth spurt to come) Interestingly, he measured our last months picture out of brace at only 21 degree, which made us slightly insecure again; had the previous approach been ok afterall????

Next; a "Qualscan", which is an imaging method using zebra stripe type lights projected over the body and little stickers placed over the spinal processes to give an indication of the curve. This method is additional to x-rays, to hopefully reduce the need for x-rays, whisl still having an objective measuring method. Quite interesting

Next; fitting of spinecor with orthotist. What we thought was going to be an at the most one hour appointment, turned out to be an at least 3 hour marathon session, with a once again to me very novel assesment method using rather advanced looking electronic equipment to produce a three dimensional image of Lisanna's trunk on the computer with the aim to classify the scoliosis, which is relevant for the way the brace bands are being fitted.

Eventually left after lots of instruction on how to put on/ take off and with advice on a slow building up of wearingtime over 7-10 days.

Initial impressions; yes it feels much more comfortable, although I am a bit worried about the bands around the groin area and how much irritation they might cause, Louise already ordered some cycling shorts to deal with that (moles are a protected species here, so cannot use their skin ( :D ))

hugs feel normal with the brace on

shopping on saturday she noticed a bondage type outfit in the window of "Ann Summers" (a high street shop offering lingery and other equipment designed for let's say "adult entertainment purpose"), and pointed out that it was "just like her brace" (don't they grow up quick)

still feel insecure as we now have 3 months to wait till next x-ray and 6 months to next consultant appointment. Is it going to make a difference?????? I kind of know we are doing as much as we can do currently, do not feel much easier at the moment though, it all feels rather tough to all of us.

gerbo

MATJESNIC

01-23-2006, 06:21 AM

Gerbo,
Thanks for all those details of the appt. Thanks for giving me a laugh about the bondage outfit. They do know too much at their young age. You are right that the only part of the brace to cause a little irritation is the thight and crotch snaps. We have never done anything about it. Nicole just deals with it. Did you get bodysuits. We have discussed those in great length on previous posts. Nicole wore her brace the full 22 hours by the 2nd day, I think. Unlike hard braces, there is really not anything to get used to.
She wears all of her regular blue jeans and shirts over her brace.
Please let me know if your daughter wants to talk privately with my daughter. She has been in it now for 4 months and could give any advice on things such as going to the bathroom. They could e-mail. Anyway, lots of luck. Thanks so much for sharing your story. We have all come up with strategies for washing the brace, as well, so feel free to ask any of us. Take care.
Melissa

Celia

01-23-2006, 08:12 AM

Initial impressions; yes it feels much more comfortable, although I am a bit worried about the bands around the groin area and how much irritation they might cause, Louise already ordered some cycling shorts to deal with that (moles are a protected species here, so cannot use their skin

Gerbo,

You do have a way with words ! I've seen pictures of the spinecor with cycling shorts, but I'm not sure how that would work ?? Would you not have to remove the entire brace when going to the bathroom ? In that SRS presentation, Dr. Rivard did mention that they are working on a different pelvic base, but I don't see how they could anchor and hold the plastic section in place without the crotch and thigh bands ? Anyhoo...I don't care what it looks like, if it works that's the important thing. Interesting that moles are a protected species in England ! LOL

gerbo

01-23-2006, 09:41 AM

Did you get bodysuits. got three, cannot see much advantage to them, not much different than normal ballet outfit, she has her way of dealing with toiletting in them without having to take them off

Nicole wore her brace the full 22 hours by the 2nd day, I think. We would have done the same, but the orthotist suggested the slower introduction, and lisanna, getting every bit of freedom out of it, keeps very strict to his advice. By the way, we were advised 20 hours/ day

Please let me know if your daughter wants to talk privately with my daughter. will ask her and send a private note with her email address if she fancies the idea, thanks

We have all come up with strategies for washing the brace, We were told to put in washing machine in two separate pillowcases once a week on delicates cycle (i did understand all that, not bad for a man!?) Including drying it is going to take longer than 4 hours, which suits lisanna very much as saturday is going to be washday, which means that she will be able to her special balletclasses on saturday pm, without even having to think about the brace

gerbo

gerbo

01-23-2006, 09:44 AM

I've seen pictures of the spinecor with cycling shorts, but I'm not sure how that would work ?? Would you not have to remove the entire brace when going to the bathroom ?
I would think you'd manage it by just undoing the 4 lower straps

Interesting that moles are a protected species in England ! I have to admit, I made that up ;)

gerbo

MATJESNIC

01-23-2006, 02:03 PM

Gerbo,
You are right. Ideally, it is supposed to be worn 20 hours a day with a 2-hour break in the morning and a 2 hour break at night. But never a 4-hour break all at once. Most children cannot find the time in the morning to take the break because they are getting ready for school. We were told we could just take one break sometime during the day or night. Are they telling you that you can put the entire bottom brace in a pillowcase in the washer and dryer? I would absolutely love to do it, but I am afraid to. Nobody told me I could and I am scared that I will ruin it. I throw the top in once a week because our dr. said the dryer is actually good for the bands.
I have just been wiping the bottom brace down with soap and water (or using wipes in between these wipe-downs).
Nicole's brace is already looking worn and it has only been 4 months. Our doctor gave us replacement crotch straps twice so far. Our thigh bands are looking pretty beat. He said next time we will have to purchase some replacement top bands.
Lots of luck!
Melissa

cyprusmom

01-24-2006, 02:51 PM

Gerbo,
welcome "officially" to the spinecor moms and dads club!

Just wanted to tell you that my daughter always wears cycling shorts with a short sleeve tight shirt under the brace and she has found her way of dealing with toilet visits...Lisanna will find what suits her best, have her try it only with the body suits and /or shorts too.

Also, why is your next visit not until 3 months from now? I am pretty sure the protocol says every month for the first 3.

20 hours a day but the 4-hour break never in one strech is what we (try) to do.

I am sure all will be well
( Please remind me what age is your daughter...)

Pola

BlueCrystalMan

01-24-2006, 04:07 PM

Greetings all... been lurking in the forum for a few weeks and have finally decided to post. I've been reading with interest all of your experiences, as my son was just diagnosed with scoliosis... 24 degrees and 21 in the lumbar. Needless to say, at 12 years old he was devastated to learn he would need the hard brace. He is very aware of appearances and it would just kill him to have to wear it. Naturally, I hit the web and found SpineCor and Dr. Deutchman. We went into NYC to speak with him (two hour drive) and I was sold when I left. I wanted to do more research however and thats when I found you guys...

Needless to say, after reading and researching, the following week I took my son back to get fitted for the brace. The first few hours were difficult for him because of the tightness of the brace (he's a very loose clothing type of fella), but now, after wearing it for a week, he doesn't even know its on most of the time. Only issue is the crotch straps... kind of restrictive for a male, but he says he's gotten used to even them.

The best news was when he first put the brace on and re-xrayed him... the top curve decreased by five degrees to 19! So we're very hopeful between the brace and the exercises that he will be 'straightened out' over the next year and a half to two years. Its not an exact science (yet), but everything we've heard and read makes total sense.

My only concern is the insurance battle that is coming up... but thats minor. In short, I'm thrilled with the progress my son is making, and even more thrilled with the service the doctors have provided. They even drop everything to get on the phone with me should I have a concern...

Thanks for all the advice 'behind the scenes'... you're all a terrific group.

Celia

01-25-2006, 08:26 AM

BlueCrystalMan,

Welcome to the group ! :) Melissa also sees Dr Deutchman in New York. I'm glad to hear your son is adjusting well to the brace...and 19 degrees is FANTASTIC !!!!! It's great to have a support system where others are going through the same thing.

celia

gerbo

01-25-2006, 02:47 PM

welcome "officially" to the spinecor moms and dads club! Thank you kindly

Just wanted to tell you that my daughter always wears cycling shorts with a short sleeve tight shirt under the brace We tried cycling shorts today, quite succesful I believe, toilet seeks solvable

Also, why is your next visit not until 3 months from now? I am pretty sure the protocol says every month for the first 3.it is actually one month from now with orthotist and no x-ray and 3 months from now with orthotist and with an x-ray

20 hours a day but the 4-hour break never in one strech is what we (try) to do. I am sure that our orthotist wasn't too bothered about how long we'd have it of in one stretch, was keen to have 2 re-applications daily to ensure continued best fit. Will check this with him next time though

( Please remind me what age is your daughter...), she'll be 12 next week (1/2)

Are you from turkish or greek cyprus?? (or would yoou say you're from cyprus cyprus)

best wishes

gerbo

gerbo

01-25-2006, 02:57 PM

bluechrystalman (i do not really like these internet names, though lots of people seem to use them) suggests you're a dad, which would mean i am not the only, lonely, token spinecordad anymore. Thanks for joining and welcome. Hope so much things will work out for you and your son. Sometimes I just would like to skip the next two years to know whether this is working for us. I think i am kind of confident, though this varies from day to day, more confident though than when we were hardbracing, and it is so, so much more comfortable to lisanna

gerbo

MATJESNIC

01-25-2006, 05:43 PM

Welcome to the Spinecor Gang! I hope your son does well with the brace.
We go to Dr. Deutchman, too. He always takes the time to answer any questions. He's also great with the kids. Good luck
Melissa

LATigner

01-25-2006, 09:46 PM

I've been reading posts on this forum for a couple of years now but never registered. My daughter who is 15 now (10th grade) was diagnosed with scoliosis at age 12 and 1/2 (7th grade). Her curves were about 32 and 38. After much research we decided not to go with the traditional brace but chose the Copes program which she followed fairly faithfully for about 2 years. Initial results were good, curves down to 14 and 26. Over the next couple of years they went up and down and he got stranger and more objectionable to work with. When my daughter entered high school she refused to wear any brace to school and just wore the hard brace at night. We saw Copes last spring and decided that his program was not worth continuing. My daughter weaned out of the brace and worked consistently with a wonderful doctor in Tustin. He has been treating her all along.

She essentially wore no brace for about 3 months & we were hoping that the curves had at least stabilized but the problem with wearing a hard brace for any amount of time is that the muscles atrophy & can't support the correction you receive from the brace. I began looking into the SpineCor system last summer & by fall had decided it was worth a try. We went to Dr. Ron Marinaro in Studio City (he is affiliated with Dr. Deutchmann in New York) in October. Her curves had gone up to 36 and 42 - very scary. At her one month check-up they were down 10 degrees to about 26 and 32. We are encouraged but it is difficult because she will only wear the brace when she's at home so she averages 8-12 hours a day rather than 20. She goes for her first 3 month check next month. The SpineCor is comfortable but the crotch straps are annoying to her.

During the past 2 1/2 years she has grown almost 6 inches from 5'1" to 5'7". Both doctors agree that to keep the curves pretty much the same with that rapid growth is a victory in this crazy disease.

Thanks for all the insights.

Celia

01-26-2006, 04:18 PM

LATigner,

Welcome to the group ! :) Wow, you've been through a lot ! I haven't come across too many people who have tried Copes and the little that I have read, is pretty disappointing. Do you know what risser sign your daugther is ? I was just wondering whether your daughter has much growth left, did they say ?

celia

LATigner

01-26-2006, 05:13 PM

Thanks for the welcome. My daughter is a Risser sign 4. I don't think she will grow much more but the doctor explained to us that until the growth plate is closed (5) and in the teenage years their bodies are in growth mode, hormonally, etc. He feels there is still opportunity for correction and since it was going the other way doing nothing, we wanted to try every option.

Her doctor in Tustin (Dr.Gorrie) has 2 other patients that recently started the SpineCor program. Both have severe curves, one is 19 and the other I think about 30 years old. I know the older patient personally and she has gotten relief from terrible migraine headaches since she started wearing the brace. Of course for these two, it is more about control and stabilization then a lot of correction.

We also took our daughter to New Jersey the summer after she was diagnosed and did ASCO. She did the treatment in the day time and just wore her Copes brace at night. I don't think it did much for her but there has been a lot of research into vibration. Dr. Gorrie uses a Power Plate for his patients (there is a website) as part of the therapy.

Our biggest frusration is getting our daughter to wear the brace - she did so much with Copes that mentally, I think she is done. And of course has the typically teenage mentality of "nothing bad will happen to me". I haven't told her about any of the forums because I don't want her to decide surgery would be a "quick" fix. Our goal is to prevent it if at all possible.

gerbo

01-27-2006, 02:46 AM

Celia

01-27-2006, 08:41 AM

So Pola, I suppose everybody on cyprus always knew that Marcos Bagdathias was going to make it big one day (and all remember him as a little boy going to the villageshop.......) Is everybody very excited?

We have been struggling a bit at night with the left side of the pelvis base causing quite a bit of discomfort and numbness on the left side of the pelvis (just under the ridge) Wonder whether the (back) plastic anchorpoint is too much forward. Where is it exactly meaned to sit, in Lisanna's case the most lateral edge definitely has "taken the corner" and comes to about half way the site.(left and right i.e. symmetrical) Should it stay on the back only? Do I make myself clear? (it is like trying to describe the mona lisa texting, (what am I on about now....????)) right site isn't an issue, but that would be because most tension is in the left

gerbo

Gerbo,

You lost me on Marcos Bagdathias :confused: Who is he ? :D Is Lisanna not comfortable in the brace ? Deirdre has never complained and the plastic pelvic section was never an issue. The only thing that is problematic is the chafing on the legs from the straps. I would give the ortho a call ! I still don't see how you can put on the cycle shorts without messing with the entire positioning of the brace, I mean isn't that the whole purpose of the body suit ? Last question ;) ..... when the ortho measured 21 degrees was that with the computer program ?

celia

mariaf

01-27-2006, 09:25 AM

LATigner,

Having a daughter who will turn 15 on May 1st, I can truly feel your pain with regard to the typical teenage menatlity!!

Good luck,

gerbo

01-27-2006, 09:26 AM

You lost me on Marcos Bagdathias Who is he ?

Oh, you inhabitants of the arctic wastelands, the rest of the world could be wiped out by avian flu, and you wouldn't know ( ;) , sorry, that is so unfair, I know, I humbly beg forgiveness) anyway he apparantly is somebody from cyprus who made it to final of australian open (tennis) as a PLAYER i mean, not a spectator
I still don't see how you can put on the cycle shorts without messing with the entire positioning of the brace, I mean isn't that the whole purpose of the body suit ? putting it on isn't the issue, it is taking it of or pushing it aside or whatever you do, when going to the toilet which seems an issue
Last question ;) ..... when the ortho measured 21 degrees was that with the computer program ? no, pencil, ruler and angle-thingy

About the plasic bits, the two back ones are they on the back only, or do they "take the corner" towards the front??

cyprusmom

01-27-2006, 03:29 PM

[QUOTE=gerbo]Oh, you inhabitants of the arctic wastelands, the rest of the world could be wiped out by avian flu, and you wouldn't know ( ;) , sorry, that is so unfair, I know, I humbly beg forgiveness) anyway he apparantly is somebody from cyprus who made it to final of australian open (tennis) as a PLAYER i mean, not a spectator

Thank you Gerbo!!!! :D
Yes the whole of Cyprus is going TOTALLY crazy with Marcos Bagdhatis and it's actually the reason I haven't been on the forum the last few days!!! I would only check the Australian open tournament website!!!
Both of my kids are watching the matches like crazy and want to hit tennis balls every day!!
And it actually took my mind off from constantly checking my daughters posture, shoulder blade etc.( Although I did wonder if tennis was good for her and using one arm what would that do to her rotation of the thorax)
Anyones' daughter/son plays tennis?

I am a Cypriot ...yes plain Cypriot but of Greek origin, Greek Cypriot, (politically correct way to say it?) Ok political issues on Cyprus that will get our Northamericans all baffled :confused:, (first Bagdhatis, now politics...) so no more on that.

Ok, I am going back to the australian open website......... ;)
Pola

cyprusmom

01-27-2006, 03:51 PM

[QUOTE=LATigner]We went to Dr. Ron Marinaro in Studio City (he is affiliated with Dr. Deutchmann in New York) in October. Her curves had gone up to 36 and 42 - very scary. At her one month check-up they were down 10 degrees to about 26 and 32. QUOTE]

Welcome on the forum. That's a great correction your daughter got, I hope she keeps it and hopefully have more.
I was wondering about Dr Marinaro who is the only one listed on the Spinecor site in California. Could you give a brief inside on your visits with him? The reason I am asking is that we spend many of our summers in Southern California and although my daughter is seen by a great orthotist and orthopedic in Greece, I would consider seeing him this summer if we are there just for a check up.
Is it difficult to get an appointment with him? Friendly? Is he an orthotist or chiro?
Thanks,
Pola

LATigner

01-27-2006, 05:56 PM

Dr. Ron (that's what everyone calls him) is great. He's very laid back and good with teenagers. My daughter really likes him (and that's saying a lot because she's pretty sick of the whole thing.). He is a chiropractor and has taken all of the SpineCor training. He has all the latest testing software, etc. My daughter's chiropractor from Tustin who has been our primary doctor for the last 3 years went with her to her first visit and was very impressed by SpineCor. He (Dr.Gorrie) has been doing his own research and treating scoliosis for about 15 years. Dr. Gorrie also went to a SpineCor seminar last weekend because he has 3 patients using the brace and may bring it to his own office. The seminar was attended by the head of orthopedics from one of the Texas University hospitals so it seems like the traditional medical doctors are opening their eyes to something besides surgery as the cure-all.

