spinecor

[gerbo]

hi pola, nice to see you around.

so, what about the cappucino on the patio in the sunshine.....(or something on those lines....)

melissa, you are daily in my thoughts, if positive vibes travel transatlantic, you should have received many......

[RugbyLaura]

Hi everyone,

I live in England. My daughter is 9 and has a 31* curve. I have been reading this forum for about a month but it's taken me until now to get activated. This has been very frustrating as I feel I know you all really well and have wanted to thank you for helping me through this awful period. I have met Melissa through a different forum and Gerbo through yet another.

Anyway just wanted to finally say "Hi" and thanks for your support (even though you had no idea that you were providing it!)

Laura

[MATJESNIC]

Pola,

I agree that it is great to hear from you. I think about you and Anastasia often and am so thrilled that all is well.

Celia,

It has been 5 months and she only grew about a third of an inch. Maybe she really grew more but didn't grow straight? Dr. Rivard said the risser and the other kind of maturity don't always correlate. I will definitly ask the doctors in Phila about the various types of surgeries. I can't stop thinking about Dr Rivard's face when he told us the news. He was distraught. Nicole keeps saying that she misses wearing her brace and she misses Dr. Rivard. Anyone who goes to Dr. Rivard is free to talk to him about us. No privacy on this end.

Gerbo,

I do feel everyone's good thoughts and concerns. I am calm right now. I really feel so much better than 2 years ago partly because I don't feel alone in this.

Nicole is handling this so much better this year, as well. We are actually making jokes about it at times. Does anyone watch Seinfeld? She actually said the surgeons would probably be eating Junior Mints while doing her surgery and then "Ooops, one fell in." Sorry if you don't get this reference. But it shows how well she is handling it. Nicole keeps asking me specific questions about the surgery. I keep telling her that they know what they are doing and she just has to show up. So she joked that they will probably wake her up half way through to ask questions. "So, wait, Nicole, do I put this thing here?" for example!!!! I am already trying to figure out how I can get Idina Menzel (Her fave Broadway star from Rent) to visit her. Her voice teacher knows many people on Broadway. But we will see.

Next week she has her last 3 recitals. I will enjoy them fully as she may not be in next year's. I am even forcing big brother and big sister to attend this year. I am also going to see if the director will say something about her at one of them. This is her 10th recital year there.

[amandap]

Hi Melissa,

WOW~10 Yrs is amazing. If you can do a short video clip please share I'd love to see her dance.

Are you taking Nicole to see Dr. D'Andrea or Dr. Betz? When's her appointment?

I think it was Celia who mentioned the Minimallly Invasive procedure and here is a helpful link; there is also an area with patient stories of other young ladies who've had this done.
http://www.iscoliosis.com/treatment-surgical-minimally.html

Amanda

[MATJESNIC]

Thanks, Amanda and Celia, I will check out that link. She is going to see Dr. Sandami. I made no requests. I just wanted her seen and x-rayed right away.

Just read the link and of course, her type of curve, thorasic-lumbar is not done this way.

[cherylplinder]

Melissa,
I just got the news today. My mom had surgery Tuesday, and I have been out of the loop.
I am so sorry. It sounds like your little trooper is being true to form and handling the news with strength and grace! I am glad there are so many that have forged this path successfully! I know all will be great.

Pola,
It is so good to hear from you! I think about you often and am pretty sure I checked recently to see if you had posted anywhere to see how you and Anastasia were. I am so glad you are doing well!

Hugs!

[MATJESNIC]

Thanks, Cheryl.

I appreciate everyone's love and support. It makes a world of difference!!! I will keep you all posted after her appt. on Tuesday. I hope Rachel is doing well.

[cherylplinder]

Rachel goes next month. We'll see then. She looks O.K. I am always a wreck a few days before! I know you understand.

I love my NSF friends. You have made all the difference in our journey through scoliosis. You have made me blessed in my trial! I love you!

Our prayers will be with you, Melissa! I love you!

Cheryl

[cherylplinder]

My mom came through her cancer surgery like a champ. The endometrial cancer was 50% through the uterine wall, but the lymph nodes are all clear!
She is improving every day!
Thanks for the prayers!
Cheryl

[gerbo]

1) that sounds very promising, you must feel a bit relieved there.

2) your personal and kind words are always appreciated. Great to have you "on board" on our spinecor-thread

[Celia]

Cheryl,

So glad everything went well! You must be so exhausted ((((hugs))))

[cherylplinder]

Yeah, relief is definitely the word! :D lol :D And yes, exhaustion would describe how I feel! :D lol :D
Hugs!

[MATJESNIC]

Cheryl,

Thanks for your kind words. I am glad your Mom is doing well. I will keep you all posted after tomorrow's appt.

[cherylplinder]

Mellissa,
I've been thinking about you today.............Praying all went as you wanted...........Let us know................
Hugs,
Cheryl

[MATJESNIC]

I am posting in the surgical section.

[christine2]

Gallathea

Are you out there? I was re reading your post about going to the meeting in Boston. You mentioned that there are chiro's here in the US that are trained to work with Spinecor. My daughters has been getting muscle spasms in her neck (knots so big I can feel them) It has happened 4 times in the last 3-4 months. I think a chiroprator could releive them quicker than me (I massage and use ice or heat. they last 3-4 days) My Chiropractor can get rid of mine on the spot! I would be very interested in find a "list" of these docs. Any Ideas so I can try to avoid bothering Dr. Rivard.

By the way everyone
Our new bodysuits from bodysuits.com are coming tomarrow. I will share info as soon as we try them.

My daughter and I are going to take a trip to see Rita at bodysuit. Rita is going to use my daughter to design bodysuits for all of us. Anything you all want to add to the design please let me know. (we are working on a bikeshort design right now)

Christine

[Celia]

Sorry to hear about your daughter's neck pain! Luckily Deirdre doesn't get any pain and everything *knock on wood* is going smoothly. I ordered 6 bodysuits about two weeks ago but Rita couldn't ship until June 1 so I guess I'll be receiving the order soon too :D What's the grub and Japanese Beetle situation like? Did you order the beneficial nematodes?

[christine2]

Celia

I have not. I dropped the ball. The beetles do not hatch till July 4 ish so I don't know if the milky spore kicked in yet or not. The grass looks healthy still so I do not think the grubs are feeding yet. (hopefully they are gone!) Can I apply the nemetodes anytime? If I start to see wear on the grass will it still work? I know the Grubex needs to be applyed before damage is seen.

Our bodysuits are due to arrive today. I am going to keep my fingers crossed my daughter likes them. They are sooo much cheaper than the spinecor suits.

Christine

[RugbyLaura]

Hi everyone.

I have posted once on this thread before, but I understand that this has been a very traumatic time for you all and you may not remember me.

If all goes well at Immy's appointment next Friday (15th), we should walk away with her Spinecor brace. I wonder whether you could cast your minds back to your first few days/weeks with the brace and advise me of what we might expect. For example whether I should buy anything in such as alcohol (not for me or course!) for sore spots, etc.

Any help would be gratefully received, thanks,

Laura

[MATJESNIC]

Laura,

Thank you for that laugh!!!! Yes, you will need lots of booze!!! Just kidding. Really for Nicole, it was no big deal. The only thing that sometimes irritates is by the bikini line. Dr. Coillard told Nicole last week that she could try crossing the crotch straps. Of course, we never got a chance to do that.

There are 10 ways to wear Spinecor and not everyone has a strap that irriates under the arm. But Nicole did. Moleskin on the straps that irritate may help.

Nicole honestly misses wearing her brace. It was really not that big of a deal. And she is not an easy-going type of kid to begin with.

I wish your daughter much success.

[cherylplinder]

Expect some soreness and irritation at the pressure points on the shoulder and hip. Rachel adjusted readily. We use boy short(the girl's version) underwear to address irritation from rubbing of the thight straps. She likes a regular T-shirt with her bolero and straps. I will be interested to see about the developement of a bodysuit that has the boyshort. Rachel hasn't used bodysuits since she discovered the boyshort panties.
Rachel overall loves her brace. She wore a Boston for a month before x-rays revealed no correction and no point to wearing it. It was torture. The Spinecor was so much better and cooler in comparison, that she has never looked back.
Best wishes!
Cheryl

[emarismom]

Hi all, I haven't posted for a while, but have been following this thread.
Tommorrow Emily will get her brace. I am very nervous now!! I hope that she
can adjust well. I'm having a really hard time with, although I know I have to do something sooner rather than later. I'll post tommorrow night to tell the
results of the fitting and first day.

[cherylplinder]

Good luck!!!!!!!!!!!!!!!!!!!!
Have a great fitting!

[Celia]

.... I wonder whether you could cast your minds back to your first few days/weeks with the brace and advise me of what we might expect. For example whether I should buy anything in such as alcohol (not for me or course!) for sore spots, etc

Hey Laura,

Great to see you posting here! :p I found moleskin to be really handy for chafing and so on. If the snaps ever break, a shoe repairman can usually fix the problem for a few dollars. Hmmm let's see........otherwise everything is pretty straight forward. :) Are you seeing Mr. Mills??

[RugbyLaura]

Thanks everyone.

Celia - re moleskin, I thought Gerbo had told you that it's an endangered species over here (lol, actually a huge pest). However, Googling in the UK only produces "Moleskine" notebooks and moleskin trousers. Perhaps I should buy a pair of trousers & cut them up, seems an awful waste though! Yes we are seeing Mr Mills and Mr Cole (consultant). I've heard great things about both of them from various sources.

Cheryl - Immy usually wears short style knickers, but I can't see how she'd go to the loo without taking everything off...

Emarismom - looking forward to hearing about the first few days. Good luck with everything.

Melissa, I know we don't get the brace for another 6 days, but I ought to make an early start on the booze - so have got a bottle of wine chilling for tonight. I thought it important to show commitment to this whole thing!

Laura X

[MATJESNIC]

Dr. Scholl's makes moleskin and it is sold in drugstores here.

I love when you say "The Loo." Nicole and I absolutely love a British accent!!!! Enjoy the wine. But really, it shouldn't be too stressful. The spinecor brace is heavenly compared to some of the alternatives.
'

[emarismom]

Just back from our initial fitting. Everything went well until they actually started fitting the brace. Emily had a complete meltdown. She cried and complained about everything being to tight, bothering her, hurting her. By the time we had it on and began practicing taking it on and off, she was fine. Right now she is sitting watching TV and having lunch in just her bodysuit and brace!!