Appointments are easy to schedule - he is open some Saturdays too. I would be happy to answer any e-mails if you have any other questions. :)

Celia

01-28-2006, 10:39 AM

BlueCrystalMan

01-30-2006, 03:41 PM

Thanks everyone... Yes, gerbo, I am a dad, so you can be lonely no more! :D

Not sure any of you know, but my last phone call to Dr. Deutchman last week I found out that his appendix had burst right after our visit and he was hospitalized. As of that last call late last week he was still in the hospital but doing fine.

Its been just about two weeks since Nick has been wearing the brace and most times he forgets he has it on... its at the point now where we actually have to remind him to take it off for the two hour break (darn pre-teens!)... although his exercises only take about 15 minutes, he doesn't remember them either... but he does remember to fire up the video games!!

Also wanted to let you know that the insurance battle has begun. Of the $5,600 bill that we had to pay up front, Blue Shield only paid $1,668 of it. Their reason for the denial is that we went out of network to Dr. Deutchman. I have just completed my appeal letter stating that Dr. Deutchman is the only provider in the country, and I've built my case for the SpineCor brace. I'm really hoping that this isn't going to be a long, drawn out battle.

Celia

01-31-2006, 03:51 PM

BlueCrystalman,

Actually dr. Deutchman is not the only provider in the U.S. If you go to the Spinecorporation site you'll see that many hospitals prescribe it as well. I know there are a lot of people in this group that see dr. Deutchman and I certainly don't want to say anything bad about him, he sounds like a WONDERFUL man. The only thing that I question is the fact that he's conducting "ear" and "eye" analysis/tests prior to prescribing the brace which doubles the total cost for the brace from ~ $3,000 to $6,000 for families. I consider these tests questionable and basically a money grab. When I saw dr. Rivard no such tests were conducted !

MATJESNIC

01-31-2006, 05:54 PM

Bluecrystal,
I just sent my appeal because we have Blue Cross/Blue Shiel of Texas and so far they have only agreed to pay 200 and something for the brace. My almost-12 year old daughter is the same way. She doesn't mind wearing it at all. But she hates having to take it off and then put it back on again. She also hates the exercises.
I just called Dr. Deutchman to schedule Nicole's April appt. and nobody told me about him. I hope all is well.
I agree that he has a wonderful personality, especially with his young patients. As far as the additional testing goes, who knows? I do think that if someone didn't want to have that testing done, it would have been okay. But it made sense to me and at this point, I am open to possibilities.
There is another boy who goes to Dr. Deutchman who is your son's age. Maybe they would like to send each other e-mails or something. There are not many boys around here who are wearing the spinecor.
I am so glad we started in Sept. because this summer is going to be challenging. There will be days at the beach without the brace on. We also have spring dance competitions and recitals where Nicole will not be braced. I am glad we had all of this time to follow the 22 hour bracing rules. Soon we will be breaking them. Her 5-month anniversary is just days away.
Melissa

Celia

01-31-2006, 06:31 PM

As far as the additional testing goes, who knows? I do think that if someone didn't want to have that testing done, it would have been okay. But it made sense to me and at this point, I am open to possibilities.

I don't believe there is a choice, somehow people are brainwashed into submitting to these ridiculous tests.

Sir Jeffrey

01-31-2006, 06:45 PM

Sorry if I'm out of line here but here's my two cents worth. Sometimes we as parents want to trust the doctors so completely that we agree to whatever they want. My question is this: is the doctor using the results of the eye and ear tests for research? I read somewhere that someone was asking about poor eye sight being associated with Scoliosis. Someone has to do research because if someone doesn't, where would we be with our kids? No matter what the cost, if I thought a test would help explain the reason for Jamie's scoli. I'd do it. In fact, I have taken her to a Neurologist to find out if her scoli. is caused by an underlying neurological condition.

Always remember that as a parent you have the right to refuse anything you don't feel comfortable with. Most doctors/nurses aren't use to parents refusing anything, but they will follow your wishes. At one of my daughter's appts. they wanted to x-ray her and I refused. The nurse told me she never had anyone refuse x-rays and she needed to ask the doctor if that was okay. I didn't care what the doctor said, I am her mother and my word was final. The doctor agreed with me that she didn't really need the x-rays, but it was just part of their normal routine to x-ray every scoli patient before the doctor sees them.

Mary Lou

Celia

01-31-2006, 06:49 PM

Sorry if I'm out of line here but here's my two cents worth. Sometimes we as parents want to trust the doctors so completely that we agree to whatever they want. My question is this: is the doctor using the results of the eye and ear tests for research? Mary Lou

Mary Lou,

Dr. Deutchman is a chiropractor, what kind of research would he be doing ?

MATJESNIC

01-31-2006, 07:07 PM

Hi all,
The testing was actually neurological testing. It wasn't done by Dr. Deutchman. It was done by another Dr. whose specialty is neurology. It was very extensive. Nicole has some exercises that she does to address some of the results. She also does some balance exercises on a wobble board.
As far as refusing x-rays, my Mom did that all the time with the Dentist. She was very conservative in that area when we were growing up. We have never had a problem when we refused x-rays.
We will only do what we feel comfortable doing. For example, we don't have Nicole adjusted because we don't feel comfortable doing that. Even though it was suggested as part of the chiro's plan for her, we refuse to do it. We have never been made to feel uncomfortable because of our decision. We have always been respected for it.We didn't grow up being adjusted. But I know people who have been adjusted by a chiro since birth and they swear by it.
When 2 orthos told us to use the Boston Brace, we didn't follow either of their advice. We don't let any doctor intimidate us. We have our own minds and we don't allow anyone to brainwash us.
Melissa

cherylplinder

01-31-2006, 07:24 PM

Hello all Spinecor moms and DADS!!!
Rachel and I had a wonderful, if exhausting(the travel), visit with Dr. Rivard and Dr. Coillard.
I wanted to post our experience so all could benefit from it. If I run out of time (I'm slow), I'll continue later.
As parents, just as it is hard for our physicians, it is hard to buck the supposedly "tried and true." I had a really hard time, but had some mitigating factors.
Rachel has always been plump. She plumps up in the winter, when it is rainy and cold. And slims down in the spring, when the weather is nice, and in the summer, when we swim all day.
This past summer, Rachel was very ill. The cause was unknown, but her intercranial pressure went up very high and caused headaches, nausea, vomiting, papilledema(swelling of the optic nerve which can lead to blindness), and retinal hemmorhages. She was in the hospital on and off all summer, and they gave her a medication that did not allow her to sweat. Therefore she could not go out to play. We usually have access to a pool, but were moving and did not. As a result, my little plump girl got down right chunky. I asked my pediatrician about it and he said to continue to eat right and exercise. He did not like to put young children on a diet.
In July, when we were still dealing with the increased intercranial pressure, we went for her 6 month check up for scoliosis. Her curves, which had been 18 to 19 degrees for 2 years, were up to 24 degrees.
I asked about bracing and exercise when she was first diagnosed, but the current thinking was that traditional bracing caused muscle atrophy(which it does), and should not be considered unitl 25 degrees. (I have since researched that an increase of 5 degrees over 6 months in certain curves is an indication for bracing or if curve is between 20 and 25 and child is premenstrual) OUr physician choose to watch and wait, probably because of the summer trauma to avoid putting her through anything new. In December, her thoracic curve had increased to 33 degrees.At this time our orhtopedic prescribed a TLSO brace.
I am not promoting anything. The following are my conclusions from the past few weeks. So take these conclusions for what they are.
Spinecor is a new advance in the treatment of scoliosis. It is not based on the traditional three point system(TLSO, BOSTON, etc) It has indications for curves under 25 degrees because it does not lead to muscle atrophy, but instead tries to correct postural and structural problems by strengthening the correct muscles and correcting rotation problems in the spine. It is FDA approved. From my research, the results in curves over 30 degrees are at least as good as results with traditional bracing, but I am no expert!
To continue, research indicates that traditional bracing is not as effective in children with a less than ideal BMI. Studies show that they have a 3 times greater chance of progressing to surgerywith traditional bracing (TLSO).
I contacted Dr. Paul Sponsell of John's Hopkins, who uses the Spinecor, with my questions, but he was not sure of results in children with a higher BMI.
I then contacted Drs. Rivard and Coillard with my concerns.
Dr. Rivard said he had good results in children with higher BMI's. He said they had not published studies on this. He was willing to evaluate her.
In the meantime, we tried twice to fit Rachel with her TLSO without success, as it did not help her curve.
Dr. Rivard and Dr. Coillard were very thorough, kind, conscientious, and informative. They were some of the nicest doctors I have ever met. They communicated with me as if I were on their level.
They did lateral, I think you call it AP(from the back), and supine xrays. He explained that her lumbar curve, even though it almost equals her thoracic curve, was a compensatory curve. Her thoracic curve measured 38 degrees, up 5 degrees from December 15th x-ray. He said there is always 5 degrees measurement error, but I don't know if the error is in our favor (33) or not at this point. Rachel's supine x-ray is 22 degrees, and he hoped to be able to correct her to a least that eventually. I asked if the bone deformity ever corrected with bracing, (i.e. structural correction, bone remodeling) and he indicated that was possible. He was very practical, without being unrealistic, giving hope, yet reminding me there were no guarantees.
Dr. Coillard and Souad (one of the other researchers) fit Rachel with her brace, performing the corrective movement and fitting the straps to that.
Rachel's rotation, which measured 10 degrees before fitting, went to 0. Her curve x-rayed in brace at 30 degrees.
Dr. Rivard did not give us any exercises, indicating the brace was "24 hour" physical therapy, when I asked about P.T. Dr. Coillard helped Rachel put on her brace until she and I felt comfortable doing it on our own.
I pray this is an answer for us.
They were some of the kindest, most humble doctors I have ever met. Their total dedication is to children.
Hope this helps someone!
I will try to post some of the websites I found informative in case others have missed them on this forum.
God Bless!!!!
Cheryl

Celia

01-31-2006, 09:03 PM

Sir Jeffrey

02-01-2006, 06:28 AM

Celia,

From what I'm hearing, the Spinecor doctor is doing a thorough exam of these kids to try and figure out if there is an underlying problem causing their Scoli. We've gone the "traditional" way of bracing with my daughter--Milwaukee and then a Boston brace--she's had numerous x-rays, MRI, CT scan, neurological exams by 5 different orthos doctor, extensive family history by the same doctors, plus an exam by a Neurologist. As soon as I mentioned her Scoli. to her eye doctor, she started asking a bunch of questions and her exam took a lot longer than usual and still does. Does that mean there is a connection between bad eye sight/Scoli? I don't know. Was my family doctor trying to get more money from me when Jamie was in a brace because he saw her every two to three months to monitor her lung and heart capacity while in the hard brace? No, I don't think so.

Just a quick question out of curiosity. How many of your Scoli. kids need to wear corrective lenses? Jamie does and has for several years and the changes in her eye sight started around the same time I suspect her Kyphoscoliosis started.

Mary Lou

MATJESNIC

02-01-2006, 06:36 AM

No,
He is a chiro with specific training in neurology as it relates to scoliosis and other issues.
We are going to N.Y in April, how about if I ask for something written to explain the process. It will be easier that way than for me to try to explain it.
Melissa

Celia

02-01-2006, 07:34 AM

Celia,

From what I'm hearing, the Spinecor doctor is doing a thorough exam of these kids to try and figure out if there is an underlying problem causing their Scoli.

Mary Lou,

There is no way he's doing a thorough exam. To me, it's like going to the doctor with symptoms of a cold and he then asks you to take off your shoes to look at your feet. Maybe there is a remote undiscovered connection between scoliosis and eyes and ears, however, who is HE to conduct these studies ? Is there a study ? I think not. Furthermore, people are generally not charged for taking part in studies. Dr. Deutchman is not following the Spinecor protocol ! Finally ;) to answer your question, Deirdre's eye sight is superb !

BTW....when did you become Sir Jeffery ? :D

Snoopy

02-01-2006, 09:06 AM

I never said for sure that there was a study going on. Maybe there is maybe there isn't. Is there a connection with Scoli. and bad eye sight; or with flat feet; CMT (yes); Neurofibramotiosis (sp?) yes; spinal tumors (yes); genetics (somewhat); but how are we to know if any of those things have caused the Scoli. or if they are may be a side effect of Scoli. or for that matter have nothing to do with Scoli. My daughter has been checked by many different types of doctors to see if there is any known cause for her Kyphoscoliosis and a lot of it was from me asking for the exams. If there is some unknown element that caused her Kyphoscoliosis, I want to know about it especially if I can do something about it!

Please refresh my memory, do you have a child in a Spinecor? Since I'm just learning about the Spinecor, would you please explain what part of the protocol Dr. Deutchman is not following.

Mary Lou

P.S. I've changed my name again!! Just want to keep you all on your toes, I guess. ;)

Celia

02-01-2006, 09:29 AM

Mary Lou,

Are you going through some kind of identity crisis ? :p The part that concerns me about Dr. Deutchman and his practice are these "neurological" tests. I don't believe they're elective and it effectively doubles the cost of the brace for anyone who sees him.

LATigner

02-01-2006, 10:42 AM

My daughter also had the neurological testing done. Dr. Ron Marinaro explained what it was for and we chose to do it - no pressure or other tactics to try and force us. The reason we elected to do the testing is that there is a theory that occular vestibular inbalance is associated with scoliosis. Dr. Ron said that all of the scoliosis patients he has tested have had positive results. He was also clear that it is unknown whether this causes scoloisis or is a result of scoli. But it makes sense to me that if a person's brain does not perceive the vertical plane correctly and thinks they are standing up straight when they are not - this is a deterimental thing.

Yes, the testing added $1200 to the cost but we were willing to try it based on our own research and conversations with Dr. Ron and others. Our daughter has some simple eye excercises to do. Our position is that we will try anything that makes sense and seems reasonable to us if doing it brings no harm. The medical establishment does not know what causes idiopathic scolosis and I personally have seen way more dedication to my daughter from her chirpropractors than the orthopedic specialist. He is stuck in wear a Boston Brace, that's the only thing to do and then have surgery if it doesn't work. Each parent has to make the best choice they can for their own child and new cures won't come from doing the same old thing.

I was surprised that Health Net actually paid over $3600 of our $5500 cost - so keep fighting your insurance battles, sometimes its worth it.

Celia

02-01-2006, 11:11 AM

The reason we elected to do the testing is that there is a theory that occular vestibular inbalance is associated with scoliosis. Dr. Ron said that all of the scoliosis patients he has tested have had positive results.

How are these additional tests going to change the way your daughter is treated ? What is Dr. Marino/Deutchman going to do with the results of these tests ? Are they going to do brain surgery or something ?

Snoopy

02-01-2006, 11:20 AM

Celia,

No identity crisis, just problems with the forum (no offense intended). Hopefully I can stay with the same name now without problems.

Do you have a child in a Spinecor brace?

Mary Lou

Celia

02-01-2006, 11:57 AM

Mary Lou,

I'm sorry to hear you're having problems :( Yeah..... Deirdre is now in the Spinecor brace and her "in brace" curve is at "1" degree :) *yahoooooo* She is out of her casts and the whole ordeal is quickly becoming a distant memory. How are things with you ?

MATJESNIC

02-01-2006, 12:51 PM

How are these additional tests going to change the way your daughter is treated ? What is Dr. Marino/Deutchman going to do with the results of these tests ? Are they going to do brain surgery or something ?

Nicole has specific exercises to do to strengthen her eye muscles. They involve eye tracking, etc.
Melissa

Celia

02-01-2006, 01:30 PM

Melissa,

You still don't see how you've been duped ? I give up ! :rolleyes:

Snoopy

02-01-2006, 02:49 PM

LindaRacine

02-01-2006, 03:08 PM

Melissa...

I have to agree with Celia on this. I can see how this testing might help the chiropractor (in that he can use it if he finds a publisher for his study), but how is it helping your child? I don't see how it's going to change anything about the way your child is treated. In traditional medical treatment trials, patients and insurance companies do not pay for things like medication or devices that haven't yet been proved. In fact, patients are often compensated for their participation.

--Linda

LATigner

02-01-2006, 04:01 PM

We are not part of a study that I know about. How it helps our daughter's treatment is that she is then given exercises to correct the inbalances. Scoliosis is not just about a curved spine but the reasons it ends up that way. There has been research into different areas - how the brain relays messages to the nerves, how the nerves communicate with the muscles, chemical inbalance, etc. Something causes the symtoms. In my daughter's case an EMG shows that the muscles in the curve areas are overactive on one side and underactive on the other - which is one reason the spine is being pulled into a curved position. This is not a simple disease and I think I have an obligation as a parent to do everything I can and to research everything I can.