The initial curve was 21 degrees. With the brace on she went down to 16.8.
Next week we will go back to check that everything is adjusted well. The doctor didn't adjust it very tight this time as Emily was really having a hard time, so next week, once she is handling it better, they will make it a little
tighter.

[MATJESNIC]

I am sure you will get a much better correction when it is tighter. Nicole went down about 16 degrees at her initial fitting. But obviously, the tighter, the more of a correction is revealed.

Best of luck.

[emarismom]

Okay, so yesterday did go a lot better than I expected overall. Only a few meltdowns, but they were manageable. I do have a few questions though. Firstly, on Emily's brace, straps three and four come over her shoulders. While she was sleeping, strap 3 slipped off the shoulder, is this normal?
Also strap four wraps around her body from left shoulder all the way to back of left hip. It is visible around the neck area and most of Emily's clothes don't cover it, is this normal? She is a little upset because I told her noone would be able to tell she has it on. Any suggestions?

[gallathea]

Hi Emily's Mom:

My 7-year-old has the same kind of #4 strap placement, and she has the same problem with wanting to have the brace completely covered. She rejects everything that doesn't cover that piece on the neck especially. It is tough now that it's summer and we can't rely on turtlenecks. I'm having someone handy with sewing put in more cloth at the neckline of her favorite T-shirts to cover it. I hope it works. She also wears a lot of button-down shirts.

Good luck. I know how hard it is to watch your little girl get so frustrated.

Caroline

[gallathea]

Hi Christine:

Sorry I didn't get back to you sooner about the chiro ideas. I was on a much-needed vacation. The woman I talked to at the conference is named Louise Marcotte. Her e-mail is dremarcotte@altsantechiro.com. She was really nice and helpful and I'm sure she could tell you who you should contact to find a chiro near you who is trained specifically in the Spinecor philosophy.

Good luck!
Caroline

[cherylplinder]

Rachel has a right thoracic, left lumbar curve. Her #4 strap attaches to her right shoulder and goes around to her left hip(under her right arm and down across her back) One time, when her brace was too loose, that strap slipped off her arm. One time, when that strap was too tight, it slipped off her arm. Maybe when they adjust the brace to optimal tension, you will not have a problem, but I would not hesitate to give them a call and run it by them. I call everytime I have a question. You can always e-mail pics.
Rachel's #3 strap attaches to the left shoulder and comes across the front between her breasts, it wraps all the way around her waist at the back and attaches to the base at front center. It wraps aorund more than 360 degrees. I guess that would be 360 plus another 90 degrees. Left shoulder, all the way around to left side, and from there to center pelvis. This is the strap that always shows for Rachel. We have had good luck with T's from JC Penny and Wal Mart. T's with a high round neck cover this strap for her.
Rachel's #4 and #3 straps both irritated her skin at first. She experiences very littly discomfort now.
Best of luck!
Cheryl

[Allegra]

I know this is a pretty stupid question, but a left thoracic curve means the upper part of the spine is going to the left, right? (ahahaha left , right)

[christine2]

Hi Caroline

I hope you had a restfull vaca. I did call Dr. Rivard he suggested message instead of chiro so we will try that 1st. He also OK'ed a little more time out of brace this summer to swim. He is my hero!

Emily's mom

It does get better and better with time. My daughters strap also shows at the neck line but my daughter does not care. I am not sure if it is because of her young age or if she is just very confident. She actually took of her shirt at the playground the other day and played in bodysuit and brace. (it was hot) All of her friends know she is in brace infact she shared her x rays with her 1st grade class. Because she is in brace at such a young age I have a feeling Dr. Rivard will keep her in till she stops growing. (long time) So I want her to be as emotionally comfortable as possible. We talk about how straight and tall she is every day!! We are thankfull to have Spinecor and talk about that everyday too. When she says anything negative about her scoliosis I channel it to postive. "Thank goodness we found Dr Rivard !!" I do not know if any of it helps but it is all I can do as a mom.

Everyone
My daughter did not like the new bodysuits. They have elastic around the legs. I called Rita and she will work on a new design. We will meet with her as soon as the kids are out of school.
Christine

[Celia]

Everyone
My daughter did not like the new bodysuits. They have elastic around the legs. I called Rita and she will work on a new design. We will meet with her as soon as the kids are out of school.
Christine


:eek: :eek: OMG elastic at the legs???? I wonder if I can still cancel?????

[christine2]

Celia
They are very good about returns. Rita will have no problem changing the design.

[emarismom]

Thank you for all the responses!! Emily is doing very well today with her brace. This morning when she woke up I asked her if she wanted to take it off for a while before going to summer camp and she said no. At lunch time I went to visit her at camp and she was doing fine. I guess she is adjusting better than me :eek:

Caroline,

Emily is wearing a tee shirt that doesn't completely cover the #4 strap today and she is okay with it, so I'm going to keep my fingers crossed that she is over the initial shock.

I have a call in to the chiro who fitted her to check on the strap issues so we'll see what he suggests when he calls back.

[RugbyLaura]

Hi Emarismom,

Sounds like a breeze so far?? How does Emily find sleeping in it? We are really looking forward to getting Immy's on Friday!

Laura

[emarismom]

Emily has had no trouble sleeping in it at all. None of the straps are rubbing or chafing her skin. I bought her the boxer type underwear and some really
soft, tight tees to wear under the brace. The tees were 5.99 at Target and she is very happy with these. She did not like the spinecor bodysuits at all. On the first day she kept complaining that they were giving her "wedgies".

I hope that everything goes well on Friday.

Michelle

[cherylplinder]

Allegra,

Yes, a left thoracic curve means the thoracic curve goes to the left. Rachel has a right thoracic. Her thoracic curve goes to the right. I described it in detail because it seemed that someone might have a left thoracic curve. It would be difficult to equate the two if you were not acutely aware of the difference.
I can see how Rachel's #4 strap corrects the rotation of her thoracic curve, -partially because I have read the manual. I will try to post it later, but tonight is my 25th anniversary of marriage. (Of course, I was a child bride at 19!) My husband wants me to get off the computer. We didn't make it 25 years without compromise!

Celebrate with me the perseverance that 25 years takes and pray that we have instillled the same perseverance in our children. He's a wonderful man, but he took 25 years to train. (I took 25 years, too! I appreciate that it goes both ways!)

Hugs to all!

Cheryl

[cherylplinder]

He had to take a shower! Here is the manual.

Hugs!

Cheryl

Oops! It didn't copy the first time. I'll edit and try again.
http://www.srs.org/professionals/bracing_manuals/section13.pdf

[Allegra]

omg HAPPY 25th ANNIVERSARY!!!
:)

[cherylplinder]

Thanks!
http://www.srs.org/professionals/bracing_manuals/section13.pdf
And here is the manual!

[Celia]

Hey gang,

I'm sure many of you going to Montreal for treatment are aware of their new x-ray machine ??? Apparently the radiation dose is 1/3 of regular x-rays or is that digital? Digital x-rays are already half the radiation dose of regular x-rays so I was wondering which one it is. Anyway....I'm very excited about the prospect of less radiation and it's obvious that dr. Rivard cares and is looking out for our kids. Does anyone know what the machine is called? It takes both a lateral and P/A at the same time and works with lights????


p.s.

Happy Anniversary Cheryl!!! I hope you got spoiled!!! :D

[cherylplinder]

Thanks Celia,
We had a lovely evening!

[desheah]

celia,

we had to sign a consent form this last time we were there. it was the first time we used the new x-ray machine. we got a handout describing it. unfortunately, it is in french. i will look it over and see if i can find the name of it. the older woman that is there who is very friendly said they are doing a study to detect the radiation exposure of different organs using this new machine. they need a fair number of patients to get enough data, but yes, it seems they are definitely interested in decreasing radiation exposure.

deshea

[Celia]

celia,

we had to sign a consent form this last time we were there. it was the first time we used the new x-ray machine. we got a handout describing it. unfortunately, it is in french.


Hmmm.....I didn't have to sign a consent form or get a handout :confused: I can't imagine signing a consent form for something that is actually an improvement on existing treatment and hence not assuming additional risks. The consent form was probably to allow them to include you in the study? Could you scan the pamphlet and e-mail it to me.

[christine2]

Hi everyone

I am planning our next vacation around a visit to Montreal in August. I was thinking about spending 2 nights at the Great Escape Lodge in NY. Any input from anyone?
Christine

[arairdon]

Deshea and Celia,

When we were in Montreal in April, we were sent to the new x-ray and they discussed us signing a consent, but then they ended up sending us back to the old machine. We didn't quite understand why?? :o

Ann Rairdon

[MATJESNIC]

Nobody mentioned a new x-ray to us. I also don't go in with Nicole. We wait outside the door.

Hope you don't mind but I am not ready to leave this thread. I still feel very attached to Spinecor and sometimes can't believe what has happened.

[Celia]

Melissa,

I'm not ready to have you leave either and I really can't believe this whole thing is happening - it does feel like a bad dream. You are a dear friend and you're *always* welcome!

Ann,

I was never asked to sign anything and yet when I arrived for the x-ray, I was sent to room 4 rather than room 5 which is the room we normally go to. The x-ray technician didn't say anything to me and when I enquired about the new machine - a tubular enclosure with lights that start flashing from the floor up, she explained that the radiation dose is 20 % of regular x-rays. I didn't question this because I was happy with the prospects of less radiation and I trust drs Rivard and Coillard so I didn't think much of it. I don't think its a panoramic machine but it does take lateral and P/A at the same time. I'll phone the radiology dept at ste Justine tomorrow and ask for the name of this machine so that we can look it up on the internet. :)


*

[Celia]

It didn't take me too long to find these two articles. I'm wondering how reliable company estimates on low irradiation are :confused: I also don't like the idea of my child being irradiated from head to toe??? If the machine irradiates from head to toe that means A LOT more organs are being irradiated vs the old system. I don't know too much about x-ray machines but It worries me that they're comparing this machine to CT and bone scans and that eventually it will be used exclusively for bone scans. I don't think one can compare bone scans to routine x-rays???

http://www.biospace.fr/en/xray.php






New X-rays give better pictures, less radiation

AARON DERFEL
The Gazette


Thursday, March 16, 2006



CREDIT: MARCOS TOWNSEND, THE GAZETTE

Doctor Hubert Labelle, of Ste. Justine Hospital, notes that new X-ray technology provides front and side images at the same time.