Bottom line - you have to get to know the doctor and see if you trust them. Copes was just about the money and that became evident - not to say the brace wasn't good, but some of the other things he had in his treatment protocol were questionable. They might not have been harmful but definitely made him more money. But I don't think it's helpful to assume that every doctor wants to do unneeded things just to make more money. Frankly, I think the orthopedic surgeons have a huge stake in keeping surgery the treatment of choice and may not be all that motivated to be open-minded to non-surgical treatments. As to insurance companies paying for things, they always lag behind in recognizing new treatments/drugs and paying for them. I'm sure we can all remember when people had to fight to have bone marrow transplants covered and when much of the medical community did not consider them an appropriate choice.

As parents, I'm sure we all just want to the best for our children and it's great to have a place like this to support each other even if we don't agree with someone's choices.

gerbo

02-01-2006, 04:05 PM

In my daughter's case an EMG shows that the muscles in the curve areas are overactive on one side and underactive on the other -
interesting, can you remember which was the "overactive" side??

LATigner

02-01-2006, 04:10 PM

I'll have to get a copy of the test results as I dont' remember. I'm taking my daughter today so I'll see what I can do and let you know. I just remember it's very consistent with both curves.

LindaRacine

02-01-2006, 04:43 PM

We are not part of a study that I know about. How it helps our daughter's treatment is that she is then given exercises to correct the inbalances.

Has this chiropractor found scoliosis patients who don't have these "imbalances?" And, if so, do they not get the exercises?

--Linda

LATigner

02-01-2006, 09:38 PM

I do not know about all of his patients - I'm sure some choose not to get tested. He is treating a couple of older patients that go to my daughter's same chiropractor. One is 20 and the other 34 and I think they elected not to have the testing done. I asked why and I think they said that since the scoliosis is more established as you get older and curves become structural it is not as effective. I wasn't there in person to hear Dr. Ron's explanation but I do know that he did not pressure them.

They are very interesting tests to watch. The patient wears special goggles that record how your eyes move. They are connected to a computer which records the data. He had my daughter sit and lie in certain positions and move her head and eyes - sometimes together and sometimes separately and the program records the movement. In my daughter's case, when she turns her head and looks to the right, her eye movement is delayed and does not follow the direction she turns quickly enough. She was given a set of 3 eye exercises to do for 3-4 weeks and then there will be a second set.

Also, he said he has some scoliosis patients that have an inner ear inbalance and get dizzy very easily. My daughter does not have any problems like that. They are not sure what role (if any) the occular vestibular inbalance plays in the development of scoliosis or if it is a side effect of having the disease rather than a contributor. Dr. Ron was very upfront about this - he did not try and get us to believe this was some magic cure. If you want a more detailed and scientific explanation, I'm sure he would be happy to speak with you on the phone.

Celia

02-02-2006, 09:29 AM

Celia,

Tell me about Deirde. Were you doing serial casting with her? Why was she switched to the Spinecor? Wow! 1* in brace----that's awesome! I'm always curious....my daughter and I run a Scoli. support group and I'm always trying to stay up on the latest treatment.

Mary Lou,

Yes, we did serial casting for quite a long time - her curve was severe, 60 degrees ! :( Actually serial casting for progressive infantile scoliosis has been around for quite a long time, I guess it just fell by the way side by some medical professionals in favour of "better" newer methods to control the curve. If you're interested in reading articles about serial casting, I've provided a link to articles that I've uploaded to a different group, included is a butchered French translantion by me :D of a Cotrel/Morel article which was published in 1964 discussing EDF serial casting.

The reason I chose the Spinecor brace over rigid bracing was because it just made sense to me at the time. I didn't want Deirdre's muscles to further atrophy and I wanted her rib cage and hence her lungs to continue to grow and expand.

http://www.scoliosis-support.org/modules/wfdownloads/viewcat.php?cid=4

BlueCrystalMan

02-02-2006, 10:01 AM

The xray concern shouldn't be any concern at all... THESE DAYS the exposure to the radiation is minimal. It was a concern of mine, and my cousin is an xray technician and I discussed it with him and he said not to worry.

As for the extra testing... the data collected is going toward research, as there is a possible correlation between the ocular vestibular imbalance and scoliosis... the way I understood it is that the mind thinks the patient is out of balance and the brain uses the back muscles to balance a person. Over time, the muscles on one side or the other, depending on the perception of which way the body thinks its falling, get built up and in turn pull the spine that way. The testing determines which side is the more dominant side, and based on the data, eye exercises are prescribed to 'retrain' the brain to eliminate the imbalance. The testing goes toward prescribe specific exercises for the specific curves in his spine.

The exercises prescribed, both for the eyes and the physical part go toward helping to eliminate the curve and its causes. Software is provided to help retrain the brain for a minute every day, and he has to do a spinning exercise in his desk chair while focusing on his thumb in the distance. All this goes toward helping the brain adjust to the fact that my son isn't really off balance.

So personally, the tests made sense, and the data compiled for the greater good of current and future patients, and no I don't think I was scammed at all. Research dictates that they are on the right track, and so far my son's progression in terms of doing his exercises has been tremendous... I can see difference in his balance already both on the exercise ball and when doing his eye exercises.

cherylplinder

02-02-2006, 12:16 PM

Hello all!! :)

I am a bit confused about the positioning of the bolero on Rachel's brace.

It seem to make a difference how far forward or backward I position the bolero when I put Rachel's brace on, and I am unsure where to postion it. In other words, the bottom back hem can be up or down a couple of inches. I never noticed before yesterday. :confused:

Also, even though I center the back seam between attaching each strap, it always goes a bit askew(i.e. a few centimeters to the right) after wearing a while. Do any of you experience this also? Is it normal or of concern?

Thanks so much!

Cheryl

LATigner

02-02-2006, 12:20 PM

Thank you Blue Crystal Man for the great explanation - I was having trouble explaining the inbalance and occular vestibular connection in my post. I know my daughter's muscles are pulling unevenly because the EMG clearly shows it. In addition to the eye exercises, etc. her doctor also has her doing some head weighting. Another thing they have found is that people with scoliosis have a forward head position. Instead of being square over their body, their neck and head go forward. Also, many have lost the normal curve in their neck. It will be great when someone is able to put all of these little clues together and really find a cure.

Celia

02-02-2006, 02:20 PM

Cheryl,

I'm still anxiously waiting for the 2nd part of your story....... No time huh ? ;) As for the positioning of the bolero, I've never encountered that.

cherylplinder

02-02-2006, 03:53 PM

Cheryl,

I'm still anxiously waiting for the 2nd part of your story....... No time huh ? ;) As for the positioning of the bolero, I've never encountered that.
Celia,

I edited my post later that day to finish it. :)

I suspected because I wrote a dissertation and finished a page some might miss it. :D ( See end of page 20 this thread.)

I would be interested to know if you all came to the same conclusions I did or found any other evidence that influenced your decisions, as I am still very anxious.

I have the utmost confidence in Drs. Rivard and Coillard, though. I felt they wouldn't do anything but the best thing for Rachel.

Thanks for caring!!!!!!! :)

Cheryl

BlueCrystalMan

02-03-2006, 12:23 PM

Cheryl... sounds like one or more of the straps may not be 'tight' enough. It is my understanding that there should be SOME movement, although VERY slight. When I had a question about my son's brace (I accidentally tightened the laces), the doctor told me to take a couple of digital pictures and email them to them and within five minutes he called me back and told me all was fine. Maybe you could try that once it goes askew and they can explain it to you either over the phone in email?

As for your anxiety... I'm not sure I found the question you're referring to... can you restate it so I can post my experiences? I have researched a TON on the subject and continue to do so...

cherylplinder

02-03-2006, 07:42 PM

[QUOTE=BlueCrystalMan]Cheryl... sounds like one or more of the straps may not be 'tight' enough.

Blue Crystal,

I wondered that. I had thought about e-mail pictures. (Think it sounds reasonable) I called and left a message, but they have not called back yet. I didn't realize her bolero was going askew until the other day. I kept watching to see if I was applying differently, or something.( Will call again on Monday, since I did not receive a call today. )

As for your anxiety... I'm not sure I found the question you're referring to... can you restate it so I can post my experiences? I have researched a TON on the subject and continue to do so...[QUOTE]

I appreciate anyone's input on the subject. Don't want to be a bother, but I can use any resources you have.

Rachel's curve has progressed 20 degrees since last January (2005). (Jan '05 - 19 degrees, July'05 - 24 degrees, December '05 - 33 degrees, January '06 - 38 degrees )(Hence my anxiety at any decision) I have endeavored to make an informed decision, but only started research mid December. Til then, I had no clue.(i.e. had done no research and relied entirely on my MD) Rachel's curve had not changed in the 2 years since her diagnoses. My older daughter's curve never changed(~14 degrees), but she was diagnosed at 13y/o, now 16y/o. I had not done ANY research to know that a 5 degree change to 24 degrees was definite critieria for bracing, (esp. since she is only 10 and has much growing to do.)

Now I really am alarmed that our ortho chose not to brace at 24. Don't feel secure. He didn't follow guidelines, as far as I can tell. Guidelines I found said (1) brace if 20 to 25, if child has progressed 5 degrees in 6 months (2) Curve is 20 to 25 degrees and child is premenstrual. She met both criteria. The only criteria he gave me was curve 25 degrees or above.
I think that he was considering her rough summer. But, fully informed, I would have chosen to brace.

Same U.S. doctor on January 19th, 5 days before appointment with Dr. Rivard, told me the next step may be a Milwaukee brace, when Boston had no affect on curve. He had never heard of the Spinecor. I told him of appointment with Dr. Rivard. ( I had pursued that becuase Rachel's BMI is above average, and Boston biomechanics are not as good for higher BMI) He was interested in results, but obviously had no opinion.

I don't know whether to pursue Milwaulkee and have ready if Spinecor shows curve progression, or leave be until next appointment. Also, some data I have seen this week gives a limit of 35 degree curve. I am confused. Are we pushing the limits of Spinecor tx? Do studies show something else more effective at this juncture? (I though I was dealing with a 33 degree curve in
December.)

There are a lot of other things going on in life at the same time as this, and my brain gets tired!

I just stumbled across gerbo's info on Weiss study. That scared me. Wish I knew Dr. Rivard's opinion of why that didn't work.

All that to say, insurance is not going to pay for Canadian tx. Boston brace had no effect on curve. (Even after modifying pads) Dr. Rivard and Coillard were going to recheck in April, (instead of 1 month,2 months).Not sure of US MD. Not sure WHERE to turn, if this doesn't work. Running out of degrees.
Past couple of days, not sure if bolero is sitting right!

I think that's the whole load! :confused: :) Sorry so rambly! :o
I have many anxieties, don't I?! :o
I sound a mess, don't I? :D :D I am. :D :D Good Grief!
(I have found that God blesses us in EVERY setback. Understandably, though, I am ready for no setbacks. :) )
Don't want to sound ungrateful! I am aware things could be much worse!

Thanks so much for your input!

Celia

02-04-2006, 05:22 AM

Cheryl,

One or two of the straps may in fact be a little loose. During the first 5 weeks I did tighten the two shoulder velcro straps just a bit (the straps that actually push against the curve) and when we went for our followup appointment, Dr. Coillard tightened the same two straps even further.

Who is your ortho in the States ? He's probably not a scoliosis specialist or a member of the SRS if he hasn't even heard of the Spinecor brace. Regarding the Milwaukee in the event of progression......GREAT IDEA !!! In Deirdre's case, if there was progression I was going to have her wear the Milwaukee during sleep and the Spinecor during the day. The Spinecor is doing such a great job for us, it's not even an option at this point. Is your next appointment with Dr. Rivard in April ? For all it's worth, in my opinion Dr. Rivard is one of the orthopaedic super greats ( I think he's right up there with Cotrel and Mehta ) in the non operative treatment of idiopathic scoliosis in the world ! As for Weiss.....who knows :confused: Maybe he wasn't properly trained to apply the brace or maybe the Schroth exercises were a contra indication to the brace :confused:

Cheryl, I've had a few melt downs myself :) but the sun always shines the next day. :) :) and it shines for all of us.

celia

pat

02-04-2006, 07:52 AM

I just stumbled across gerbo's info on Weiss study. That scared me. Wish I knew Dr. Rivard's opinion of why that didn't work.

My understanding is that Weiss had absolutely no training/didn't follow protocol, had the brace, but that was it! p

cherylplinder

02-04-2006, 03:46 PM

Thanks for the pep talk, y'all! :)

The sun is shining again today!!!!!!!!!! :D

Every day some of the things you have said lift me up.

Melissa, that we as parents are doing the very best we know for our children. Gerbo, that we know of many successful, happy surgery stories. Pat, you've already traveled surgery successfully with one child and are bracing with another. Celia, Deidre's success is heartwarming! And Dr. Rivard IS amazing, and sooooo caring and warm.

Somedays, it's just the moles and the weather! :D :D

You are an amazing group of parents, and I'm grateful for your support!
:)

cherylplinder

02-08-2006, 05:56 PM

Hello all!
Dr. Coillard said that the little bit of twisting I was seeing would not affect the efficacy of the brace. Of course, consult your own orthotist for any questions you have! Thanks for the support!
Cheryl

BlueCrystalMan

02-08-2006, 07:29 PM

Great to hear it, c... small sigh of relief here. Our appointment is in a week and a half... the first followup appointment. I have no real questions... only that the brace seems a little 'loose', but I'm assuming that that's normal and that the followup will allow for tightening...

Celia

02-09-2006, 08:56 AM

Cheryl,

I'm so glad Dr. Coillard put your mind at ease ! When is your next appointment ? Maybe one of these days we'll meet up.

BlueCrystalman,

Good luck with your appointment ! I'm interested to hear how it goes. I spoke to Dr. Deutchman on the phone about a year ago and he sounds like a nice man - he has a very comforting voice :) I have really strong opinions about the neurological tests, but hey I'm not one to dictate how people should live. :D

cherylplinder

02-10-2006, 05:33 AM

Celia,
Our next appointment is in April, but I don't have the date yet. They said they would call me in March. I would love to get together!
I'll let you know.

Blue Crystal,
Thanks for the sigh of relief! Me too! :) Hope you have a GREAT visit with Dr. Deutchman!(holding my breath) :D
We'll be prayng for you.

Celia

02-10-2006, 03:30 PM

Celia,
Our next appointment is in April, but I don't have the date yet. They said they would call me in March. I would love to get together!
I'll let you know.

Well it won't be in April :( Our appointment has not been finalized yet but I think it's sometime in June - I wanted July so I could take my son along and make a little vacation out of it, oh well *sigh* I really want to see the sights and enjoy Montreal in the summer. Maybe one day we'll share a latte and chocolate croissant at one of the lovely French Canadian bistros.

cherylplinder

02-11-2006, 06:12 PM

Sigh! That sounds nice! It would be lovely to have a friend to share Montreal with! Maybe next time, or maybe yours WILL be July, and mine(May, June, July is 3 months) will be the same. It won't hurt to dream!

jessica09261994

02-12-2006, 03:01 PM

i dont even know what the question is theres way too many posts

gerbo

02-12-2006, 03:55 PM

jessica, this is a thread in which users of the spinecor exchange experiences, answer eachothers questions and have a bit of fun along the way. Various questions have been asked, just go through the posts to find out

gerbo

BlueCrystalMan

02-13-2006, 09:38 PM

Thanks. One of the reasons I chose Dr. Deutchman was because him and his partner (can't remember his name... Mark I think) got on the phone with me for such a long time answering every single question, no matter how minor or how many. You're right... he has a very calming sense to him...

The latest 'wrinkle' so to speak is that the one strap is VERY loose... not sure if it stretched or not... but this is what drives me nuts... I want to tighten it, and have the ability to, and am sure if I called now at this late hour one of them would call me back, but it could wait til tomorrow, as I don't want to mess anything up.

From the good news department: He keeps forgetting to take it off for the two hours, which tells me he's completely comfortable with it... a big sigh of relief for me.

MATJESNIC

02-14-2006, 09:01 PM

Hi Everyone,
I wanted to share some good news this Valentine's Day. My insurance company originally wanted to pay me $200 for my Spinecor brace. I wrote a letter of appeal, and they are now paying all but about $900. What a great relief. I'm wondering if I can try to get more based on the fact that I have no choice but to go out of network to see Dr. Deutchman. There is nobody in my network who is involved with Spinecor. Anyone have any ideas?
Melissa

Snoopy

02-15-2006, 06:21 AM

Congrats on getting more money from the insurance company! At this point, I would suggest that you keep fighting!

Mary Lou

pat

02-15-2006, 08:08 AM

Melissa! That's great!!! I just got a letter from our ortho that I'm sending to our insurance company expressing the need for this brace. I'm hoping to recoup some $$.

mariaf

02-15-2006, 08:40 AM

Melissa - that IS great news! As Mary Lou said, keep fighting. You have nothing to lose by asking for more based on the fact that, as you said, you really had no choice but to go out of network. All they can say is no.

Good Luck,

Celia

02-15-2006, 10:05 AM

Hi Everyone,
I wanted to share some good news this Valentine's Day. My insurance company originally wanted to pay me $200 for my Spinecor brace. I wrote a letter of appeal, and they are now paying all but about $900. What a great relief.