Two hospitals in Montreal are the first in North America to use an innovative medical imaging technology that's one-tenth as radioactive as conventional X-rays and far more accurate.

The EOS system provides doctors with three-dimensional images of the skeleton that can be turned on a computer screen to gain more views of a bone abnormality. This will enable orthopedic surgeons to plan better for operations.

The technology also emits 300 to 1,000 times less radiation than a CT scan. Patients won't have to lie on a table while being scanned, as is the case with computerized tomography. Instead, they will stand while the EOS system scans them from head to toe.

The advantage of such images over CT scans is that they show joints and the spine in a normal standing position, giving doctors more accurate images of the skeletal anatomy.

The equipment has been up and running in the last few weeks at Ste. Justine and Notre Dame hospitals on a trial basis. It is being used for the diagnosis of spinal disorders like scoliosis as well as osteoarthritis and osteoporosis, a thinning of the bones.

"What is remarkable about the EOS system is that you can get front and side images of each subject simultaneously, which greatly improves the quality of 3-D reconstructions of the spine and pelvis," said Hubert Labelle, professor of surgery at the Universite de Montreal.

Under the EOS system, two X-ray detectors scan the body vertically. With these two full-body X-rays, 3-D computer images are reconstructed. In contrast, a CT scanner takes 500 or more images of the body, emitting far more radiation.

The technology was pioneered in 1996 by French scientist George Charpak, a Nobel laureate. The first prototype was used in a Paris hospital in 2003.

The EOS system won't replace the CT scanner, which is used to detect cancer and other diseases. But, eventually, doctors will probably use EOS exclusively for bone scans, suggested Jacques de Guise, director of the orthopedic research laboratory at the Centre hospitalier de l'universite de Montreal.

De Guise said the EOS system will spare many patients repeated radiation exposure from conventional X-rays. The health risks of radiation are not negligible. Studies have shown that scoliosis patients are at a heightened risk of developing cancer because of repeated X-rays.

Marie Meynadier, president of Biospace (which makes the EOS system), said the technology has been shown to produce better surgical outcomes in patients because of the superior accuracy of the images. She suggested the equipment will eventually be used to plan better for hip- and knee-replacement surgery.

Hospitals across the continent are interested in purchasing the machines, she said. The equipment costs about $500,000.

aderfel@thegazette.canwest.com

© The Gazette (Montreal) 2006

[christine2]

I don't know Celia it sounds safer to me. It seems as though the x rays are taken faster and there may be only one instead of 2 views which in it self cuts radiation down. I will be interested to find out more. Keep researching I really value your opinion.

St Justines is on the cutting edge of technology, sometimes change is hard. Look at all the trouble we are having getting Spinecor recognized as a treatment with our orthos.

We go to see Dr. Rivard in August, I want more info before my daughter is X rayed.
Christine

[cherylplinder]

Do the sheilds for the ovaries work with the 3D? Does that mean they are getting x-ray exposure to the brain, too? The exposure is always full body?

You're probably saying,"I don't know yet. That is what we are trying to find out."

Even if the percent exposure is less than before, if it is whole body instead of just spine, I don't like the idea. Then you are exposing areas that you don't have to have x-ray exposure.

I would be surprised if they couldn't control the area x-rayed. In a CT, they choose the areas to do the cuts on. Hopefully they have the capability to do full body, but can choose spine. The gonadal shields would probably not work, though. 20% is a lot less than normal. It might be a trade off.

[Celia]

Cheryl/Christine,

I have to agree 100% with Cheryl on this. When Deirdre was standing in the enclosure the lights started flashing from the ground up and once it reached the top of her head, the x-ray was finished so I would assume that it's not just localized exposure and that the brain would be irradiated as well. I wasn't asked to sign a consent form and the fact that everyone else was, is making me feel ill to my stomach.

[gallathea]

Hi Christine--

I'm sending you a private message about bodysuits.

Best,
Caroline

[arairdon]

Celia,

I'm not sure about this, but I'm wondering if the consent forms were only for those of us from the State's. Maybe because this machine isn't used over here yet?

Ann R.

[gerbo]

Saw your post in surgical thread. You must feel like shit at the moment. When you're ready please let us know what happened. If you need a chat feel free to ring tomorrow, we'll be in till 12 o'clock.

Take care

gerbo

[RugbyLaura]

Gerbo,

Thanks for your kind offer. I will ring soon, maybe this morning but I'm going shopping to buy the most deluxe mattress topper you can find! Immy was a superstar last night and fell asleep wearing "George". Unfortunately she woke up at 1am with toothache & couldn't get back to sleep so I let her take it off.

Anyway, here's what happened - X rays 1st, then Mr Cole. What a lovely man! He was so honest (maybe too honest) and genuine but the 1st shock for us was that the curve has grown to 38 derees (10 degrees in 6 months, 6 degrees in 3 months). Considering her age and the fact that she has grown very little in this time he considers her scoliosis to be aggressive and the highest risk for progression. We are basically using SpineCor to buy time before surgery so as to let her get as much height as possible. This was really not the news we wanted!

The we saw Mr Mills, Immy liked him better (because he didn't talk so much about surgery and was less scary). He said much the same as Mr Cole. ie she is in the most serious category. He said that there was an (extremely slim) chance that if we squeeze her curve down to 20 in brace we might avoid surgery. But not likely - her curve in brace yesterday was 31 degrees.

I can't see her dancing in the brace. There's just not enough hip / shoulder / waist mobility. Perhaps this will improve with time?

Laura X

[cherylplinder]

What was her supine x-ray? Did they do one?
Rachel started out at 38T/27L. She was 31 or so on fitting with Spinecor. Then she was 22/22. Then she was 20/18. Then she was 22/20. She has grown 3 or 4 inches since she got the Spinecor.
The year her thoracic curve progressed from 18 to 38 degrees she only grew 2 cm.
I felt better after she grew so much in brace and did not progress anymore, but improved.
If Immy's curve is very rigid, it may not respond. That is why I asked about her supine x-ray. Dr. Rivard said on fitting that he thought he could get Rachel to 22 degrees. That is what her supine x-ray was - 22 degrees.

You may find that on your follow-up, she is much improved. I hope so.

Hugs!

Cheryl

[emarismom]

Laura, very sorry to hear that Immy may eventually need surgery. Keep your
spirits up though, as none of us truly know what will lie ahead. As bad as the surgery will be, at least we can all be thankful that there IS a surgery that can correct our children's spines and that they WILL be able to lead normal, full, and productive lives despite the scoliosis.

How is IMMy feeling today, I hope better. Is she adjusting well to the brace. Emily hasn't named her brace yet. It's just- THE BRACE. She is doing so well with it that I am amazed. The kids are so resilient!! I'm
stressing out so much more than she is :eek: :confused:

To change the subject, how does everyone deal with caring for and washing the brace? The doctor told me to wash it once a week in the delicate cycle.
I did this yesterday, but was scared to put it in the dryer. I just put it in the
Fluff air cycle. I took off the crotch straps and leg bands. I was so nervous trying to put it back together.

[Celia]

Laura,

If the doctors feel Immy's curve is the aggressive type and it's so close to the 40 degree mark, why don't they place her in a corrective cast for a few months and get her curve to a new level followed by the Spinecor. Honestly, given the surgical alternative a cast is the lesser of the evils.

[RugbyLaura]

Thanks Guys!

We're all feeling a lot brighter now. Amazing how quickly we get used to things isn't it?

Cheryl - Rachel's story sounds spookily similar to Immy's, except for the second curve. Your history has given us hope, perhaps we can get it down to 20? We'll certainly try.

Michelle - Immy is feeling much better today and is wanting to show George off to her friends. She finds the no.4 strap the most annoying as it pulls her shoulder down & back and digs in a bit. But she's not complaining much at all. Re washing - Mr Mills said to bung the whole thing in on a gentle wash (no fabric conditioner) and then tumble dry on a low heat. I know that my tumble dryer gets pretty hot even on a low heat if on for more than 10 mins so I intend trying 10 mins at a time with a bit of waving it around in between!

Celia - thanks for your hug on SSO! I was feeling very low last night. Much better now thanks to all of my Scoliosis friends! Our consultant does not believe that rigid bracing of any kind would be useful to Immy. We just have to hope that with hard work & perseverance we can beat this thing!

Immy is finding the poppers on the bodysuits a bit tricky and I'm worried that she'll find it frustrating, time consuming and therefore embarassing at school. Has anyone ever tried using velcro instead of poppers?

Thanks again,

Laura X

[RugbyLaura]

Sorry Cheryl, I forgot to say: They don't do supine x-ray but Mr Cole said that her curve was very flexible (tested by getting Dad to lift her off the ground under her armpits) and that he would not operate until he felt it was becoming fixed. He would even let it get as high as 70 dergrees if he felt he could still get a good correction, to allow her more growth. Mr Mills said that her curve was reasonably flexible. I didn't see how he checked this.

Laura X

[Allegra]

Hi everyone!
If any of you are interested in looking at different bodysuits, i think i may have found something. Surprisingly, this was a myspace ad. If you check it out, let me know your opinions. The rest of the site would not be for any kids, unless it's under the kids section.
Parents, I wouldn't waste my time on it either, unless you are looking for shiny workout pants or something..

<3 Allegra

http://store.americanapparel.net/rsa8338.html

[MATJESNIC]

Hello Friends,

Nicole had an awesome surprise party and I would love to share some pictures with you. My daughter Jessica said she would help me post some. So stay tuned. Maybe tomorrow.

Gerbo,

Happy Father's Day!!!!

Happy Father's Day to all you other amazing Dads out there. Hope you don't get too many ties!!

[RugbyLaura]

Hi everyone,

Just a quick question. Immy has been really good at wearing her brace. She wore it all night last night & has worn it most of today. She has just had it off for two hours this morning and three this afternoon to dance (she's now in the bath). One problem, she has a sore bit between her legs on the bit where the bodysuit & crotch straps go, just on one side. Is there anything I can do? I'm worried that if it gets really sore it might put her off wearing it. Tomorrow she is going on a 7 mile walk with school.