Melissa,

I'm soooooo happy ! *thumbs up* What a great Valentine's gift :D

Pat,

Dr. Rivard gave me a letter to send to the insurance co. and it worked !

BlueCrystalMan

02-15-2006, 10:25 AM

Excellent news! All but $900, based on what we just paid ($5,600) is pretty good! Our insurance pays about 70% for in network stuff (still waiting for the determination on my appeal)... so all but $900 would make me very happy.

Congratulations!!! Can I ask who your insurance carrier is?

sportsdoc

02-15-2006, 01:06 PM

just wanted to introduce myself...
I'm a chiropractor and I found this site while doing some research for my scoli patient's tx options...
I was looking into spinecor and the thread title caught my attention...
I've followed through some of your posts and must say I'm impressed and will recommend my patient for this brace..

BTW, I noticed some of you mentioned vestibular testing device. Since I do not do that in my office and I do not have Dimplomate of Neurology (3 additional post doctorate education) I can't say I know exactly how it works..but I could shed some principles since some of the technique I use is based on the same principle..and alot of sports rehab does now...the knowledge of human body has been so limited up until past decade and all the new studies pouring out are making big changes in the way we think of the body...the seemingly weirdest and most complex area would be the neurology lol..

Anyway, let me give you a simple example of what I do and perhaps you'll get the gist of the device. When a patient complains of spinal muscle spasm or contraction, there are several ways to lengthen the shortened muscles...one of the ways is what's called muscle energy technique...you have the patient move as far as he/she can to the restricted side, then have them do isometric contraction on that spasmodic muscle, relax..and you can move a little further...and you keep doing it until you achieve optimal results...and it works quite good...now...there is a procedure that actually helps this process along and that's using eye muscles...when patient is doing isometric contraction, patient rolls eyes towards the contracted side..and when they relax and it's time to stretch, eyes are rolled to the side the neck is being stretched to...

Eye muscles seem to be connected to your skeletal muscles (the pathway is too complicated to explain here...and most doctors cannot recite this anyway lol) and do effect their actions...I could give you a simple demonstration right now...

Now..it's pretty simple...so try it right now...
Roll your eyes to far right wall...stare at it...roll it all the way to right and keep it there...do not move it...while you have your eyes there, try rotating your head to left...you'll find it a bit challenging..

Now, roll your eyes to left all the way and rotate to left..same side...you'll find it much easier and you can rotate quite farther...

Muscles contract and relax with different cues from your brain and many things effect your brain...eye muscles are one of the primary ones..

I think there was a study that scoli patients always have eye muscle imbalance...dont' quote me on that...I'll have to look that up myself...

Dr. Deutsch (SP?) some of you mentioned is a Diplomate of Neurology and teaches this...

_________________________

Oh..I also noticed some of you mentioned Dr. Ron out in CA...that's the doc i'll be referring my patients to for bracing...he's the only guy out here...i'm looking into accreditation for spinecore fitting myself...I can't believe some of you are flying to different states or countries to get this done...hopefully, spinecor will be the standard for bracing and more Dr's will offer the fitting service...the process is quite rigorous...probably one of the reason why there aren't too many centers at this point...

anyway...thanx for all the good info..i've learned so much from this thread...Now i can let my patients know all the pros and cons of spinecor from patient point of view...

I'll be lurking around to learn more from you guys so if you have any questions regarding chiropractic aspect of tx, I could certainly share some input..

sportsdoc

02-15-2006, 01:37 PM

Oh..i forgot to add...some of you were wondering about the rehab aspect of scoliosis..

The wobble boards are used mainly to train proprioception...
Each joins in your body has what's called mechanoreceptors that detect positional sense and sends it to the brain so that it could respond appropriately...I use it to improve athletic peformance and prevent injuries...
when mechanoreceptors are inhibited, one could over compensate and suffer cramps or if not enough response, sprain or strain..

anyway, idiopathic scoliosis is just one of the scoliosis as you all know...
there are other types of scoliosis and one of them are posture related..in those cases, when certain joints are flexed to one side and kept there for a long time, mechanoreceptors are inhibited and your brain thinks that flexed position is the normal position...so mucles on the contracted side shortens permanently...in those cases, we utilize adjustments to stimulate mechanoreceptors and stretch out the shortened muscles...
balancing exercises such as wobble board makes mechanoreceptors fire like crazy...and also strengthens the accesory muscles to guard the joint better..
Swimming is another exercise that fires up mechanoreceptors on your spine...

Now...why would you be doing this to idiopathic scoli patients? When you are stuck at certain position, as I mentioned above, your brain is fooled into thinking that that is the normal position...so posture isn't the main cause of idiopathic scoli(well we don't know what's causing it yet although there are some promising studies pointing to hormonal imbalance) it can be the secondary player and be the contributing factor...

Some of the chiropractic practitioners treating scoliosis without braces do achieve some good results with rehabs alone...I wouldn't go around getting adjusted from any chiropractor though..there is a specific technique which does wonders at times and the most popular form of technique that most chiropractors utilize do not get results with scoliosis...

Some of the techniques specific for spinal correction would be Pettibon and CBP (based on neurology)...I can only comment on CBP since that's what I do on some occasions...it's serious of global adjusting in mirror image and mirror image and balance exercises...I feel with this type of rehab along with spinecor bracing would do wonders...

I am also thinking of adding some more protocols such as Grastons to break down adhesions of the contracted side and maybe muscle energy work to stretch out the muscles manually...I'm quite excited...this brace is opening up a whole new treatment options...All these would've been impossible with hard bracing...

MATJESNIC

02-15-2006, 02:29 PM

BlueCrystal,
You misunderstood me. All but $900 of the brace was covered. I also have paid out around $6,000. I have only seen $2,000. I have my deductibles and everything is considered out of network. We have Blue Cross Blue Shield of Texas. Yes, we live in Pa. This was the only insurance offered by my husband's company (we didn't want an HMO). So all but $900 was covered for the $3,500 brace. This has been a huge expense for us. Sorry for the misunderstanding.
Melissa

BlueCrystalMan

02-20-2006, 10:10 PM

Melissa, no apology necessary... bottom-line is any cash back is great news. I still have no news on my appeal, and the doctor's office is stepping in to try and get some of the charges approved. It has been a huge expense for us too... and has cleaned us out pretty much, but its worth every penny to me... we just crossed the $6,000 mark ourselves and have only recovered $1,668 of it, but I WILL continue to fight the good fight.

Interesting read, sportsdoc... thanks for taking the time. The hormonal imbalance studies caught my eye... I'd like to hear more on that.

Took my son for his five week followup appointment today... his bands were getting loose, so it was really good timing. First, we were kept waiting two hours because the first patient's curve had changed, so he had to be rebraced... the second patient, in from Colorado, same thing... rebrace. But, the same can happen to us at any time, and I planned on spending the day in the city, so while my wife waited with my oldest, my youngest and my neice and I all played around in the city... :D

One tip, though: If you get to Dr. Deutchman and in the rare instance he's running behind, leave your cell phone number with the receptionist and go play until she tells you its time for your appointment...

Anyway, it is with great pleasure that I announce that in just five weeks, Nick's top curve was, without brace, at 24 degrees, it decreased to 19 degrees when he was first braced, and today, after his adjustment, he is now at 16 degrees!!! WOOHOO!!!

However, the bottom curve, at 19 (or 21, I forget), didn't move at all either way... that will be the one to watch.

Next appointment is in two months... springtime in the city... looking forward to it.

gerbo

02-21-2006, 05:05 AM

sounds pretty good to me, very encouraging!! :D :D

MATJESNIC

02-21-2006, 06:49 AM

That is great news about your son's curve. We have never had to wait for our appt. We usually have a 10 or 11:00 appt. and we always went right in. I guess his practice is growing. Anyway, we are going back in April, as well. Have you eaten at the Jackson Hole yet? It is a chain that is famous for its burgers. There is one near the office. I don't eat burgers, but my husband says they are good.
Melissa

cherylplinder

02-21-2006, 05:41 PM

Congratulations! I am so happy for you and your son! I asked Dr. Rivard in January if the bone ever remodeled, correcting the structural deformities in the spine. He said that does happen. (obviously not every time) I found that very encouraging. Keep up the good work! :D

Celia

02-21-2006, 05:57 PM

However, the bottom curve, at 19 (or 21, I forget), didn't move at all either way... that will be the one to watch.

Next appointment is in two months... springtime in the city... looking forward to it.

WooHoo !! Party at your place ? :D What was the lumbar curve to start with ?

BlueCrystalMan

02-22-2006, 10:01 AM

Heh... yeah... I figure we could lay the brace out in the yard when all is said and done and dance around that $3,500 cloth and bands contraption. :D

Not a big red meat fan here anymore, but we did find a great Italian restaurant around the corner from his office that butts up against the sidewalk with big glass windows... nice to sit and watch the world go by.

The lumbar I BELIEVE was 21... no change either way with the brace.

cherylplinder

02-23-2006, 10:12 PM

Hey!

Y'all have a great weekend! :) :) :)

Ailea,
When is your appointment? I know you said you were having one soon. I'm thinking about you and crossing my fingers. You have been having great results. I think that will continue. Keep your chin up and let us know!
Hugs!!!!!
Cheryl

Celia

02-28-2006, 11:35 AM

Hey gang,

I'm uploading some pics of Deirdre. In one of them, she is wearing the Spinecor brace :) :) :)

http://i41.photobucket.com/albums/e251/sealy25/Picture135.jpg
http://i41.photobucket.com/albums/e251/sealy25/Picture129.jpg
http://i41.photobucket.com/albums/e251/sealy25/Picture133.jpg
http://i41.photobucket.com/albums/e251/sealy25/Picture144.jpg

gerbo

02-28-2006, 12:19 PM

amazing, the size of the furniture they fit in these igloo's :o :o :o

Celia

02-28-2006, 12:23 PM

LOL !!! :D It's one of the deluxe models, complete with an outhouse.

gerbo

02-28-2006, 12:29 PM

:D :D :D :D :D :D

Nicky's Mom

02-28-2006, 03:50 PM

Hey Celia,
Just wanted to say what a little beauty Deirdre is, and her back looks great! I have been "lurking" on this thread for awhile...interested to see how the Spinecor is working out. Hope everything continues to go well for you guys! :D
Cathy

Celia

03-01-2006, 08:32 AM

Thanks Cathy ! It's sooo great to hear from you again. I have a feeling we'll keep "bumping" into each other. :D

cherylplinder

03-01-2006, 09:59 AM

Wow! She looks great! :)

Mom37

03-01-2006, 01:36 PM

My 12 year old daughter has just been diagnosed with thoracic 30 degree Scoliosis and was recommended for Boston brace. We would like any feedback on your Spinecor brace and treatment please. We have to make a decision and want to hear how others have done on Spinecor. Thank you

Mom37

03-01-2006, 01:40 PM

I am an interested parent on how Spincor has helped or not helped your Daughter. My 12 year old daughter has just been diagnosed with 30 degree thoracsic Scoliosis and was advised to get the Boston brace. We, her dad and and and her are interested in the Spincor brace. I read 8 pages of this and am interested in your prgress and anyone elses, good or bad. Thank you

LATigner

03-01-2006, 02:19 PM

My daughter was diagnosed with scoliosis when she was 12 like your daughter. At the time we did not know about Spinecor and so she wore a hard brace for 2 1/2 years. It did keep the curve from progressing for the most part but did not give correction. She is 15 and now using Spinecor.

The hard braces are hot and when you wear them for the length of time they are presribed, the muscles atrophy from lack of use since the brace is holding up the body. The compliance rate with hard braces is lower as they are more uncomfortable and harder to hide under clothes. It is difficult to impossible to do sports, dance, gymnastics, etc.

The published results with Spinecor look good. The brace is totally soft and flexible and as they wear it the muscles, tendons, etc. are reeducated into the correct movement and posture positions. You can wear almost any clothes with it (of prime importance to a teenager) and it's not obvious that a brace is being worn. Best of all, the kids can easily wear if for sports, dance or whatever activity they are doing (swimming excepted). I'm sure the compliance rate is much better.

My daughter wore her hard brace through junior high but not without a lot of struggle. We live in So.Ca and its really hot. She absolutely refused to wear it to high school and was taking it off and leaving it in someone's office. So, we ended up with her just wearing it at night and the curves started to increase again. Hence, Spinecor since last Oct.

Although, I would not presume to tell you what to do. If we had it to do over and Spinecor was available, I would absolutely try it first. Hope this info is helpful. I don't know wear you live but could give you some phone numbers if you want to talk to a couple of doctors that provide it. Feel free to e-mail me at tignerl@amgt.com.

Celia

03-02-2006, 04:58 AM

Hi Mom37,

I got the private message you sent me :) If I had a twelve year old daughter with a 30 degree curve, you better believe I would get her into the spinecor brace ! In my opinion, the spinecor brace is the best brace out there. Have you taken a look at the spinecorporation website for locations that prescribe the brace ?

gerbo

03-02-2006, 05:31 AM

Currently none of the posters in this thread can give any indication of longterm outcomes based on personal experience, some initial corrections are promising, but nothing more than that

The one article describing long term results can be found on the spinecorporation webside, and results look very good, but remember it is written by the "inventors" who might have some commercial interest, or at least a "personal reputation interest" However, there is no reason to doubt their professional integrity.

I think we all agree that it is so much more comfortable than a hardbrace and quality of life seems much better. Where we were struggling with our prvious hardbrace, with many tearful moments, the spinecor is a doddle to deal with and our daughter put it on happily, that must count for something.

My own feeling is that we are taking a bit of a gamble, but then, any other course of action would feel like a gamble as well, it is obvious that they are no clearcut right and wrongs here.

I think we all know how you must be feeling and I hope you kind find the strength and wisdom to make a decision you feel comfortable with

Celia

03-02-2006, 07:35 AM

Gerbo,

Your post sounds sooooo cautious. True, no one can predict the future BUT given a choice between alternatives, let's face it, the spinecor rules :D

gerbo

03-02-2006, 08:18 AM

Your post sounds sooooo cautious

cautious is my third name.........

("very" my second)

Celia

03-02-2006, 08:29 AM

:D :D :D :D Gerbo, you always make me smile.

Mom37

03-02-2006, 11:52 AM

Thanks to all who responded here or privately. I did look at Spinecor on line and have talked with Gary Deutchman DC PC at Scoliosis Systems in NYC and his staff by phone. I am trying to research as much as possible, and was just hoping for some statistics to review. I hoped some few had some results to share on Spinecor. So far everyone here and on the kids forum seem positive. I appreciate all your input, advice, and opinions to help me wheigh the best decision for my daughter. If anyone has results so far I'd appreciate any to help see the benefits or not so far on Spinecor. Thank you.

gerbo

03-02-2006, 12:18 PM

have you been on this site? http://www.spinecorporation.com/English/index.htm

it has all the statistics currently available

gerbo

Celia

03-02-2006, 12:28 PM

pat

03-02-2006, 02:09 PM

I think the big difference with the SpineCor Brace (for us anyway), besides the compliance issue, and the ability to stay active, is the "SpineCor Brace is as effective as the rigid braces during treatment, but it's even more effective in the long run owing to the fact that one observes very little or no loss of correction with THE 5 YEAR POST-TREATMENT FOLLOW-UP. In fact, due to the progressive reduction of the pathological defaults, owing to the fact that the Spinecor Brace do not offer any effect of distraction or support and maintains effective musculature, there is only a low percentage (3.8%) of loss of correction 5 years after the end of bracing, success being reached in 96.2% of the cases." Now we're just all waiting for this report to be published. There's a lot of information out there. And Mom37, as I told you in a PM, whatever you decide, stay strong with your decision! It is certainly not an easy task! Ahh, to be able to have the crystal ball!! Pat

Mom37

03-02-2006, 02:14 PM

have you been on this site? http://www.spinecorporation.com/English/index.htm

it has all the statistics currently available

gerbo

Now viewed. I had just viewed after you sent this. It had more than I had seen on Scoliosis Systems Dr Deutchman site. Thank you. Read from other posts of one of you if not you posted before. Thanks

Mom37

03-02-2006, 02:18 PM

There is also the 40th annual SRS presentation by Dr. Rivard at 8:48 a.m. which can be viewed at the following link. Once again, the results are spectacular.

http://www.istreamplanet.com/srs/default.asp?np=media&conf=3&edi=12

This was great. I watched at least 3 times with my husband and caught more each time on little bits of info. Great. Thank you.

Mom37

03-02-2006, 07:31 PM

We are going with Spinecor scheduled to go March 14th. We appreciate everyones responses. Thanks Lori especially. I am still trying to understand vestibula testing and importance so am researching for anyone that might have useful information to provide it would be appreciated. Thank you!

cherylplinder

03-02-2006, 11:35 PM

Hi Mom,

I know this is a really hard time. The information that you need to know and process to make these decisions is overwhelming. This group of parents is as well informed a group as you will find. They know more than our first ortho and most pediatricians!

My daughter saw Drs. Rivard and Coillard in Montreal at St. Justine's on January 24th to get the Spinecor brace.

I will say that Dr. Rivard, who walked us through the whole experience and willingly answered my questions with tremendous compassion and knowledge, inspired great confidence. It was obvious that helping these children is his life, and he said as much when I thanked him for his kindness.

We haven't had our first follow-up yet, so I have no results for you.

Hugs to you and your sweetie pie!

Cheryl

MATJESNIC

03-03-2006, 05:23 AM

Mom 37,
Where are you going for your Spinecor? We go to Dr. Deutcman in N.Y.
Melissa

Mom37

03-03-2006, 09:51 PM

Thanks. We appreciate all feedback. Let me know how it goes. We are going to New York but Montreal really isn't that much further. Thanks.

Hi Mom,

I know this is a really hard time. The information that you need to know and process to make these decisions is overwhelming. This group of parents is as well informed a group as you will find. They know more than our first ortho and most pediatricians!

My daughter saw Drs. Rivard and Coillard in Montreal at St. Justine's on January 24th to get the Spinecor brace.

I will say that Dr. Rivard, who walked us through the whole experience and willingly answered my questions with tremendous compassion and knowledge, inspired great confidence. It was obvious that helping these children is his life, and he said as much when I thanked him for his kindness.

We haven't had our first follow-up yet, so I have no results for you.

Hugs to you and your sweetie pie!

Cheryl

Mom37

03-03-2006, 10:16 PM

Melissa,

Thanks for responding. Alf mom said you are the one to talk to from the Kids forum. We are also going to NY to see Dr. Deutchman as well. So how long has it been for you and what are your results so far? Did you like him? He seems to have experience. We may do follow up in Sugarland, TX. Not the first but later ones, but we will wait to see how it goes. I asked for them to get pre certification from my insurance. So I know what to expect. Shirley

Mom 37,
Where are you going for your Spinecor? We go to Dr. Deutcman in N.Y.
Melissa

MATJESNIC

03-04-2006, 09:54 AM

Today is Nicole's 6-month mark wearing her Spinecor. She went from a 37 to a 32 in the first 3 months of wearing it. Her chiro believes that dancing 6 days a week has really made a difference. Ballet is one of the best activities for scoli. She goes back to N.Y. on April 10. Any other questions or concerns, feel free to ask anytime. Nicole is looking to talk to other girls who wear the Spinecor, so let me know.
Melissa

Mom37

03-04-2006, 06:02 PM

That is great to hear. I am happy to hear it. Thanks for the update. I will let her know other girls would like to talk with others wearing Spinecor.

Today is Nicole's 6-month mark wearing her Spinecor. She went from a 37 to a 32 in the first 3 months of wearing it. Her chiro believes that dancing 6 days a week has really made a difference. Ballet is one of the best activities for scoli. She goes back to N.Y. on April 10. Any other questions or concerns, feel free to ask anytime. Nicole is looking to talk to other girls who wear the Spinecor, so let me know.
Melissa

javster

03-13-2006, 11:26 PM

Greetings to all, but especially BlueCrystalMan and Gerbo!

My 7yo daughter got her Spinecor today. She has been in a Boston brace for exactly one year. We have been doing much praying, researching and seeking advice from wise friends re. the possible switch to Spinecor. Happy to report that everything is coming together nicely! My wife talked to Dr. Ouellette, DC, in Alpharetta, GA, when we first found out Spinecor was now available in Georgia (we live in Marietta), and he gave my wife the code for the Spinecor brace, which our insurance said they would cover. Also, being that there is a grand total of one Spinecor provider in our state, our insurance approved Dr. Ouellette as in-network, even though he's not in our network.

My daughter, who was very compliant with her Boston brace, though she definitely hates it, was nervous about getting the new brace. We drew up lists of pros and cons, and she accepted Spinecor as the obvious winner... but was still nervous about the unknown. Of course, I am happy to report that the fitting went very well, and dd has taken to the brace beautifully. The main concern now seems to be going potty... =O which is why I ended up at this forum...

We received two bodysuits, but we also have all the very nice Coolmax undershirts she used with the hard brace, so I think we're going to try to make them work with girls body briefs (bike shorts).

FYI, we homeschool, and I belong to many Yahoo groups, which keeps me busy, so I don't know how often I'll post here, but I just thought I'd introduce myself and our situation!

BTW: I forgot to mention that in anticipation to the Spinecor fitting, we didn't have dd wear the hard brace for about a week. We were astounded by the x-rays today, which showed remarkably gentler curves than previous x-rays. I suppose one could say the Boston brace did its job, but we all know that hard braces aren't meant to be corrective... they just stop the progression of the curves. At any rate, we'd rather give God the glory... after all, a large part of our prayer for wisdom re. the Spinecor brace has been asking for a miracle for our daughter. Thank you, Lord!

Blessings to you all as you seek the best treatment for your daughters (and sons).

javster

cherylplinder

03-14-2006, 10:37 AM

Javster,
Welcome to the forum. I am fairly new, also. There is a lot information on this forum to help and support you in your efforts to do the best for your child.
We also homeschool.
I wish you all the best. I am praying for the children and parents on this forum.
If you don't mind my asking, what are your daughter's curves and when was she diagnosed?
Cheryl
P.S. I just noticed that you are another dad. I love seeing dads that care so much and get so involved. It warms my heart.

cherylplinder

03-16-2006, 09:16 AM

Celia

03-16-2006, 10:38 AM

Do any of you check for stretching in the straps and adjust for it? I measured Rachel's straps against the lengths Dr. Coillard wrote on our return appoinment card yesterday, and depending on the amont of stress on that strap, they had all stretched different, but significant amounts. I noticed the brace was tighter on wash day, but didn't think further.
Thanks,
Cheryl

You really should double check with Dr. Rivard/Coillard but yes, personally speaking, I do check for stretching - if a strap looks loose I tighten it. I had to tighten strap #2 yesterday because it was very loose and it was causing her right side to pop out a bit and her torso didn't look level. I don't know if I'm doing the right thing, but I don't feel comfortable having the strap just hanging there. Also...... one of her crotch straps were VERY tight and creating a red mark on her legs and I had to loosen it ever so slightly - this could be attributed to growth of the torso ? It's the only time I've ever loosened one of the crotch straps *worried sick now for fear I've done something wrong* :D :D :D All I can say is that our follow up appointment can not come soon enough. :p

cherylplinder

03-16-2006, 01:39 PM

I did call about loose straps yesterday.The measurements of the straps was on our return appointment card with the phone number. Last night , I thought about possible stretching. I didn't realize how much they had stretched until I measured.
I asked Valerie, Dr. Coillard and Dr. Rivard are out for a couple of weeks, if I should maybe take Rachel for a check with the Spinecor provider in Atalanta, as our appointment is still not made and at least several weeks away.( Her straps have already been loose for a couple of weeks. But this week, it was even more noticeable. I think I washed her brace twice last week, too. That makes a difference.) We are scheduled to see him Saturday.
Rachel's crotch straps have always been pretty loose. I wondered what function they served because they didn't seem tight enough to alter how her base fit.
Loose straps are nerve wracking. :(

Celia

03-16-2006, 02:30 PM

I wondered what function they served because they didn't seem tight enough to alter how her base fit.
Loose straps are nerve wracking. :(

Cheryl,

I've never touched the position of the crotch straps, I have a feeling it has a real important function - except for that minor adjustment. I wash the whole thing, plastic pelvic section and all by hand and hang dry (not by the mediterranean sea as Pola does :D ) I'm not sure on this, but the crotch straps provide the necessary tilt for the pelvic base ? I check Deirdre's straps everyday, and their position is not much different from the last appointment - not more than half an inch difference.

In your case, are the straps much longer ? I wonder if it could be the machine washing and drying that makes them stretch ?

Edit:

I just checked the original measurements given to me by Dr. Coillard:

strap #1 is 20cm th left
strap #2 is 20 cm th right
strap #3 is 40 cm sh left
strap #4 is 50 cm sh right

I measured all the straps and they have all stretched over time by about 3 cm each. I've adjusted for that difference on the velcro fasteners and tightened them an extra 3 cm from the blue mark.

cherylplinder

03-16-2006, 04:49 PM

I did the same, adjusted the straps for the amount they had stretched. The fit is better. As for her crotch straps, they were loose the first day. But her base stays straight and does not ride up. I think occasionally Rachel straps it on a little low, and it slips down a little, but I've never seen it ride up. I could just be that she straps on her base really tight, and it keeps things in place.

MATJESNIC

03-16-2006, 07:53 PM

Hi all,
I don't really understand the crotch straps. Nicole's are fairly loose. We had them replaced twice. Also, they have come off a couple of times (after my husband had put them in). I always thought the thigh bands were more important because you can't remove them when going to the bathroom or you will move the entire brace. The entire brace needs a make-over. These body suits are driving me crazy. Nicole refuses to wear the 4 others. She only likes Spinecor. Every time I turn around, she has no clean bodysuits. Meanwhile, one is ripping again. I would love little panties or shorts with snaps. Can't someone come up with that. Of course, you would still need a little shirt with sleeves, as well.
To all the people who got their braces in Canada, were you given corrective movements to do? Who came up with the idea for corrective movements? Was it the creators of the brace?
So nice to have all of you to talk to.
Melissa

cherylplinder

03-16-2006, 09:12 PM

We were not given any corrective movements to do. I asked about P.T., and Dr.Rivard said the brace itself was 24 hour physical therapy. I have had that question for a while. Is the P.T. described part of the original Spinecor Therapy that will help with correction, or is it an add on by another provider?
I want to do everything I can, as quickly as possible. I thought there was an official P.T. deveoped by Spinecor from the bracing manual on the SRS website.
Maybe Dr. Rivard did not want to overwhelm us with too much at once. Putting on the brace is hard enough at first. A month or so later would be a better time to add on P.T. if the patient so desires.

Mom37

03-16-2006, 11:51 PM

We went with Spinecor and was fitted on Tueasday, March 14th. The degree was higher than originally thought and in brace was less than 5 degrees difference. That is concerning us. First one was 3 degrees less and second 4 degrees lessso we are disappointed. We are real nervous about this. Any opinions on this? I am really worried that is not enough. Dr says ok

gerbo

03-17-2006, 09:53 AM

they have all stretched over time by about 3 cm each. I've adjusted for that difference on the velcro fasteners and tightened them an extra 3 cm from the blue mark.

were you actually advised to adjust yourself for stretching? We weren't, the only thing we were told that the weekly wash would keep them into shape. (machinewash, 30 degrees, delicates, each in their own knotted pillowcase, I am so domesticated!!!! ;) ;) )

gerbo

03-17-2006, 10:00 AM

I would love little panties or shorts with snaps. Can't someone come up with that.

Lisanna uses the currently rather fashionable shortlike underpants, and for toiletting just undo's the crotchstraps and pulls the crotchpart of underwear to the side, seems to work

Of course, you would still need a little shirt with sleeves, as well.

again, lisanna wears it without a vest, which is very comfortable

To all the people who got their braces in Canada, were you given corrective movements to do? Who came up with the idea for corrective movements? Was it the creators of the brace?

we got the brace from the manufacturer directly, and asked about the corrective movement physio, apparantly idea came from spain, i had the impression that it hasn't been properly researched, i.e., there in no study comparing outcome with spinecor alone, to spinecor + specific exercises

So nice to have all of you to talk to.

yeah..... :D :D

Celia

03-17-2006, 10:04 AM

were you actually advised to adjust yourself for stretching? We weren't, the only thing we were told that the weekly wash would keep them into shape. (machinewash, 30 degrees, delicates, each in their own knotted pillowcase, I am so domesticated!!!! ;) ;) )

Gerbo,

I wasn't told to adjust for stretching :eek: BUT since Dr. Coillard wrote down the correct measurements for all four straps, I would assume that the straps should be that length and adjusted accordingly. Cheryl told me that one of her straps had stretched 4.5 cm from the original measurement ! Better safe than sorry is my motto ;)

Laundry day is Saturdays in our household, you're welcome to come by and do the laundry for us :D :D

gerbo

03-17-2006, 10:29 AM

Laundry day is Saturdays in our household, you're welcome to come by and do the laundry for us

get the sledge, sleigh ready to collect me from the airport....., not so keen on fish and raw whalemeat, otherwise i am easy..... :rolleyes: :rolleyes:

Celia

03-18-2006, 03:41 PM

get the sledge, sleigh ready to collect me from the airport....., not so keen on fish and raw whalemeat, otherwise i am easy..... :rolleyes: :rolleyes:

You want the moon and the stars too ? :D :D I'm afraid, you'd have to walk from the airport, as you know our Alpha dog ( Aboombay ) is dead. Hmmm.... you don't like sushi ?

gerbo

03-19-2006, 05:36 AM

:D :D :D

i'll try to stop it now, get on my own nerves sometimes

ps, do like those japanese bars, with food on little dishes going around on a conveyor belt (is that what you call it?), tend to stick yo the save choices, which does not include raw fish....... an experience by the way, made immortal by rowan atkinson in "Jonny English" (a film which I am sure did not make it to the canadien mass market), where his tie got caught in the conveyor belt, with predictable results...... :rolleyes: :rolleyes:

BlueCrystalMan

03-19-2006, 09:34 AM

My son's stretched a bit... called the doctor and he overnighted a shorter band to us... the original was 80 cm... I popped in the new 70 cm and all SEEMS to be well. Dr. D wasn't too concerned.

Mom... relaaax!!! My son was at 24 before fitting, and at 19 after fitting... six weeks later on the initial checkup he was at 16... the brace needs time to do its thing... there are a ton of things that have to happen with the back muscles and the spine... remember... its taken years for the back to get to this point... it won't be undone overnight... think of it this way... the brace is right now STOPPING the progression of the curve without causing any of the mental anguish and physical annoyance that the hard brace would, and is also working at REDUCING the curve... it all takes time.

As for the physical exercises... it is my belief that the muscles in the back need to be built up on the opposite side of the curve to be able to pull it back to as close to normal as possible... before we had him fitted, my son's muscles on the side of the curve were pretty bulky... much more so than the other side, which I feel pulled the spine out of whack... the exercises build up the muscles on the other side to pull the spine the other way...

cherylplinder

03-19-2006, 10:17 AM

Hi Blue Crystal,
I don't know how I missed your post of your great 6 week followup!
That is wonderful! Good to hear from you! I have been wondering what you were up to.

Celia

03-20-2006, 08:33 AM

:D :D :D

i'll try to stop it now, get on my own nerves sometimes

Gerbo,

When will you learn that you can't match wits with me ?????? Just give up ! ;)

BlueCrystalMan

03-20-2006, 01:21 PM

Thanks, Cheryl... I check in now and then as time permits and had some time this weekend to look and see how everyone was doing... I did post those results earlier when they were first received... I was sitting in a quaint little Italian restaurant around the corner from Dr. D's when my wife called with the results and I yelled out loud... HOPING it keeps going the other way, but one thing I'm sure of as the insurance battle rages... there is no way the hard brace would have achieved those results...

Mom37

03-20-2006, 03:17 PM

cherylplinder

03-21-2006, 02:07 PM

Spinecor Moms and Dads,
I posted last Thursday that I had corrected Rachel's bands for stretching. Valerie called me back from Montreal today and said DO NOT DO THAT!

It appears that each band has a correct amount of tension and you will put incorrect tensions on the bands by adjusting for varying amounts of stretching. They will help you over the phone if you have a strap that is too loose and you cannot be seen at that time!

So sorry for a comment that might lead someone to do the wrong thing!

It appears that I should endeavor to use my head only for a hat rack! My reasoning was faulty!

Gerbo, you were absolutely correct!

Celia, you are probably OK since you only tightened each one by the same amount, but please don't use my word for it!

I can't deal with all the guilt I generate with the mistakes I make in caring for my own children!
I would hate to add guilt for someone else's child to that ! :D

Celia

03-21-2006, 02:48 PM

Spinecor Moms and Dads,
I posted last Thursday that I had corrected Rachel's bands for stretching. Valerie called me back from Montreal today and said DO NOT DO THAT!

Celia, you are probably OK since you only tightened each one by the same amount, but please don't use my word for it!

:eek: :eek: :eek: Why am I O.K. ???? I'll phone her right now. So Rachel's strap that was 4.5 cm off "flapping in the breeze" is O.K :confused:

Edit:

I just spoke to Dr. Coillard and was told not to adjust the straps as well. She explained that it's all about corrective movement and that the brace is not a three point pressure system.

cherylplinder

03-21-2006, 03:35 PM

Celia,
I just meant that you probably had not changed the relative tensions of the straps with your adjustment because you adjusted each the same amount. I adjusted each one different amounts. But I wouldn't want the responsibility of telling anyone to make adjustments, and I got to thinking. MY posts might influence someone to do that. I just wanted to clarify.