Laura

[alabama mom]

Hi everyone. I was reading all of the posts on th xray machine, and I wanted to say that I had been a little uneasy about this new machine from the beginning. We first went to Montreal in April, and the xray technician, and Dr. Rivard (I think?) explained that it was a new machine...10% radiation compared to the regular machines...and that they would need me to sign a release. But, I never actually was given anything to sign, and I never asked about it. When we went back in May, they used that same machine.
I had read a little bit of discussion on this issue, here on this board, before I ever went to Montreal. I felt that everyone else sounded happy about the less radiation machine, so I thought I should be too. But I must admit now, that I have had some concerns about it.
I thought I would let you guys know what our experience was with the consent form thing, and let you know that I would also like to know more about this machine, before my daughter uses it again.
I hope that we can all come to feel better about this matter, and that it proves to be a good thing for our kids. 10% of the radiation per xray is a GREAT thing.
Nancy.

[cherylplinder]

The most pertinent question for me would be........ How much x-ray exposure are the surrounding body parts(head, breasts, gonads, etc.) receiving with their traditional x-ray in the scatter rays, (breasts and gonads even with shields are receiving a dose of radiation. ) If you are in the same room when the x-ray is given, you have to wear a shield to protect you.
Maybe some data has been studied and is available. It would not be impossible to measure, I don't think. I would think there would be a study we could look at.
It could be that the head, etc. receives a 10% dose with their traditional and so there is no added detriment to the child.
I just want to know ahead of time so I can choose wisely.
One would think that before making the change, all of that would be studied.

[MATJESNIC]

I just asked Nicole if she had a different kind of x-ray machine and she said yes. Nobody told me anything about it or asked me to sign anything.

[Celia]

The one thing that strikes me about the EOS is that it's constantly being compared to CAT scans and the ability to get a three dimensional view of the spine in order to assist the surgeon in planning for a better surgery. Keep in mind that * two * simultaneous x-rays beams are taken to get a lateral and frontal view vs the old system of only *one* P/A x-ray. I was also thinking about the difference between A/P and P/A x-rays.... P/A x-rays expose the patient to less radiation because the bones are blocking the x-ray beam from coming into direct contact with vital organs and hence less radiation with P/A versus A/P. The EOS has two lateral x-ray beams and organs would definitely be targeted with it. If we get the following articles ....does anyone speak Chinese or have a friend who could translate the article??? I could probably translate the French one.



The EOS project is the outcome of the meeting between clinicians, namely Professor Jean Dubousset from the Saint-Vincent-de-Paul Hospital Center in Paris, physicians from Biospace, the company set up by Nobel Physics Laureate Georges Charpak, and LBM biomechanical engineers specialized in three-dimensional modeling. For this project in particular, we wanted to forge an alliance with the Laboratoire de recherches en Imagerie et Orthopédie (LIO, imaging and orthopedics research laboratory) in Montreal, an image processing specialist, with whom we have already productively collaborated.

What is the principle underlying EOS that provides a three-dimensional reconstruction of the bone?

EOS combines two major innovations. One, microstrip gas detectors were developed through research carried out by Georges Charpak and Biospace. With this system, very low-dose irradiation (five to ten times lower than standard X-rays) X-rays can be taken. Two, a new modeling technique enables precise 3D reconstruction of the external envelope of an osteoarticular structure from a simple pair of X-rays. This was designed by LBM and LIO teams working with the Saint-Vincent-de-Paul. Hospital Center.

What clinical and scientific advantages does EOS offer?

With EOS, the bone can undergo a detailed 3D quantitative exploration. For clinicians, this means improved patient therapies. EOS also has a major advantage for research. The overall view of a patient means that physicians can see if vertebrae are slipping or understand why the patient has a configuration that causes regular luxations. We, who have a background in mechanical engineering, can gradually begin to understand what is actually happening on a bio mechanical level thanks to mechanical models in finite elements that we build based on customized data. For instance, we are now working on surgical indications based on the 3D reconstruction, among others.



1: Zhongguo Yi Liao Qi Xie Za Zhi. 2001 Mar;25(2):63-5, 81.Links
[The imaging principles and the structure of the low-dose digital radiographic device]
[Article in Chinese]

Kang QZ, Yu HL, Zhang H, Zhang DS, Cao HD.
Jing An District Central Hospital, Shanghai.

This article introduced A new type of X-ray radiographic device, which uses MWPC as the low-dose detector with the machinery and computer to reconstruct the X-ray digital images. In this paper, the advantages and the disadvantages of the device are analysed, thus much improvement has been made to make it better and more efficient.

PMID: 12583141 [PubMed - indexed for MEDLINE]


1: Bull Acad Natl Med. 2005 Feb;189(2):287-97; discussion 297-300.Links

[A new 2D and 3D imaging approach to musculoskeletal physiology and pathology with low-dose radiation and the standing position: the EOS system]
[Article in French]

Dubousset J, Charpak G, Dorion I, Skalli W, Lavaste F, Deguise J, Kalifa G, Ferey S.

Hôpital St Vincent de Paul, Service de Chirurgie Orthopédique.

Close collaboration between multidisciplinary specialists (physicists, biomecanical engineers, medical radiologists and pediatric orthopedic surgeons) has led to the development of a new low-dose radiation device named EOS. EOS has three main advantages: The use of a gaseous X-ray detector, invented by Georges Charpak (Nobel Prizewinner 1992), the dose necessary to obtain a 2D image of the skeletal system has been reduced by 8 to 10 times, while that required to obtain a 3D reconstruction from CT slices has fallen by a factor of 800 to 1000. The accuracy of the 3D reconstruction obtained with EOS is as good as that obtained with CT. The patient is examined in the standing (or seated) position, and is scanned simultaneously from head to feet, both frontally and laterally. This is a major advantage over conventional CT which requires the patient to be placed horizontally. -The 3D reconstructions of each element of the osteo-articular system are as precise as those obtained by conventional CT. EOS is also rapid, taking only 15 to 30 minutes to image the entire spine.
PMID: 16114859 [PubMed - indexed for MEDLINE]

[Celia]

Hi everyone,

Just a quick question. One problem, she has a sore bit between her legs on the bit where the bodysuit & crotch straps go, just on one side. Is there anything I can do? I'm worried that if it gets really sore it might put her off wearing it. Tomorrow she is going on a 7 mile walk with school.


Hey Laura,

The crotch strap may have to be loosened just a little bit if it's too tight? According to the manual the crotch straps should never be too loose or too tight. If she has a sore on her inner thigh a band aid will definitely help with the chafing.

[RugbyLaura]

Hi all,

Immy wore her Spinecor (George) to school today for the first time. Absolutely no problems at all!! She was even doing forward & backward walkovers, handwalks, handsprings, etc. She said they were not quite as good as usual, but hey, it's only day 4!

We've been home for an hour now & she's not asked to take it off....

Laura X

[cherylplinder]

Laura,
That's great! What a relief!

[MATJESNIC]

Laura,

That is wonderful. When Nicole first started dancing in Spinecor she couldn't kick her legs as high and there were other things she felt restricted with. But that didn't last long. Eventually she did everything in it.

[mpj]

Hello,

Just wondering if any of you have problems on wash day. We have been using the brace since Dec. and still Madeline cries each time she puts her brace on after it has been washed. Her brace feels tight for several days afterwards. This past time, we waited for two and a half weeks in between washing because she didn't feel like it had loosened up enough to wash. The vest portion of the brace seems to be very tight and digging into her skin. Any suggestions?

Thanks.

Sarah

[MATJESNIC]

I am so sorry you are having that problem. We never had any problems. We always hung the bottom part to air dry and we only put the top part in the dryer for about 5 minutes and let it air dry the rest of the time.

[christine2]

My daughters brace is definately tighter after washing but not so tight that the vest leaves marks. Are you drying on air only? I actually like it just after washing it feels as though it is working better.

Eveyone I need to share

On Tuesday it was very hot out. My kids were swimming most of the day. I was checking my daughters back, it looked almost straight!!! I could not believe my eyes. I could not stop looking at her!!! I can't wait to see Dr. Rivard in August.

[mpj]

I have been drying it on delicate which is fairly cool. It takes quite a while for it to feel dry though. Maybe I need to do more air drying.

Thanks for the feedback.

Sarah

[Celia]

Eveyone I need to share On Tuesday it was very hot out. My kids were swimming most of the day. I was checking my daughters back, it looked almost straight!!! I could not believe my eyes. I could not stop looking at her!!! I can't wait to see Dr. Rivard in August.


That's *wonderful* Christine!!! I'm so very happy for you and your daughter.

[gallathea]

That's so exciting, Christine! Enjoy the summer!
Caroline

[RugbyLaura]

Christine2, I'm so glad your daughter's back looks good. I think Immy's looks better already, but it's so soon I'm probably just imagining things!

Just a quick question - I noticed on another thread that you are going to limit floor exercises (gymnastics). I'd be interested to know which exercises and why as Immy spends her life doing gym (all round the house, garden, school playingfield, etc).

Melissa, you're right! Immy said that she can't do high kicks or splits in her brace, but I've told her that she will be able to - just like Nicole!

Immy's birthday tomorrow and 1st wash day for "George" on Saturday.

[christine2]

Cartwheels and dancing is great. I am referring to repeditive motions such as they do in classes. Handspring type of activitys where they land with impact on their feet over and over again.

My daughter has been in brace for almost 1 yr and she can kick very high and do splits, your daughter will get there very soon and actually her body will be stronger than most kids not in brace because of the extra effort.

[cherylplinder]

When do you take Immy back for her adjustment?

[mpj]

Hi Laura,

My daughter does lots of gymnastics (about 20 hours a week in the summer.) Dr. Rivard had told us that it was good for her as long as she was wearing her brace. She does floor and vault in her brace. She does bars and beam out of her brace. He just said the more active she can be in it the better and told us that he has generally had good success with gymnasts and dancers. Also, gymnastics keeps her body flexible and strong.

Sarah

[RugbyLaura]

Hi

Cheryl, We go back either on 10th July or 13th August. Mr Mills is busy inbetween. I should find out soon. In some ways I'd prefer to wait until August as I'd rather she didn't miss yet another day of school, particularly during the fun last few weeks. But I really want to see what's happening and to get it tightened if possible as it doesn't seem very tight.

Sarah, thanks for the info re gymnastics. Immy doesn't do squad anymore as she didn't have time with all her dancing, but she does do a lot of gym in her dance.