Rachel's straps are acting very strangely, is all I can say. #3 and #4 were very loose for 2 or 3 weeks . By the end of last week, #3 did not look as loose as it had been looking (gapping loose on her chest.)
#4 was still gapping a good bit on her back.
I measured her yesterday, and I think she has grown an inch since January.
I hope she didn't have that growth spurt during the 2 or 3 weeks her straps were just hanging there.
That might explain why they were not as loose as time passed.
Today, #3 and #4 are still stretched by the same amounts they were last week, I checked. But they did not look as loose on her as they did last Thursday, and they did not look as loose last Thursday as the couple of weeks before. I find that baffling but don't know what to attribute it to (growth, changes in her curves :confused:. )
From looking at her in February, her shoulders were much more even as time passed. I found that very encouraging. Her back didn't hurt her anymore, either.
It stands to reason that if growth occurs with straps loose, undersirable things could happen.
If I have loose straps again, I will call . They told me not to worry about it, but I am no longer comfortable letting it go. I'm sure they wouldn't them to have been as loose as they were. I should have called sooner.
I hope will find that all is well at her appointment in April.

Celia

03-21-2006, 03:54 PM

I just meant that you probably had not changed the relative tensions of the straps with your adjustment because you adjusted each the same amount. I adjusted each one different amounts.

O.K that makes sense.

It stands to reason that if growth occurs with straps loose, undersirable things could happen. If I have loose straps again, I will call . They told me not to worry about it, but I am no longer comfortable letting it go. I'm sure they wouldn't them to have been as loose as they were. I should have called sooner.

If you can't adjust the straps what good will calling do ? Will you go see Dr. Ouellete ? Deirdre has grown by almost two inches since the last followup. I check her back regularly and I don't see anything out of the ordinary happening. Actually, we have a clinic appointment with her local ortho on April 13, so I feel comfortable with that. I'm going to insist that he forgo the x-ray and just measure her with a scoliometer.

cherylplinder

03-21-2006, 04:32 PM

Celia

03-21-2006, 05:40 PM

Celia,
I'm sorry, I guess I didn't make that clear.

She told me what the relative tensions were supposed to be and asked about the current tension of each strap. She then advised me what she thought I should do.

Still scary, as it is a judgement call about relative tension between 3 an 4 especially, but I think better than hanging straps.

I need a drink! :D Want to join me! :D

I know this is a judgement call, but how do you go about assessing what the relative tension should be :D If it's too hard to explain, don't worry..... I assume you did adjust strap #3 and #4.

cherylplinder

03-21-2006, 06:26 PM

I asked Rachel which strap was tighter. I was at a loss to tell. I might have asked at which part of her body do I check. 4 is loose across her lumbar curve. If you used that, you might make a mistake. Specify which area you need to look at.
Hope I did the right thing. I still think Spinecor is the best thing going.
I am not very good at any uncertainty. Life is full of that.
I suppose I am good at uncertainty. I am still happy. I am grateful for every good thing and always think things could be worse.
I really think God is good all the time! Life is full of ups and downs, but HE sustains me through it all. I am certain that the ups and downs would be there anyway. He is the only certainty. I know He loves me and my babies. He may not change my circumstances I'm in, but He helps me through them.
Of that I am certain.
He is true to me. In times where I thought there could be no way, He has made a way. Always

Celia

03-21-2006, 08:12 PM

Cheryl,

You'll get through this, promise. I've been through hell and back and I'm here to tell the tale. :)

gerbo

03-22-2006, 05:11 AM

cheryl, don't get too upset with yourself, you thought you did the best for your child, maybe you were wrong, but, no harm done, at least you checked things out and learned from it all. Its a long journey, and things will happen along the way, in the end, doris day was right; que sera, sera, (what will be, will be in English, not sure about Inuit translation, ;) )

gerbo

(no more philosophy from me neither (for a bit))

Celia

03-22-2006, 08:43 AM

in the end, doris day was right; que sera, sera, (what will be, will be in English, not sure about Inuit translation, ;) )

I believe "que sera, sera" translated to the Inuit language is "gerboisanut, gerboisanut" :D

gerbo

03-22-2006, 09:55 AM

I know when to stop, (as in; right now!!) :D :D :D

gerbo

03-22-2006, 10:19 AM

we actually have only one really tight strap, one semitight strap, and two straps which hardly have a function and are very loose (i think they are nr 1 and 2, only used to anchor the top bit I believe (in our case)

cherylplinder

03-22-2006, 06:40 PM

THanks for the encouragement, guys. Our computer has been down since I posted my breakdown.
You are the best!

Celia

03-28-2006, 07:29 AM

Cheryl,

I was thinking, the 5 week followup is VERY important because that's when adjustments are made to the brace by Dr Rivard/Dr. Coillard. Anyway..... it's a moot point now since it's all behind us. I hope you're feeling better ;)

Gerbo,

You must admit, it was pretty funny :D :D :D

gerbo

03-28-2006, 09:01 AM

we have our 3 months checkup, with an xray, in 3 weeks time, and I am starting to get nervous already as it will be first time we see what kind of longterm effect we might be getting out of this. Sometimes we think it is starting to look better, but then, I don't really dare to look to close, as it makes me nervous doing that.

Last saturday we watched Lisanna dancing in a classical ballet and she danced absolutely beautiful, enough to make us able to look at her without thinking about "the problem" at the same time.

I think I am kind of confident (but insecure at the same time)

Gerbo

PS; yeah, it was quite funny ;) ;)

Celia

03-28-2006, 03:02 PM

Last saturday we watched Lisanna dancing in a classical ballet and she danced absolutely beautiful, enough to make us able to look at her without thinking about "the problem" at the same time.

That sounds so lovely ! When I look at Deirdre, I don't even think about her scoliosis - I can't even see it :) :) :)

In case anyone is wondering what happened to Spring...it arrived and it's in my garden :p Here are a few glimpses of Spring in Canada:

http://i41.photobucket.com/albums/e251/sealy25/Picture002.jpg
http://i41.photobucket.com/albums/e251/sealy25/Picture001.jpg
http://i41.photobucket.com/albums/e251/sealy25/Picture.jpg

cherylplinder

03-28-2006, 11:17 PM

Those are lovely! What are they?

Celia

03-29-2006, 07:52 AM

Thanks Cheryl :)

They are Spring bulbs.....the white ones are called "snow drops" because they're very hardy and bloom even with snow on top of their heads. The purple/red ones are crocuses and they're almost florescent in colour. It's no wonder Spring is my favorite time of year...

cyprusmom

04-02-2006, 01:47 PM

Celia saw my post on the surgery thread asking info about dr. Masso of the Shriners hospital who believes my daughter should have surgery right now. Thank you Celia for thinking of us. I was indeed shattered although always knew her high risk she is in. Just couldn't find the strength to post our news on our group...I am not ready to leave the Spinecor group yet and at the same time I need to find out more about surgery.
What happened with the Shriners doctor is that we had a second telemed conference with him last week and he had new x-rays and MRI results in his hands. He found her curves in the 50s(!!!!) and needing immediate surgery. Did not recommend rigid bracing. The human error in the reading of the x-rays makes me wonder though: Her initial x-rays in October, were read as 32degrees by the radiologist who took them and then as 40 by the orthotist in Greece. The new ones from 2 weeks ago were read as 50+ by dr. Masso and as... 25-30 by a local orthopedic.....My question is whether there has been a progression of her curves or if they have been stable. This we will I hope, find out in 2 weeks when we go to the spinecor orthotist and orthopedic in Greece. I also got a reply from the Spinecor doctors in Canada who saw my daughters photos and x-rays and said that it had been fitted adequately. Taking one day at a time now and trying to stay positive.
Anyone having a follow-up coming up?
I need some good news .....
Pola

Celia

04-03-2006, 09:16 AM

What happened with the Shriners doctor is that we had a second telemed conference with him last week and he had new x-rays and MRI results in his hands. He found her curves in the 50s(!!!!) and needing immediate surgery. Did not recommend rigid bracing. The human error in the reading of the x-rays makes me wonder though: Her initial x-rays in October, were read as 32degrees by the radiologist who took them and then as 40 by the orthotist in Greece. The new ones from 2 weeks ago were read as 50+ by dr. Masso and as... 25-30 by a local orthopedic.....My question is whether there has been a progression of her curves or if they have been stable. This we will I hope, find out in 2 weeks when we go to the spinecor orthotist and orthopedic in Greece. I also got a reply from the Spinecor doctors in Canada who saw my daughters photos and x-rays and said that it had been fitted adequately. Taking one day at a time now and trying to stay positive.
Anyone having a follow-up coming up?
I need some good news .....
Pola

Good news is.....Spring is here ! :D Sorry, I know this is not what you want to hear. I have never heard/read of a discrepancy being so large ! Do you have the x-rays with you ? Does the most recent x-ray "look" worse ? Maybe the doctors are using different vertebrae as the starting point to measure the Cobb ? I have a question....doesn't the Spinecor system use a computer program to measure the Cobb ?

gerbo

04-03-2006, 09:27 AM

Pola, what a difficult situation for you and your daughter and so sad to hear that for "one of us" things are not going right. We have our 3 months review in 2.5 weeks, with an x-ray and I so much hope to have some positive news (for merely selfish reasons).

What would I do in your situation? That large variety i measurements seems so odd. I assume that the 50 degree is without any brace? Was that done in cyprus, with the x-rays digitally send over to the USA.?? How can one person read it at 25-30 and somebody else at 50 degree?? I find that so hard to believe. Will you get new xrays done in Greece? Or are you taking the new ones over to be looked at by your greec orthopaedic surgeon?

Two questions to ask I think 1) Is that 50 degree a realistic measurement, would it be worthwhile to ask dr rivard now you've got a link with him anyway. What would he do in this situation? (he must know the limitations of the spinecor) and it be interested to know what he would do at this stage

2) would it be "safe" to wait a further 3 months with further x rays at the end to see whether the picture is consistebtly progressive?

The eventual outcome (surgery) might not ne any different, but it could change the timing, what must be important I would imagine.

Whatever Pola, in a few years time, you'll be sitting on your patio, between your whitewashed walls, in the sun, looking back on this time in your life as being absolute hell, but then looking at your daughter, having had surgery or not, being absolutely happy with who and what she is, not having any restrictions (and no nasty brace to wear) and you'll be asking yourself; why did i ever get so worked up. Things will be ok in the end, whatever path you'll have to take

best wishes

gerbo

AILEA

04-03-2006, 10:18 AM

Pola,

Sorry to hear that things are not going OK; I´ve thinking about you this last weeks,but I didn´t realized you were posting on the surgery thread...

I can understand that there is a margen of error, but the differences you are talking about are too large (from 25-30 to 50, measured in the same x-rays?)
I suppose you will get new x-rays done , and at least you could have "the real measurements" you need to make a decision. As Gerbo said, things will be oK in the end.

Best wishes

Ailea

MATJESNIC

04-03-2006, 10:30 AM

Pola,

It is unfortunate that you are getting mixed messages about the x-rays. That is one reason why you are so confused about what to do. As soon as you know what the "magic number" is, you can make an informed decision. You and Anastasia are in my thoughts and prayers.

Gerbo, your post brought tears to my eyes. You are right. Hopefully, what we are all going through will be temporary. There will come a point when we are thinking of things other than scoli, curves, braces, surgery.

As much as we don't want surgery for our girls, we are fortunate that we have an option of surgery for our girls.

Melissa

cherylplinder

04-03-2006, 10:43 AM

Pola,
I also found the difference in x-ray measurement unacceptable. There should only be a 5 degree margin of error.
I am so glad Gerbo thought of asking Dr. Rivard about the new x-ray.He's right, since you already have that link, I would use it. I pondered for a while and didn't think of the obvious. It would be a relief to know what the actual measurements are. You just want to know where you stand.
Holding your hand from afar........
Cheryl

pat

04-03-2006, 04:37 PM

cherylplinder

04-03-2006, 07:34 PM

Pat,
Wahoooooooooooo! Let's have a party!
Spinecor may not work for Rachel, but I rejoice with every excellent outcome that we have. They feel like miracles to me. I believe that they are. To me, 20 to 0 is a miracle. Miracles bless us all!!!!!!
Your good news fill my heart with such joy! I am so happy for you!
God Bless. You deserve it!
Warm Hugs,
Cheryl

gerbo

04-04-2006, 02:25 AM

Hello! We had our 5-month check up in Spinecor Brace last week, everything looked great, the brace is still holding her curve at a "1." Actually, I think I posted it was a "0," back in November. She's also grown some in height, so that's encouraging. Pat

Pat, please remind me (i@ve got a terrible memory), how old is your daughter, curve a t what level, largest measurement before spinecor and initial correction in spinecor and measurements along the way?

what a wonderful situation to be in though, congratulations!!

gerbo

gerbo

04-04-2006, 02:30 AM

doesn't the Spinecor system use a computer program to measure the Cobb

i think that is just an additional feature of having xrays recorded and stored digitally. I saw them do it. The clinician still has to choose which vertebra to measure from and where and how exactly draw the line (on the computerscreen), but having done that the computer will calculate the angle, rather than having to use some geometric device. So, still scope there for interperson variability, but maybe slightly less.

MATJESNIC

04-04-2006, 07:11 AM

Pat,
That is great news!!! Please give us the details of where she was before the brace.

Melissa

Celia

04-04-2006, 08:29 AM

Hello! We had our 5-month check up in Spinecor Brace last week, everything looked great, the brace is still holding her curve at a "1." Actually, I think I posted it was a "0," back in November. She's also grown some in height, so that's encouraging. Pat

Pat, absolutely the BEST NEWS !!!! Actually that's a 4 month followup :D It's great to hear that she's growing and the curve is holding at 0 - 1 degree!!!!!

Celia

04-04-2006, 08:30 AM

i think that is just an additional feature of having xrays recorded and stored digitally. I saw them do it. The clinician still has to choose which vertebra to measure from and where and how exactly draw the line (on the computerscreen), but having done that the computer will calculate the angle, rather than having to use some geometric device. So, still scope there for interperson variability, but maybe slightly less.

Oh... that makes sense ! Thanks Gerbo. :)

sportsdoc

04-04-2006, 11:50 AM

just so that there isn't any confusion.. spinecor's software is just for recording findings and calculating what type of scoliosis one has..
even if x-ray was done digitally, it has to be measured on the computer that it was stored in and the number has to be transferred to spinecor system.

as for x-ray measurement discrepency, when you have 10 or 20 degree's most likely they measured it on different vertebra...that's the problem when you have multiple people read the x-ray...it's a subjective thing and one needs to find the level most slanted during cobb angle measurement and it can be different from person to person...

Digital doesn't necessarily increase the accuracy either...the size of the dots they use during mensuration are kinda too big...some ppl decide to center the dot on the edge of the endplate, some just inside, some just outside..you get the gist.... if one's doing pencil mensuration, even sharpness of the pencil can give a bit of discrepency..

the time lapsed x-rays are also problematic because there's absolutely no way of doing idential shots...even though one stands in exact same place with exact same posture, the placement of the tube can be a bit off from last and patient may feel a bit mroe fatigued and could slump a bit more..etc...

x-ray is 2-D shadow of 3-d object...any discrepency above will give different outcome...

I guess only accurate way of doing this would be 3-d computer tomography of the x-ray and measuring it with software without human factors involved...which I don't even know if exists or even if it does, the cost will be too prohibitive..

Having said that, having x-ray taken from same machine from same person who uses same standards doing mensuration on every film would give reasonably reliable measurements....the key word being reasonable..

gerbo

04-04-2006, 12:21 PM

cheers, thanks for additional info

gerbo

cyprusmom

04-04-2006, 01:12 PM

I guess only accurate way of doing this would be 3-d computer tomography of the x-ray and measuring it with software without human factors involved...which I don't even know if exists or even if it does, the cost will be too prohibitive..

Having said that, having x-ray taken from same machine from same person who uses same standards doing mensuration on every film would give reasonably reliable measurements....the key word being reasonable..

Wouldn't an MRI do just that and give an accurate reading? My daughter had one but the report didn't give numbers.

It's true that all our x-rays were taken on 3 different machines, different people and different countries!!! :eek:
Pola

cyprusmom

04-04-2006, 02:07 PM

What would I do in your situation? That large variety i measurements seems so odd. I assume that the 50 degree is without any brace? Was that done in cyprus, with the x-rays digitally send over to the USA.?? How can one person read it at 25-30 and somebody else at 50 degree?? I find that so hard to believe. Will you get new xrays done in Greece? Or are you taking the new ones over to be looked at by your greec orthopaedic surgeon?

gerbo

Yes those results left me and my husband wondering ...the latest x-rays were taken in Cyprus and sent to the US by this special x-ray/fax machine which the Shriners provided the local center with. Dr. Masso just held them up and said to me on camera: What I see here is a curve of 50 degrees and only getting worse. I was left speechless, so asking him whether that was the one in or out of brace did not occur to me. I will ofcourse take everything with me MRI too to Greece and see what the spinecor docs say. I believe we were due for new ones anyway.
Thanks again Gerbo for all the right words you always have.... :) The picture you painted of the future is good. The road there difficult and frustrating...just keeping my head up,
Pola

Celia

04-04-2006, 02:51 PM

Thanks Sportsdoc ! It's so nice to have a doc in the house :p

pat

04-04-2006, 04:27 PM

Hello! Thanks for all your encouragement/well wishes! She was a 21/17 when put in her brace November 1st, brought curve down to a 7 (in brace), one month check-up down to a zero, and one week shy of five months, her curve was a 1. Remember she was braced very early with such low #'s, because her sister wore the hard brace faithfully and is now 15 month post-op, which was a very successful surgery. pat

Celia

04-04-2006, 06:06 PM

Pat,

Remember Deirdre's 5 week followup was the same day as your husband and daughter ? I think it was Dec 8, if I'm not mistaken :confused: Anyway....it's not a big deal, it's just that our five month followup isn't due for another month and I'm actually thinking of having it rescheduled for early July !! Wait a minute.....do they count the 5 month followup from the original fitting ????? As you can see, I'm getting a little worried here :eek:

I'm soooo glad things are working out well for your little girl

MATJESNIC

04-04-2006, 06:58 PM

Pat,
I am thrilled that your daughter is doing so well. in her Spinecor. I'm also glad to see there is a "light at the end of the tunnel" for those who have the surgery. Your older daughter is also doing well. That's wonderful news. Did you ever look into the bone-on-bone surgery performed by Robert W. Gaines in Columbia, Missouri. It sounds great. But why hasn't it caught on?