Laura

[emarismom]

Laura, Give a big Happy Birthday to Immy today!! I also think that Emily's
straps need to be a little tighter. However, when I washed the brace last week, Emily did complain that it was too tight. The straps she complained about were 1 and 2 that wrap around her belly. She never complains about
3 and 4, which I think are doing the work. I can't tell if Emily's back is better or not. Sometimes I think she looks straight and other times I'm not sure. When I have her bend over, the rib hump is still there :( , so I know it the curve hasn't disappeared :mad:

[Kalarasy]

Does anybody have the written instructions from the hospital to dr. Rivard's office ? Can you please e-mail them or fax them to me? I had a hard time finding his office with instructions and I don't know what I would would do without them. Nobody seems to know were his office is in the hospital. Our next appointment is july 18th.My e-mail is new lifecarehome@yahoo.com.
Thank you
Adriana

[cherylplinder]

Our appt is July 19th. How long will you be in Montreal?

[Kalarasy]

I did not buy thr airplane tickets yet, but I am thinking to leave back on the 19th, to stay from 17th to 19th. The air plane tickets are expensive about 800 dollars plus we will stay at the hotel. So I don't want to stay too long. We live in Portland Oregon.
Adriana

[Celia]

Melissa,

I just remembered your p.m. I've never met Dr. Dormans :confused: According to his website, he was at Sick Kids in the late 90's and Deirdre started treatment at Sick Kids in May 2002. There are *so* many doctors and the hospital is *so* HUGE that the chances of running into any particular doctor is very remote unless you have a clinic appointment.

[MATJESNIC]

Celia,

What is that hospital's reputation? I believe he did is residency there.

[Celia]

Sick kid's is world renowned! They have an incredible reputation!

[Celia]

It's the second last day of school for the kids before they break for Summer vacation and today is WACKY WATER DAY at their school so Deirdre went to school without her brace and she's wearing her bathing suit underneath shorts and tank top. The smile on her face was absolutely priceless because even though the Spinecor is virtually invisible *she* knows she's wearing the brace and hence feels different from the other kids to a certain extent but today she was just one of them.


*

[gerbo]

lisanna too loves her occasional bracefree evening or (even) day

[cherylplinder]

I let Rachel stay out of her brace for her cousin's wedding and reception last month. She was happy.
I am glad I'm not the only one that occasionally does that.

[RugbyLaura]

Immy rarely takes hers off... She wore it at her birthday party on Sunday, even though I said she could take it off. I expect because it's newer to her & the novelty has not worn off - or maybe she's just lazy!!

[cherylplinder]

I think it's really good that she likes to wear it. Rachel has a strap that twists lately. I think she will be more comfortable if we get a new one.

[Celia]

I think the reason she was so happy was the thrill of playing water games with her peers and not having to worry about getting her brace wet. In general, she prefers wearing it all the time.

[RugbyLaura]

Hi all,

I have noticed that Immy's brace moves a bit when she wears it, not much, but enough to mean than she has a rubbed patch. The whole bottom part of the brace moves round so that when you're looking from the front the plastic bit is off centre by about 1cm. This has caused a red mark just above her (left) thigh but more importantly - does this mean it's less effective?!

Any help gratefully received...

Laura
ps - I'm glad Deirdre had a lovely day!

[cherylplinder]

You can tighten the base a bit more so it doesn't slip. If it slips, it cannot correct the rotation as well.Call your doc and get specific instructions.

[gerbo]

laura, you are seeing mr mills after one month anyway I assume, he can adjust if necessary. Some movement is inevitable anyway. Rubbing at certain area's can be a problem. We use zinc/castor oil for minor skin irritation, elastoplast type of dressings for smaller abrasions and something called mepilex if a larger area needs protecting for a bit

[cherylplinder]

That's good to know, Gerbo. Rachel has some areas that get irritated from time to time. I don't know what elastoplast and mepilex are. Can you describe them. I know there is nothing by those names on the shelves in the US.

[gerbo]

oh, you americans, do we have to spell everything out :rolleyes: :rolleyes: :rolleyes: , anyway; elastoplast are just the sticky dressings you put on all common open wounds, and i am sure you will have put those on your childrens knees, elbows over the years. These days they come in many varieties and different thickness and size so you must be able to find one which suits the purpose.

Mepilex is a more specialist dressing and is described as "absorbent soft silicobe dressing with polyurethane foam film backing". It comes in 10-10 size, hardly sticks to the skin (very easily removed) and is about 3-4 mm thick, so gives some padding.

can you work it out from there??

with many good wishes as always

gerbo

[RugbyLaura]

Originally posted by Gerbo
elastoplast are just the sticky dressings you put on all common open wounds, and i am sure you will have put those on your childrens knees, elbows over the years. These days they come in many varieties and different thickness and size so you must be able to find one which suits the purpose. Cheryl, I think you'll find that's a man's way of saying "Bandaid" :p

Thanks both for your help. The red patch really doesn't appear to be painful so I'm just letting it heal naturally. I still haven't heard from Mr Mills regarding the follow up so may chase him today. I know there have huge problems in Sheffield with flooding so this may be affecting things. I am keen to get to see him soon though as the brace does not seem very tight and my paranoia is setting in again, imagining daily progression.....

Laura

[Celia]

Cheryl, I think you'll find that's a man's way of saying "Bandaid" :p


I enjoyed reading Gerbo's description :p It brought tears to "me eyes" LOL!!! He sounds like such a sweet man!

*

[RugbyLaura]

Celia, you're up early!
He sounds like such a sweet man!Not wishing to embarrass him too much ;) but Gerbo and his family have been the most enormous source of strength for me (and my family). I thank this forum, and this thread in particular, for all the amazing support you've given. :D

[gerbo]

BandAid??That's Bob Geldoff doing his bit for mankind, isn't it?

Laura; protocol for spinecor requires checkup after 1 month, 3 months and every three months after. Make sure you chase it!!

[RugbyLaura]

Gerbo, thank goodnes I have you and Cheryl nagging me! I have phoned Helen this morning and she says that she's "almost certain" we'll be seen on 13th July (weather permitting!!!). She just needs to clear this with Mr Mills on his return from USA on Tuesday. :D :D

[cherylplinder]

Hi everybody!
I am just missing you all. No one has posted in a while. What's everybody up to?

[RugbyLaura]

Hi! Immy had a fitting for her rigid brace on Monday, which was booked before we got Spinecor so we thought we'd go anyway. It just made me realise how horrible it would be for her to have to wear one. Because her curve is quite high the brace is really long. It looked huge on her and was very restricting (she got stuck on her back at one point). Spinecor is so much more wearable, but enough preaching to the converted...

Immy's 1st follow up appointment with Mr Mills has been confirmed as 10am next Friday (13th). We're really looking forward to it!

Laura

[cherylplinder]

Laura,
I am so glad you got the appt! I know what you mean about the TLSO or Boston. They are incredibly restrictive compared to the Spinecor. I will be thinking of you next week. Rachel goes the next week on the 19th. I am nervous.
Hugs,
Cheryl

[Celia]

Cheryl,

I'm doing good! I think Gerbo also has an appointment sometime in July for Lisanna. I won't have computer access much this month due to vacation at the cottage etc. etc. etc..... :D It's a tough life! Phew!!!!! I'm getting exhausted just thinking about lying by the lake sipping cool beverages and working on my tan. I got myself a new Ralph Lauren bikini :p :p

[cherylplinder]

Oooooooooooooooooooooooooh! That sounds nice!!!!!

[alabama mom]

Laura....I was also having the same concerns and problems as you (the base shifting a bit off center, and then causing the silver buckle to irritate the skin on her left thigh). When we went back to Montreal for the 1 month check-up, Dr. Colliard said that it was ok that it was shifting like that, and she didn't tighten the base up. I also wanted to let you know that we have been using "Blister Block Stick...by Band Aid", to help avoid the irritation caused by the base shifting. So far, it seems to be helping this problem. It is a newish product meant to prevent blisters on the feet, caused by shoes. We just rub it on the specific area, kind of like a solid deodorant, everytime she puts her brace back on. She has also been using it on her thighs, and she says that it seems to help avoid the irritation. You can usually find it at walmart/target/drugstores, even some supermarkets. It is a little expensive, it costs aprox. $5 for a small stick, but I think it's worth it.
I hope this helps you out.
Nancy

[cherylplinder]

I may try that for Rachel on her armpit and hip. Thanks.

[Olivia'smother]

I have been reading whatever I can find the past few days in an effort to find the best treatment option for my daughter. She was diagnosed with scoliosis in November 2006 with a 15 degree (not sure of the other measurement off hand but believe it was quite small) "S" curve that was being "watched" every three months. There was some mild progression until recently when it jumped to 27/20 degrees. Now, of course, we are being told to brace. During the "wait and see" period, we were told by our othopedic specialist that there was nothing that could be done to slow the prgression and I listened, but now am questioning everything. Although we were concerned, my sister has mild scoliosis that never progressed to bracing or surgery, so were led to believe by our doctor that our daughter would most likely share in her positive prognosis. At our most recent appointmet last week, the doctor reviewed her x-rays in the other room, and came in to tell us that she has to be braced in a hard plastic brace for 20-22 hours per day for a year and a half. :eek: No discussion other than she will have to give up many activities as she can only be out of the brace for a short period of time each day and gym and showering will account for a good share of that time. My daughter is very active and likes to play many sports and swim. This was devestating for us both.

After processing what was said, I decided to try and educate myself as to what the brace would be like and what other options might be available. I was frustrated to see how difficult hard bracing seems to be, and that it is standard conventional treatment in 2007 to do so. When I came accross SpinCor, it looked like a wonderful option and seems to make sense. I am not a doctor, I am a counselor so although I am obviously concerned about treating the scoliosis, I am equally concerned with my daughter's mental health. She has suffered from debilitating status migraines for the past year with NO relief. We live in northern NY and have been traveling to a neurologist in VT all year to try and find an effective treatement. She missed 69 days of school and suffered horribly. She is now on a preventative treatment that is helping some, but we are still dealing with them. I simply cannot fathom putting her in a hard brace on top of everything else she has been through.

I contatcted the orthdopedic speicalist yesterday to ask him about the SpinCor brace and he was quite hostile and condescending. :mad: He basicallly laughed at me and told me that they prey on soft parents who don't want to do what is necessary to help their children. I believe he said it was "witchcraft". He proceded to tell me that the hard brace is no big deal and that I am the problem because I am not on board 100%. I thanked him for his time, and decided that would be the last time I would speak with him. I will never send my daughter back there.

I of course have some reservations about the SpineCor, but see it as our only viable option. My concern is that Olivia is 11 years 11 months old and started menstration 11 months ago. I know that she is not necessarily the "perfect" canditdate for the brace, but I want to at least look into it. Even if there is little to no correction, as long as there is no more progression we would be happy. From what I was told about the hard bracing, it typically only holds the curve if it even works at all. Since I live so close to the Canadian border anyway, Montreal is quite close. I would like to have a consultation with Dr. Rivard, but am not sure how to get in touch with him. I contacted a phone number I found online for him, but there was an aswering machine in french (of course) and as my high school french is quite rusty, I am not sure if I even left a message in the right place. Would anyone know of a better way to contact him? I realize he is in high demand and I may not get in to see him, but I have to try. I have read through many of the posts and want to thank you for giving me some hope. ;) Good luck to all of you.
Amy

[gerbo]

Hi Amy and welcome.

So sorry to find yourself in this position and having to enter the rollercoaster ride on the theme of "how best to deal with my daughters scoliosis". It can be quite a scary and nauseating ride at times, but ups to tend to follow the downs and the upsidedownbids usually do not last too long. You are surely not alone on this ride as there are many here happy to share our knowledge and experience.

I assume you have read through this terrible long thread which really contains all you need to know about pro's and cons of spinecor treatment and arguments for and against so I am not going to repeat that. However if you feel you need some more advice or still have questions; feel free to ask.

My dayghter, now 13, has been wearing the spinecor for 18 months and although there is no garantee it will prevent progression (which it seems to have done till now) at least it garantees a reasonable quality of life; indeed, that's so important as well.

I believe dr rivard is usually quite happy to respond to emailed questions, and others have spoken to him by phone. He speaks english, so you could leave a message in english i would have thought.

So, welcome once again, we are quite a nice lot, and always happy to answer questions.

By the way; this migraine; is it typical and stable, or is it getting worse despite treatment? (in which case further tests might not be a bad idea)

regards

gerbo

[RugbyLaura]

Hi Amy,

We're fairly new too. My 10 year old daughter has been in Spinecor for 3 weeks and has had no problems so far. Our first consultant said to watch & wait. So we waited & watched the curve grow to 31 degrees. Second consultant said she needed bracing (hard brace) & while we waited for appointments the curve grew to 38 degrees. Third consultant now - who seems to be excellent! Although, he has said that Immy's chance of avoiding surgery is nil. He believes that Spinecor will be the best way of holding the curve until she has grown as much as possible. He is quite anti hard braces!!

Given the latest set of study results (hard brace - 80% requiring surgery, Spinecor 80% avoiding surgery if I remember correctly), it seems strange that there is so much antipathy towards Spinecor.

I wish you & your daughter the best of luck. With a curve under 30 and being pretty much mature, her outlook is promising, I think.

Laura :)

[Celia]

... He basicallly laughed at me and told me that they prey on soft parents who don't want to do what is necessary to help their children. I believe he said it was "witchcraft".

I'll tell you what's witchcraft, watching for curves to progress to 30 degrees before starting treatment!!!! :mad: I believe the French message states that drs, Rivard and Coillard are out of the country until July 6 (that was yesterday) and they have clinics on Tuesdays, Wednesdays and Thursdays. Sometimes you can find them in the office on Mondays. If you leave a message in English with contact details they are very good about returning calls and you may even speak with dr. Rivard directly. Given your daughter's age, I wouldn't wait too long to seek treatment because her curve can progress very quickly. As a mom, I would be concerned about frequent debilitating headaches and an MRI might be necessary to rule out other causes.

[MATJESNIC]

Amy,

I am very sorry for what you are going through. Believe me I understand. You are fortunate that you live so close to Montreal. There is always an English message that follows the French one. So I am not sure if you dialed the correct number. If the curve is going to increase, it will probably do so regardless of the type of bracing. If you feel more comfortable with Spinecor and Dr. Rivard says she is a candidate, then you do what you feel is right.

I have to give my our doctors here a lot of credit. They have all validated our decision to do what is best for our daughter and to try anything and everything before we have to resort to surgery. Many of the orthopedics here do not even believe that hard bracing could prevent some of the more aggressive forms of scoliosis.

That ortho you saw was a complete jerk. I have never heard such ridiculous statements and how dare he talk to you like that.

Go on the Spinecor website and be sure you have the correct number. Leave a message and they will call you back.

We are all here for you for support. Good luck.

[Olivia'smother]

Gerbo,

Thanks for the reply. I'm sure every parent would agree that watching your child go through this is difficult. I would trade places with her if I could. But I also realize that the bumps in the road and how we cope with them make us who we are so I am trying to accept this and be the best advocate and supporter I can be.

I do understand that there are many pros and cons to SpinCor and that with the many great successes there are also failures. But it seems to me that there are at least as many in hard bracing. I'm glad your daughter is doing well and you're right - the quality of life is so important. Good luck.

Olivia's migraines appear to be gowth related. She has had numerous tests to rule out anything else more serious. They are not worse, but are still present. Between the migraines and scoliosis, pubery has not been kind. She has missed out on a lot of her childhood this past year just coping with that, so again I think the SpineCor would greatly improve her quality of life over the alternatives.

I look forward to reading about everyone's progress on this unpredicatble journey. :)

Amy

[RugbyLaura]

Nancy, Re band-aid blister stick. I can't find this in the UK but have found something called Compeed anti-blister stick, they also do something called Compeed liquid bandage which is supposed to prevent blisters & sores. Will give these a try, thanks. Having said that, Immy really does not seem to have much problem with "sore bits"; she certainly never complains It's just that I have noticed that she has a few red patches.

Laura

[Olivia'smother]

Wow - I can't believe all of the support here! Thank you for all of the feedback. I have already emailed Dr. Rivard, thanks to an address I received, and feel better about doing SOMETHING. Even though everyone's situation is different, it is so nice to find some understanding and hope. ;)
To reply to an earlier post about Olivia's migraines. Thank you for your concern, but she has had an MRI, spinal tap and countless other bloodtests to rule out more serious conditions. The neurologist is hoping that when her growth slows down, so will the headaches. I am hoping that once her growth slows the scoliosis will not have progressed either and maybe (do I dare hope?) her curve will have improved. I live in a very rural part of upstate NY with very limited medical care, but am fortunate to be fairly close to Burlington VT and Montreal. I noticed that some of you are traveling from quite a distance to go to Montreal and other locations. I guess there isn't much we won't do to help our children however we can. God bless you all.
Amy

[scoliomom]

HI
My daughter is 13 and her curves progress, this year to 39' and 40'. I, of course, immediately educated myself as you are doing. I m a firm believer in the body rethinking" itself and using physical means rather than surgery. I found incredible evidence that lead us to the CHENEAU brace.. There are only 2 places in the US that make it. It is a hard brace- my daughter is entering 8th grade and doing well adapting.. Luke, in Fairfx VA helped her tremendously with contact numbers for other girls like her wearing this brace, all over the US.

Just thought I'd throw in my 2 cents-- We are also attempting SCHROTH methods of exercise..

good luck for you and your daughter. :)

[emarismom]

Olivia's mom,

I know that you said that the nuerologist did do MRI's on your daughter. Did they do brain and full spine? Or did they do just brain? You may want to get copies of the MRI films or a cd with the images and send them to another
nuerologist to take a look. It really never hurts to get another opinion. If there is an underlying cause to the scoliosis, and the headaches, it needs to be addressed. My daughter did have other issues that once dealt with did stabilize her scoliosis. I now have her in the Spinecor brace because if she does start to progress in the future, I don't want to look back and say, "If only I would have..."

[Olivia'smother]

Thank you for your concern. She did have a brain MRI which several doctors read (including the neurologist) and the full spinal MRI which only the ortho looked at. It wouldn't be a bad idea to have someone else look at both. I have wondered since things have progressed, if the conditions are related. Our family chiropracter thinks they may be, but has no concrete suggestions for treatment. I respect the fact that if she doesn't clearly know what she is doing, she will say so. She has suggested some exercises like Yoga and swimming as well as inversion treatment and massage which I believe are not going to hurt. I appreciate the advice and plan on following through. Thank you. :)
Amy

[mariaf]

Amy,

Welcome!

Just to throw another option out there - your daughter sounds like she MIGHT be a candidate for the vertebral stapling. If you would like more information, please feel free to e-mail me. These procedures have been done, for the most part, at Shriners Hospital in Philadelphia.

Best of luck to you,

[emarismom]

Olivia's mom,

I would caution against letting the chiropractor do any types of spinal manipulation until you know what exactly is going on. I would also suggest
that you find specialists (ie. nuerosurgeons, not necessarily nuerologists) to read the films. If you can send the films to the Chiari Institute in New York, hopefully they will be able to conclusively rule out Chiari and tethered cord. They are supposed to be the best.

[Olivia'smother]

I must admit that I read some of your posts about chiari, but didn't realize what it was. I just looked it up and you are right - with my daughter's migraines it could be a possibility. :eek: Thank you for alerting me to this. I will definitely look into it. I would have hoped with both the MRI of the head and spine that it would have been detected if it is chiari or thethered spine, but am realistic enough to know that these things are not always caught. Plus, I live in a remote area of the country with limited access to quality healthcare so it would not be unheard of for my local doctors to miss something. Thank you for the tip on finding a neurosurgeon as opposed to a neurologist as well - I would not have known where to start. :)

My chiropracter is a friend of the family and hasn't been doing ajustments on Olivia, but has been giving us some information on how to strengthen the muscles in her back and showing me some simple massage techniques. I know doing anything is a risk, but there is so much conflicting information out there that there is no clear cut right or wrong. I don't feel 100% confident in any decision I make, but I want her body to stay strong and to take a proactive approach. I think that was part of my problem with our former ortho - I felt like we were being told there little hope and to just "let it happen" which I find to be quite depressing for both myself and my daughter.

Thank you again for your concern and good luck with your daughter's continued success.
Amy

[Celia]

I think that was part of my problem with our former ortho - I felt like we were being told there little hope and to just "let it happen" which I find to be quite depressing for both myself and my daughter.