Melissa

Celia

04-05-2006, 09:29 AM

I think there are followups this week and next ? Gerbo this week and Cheryl next week ? Keeping fingers and toes crossed for good results and good news !!!! :D

hugs,

celia

cherylplinder

04-05-2006, 01:59 PM

What is bone-on-bone surgery?
I couldn't get it on google.

gerbo

04-05-2006, 02:27 PM

I think there are followups this week and next ? Gerbo this week and Cheryl next week ? Keeping fingers and toes crossed for good results and good news !!!! :D

hugs,

celia

two weeks from today....... :( :mad: :cool: :D :confused: (mixed feelings)

LATigner

04-05-2006, 03:31 PM

I just wanted to second what Gerbo said a few posts ago.

Gerbo said "Whatever Pola, in a few years time, you'll be sitting on your patio, between your whitewashed walls, in the sun, looking back on this time in your life as being absolute hell, but then looking at your daughter, having had surgery or not, being absolutely happy with who and what she is, not having any restrictions (and no nasty brace to wear) and you'll be asking yourself; why did i ever get so worked up. Things will be ok in the end, whatever path you'll have to take."

We are looking at a check-up next week for our daughter who is an on again off again 15 1/2 year old Spinecor wearer. When she wears the brace a 10- degee correction, when she doesn't curves go back to the high 30's and low 40's. She puts so much energy into fooling us and herself at times its almost comical. But then the reality of the situation rears its ugly head. But I really like what Gerbo said because in the past 3 years we've been where Pola is and the prospect of surgery is so frightening. If Anna's x-rays next week don't show curve reduction, we'll be looking at applying to Shriner's for a surgical evaluation. However, at least we have the surgical option for which I'm thankful because we know our kids will get treatment.

We are excited though because her local chiro who's been treating her for the past 3 years is bringing Spinecor to his office so Andrew Wells (the head of Spinecor) will be coming here to finish the training and brace 3 patients. Anna will get to see Andrew for her follow-up visit so if there's any tweaking of the brace to be done, questions about strap stretching, etc. we'll be able to ask him.

This forum is a great place for encouragement and info - thanks to all of you.
We will all get through this with a little help from our friends.
:) :)

Celia

04-11-2006, 10:22 AM

We are excited though because her local chiro who's been treating her for the past 3 years is bringing Spinecor to his office so Andrew Wells (the head of Spinecor) will be coming here to finish the training and brace 3 patients. Anna will get to see Andrew for her follow-up visit so if there's any tweaking of the brace to be done, questions about strap stretching, etc. we'll be able to ask him.:) :)

Is that the same Mr. Mills that Gerbo sees in England ? On another note, our followup is next month - July was not possible.

gerbo

04-11-2006, 10:26 AM

yeah, it will be Andrew Mills, the orthotist who heads Spinecor,, he's travelling to the states all the time trying to ensure that all these chiropracters are using the spinecor properly

cyprusmom

04-14-2006, 12:21 PM

Melissa,
please empty your private messages box, it will not accept the one I am sending you :) ......Pola

MATJESNIC

04-14-2006, 01:10 PM

Hi Everyone,
I know some of you have tried to send me private messages. I just deleted some old ones. Sorry about that.
We are going to N.Y. to our Spinecor Doc on Tuesday. We actually talked to 2 orthos at Shriner's in Phila because there was a mix-up. So we had 2 appts. Even though Nicole's main curve is holding at 41 after such a crucial growing time, neither ortho would credit or recommend the Spinecor brace.
We are continuing with the Spinecor because we believe it is still the best option for Nicole.
Does anyone know what can be done for a thoracic curve of 39. Other than a hard brace. Nicole now has two curves. The other is a thoracic-lumbar of 41. The next 6 months are very important. She has to make it through without increasing. Then most of her growing should be done.
Of course, we wish the Spinecor would have brought her curve down. The ortho uses a different instrument to measure the x-rays. So when Dr. D in N.Y. said she was at a 32, they measured it a 36. So basically, she went up from 36 to 41 in 4 months. Of course there is always room for error. But I would rather the error in the other direction.

Melissa

MATJESNIC

04-14-2006, 02:05 PM

I forgot to mention that I took your advice, Gerbo, and threw the entire brace in the washing machine (wrapped in a pillow case). I threw the top in the dryer for a short time and let the bottom air dry. Of course, this was right before her x-rays, so she wasn't going to wear it for 24 hours.
The brace survived. So I will probably continue to do it like this. Soon the weather will be hot enough to hang it outside.

Melissa

Celia

04-14-2006, 10:38 PM

Melissa,

I'm not sure if I should be jumping for joy or not ? I know you wanted to see some improvement but if she has grown three inches within the last 6 months and her curve is stable (?) we couldn't ask for any better, right ? Let us know how the appointment goes on Tuesday....

Crazy question.....has anyone had trouble with the snaps coming undone ?? Strap # 1 is not holding as of today and as you know it's a long weekend and I doubt anyone will be in the office - I left a message with Dr. Rivard nevertheless. I'm kicking myself for not having spare straps on hand, what a horrible situation to be in....

Cheryl,

How did the appointment go ?

Mom37

04-14-2006, 11:14 PM

Upon talking to LATigner, she helped make it possible to go to California and see Andrew Mills, the orthotist, a head of Spinecor from England today. My 12 year old daughter went down 10 degrees from original curve to a 28 with no compensating curve. I quote Mr. Mills stating a positve "significant change" to a "unique" European curve. Very positive result we wanted to share. Thanks to Lori, for all your support in every way possible! Mr. Mills commented his agreeing with all Dr. D in NY did before we even Xrayed today.

cyprusmom

04-15-2006, 11:08 AM

.
Does anyone know what can be done for a thoracic curve of 39. Other than a hard brace. Nicole now has two curves. The other is a thoracic-lumbar of 41. The next 6 months are very important. She has to make it through without increasing. Then most of her growing should be done.
Of course, we wish the Spinecor would have brought her curve down. The ortho uses a different instrument to measure the x-rays. So when Dr. D in N.Y. said she was at a 32, they measured it a 36. So basically, she went up from 36 to 41 in 4 months. Of course there is always room for error. But I would rather the error in the other direction.

Melissa

I would think that you will get a re-adjustement on Tuesday so that the straps hold the thoracic curve more. Maybe a new type of exercise? Let us know what the Spinecor docs say. Wasn't Nicole found with a double curve from the beginning? If so what was the degrees then?
I hope she stays stable now that you know her growth is about to slow down. It will be a tough 6 months but all worth it.
Good luck :)
Pola

MATJESNIC

04-15-2006, 11:12 AM

Celia,
We are pleased that her curve held during that crucial 6 month growth spurt. However, the compensatory curve in her thoracic has gone up 10 degrees in 4 months and is now considered a real curve. The ortho at Shriner's said there is nothing that can be done for that curve because they would not recommend a brace ring and Nicole wouldn't wear it anyway. So she basically has 2 40-degree curves. We have no control of the thoracic.
That is very frustrating.

Melissa

MATJESNIC

04-15-2006, 11:16 AM

Pola,
Nicole never had a double curve. We just heard of the top one in Dec when Dr. Deutchman mentioned that it went up. When she had her initial diagnosis with a top ortho, only one curve was mentioned. In Dec, her top was at a 29 and now it is at a 39. She now has an S curve.

Pola, the school nurse recommended a book for Nicole called Growing Up With Scoliosis by Michelle Spray. I bought it from Amazon. Nicole has been reading it. This true story takes you through the teen years of Michelle, all the way past her surgery. Perhaps Anastasia would like to read it.

Melissa

cyprusmom

04-15-2006, 11:17 AM

[QUOTE=Celia Vogel]

Crazy question.....has anyone had trouble with the snaps coming undone ?? Strap # 1 is not holding as of today and as you know it's a long weekend and I doubt anyone will be in the office - I left a message with Dr. Rivard nevertheless. I'm kicking myself for not having spare straps on hand, what a horrible situation to be in....

QUOTE]

This is a frustrating situation....I know we had one come off and it was replaced immediately cause it was indeed faulty. Yours might be worn out.

cyprusmom

04-15-2006, 11:25 AM

Pola, the school nurse recommended a book for Nicole called Growing Up With Scoliosis by Michelle Spray. I bought it from Amazon. Nicole has been reading it. This true story takes you through the teen years of Michelle, all the way past her surgery. Perhaps Anastasia would like to read it.

Melissa[/QUOTE]

Thanks for he recommendation Melissa, I saw that book on Amazon a long time ago, I wasn't sure back then if I should get it for her...you know, having secret hopes that scoliosis would not be in our life for long :( The time is right now and she is a bookworm so thanks for reminding me of it.
Pola

Celia

04-15-2006, 11:26 AM

LATigner

04-15-2006, 05:49 PM

My daughter had her check-up on Thursday with Dr. Gorrie and Andrew Mills. Andrew was there to train Dr.Gorrie as he is now doing Spinecor in his Tustin office. Very nice not to have to drive 2-3 hours! Anways, my husband & I were quite impressed with Mr. Mills and his calm, very educated approach to reading the x-rays, the brace, etc. He told us some things we did not know such as that she has a true double curve that is very well balanced - both in the mid to upper 40's. Because she has no pain and her posture is very good he said that he would not recommend chasing down a surgeon at this point. He said if we saw orthopedic surgeons here in the US they would be more likely recommend surgey for a curve her size than doctors in England and Europe. But because of the double curve any fusion would be really long and very limiting movement wise.

She has made some progress in the SpineCor brace but he said because of her age (almost 16), risser sign and physical maturity we would probably not be looking at a tremendous amount of correction but are shooting for stabilization of the curve. He declined to x-ray her again saying that in girls her age the changes come slowly and not over just 30 days of more time in the brace and it was not worth the x-ray exposure to take another one now. He adjusted her brace to fit a little more comfortably and measured with the scoliometer. There is about 5 degrees correction just between being in the brace and out and quite a bit of correction in her rotation. He was amazed that all of Dr.Gorries patients (he saw 4 of them) are extremely flexible and their curves are not rigid (even the two older ones with curves in the high 60's). This is apparently due to the chiropractic care and physical therapy that Anna has done since diagnosed 3 years ago. Because of this she may actually get more correction than he expects of a person her age. He also explained to us that it's not just the curve degrees that are important but where the curve is and the type of curve, apparently a single curve in the 30's might be operated on but a double curve in the 40's might be ok if it is balanced and can be stabilized. So a very informative visit. Of course, I would have liked to have an x-ray that showed 50% improvement (especially since during the last 6 weeks she's actually worn the brace almost the recommended hours per day) but we probably won't be x-raying for another couple of months and 50% correction is more than likely only my stress- induced day dream.

To all of you who have younger children and kids with lesser curves - check out Spinecor if you haven't already!

Celia

04-18-2006, 08:22 AM

Celia

04-18-2006, 08:24 AM

Celia

04-18-2006, 08:27 AM

she has a true double curve that is very well balanced - both in the mid to upper 40's. Because she has no pain and her posture is very good he said that he would not recommend chasing down a surgeon at this point. He said if we saw orthopedic surgeons here in the US they would be more likely recommend surgey for a curve her size than doctors in England and Europe. But because of the double curve any fusion would be really long and very limiting movement wise.

She has made some progress in the SpineCor brace but he said because of her age (almost 16), risser sign and physical maturity we would probably not be looking at a tremendous amount of correction but are shooting for stabilization of the curve.

Lori,

What a difficult situation to be in.... :(

LATigner

04-18-2006, 01:45 PM

Thanks Celia - I do have hope that her curve will still go down because of her flexibility and if it stabilizes she should be ok for many years. Fortunately, my daughter is very strong-minded and not willing to let scoliosis get in the way of living her life to the fullest. It is hard to accept as a parent that there are things we can't fix for our kids, things they have to suffer through and learn to live with. We watched our friends daughter go through treatment after treatment for a brain tumor from ages 6 to 12 - and then lose the battle so every day I am thankful that it is scoliosis we are dealing with and not cancer. Thanks for the support and encouragement. Lori :)

BZebra

04-19-2006, 06:44 PM

The new ones from 2 weeks ago were read as 50+ by dr. Masso and as... 25-30 by a local orthopedic.....
Why don't you just measure it yourself? http://skoliose-info-forum.de/skoliosimetrie.php It's so easy, you just need a set square or if it is a digitil one you could even upload it somewhere and we can do it for you.

MATJESNIC

04-19-2006, 06:55 PM

Karickter,
We had to appeal our insurance company because they only wanted to pay us a couple of hundred dollars for the Spinecor. They finally paid all but $900. We are trying to get them to pay us as in-network, but so far they have declined. We are going to appeal that decision.

We have definitely spent a lot of money on the brace, x-rays, office visits, new bands for the brace, etc. Is this all going to pay off for our daughter in the end? That is the $64,000 question.

Melissa

Celia

04-20-2006, 07:17 AM

... as you know it is very expensive - so my quest now is to find a hospital affiliation or Doctor that uses the spinecor brace - (I've spoken with Dr. D in NY - this is where I will eventually wind up if I can't get my insurance to cover it) credit card debt here I come ;) (they were open to the idea) but said I would have to find an "in plan" facility or doctor that uses it - I am in NJ 25 minutes from NYC - so question does anyone know of a hospital affiliation in the NY/NJ/PA area that uses it? :)

Hi,

There is a Shriner Hospital in Erie Pennsylvania that prescribes the Spinecor brace and I don't know if you are aware of this, but ALL services (including braces) provided by Shriner's Hospital are free of charge regardless of income level or insurance. If you can get a local Shriner Office to sponsor you, they will also pay for your travel expenses/lodging to get to the Shriner Hospital in Erie.

I read your post on Spinekids and I know exactly how you feel about putting your child in a rigid brace for so many more years - my daughter is 5 years old and I knew I couldn't go that route.

Snoopy

04-20-2006, 09:26 AM

I went to the Shriner's website for you and here's the phone number for Erie: 814-875-8700. Toll free number is: 1-800-237-5055. The toll free number is a general number for Shriner's, so maybe call that first to get some of your questions answered. Good luck.

Mary Lou

BlueCrystalMan

04-20-2006, 09:56 AM

Great posts all. First, I am STILL battling the insurance company. Of my total $6,500 that we've laid out so far, only $1,668 has been covered. Why? They claim we went out of network. My appeal was denied for the same reason. I am now in the process of typing up a civil action against the insurance company because there is no IN-NETWORK provider. If they could have provided one, we would have gone to one. We are in PA, but NYC is only an hour and a half from us... while Shriners is close to six hours.

Had a follow-up visit with Dr. D earlier this week. VERY IMPORTANT that if you see him, make your appointment close to the first one of the day, if not the first... this is the second time that our afternoon appointment got started two hours late because he runs behind. Understandable, but frustrating.

On that visit, my son's curves have shifted. More frustration for me. First, we were NEVER told that it is important that the brace be washed weekly, as it puts the spring back into the bands. "Its in the manual," they said. Who has the time to read that? I write software for a living and don't even read THOSE manuals. Anyway, after washing, it fit GREAT again, and his shoulders are now close to level again. Can't help but feeling that we lost two months in this thing because it lost it's elasticity.

Next, monitor the exercises that your child does... Nick was doing them wrong after a while... not sure where that transition happened, but maybe it was because we were rushed initially. We were only given ONE exercise that first day, which he has done religiously, but was supposed to receive FIVE.

So this trip was filled with frustration, and now I get to battle the insurance company some more. NOT fun. But, the brace does appear to do it's job when instructions are followed. :(

AILEA

04-20-2006, 10:30 AM

At least we have our in-spinecor x-rays done, and althought I´m not a doctor I can see, that now this brace it´s not helping my daughter´s curves. At this point we must make the difficult decision to return to a rigid brace. I can´t say it´s have been a big surprise, because since the last few months i´ve been suspecting that those bands were not doing what they were supposed to do. I allways distrust of everything relating doctors and my daughter´s scoliosis: Too many doctors, too many different theorys, a huge ignorance in relation to the treatment, causes, prognosis...
We tried spinecor, thinking it was the best option (nearly the only one), but being allways alert, and now with the x-rays in my hand, I see it´s not an option for us.
I wish you all will have good results with your braces;

Ailea

Celia

04-20-2006, 10:45 AM

Ailea,

This is really sad news! How much did she progress? What did the doctors say?