I certainly don't want to sound like a cynic because I *really* do believe in the goodness of mankind and I see it everyday all around me BUT when surgeon fees for spinal fusion in the U.S. approaches $50,000 - $70,000 for each spinal fusion performed it's no wonder most doctors in the U.S. are giving parents the impression of "no hope" and to "watch and wait" because it's in their financial interest to perform these surgeries. Patients have been reduced to commodities as representatives from multinational corporations are often times in the O/R along side doctors as surgeries are about to take place.

[gerbo]

you are too cynical I think, Celia, I am sure there are enough too late diagnosed cases going around to keep them busy and their children fed.

[Celia]

It's pure greed! People can never have enough money - it's a non satiable need. Regardless of how much money is made, people will always find creative, imaginative ways of spending it. So instead of buying a $70. pair of shoes they'll buy an $800. pair of shoes and so on....

[gerbo]

It's pure greed! :mad: People can never have enough money - it's a non satiable need :D

i'd put it down to ignorance and misinformation laced with some incompetence,

[gerbo]

amy, if you are interested in muscle exercises; have a look at this article http://www.medxonline.com/downloads/articles/measuredresistanceinscoliosis.pdf , or alternativelly search for the thread on torso rotation on this site for some additional info (useful stuff in between the usual banter)

it is an approach we have added to bracing treatment for the last 2 years or so.

gerbo

[Olivia'smother]

Thanks Gerbo. I am definitely interested in keeping Olivia as active and strong as possible. Not only for her physical well-being, but for her emotional well-being. It helps her feel like less of a "victim" and more in control of her health. Amy

[emarismom]

Celia,

I'm with you on the doctors. There is NO reason why they all say to take the wait and see approach. I have waited two and a half years for Emily's
back to hopefully get better after the decompression. Thankfully it stabilized, but if there is a possibility of using the Spinecor (or anything else)
to possibly improve the curve, then why not give the patients and their parents the option of trying something. Oops I forgot, if there is no progression, there is no surgery down the road!! I wonder if it were their children if they would be waiting so long.

Olivia's mom,

Many, many times Chiari is not diagnosed until a person has been treated for every other possible cause of headaches. I was lucky that Emily was diagnosed immediately after finding the scoliosis, she had no symptoms of anything else. Unfortunately, most people are not quickly diagnosed. A great website to find information is www.asap.org

[Olivia'smother]

Thanks for the guidance. I will definitely follow through. I hope that it is nothing, but if it is this information could be a lifesaver.

[cherylplinder]

Ten days til our appt and I am a nervous wreck. I just keep reminding myself that if Rachel's curve progresses, it is still in God's hands. But I can't help being on pins and needles. I say before every visit that I'm not sure how she looks. When I look at her straight on, her shoulders and breasts are even. Her rotation is still about 5 to 7 in brace. I know that is good. Sometimes when she walks, she looks off to me, but I bet it is my imagination. I do this every time. I flake out. I hope it remains just my flakiness.

[mariaf]

Cheryl,

Good luck!!

We all know how you feel. A friend of mine (another scoli mom) even has a name for it "the dreaded x-ray day feeling" -

At least you know you're not alone.

[gerbo]

we all do it all the time, look, judge, think it looks good, think it looks bad, try not to look, curse ourselves for not doing something, worry ourselves for doing the wrong things, not trying this or that, not being stronger about how often this brace is being worn, etc, etc,....

xray days are extra scary; we are desperate to hear some good news, we are dreading bad news

we are up for judgement again this wednesday.......

...and do feel a bit scared again

[RugbyLaura]

Immy's first follow up is on Friday & I too am nervous, but also excited! I assume it'll be too early to have any real feed-back.

One thing; people on this and other forums often talk about rotation, sometimes giving a measurement. Rotation has never been mentioned by anyone treating Imogen other than her hard-brace orthotist. This ortho was a bit concerned about it. How is rotation measured and is it something to ask Mr Mills about on Friday?

Laura

[gerbo]

he will measure it friday by asking her to bend forward and use this thing called a scolimeter to measure the "rotation" or "ribhump"

[RugbyLaura]

Thanks Gerbo. So when Cheryl says Her rotation is still about 5 to 7 in brace. and Jennie on That-Other-Forum says that Em is "80% and still twisting" are these the same methods of measurement or different? Both Messrs Mills & Cole used that spirit level thing on Imogen's back. At the top it was significantly unbalanced and near the bottom it was very slight, in the other direction. Presumably this means they have measured, but not told us.... Is it important?

[gerbo]

sorry do not know what the 80% means. Is it important?; it is another measure of "progress" (or improvement). Though I would imagine the cobbangle on xray to be more important. (somebody is going to argue with me about this i suspect)

[RugbyLaura]

Is it important? Ok, fairly silly question, it's obviously important or they wouldn't have measured it. I guess I meant why is it important? And is it another thing for me to worry/obsess about?!!

Hope all goes well on Wednesday.

[cherylplinder]

Gerbo,
You always have a way of expressing things that hits the nail on the head! But it's nice that I'm not the only one that obsesses about this exactly as you described!. We'll pray for good news Wednesday.
Hugs,
Cheryl

[cherylplinder]

Laura,
I don't know what the 80% is. The other instrument you described is a scoliometer. Readings can go from 0 to 30 degrees and right or left. Rachel reads 5 to 7, sometimes 10, in brace, on the scoliometer.
I won't be surprised if you see a good bit of improvement on Friday and am praying you will follow Rachel's course with that.
Gerbo or Celia, I know, would be better than me at explaining the effect of rotation on the curve.

[MATJESNIC]

I have been told that some smaller curves can have a lot of rotation and that some larger curves can have a smaller amount of rotation. Rotation is always a big concern. Some are more concerned with that than with the size of the curve. When Nicole bends down she has a rib hump on her right side. When I see it, it really upsets me because it looks like such a deformity. When she stands up, her back looks great from a distance. Anyway, I asked about her rotation and they said it was moderate.

[Sherie]

Cheryl and Gerbo

I hope you have good news, I know how it feels waiting for those xray results. But so far, it's been good for your girls and will hopefully stay that way. I wish we had started the Spinecor much ealier than we did, maybe we wouldn't be facing surgery at this point.

Good luck :)

[christine2]

Hi Everyone

We have our next appointment in Montreal Aug 9. I am a bit worried. My daughter has been out of brace more due to swimming, it has been sooooo hot. Also on the way back from the appointment we pick up our new puppy. a little Brittany.
Christine

[RugbyLaura]

Christine, amazing correction! I can't remember how long this took.... I could look and will do if you don't repond :D I wish Imogen could get something even remotely like it.

I have never heard of Brittany dogs but have had a look on the web & they look gorgeous! We have a chocolate Labrador (Lottie) & while they are hard work in the first couple of weeks, dogs are a great addition to the family. Have fun!

Laura

[RugbyLaura]

Hi again, I'm such a duh-brain, as Immy would say! Your signature says the time-frame. What I'd love to know is: what was the 1st correction, 1 month follow up, 3 months, etc.

Laura X

[Olivia'smother]

I am sending positive vibes for you and your children Cheryl and Gerbo. I do hope everything goes well.

I hate to be pseky, but I have been trying desperately to get in touch with the doctors in Montreal about the spinecor with no success. I emailed Dr. Rivard last friday and have left 2 messages on the answering machine (I had 2 different numbers and they both had an answering machine in french only). I decided to email Dr. Colliard today as well. I don't know what else to do. I feel like Montreal may be my only option as I am very close (a 2 1/2 to 3 hour car ride) and simply cannot afford to travel to NYC (8 or 9 hours away).

I know that time is very important and I am desperate to do something before this curve progresses. I'm very upset with myself as I now know that my daughter's curve is worse than orginally thought. The orthepedic specialist said that it was 27/20 when we spoke, but I happened to look at her report and it is 27/30! :eek: I did not misunderstand him as Olivia heard the same numbers, but I should have reviewed the paperwork earlier myself and did not. Now I am in panic mode and do not know what to do.

I still do not feel like the hard TLSO brace is an option for her, but it is the only local option we have and I have to do something soon.

Please let me know if anyone has any other suggestions as to how and contact the doctors in Montreal or alternative quality spinecor practitioners that may be closer (Burlington Vt? Syracuse NY?)??? We have talked about the possibility of vertebral stapling but feel it is only an option if the spinecor brace does not pan out.

Any suggestions or information would be welcome.

Thanks,
Amy

[RugbyLaura]

Sherie, not meaning to cause offence, just feeling a little superstitious. I know you don't know the rest of us so well, but could you please wish us all good luck?

Amy - Keep going. I have no practical advice as I live in the UK but I know how you feel - impotent. Keep pushing, you'll get there.

Laura XX

[MATJESNIC]

Amy,

You live so close to Montreal, if I were in your position I would only go there. Why go further to get fitted by chiros when you can get fitted by the inventors of the brace who are orthopedics. I am sorry you are having so much trouble. I also sent Dr. Rivard a question a while ago regarding Nicole's surgery and have not heard back from him. That is not like him. Possiblly you can find out the clinic hours and just take a ride there. Maybe someone else knows of a way to reach them.

[christine2]

Hi Amy

I felt intimidated by the french message as well, LEAVE A MESSAGE they will call you back. I received a call yesterday from an assistant (nurse?) and she scheduled me for our re check. I believe she said Dr. Rivard was out of the country for a bit (July 16?). It will be worth while for you to see them!! We are very happy and feel as though we recieved the best possible care seeing them. We drive 7 hours.

Hi Laura

Our 1st visit was 33 down to 7 degrees, follow up 1 month was 11 degrees, follow up 5 months was 5 degrees. My daughter is VERY flexable we are very fortunate!! Plus Dr. Coillard does not mess around, the brace goes on and goes on right, it seemed almost too tight at 1st but my daughter adjusted quickly and got a great correction right away.


We actually already have 3 dogs. we just had to euthanize our 14 yr old German Shep a couple weeks ago (very very sad!!!)

Christine

[Olivia'smother]

Christine - thanks for the reassurance. I did leave a message, but will call back with a more detailed one. I hate to be so overbearing and I am normally a very low key person, but this is my child and I don't mess around. I understand that they are highly in demand and may be booked, but I am praying they will see us.

Congratulations on your daughter's success!!! That is SO promising and although I realize results vary, makes me feel more confident that even without extensive studies this brace can work.