BlueCrystalman,

Did your son progress as well?

MATJESNIC

04-20-2006, 11:26 AM

Our Spinecor bands were completely shot and had to be replaced. I feel as though we lost time as well because they have been stretched out for at least a month. Don't feel bad about the lack of washing contributing to that. I know someone who is doing amazingly well in her spinecor and her brace is not washed often. I think the bands just give out after a while. I wonder if it would be wise to go more often to see if the bands are still good.
I understand everyone's frustration.

We don't know ourselves whether Spinecor is working or will continue to work for Nicole.

I have to send in my appeal to our insurance because they denied our in-network claim.

Melissa

MATJESNIC

04-20-2006, 11:32 AM

Karickter,
I just sent you a private message about Shriner's before I read that everyone already told you to try Shriner's. The other option for your daughter could be stapling done at the Shriner's in Phila. It's all free and it is usually done on children who still have a lot of growth. Go on Spinekids and read all about it.

Melissa

Celia

04-20-2006, 12:38 PM

Our Spinecor bands were completely shot and had to be replaced. I feel as though we lost time as well because they have been stretched out for at least a month. Don't feel bad about the lack of washing contributing to that. I know someone who is doing amazingly well in her spinecor and her brace is not washed often. I think the bands just give out after a while.

Well....when we first got the spinecor, hubby told me NEVER to put the elastic bands in the dryer - he compared it to the elastic bands on underwear that eventually give out with washing/drying. This is why I hand wash and let everything dry "au naturel" ;)

MATJESNIC

04-20-2006, 01:37 PM

The Spinecor brace is available in Erie. The stapling is done at the Shriner's in Phila.

Dr. Deutchman told me to put the top in the dryer for a few minutes.

Melissa

Celia

04-20-2006, 03:42 PM

Hi,

From my understanding, you can phone Shriner's Erie directly and do a phone application - that really speeds things up. :)

Melissa,

One of the assistants in Montreal also told me that I could put the whole thing in the dryer - I just have my own reservations about it. I worry about minute things like what kind of reaction the detergent will have on the elastic bands. Our followup is next month so we'll see.....

gerbo

04-21-2006, 03:30 AM

One of the assistants in Montreal also told me that I could put the whole thing in the dryer - I just have my own reservations about it. I worry about minute things like what kind of reaction the detergent will have on the elastic bands.

we have been told by the manufacturer (mr mills) that it is essential that it is washed weekly for the spinecor to keep its elasticity, he was ok us using a tumbledryer, but i haven't dared doing that and tend to dry it over a radiator

gerbo

AILEA

04-21-2006, 04:47 AM

W´ve not seen our spinecor doc yet, but I think there´s nothing to say about it, if the in brace x´rays are worse than the out of brace ones.
During this months of treatment the spinecor measurements has been indicated , that my daughter has improved her posture, the rotations, ok that´s true, also her head is now well-balanced with the hips, and it´s a good thing, but it doesn´t hold her mayor curve, and it´s nearly 40º, so a delicate matter.
Ailea

MATJESNIC

04-21-2006, 05:52 AM

I have never heard of in-brace x-rays being worse. Is it possible that there is a better way to wear the brace. I would definitely put in a call to Dr. Rivard. Your daughter has the same curve degree as mine, except we now have 2 curves with that degree. Is your daughter almost done growing?

Melissa

Celia

04-21-2006, 06:30 AM

we have been told by the manufacturer (mr mills) that it is essential that it is washed weekly for the spinecor to keep its elasticity, he was ok us using a tumbledryer, but i haven't dared doing that and tend to dry it over a radiator

gerbo

I don't know about anybody else, but our dryer destroys clothes :D There is no way I'm putting a $3,0000 brace in the dryer. It seems to defy logic that washing the elastic bands every week and subjecting them to extreme temperatures in the dryer will help keep the elasticity. It's obvious from our little group that the elastic bands are being worn out very quickly. :rolleyes:
I also think that laundry detergent can wreck havoc on the elastic bands - however I haven't done a study on this ;)

Celia

04-21-2006, 11:22 AM

BlueCrystalMan/Gerbo,

I looked through the Spinecor Patient Manual and nowhere does it say that the elastic bands have to be washed every week. Here is the *only* excerpt on maintenance:

"The bolero with the attached elastic bands, the crotch bands and comfort-pieces are washable in soapy luke-warm water by hand or by machine using the delicate cycle and can tolerate a few minutes in the dryer (moderate heat). Do not use bleach......Thigh bands should be washed by hand and laid flat to dry. Do not use a fabric softener. You can clean the pelvic base with a cloth soaked in soapy water, rinse it off with a damp cloth and air dry. Never soak the pelvic base....."

MATJESNIC

04-21-2006, 12:51 PM

I believe that only the Shriner's in Erie has the Spinecor. Just go on the Spinecor site and it will list all of the offices in this country. If Shriner's in Boston is not listed, it is not a provider.

Melissa

Celia

04-21-2006, 03:17 PM

Melissa,

Remember you mentioned in a previous post about how loose the crotch bands were and you weren't sure what their function was ? Well....when I was looking through the Patient Manual this morning, I found this little tid bit:

"The crotch bands.....as you must have already guessed...are fixed on the snaps located on the anterior piece of the pelvic base.... These straps must be tight enough without being uncomfortable. Remember that the crotch and thigh bands act as a support and anchoring point for the corrective part. You must make sure that the pelvic base is kept in place as solidly as possible without being uncomfortable. Otherwise, it is useless to continue because it will not stay adequately in place because of the tension exerted by the corrective elastic bands."

Sorry if I bored anyone else reading this... :D

MATJESNIC

04-21-2006, 05:52 PM

Thanks, Celia
We actually got new crotch snaps that Dr. D. put on for us. They are making them with a different material now. We also bought new thigh bands because Nicole's were so sad looking even though I try to keep them clean. Nicole always hated putting on the brace because of the thigh bands, so I thought if it would make wearing the brace more pleasant, why not?

Let's spend more money!!! Got her 2 new bodysuits because she will only wear the Spinecor.

Melissa

Celia

04-22-2006, 05:27 AM

Just between us..... I have only washed the elastic bands three times since getting the brace in November. The bolero and other pieces can be washed separately and kept clean. The elastic bands on our brace are in excellent shape and have not lost their elasticity. Reading all the horror stories about how you're all losing correction with the brace, I'm actually reluctant to wash the elastic bands ever again :p :D

sportsdoc

04-22-2006, 11:00 AM

Hello...I just wanted to briefly ask a favor from all of you...
I am in the process of developing our web site for spinecor fitting center..
Initially it was going to be just clinic info..but looks like spinecor lacks much exposure...so I've decided to reorganize info on spinecor web site to more easier to navigate site...another cavit regarding Spinecor is that it is mostly up to the parents to decide whether it is right for them and it is nerve racking to make such a big decision...I myself was helped immensely from your stories on this forum...

I have a "my story" section in the forum for those who have used spinecor to share their stories...I would appreciate very much if you could add your own stories...only rule is that it has to be 100% true without any embellishment...
It'll be a big help for those parents who are deciding to whether to use spinecor or not..

you can go under forum menu at www.scolibrace.com
it is still under development so it looks messy now...lol..
also..once it's completed I'll be adding all the relevant studies on spinecor and scoliosis as new ones become available..so check the forum research sections regularly if you'd like to keep up with the latest..

thank you...

gerbo

04-22-2006, 11:35 AM

The elastic bands on our brace are in excellent shape and have not lost their elasticity. Reading all the horror stories about how you're all losing correction with the brace, I'm actually reluctant to wash the elastic bands ever again :p :D

still, official insructions are...... etc, also, lisanna knows when we have washed everything, as it all feels much tighter, which i think must be good

gerbo

04-22-2006, 11:39 AM

just as an update; lisanna had her 3 months review last wednesday and we are reasonably pleased to say that in the brace the curve has maintained itself at 17 degree, (in december she was 26 degree without brace and 16 degree in the brace)

So, no further improvment (which I was slightly disappointed with), but nothing worse neither. :) :)

Celia

04-22-2006, 12:30 PM

still, official insructions are...... etc,

Hmmmmm....that's funny because I wasn't given instructions to wash the elastic bands every week and there is no mention of this in the OFFICIAL Patient's Manual :D I do handwash the bolero and other pieces on a regular basis but do what ever you feel is right, don't let me sway you. It seems odd that many of the parents in this group are experiencing problems with the elastic bands and it appears that these bands are being washed frequently. These bands are central to controlling the curves. If the bands wear out due to frequent washing etc. the curve(s) will progress, there is no question about that! These recommendations seem counterproductive to the whole thing.....

cloggerx3

04-22-2006, 09:20 PM

WHOAAAA>
ahhh. well i havent posted on this thread in a while. but, a lot of exciting news lol.
well i went to my doctor today for my 6month check up and........ my curves are now 14 and 17-out of brace-. and i grew an inch! i was like so happy. but... my risser sign is still 0. which like makes me wanna cry. but yeah.

okay so this whole washing the brace situation.
i know im only 14 (15 in 8days :D :D :D ) but this is what i do and my brace is fine.

so i wash the straps and bolera every 7-10 days in a lingerie bag in the washing machine and dry it in the dryer with a towel (so it dries faster)(on low heat). the reason for washing them every 7-10 days is so the elastic repairs itself so it is always tight and working. so like always wash it.. otherwise it wont work properly because it wont be pulling on your spine.
i wash my thigh and crotch straps separately, by hand and dry with a hair dryer.-without the thing with the plastic and snaps on it)* . my bottom piece is marvelous... because i dont wash it. the only thing not really holding up are the thigh bands. which is- i think- because im so active and always in motion so they are rubbing against each other. which is really annoying because they look like crap. and i like my brace to look pretty :p .

so in conclusion. i suggest this:
-wash thigh and crotch straps separately by hand and dry w/ hair dryer
- wash top part without bleach 7-10 days in a lingerie bag in the washing machine and dryer.
-DONT WASH THE WHOLE BOTTOM PIECE! just the thigh and crotch things- which means you have to take them OFF.
so yes.
cloggerx3

p.s. dont you just love my spinecor lingo :)

cherylplinder

04-22-2006, 10:04 PM

Congratulations!!!!!!Remind us of your starting curves, CloggerX.

Mom37

04-23-2006, 07:31 AM

That is amazing news!!! I thought you mentioned in a previous post that the initial the correction was less than 5 degrees ? Has it improved with time ?

Thank you for your response. Yes, her correction was 10 degree less in brace in one month from her initial out of brace. We were very pleased. There was quite a bit of tightening done. It was very loose on some straps. Dad adjusted and I changed back, worried since I had read others told not to, but it was about what Andrew Mills did. I also took advice from Lori and others on the forum and machine wash in bag on delicate with warm/cold water and dry on air cycle in dryer. It does help to spring back the bands from stretching. She wears it very consistantly 23 hours a day 5 days and 20 hrs 2 other days a week and is out of it maybe once or twice for a full 4 hours at once. The two hours at a time doesn't work with drying time real easily, so I try to wash now when I know it's going to be off for a while anyway and then kill two birds with one stone. I did just catch up on posts from the last time I posted and I washed twice the first month so every othr week with woolite by hand and air dried. I washed once a week the last two weeks with Arm and Hammer liquid detergent for sensitive skin but may do woolite in machine on cold/warm and dry only 20 minutes on air in dryer.

Celia

04-23-2006, 09:45 AM

....the reason for washing them every 7-10 days is so the elastic repairs itself so it is always tight and working. so like always wash it.. otherwise it wont work properly because it wont be pulling on your spine. :)

Am I the only one who feels strongly about not washing the elastic bands :confused: How can elastic repair itself ? Anyway....our bands are in excellent shape and they're working really well so....I don't know what else to say ? Cloggerx3 - Congrats with the latest news !!!!! How do you get the pink print ? :)

Mom37

04-23-2006, 10:18 AM

Am I the only one who feels strongly about not washing the elastic bands :confused: How can elastic repair itself ? Anyway....our bands are in excellent shape and they're working really well so....I don't know what else to say ? Cloggerx3 - Congrats with the latest news !!!!! How do you get the pink print ? :)

Celia,

I keep writing and taking too long and get logged out. I was just responding to you. I just reviewed the posts before my last as I had not checked and I too am nervous about it but no one else seemed to be so the first month I washed twice, every other week by hand in cold water with woolite and then line dried per the manual instructions and it took all 4 hours to dry and use blowdry for damp spots. The last two weeks I washed in mesh bag in gentle cycle in warm/cold setting with Arm and Hammer liquid detergent for sensitive skin. Then kept in bag and put in drying for 20 minute air dry cycle and then rechecked and put in another 20 minutes same cycle. I am now concerned and may put on extra gentle cycle in cold with woolite and only one 20 minute cycle or when we hit the high heat soon then just dry outside. It just takes way too long otherwise and with heat comming have to wash more often with sweat, etc for hygene. Any other suggestions? I too don't want to ruin a brace I cannot afford to pay out of my pocket. I too read the manual and have been debating what to do and was so pleased with a clean brace.

Mom37

04-23-2006, 10:20 AM

[QUOTE=cloggerx3]WHOAAAA>

well i went to my doctor today for my 6month check up and........ my curves are now 14 and 17-out of brace-. and i grew an inch! i was like so happy. but... my risser sign is still 0. which like makes me wanna cry. but yeah.

okay so this whole washing the brace situation.
i know im only 14 (15 in 8days :D :D :D ) but this is what i do and my brace is fine.

so i wash the straps and bolera every 7-10 days in a lingerie bag in the washing machine and dry it in the dryer with a towel (so it dries faster)(on low heat). the reason for washing them every 7-10 days is so the elastic repairs itself so it is always tight and working. so like always wash it.. otherwise it wont work properly because it wont be pulling on your spine.
i wash my thigh and crotch straps separately, by hand and dry with a hair dryer.-without the thing with the plastic and snaps on it)* . my bottom piece is marvelous... because i dont wash it. the only thing not really holding up are the thigh bands. which is- i think- because im so active and always in motion so they are rubbing against each other. which is really annoying because they look like crap. and i like my brace to look pretty :p .

so in conclusion. i suggest this:
-wash thigh and crotch straps separately by hand and dry w/ hair dryer
- wash top part without bleach 7-10 days in a lingerie bag in the washing machine and dryer.
-[COLOR=Red]DONT WASH THE WHOLE BOTTOM PIECE! just the thigh and crotch things- which means you have to take them OFF.
so yes.
cloggerx3

Glad to hear you are doing well. What was your original curve to now?

Mom37

04-23-2006, 10:43 AM

Mom37

04-23-2006, 10:53 AM

cloggerx3

04-23-2006, 05:52 PM

okkkayyy

my original curves were 25&19. so yess :)

* to change font color: look up a little bit where it says [font][size] and then [color] <-- click color.

CELIA VOGEL: :eek: :eek: :eek: :eek: :eek:
okay wow. wow. wow. wow. you dont wash the brace? wow. washing the straps are vital to correction. like. it just it. i dont know how to put it to make you understand. but agh. i dunno. maybe you should just try it- once. you will feel the straps tighten immediately. it makes such a difference. and also- doesnt the brace smell if you dont wash it? :confused: mine usually starts smelling if i dont wash it within a week. i mean not like ew get that girl away or anything, but like im active in dance so- i sweat. but please... please wash it just once and i promise the elastic will feel much much tighter and will help ur curves so much (go down). i dont know what else to say besides i feel very very stongly on this topic... very.

Celia

04-23-2006, 06:30 PM

:
okay wow. wow. wow. wow. you dont wash the brace? wow. washing the straps are vital to correction. like. it just it. i dont know how to put it to make you understand. but agh. i dunno. maybe you should just try it- once. you will feel the straps tighten immediately. it makes such a difference. and also- doesnt the brace smell if you dont wash it? :confused: .

The elastic bands are removable from the rest of the brace and I DO WASH the brace twice a week! I don’t know how much a person can sweat that they get the elastic bands smelly with body odour – that hasn’t happened with us. Deirdre wears a Spinecor bodysuit - the bolero fits as a jacket on top of the body suit and the elastic bands wrap around her torso. I am talking about the 4 elastic bands that I’ve only washed three times. I haven’t had a problem with the elastic bands getting filthy or smelly. My daughter is only 5 years old – maybe a teenager would perspire more due to hormones? Her in brace correction is “1” degree – I don’t think we could get much better than that. I just want to be able to maintain her correction.

If you’ve been reading the posts up until now you'll see that the bands for some parents are wearing out very quickly and I think it’s due to repeated washing and drying – this is just my theory. Does everyone have the same Patient’s Manual :confused: Nowhere does it say that the elastic bands have to be washed every week. One of the passages reads…."it can tolerate a few minutes in the dryer” I interpret a few minutes to mean 2 or 3 minutes? If your maintenance system is working for you – great ! This is obviously a very contentious issue and I should have just kept my mouth shut right from the very beginning.