Amy

[christine2]

Hi Celia

So far so good with the beetles, I only have a small section of garden by my pool that is affected as of now. I can see where the grass roots are being chewed underground. It seems as though the Milky spore may have done it's job. They say it is effective for at least 10 years. I will treat that area in the fall with the nemetodes.( or will it work now) This forum is a wealth of information!!!!

Christine

[mpj]

Hi Amy,

I recently made an appointment with Dr. Rivard, but I do believe he said he would be out of town until around the middle of July (the 15th?). Therefore, I left a message at a number where the message was in French. I left my message in English and it did take a few days for someone to get back to me. However, I did get a response. Perhapse it would be good to e-mail again next week when he returns.

Sarah

[Celia]

Hi Celia

So far so good with the beetles, I only have a small section of garden by my pool that is affected as of now. I can see where the grass roots are being chewed underground. It seems as though the Milky spore may have done it's job. They say it is effective for at least 10 years. I will treat that area in the fall with the nemetodes.( or will it work now) This forum is a wealth of information!!!!

Not sure about the fall since we only use it in the Spring. I wonder if there is a number you can call and ask? Sorry to hear about your dog! When our dog died a few years ago I cried for days! We got our current dog a few weeks later because we couldn't cope with the loss of our first.

[Celia]

Good luck tomorrow Laura! Whenever we go for appointments in Montreal dr. Coillard always tightens the straps even more. Has anyone heard from Gerbo? I hope all is well.

[RugbyLaura]

Thanks Celia & Cheryl. I am really scared. Immy has no problems with wearing the brace but I get the impression that 7 degree correction at first fitting is not great. Also, she had a costume fitting tonight and her right shoulder blade was sticking out quite a bit. This is not something I've noticed before. Presumably she won't have any x-rays taken tomorrow?

Thanks again, will post as soon as we get back.

Laura X

[cherylplinder]

Rachel only got 7 or 8 degrees on her first fitting. I'm holding my breath for you.

[christine2]

Laura
I thought there were no x rays the 2nd visit too but I was wrong. She did have them done. That is reasuring about Cheryl's daughters initial correction. Try to stay positive (not easy!!) and let us know asap PLEASE.

[christine2]

Amy

There is no doubt in my mind that they will see you. Dr. Rivard and Coillard are truely trying to help our children, They are very caring and compasionate Drs when you meet them especially Dr. Rivard you will find, as I did, that they are not like the docs here in the states who make you feel as though you are inconviencing (sp?) them. I was able to get in to see them within 2 weeks. It is not like here where you have to wait months for an appointment.

[Sherie]

[QUOTE=RugbyLaura]Sherie, not meaning to cause offence, just feeling a little superstitious. I know you don't know the rest of us so well, but could you please wish us all good luck?

Sorry Laura, :o

I didn't intentionally mean to leave anyone out, honestly I seldom look at this thread anymore. Sometimes I'll see a name I recognize and just read those posts because there is too much on here for me to keep up with. My daughter hasn't been in the brace for about 6 months now because it wasn't helping, her curves were already high when we started.

Of course I wish you and all the other parents, bracing or whatever, the best of luck. This is a tough road for all of us, I'm just now really accepting the idea that my daughter's life will be altered because of this surgery, something I never imagined we would be facing a few years ago. I really, really hope the bracing works for these kids.

Take care, I hope you too have a good appointment.

[Olivia'smother]

Thank you to everyone who has been so supportive. I have felt like I was climbing the walls this past week trying to contact Montreal with no success. I know they meant well, but the people at my pediatrician's office were pushing me to get her in somewhere as soon as possible and it made me feel like I was being a bad mother just waiting.

Dr. Rivard called me this afternoon - I am so thrilled. He has been on vacation, but my email was relayed to him by Dr. Colliard and he wanted to check in with me. We discussed Olivia's situation briefly and he said she sounded like a good candidate for the brace. He also quoted me the price of the brace and visiits which was significantly less than I had anticipated. He said the office would give me a call next week to schedule. I am so relieved. I must admit that I have NEVER received a call from an American doctor on vacation! He seems like a very committed doctor from what everyone has been writing about him. We are so excited!

Thanks again for everyone's kind words and suggestions. They have been invaluable. :)
Amy

[gallathea]

Hi everyone:

I was just wondering if it's possible for a curve to be progressing even if it's looking stabilized in the brace. When I asked Dr. Rivard about this, he said that it would progress in the brace if it were progressing, but I'm just feeling a little unsure about that. Since they don't do out-of-brace x-rays can they know for sure? I wouldn't trade the Spinecor for the TLSO, but I guess I'm just having one of those days...

Thanks, and good luck to everyone heading up for their follow-ups!

Caroline

[Carly's Mom]

Hello Everyone.

I have not been on the forum for awhile. I took my daughter Carly for her 4 month check up with Dr. Marco and her curve got worse by 3 degrees. She is a Risser 4 so they said that can happen and that a correction may not happen but we are trying to keep the curve from getting worse. Her Othotist tightened the straps. We go back in 3 more months. We live in Ft. Worth and travel to Houston to UT and also see Miguel Gomez the orthotist.

We have been taking our daughter to a Chiropractor and giving her supplements and she swims as much as she can and does water and other floor exercises. Does anyone else know what else to do to try and keep the curve from getting worse?

Also, we have 4 SpineCor bodysuits to sell if anyone needs any. They are size S/P and M/M. She never wore them cuz they did not fit right. We bought some bodysuits at Dance4Less.com and got snaps put in the crotch. I ordered two more but they were different. I called and they said I had to put in the comment box that I wanted the ones with the white front inside panel, not tan and do not order the Stonewear brand. If you order them, order ones with the white inside panel and take them in anywhere for the snaps to be put in the crotch. My daughter prefers the front to go over lapping the bottom. These bodysuits have a lower back too. She likes them much better than the SpineCor bodysuit. They are only 13.99 also.

And I wash them on the handwash cycle and use oxyclean. And I hang it to dry. I use oxyclean on the brace too. My daughter also uses the moleskin on the bottom leg bands. We wash the bottom once a month and change the moleskin and I spot clean it each week. It costs too much to keep replacing the moleskin and plus the time to cut each piece and put it on and take it off. She could not stand the feel of the leg straps. But now she is so used to the SpineCor that she feels so good in it.

[MATJESNIC]

Carly's Mom,

What are your daughter's curves?

Caroline,

Dr. Rivard is right. If the curves start progressing, you will know. Nicole's curves were basically 34 in the brace for about a year. Five months later, it was 48 in the brace. Since she was getting a 10 degree correction up until this point, our biggest fear was that her curve was now 58 without the brace. But thankfully we found out that her curve was now 52 without the brace. (I told you 55, but CHOP measured it at 52. I like that better!!!!)
This means that Nicole went up from 44 to 52 in 5 months and the brace was no longer giving her more than a 4 degree correction.

You will know. Trust them. But I hope you never know of that. It is such a sinking feeling.

Olivia's Mom,

I am thrilled that you finally talked to Dr. Rivard and are seeing him. I wish all of you the best of luck.

[christine2]

Hi Caroline

I was worried about not having out of brace x rays too but it is way too soon for our girls. My thoughts: their muscles need to build to hold the in brace curve. after a couple years of bracing the muscles, spine and posture will be re trained to stay straight (I HOPE, I HOPE!!!) I definately have those days too!!! My kids are having a great time e mailing your daughter. Thank you for including my son.

Amy
I am so glad you got to speak to Dr. Rivard. Isn't he great. I can't believe he called you while on vacation. Well I am not really that surprised he is awesome. I was also surprised in the cost. I was quoted a $ significantly higher elsewhere (we won't open that can of worms). We get the best at a better price. You don't see that much.

Christine

[Celia]

Hey gang,

I'll be silent for the next little while as I'm leaving on Sunday and won't have computer access for close to a month. I'll try to sneak a peek at an internet cafe just to see how you're all doing but that's not guaranteed. I know Cheryl has her followup next week and was asking that I send her a hug. I'll send it now (((((hugs Cheryl))))) Anyway stay strong everyone!

[gerbo]

Anyway stay strong everyone!

do not feel strong at all, as we were not pleased at all at review!!

In january we still had an 18 degree in brace primary curve, with this 28 degree sec curve. To deal with latter some tension was taken of two of the bands, and recently we really, really felt optimistic on how lisanna looked.

the q-scan at the beginning of the appointment appeared to confirm that impression (that it all looked straighter) but x-rays do not lie and whilst the sec curve was similar at 30 degrees, the primary curve had shot up to 25 degrees. OK, lisanna had grown3.8 cm in 6 months, there is always a margin of error, and method of measuring was different (on computer rather than by hand), but both louise and I felt terribly disappointed, the only vaguely positive person being Lisanna herself (and the consultant, but he hasn't got a clue what to do anyway)

bit at a loose end now; mr mills is going to get second opinion from dr rivard, so waiting for that.

Now feel very insecure, the stability and control we thought we had is gone and the next 6 months are going to be nerve destroying

The option of including "alternatives" becomes suddenly more attractive (desperate as we feel), but what to go for??? None of them have any evidence of effectiveness behind them, so how do you choose???? Was thinking of talking to a osteopath locally to see whether he can offer a reasonable plausible approach. And it be the end of heavy schoolbags, whether she likes it or not, it will be a roll along little suitcase.

Thought it was better to hold back a bit posting this as i did not want to unnerve anybody going for their checkups today.

[cherylplinder]

Gerbo, I didn't expect that. She's been stable for a long time in brace. I'm so sorry. I was afraid your report wasn't what you expected when you didn't post right away.

[MATJESNIC]

Gerbo,

You know how sorry I am for your disappointment. Any idea if there is still correction going on in-brace? I hope you get the answers you are looking for. We all want the best for your family.

[RugbyLaura]

Thought it was better to hold back a bit posting this as i did not want to unnerve anybody going for their checkups today. Gerbo, how typically caring of you; putting others first even when you're feeling so low. I'm sorry things are not as you'd hope. I have no practical advice as I'm new to all this, I feel bad about that as you have been so strong for me.

I was not inclined to post, thinking it insensitive, but you have persuaded me, so here goes...

Not the most informative of visits, but very pleasant. Mr Mills does not do xrays at follow up, only at 6 monthly intervals. Inbetween he uses various measurements to give him a picture of what's going on. Only if these look worrying will he ask for xrays. He tightened the brace & said all looks fine. I had a peek at his records & last visit thoracic rotation was 10 out of brace & 7 in, lumber 6 out can't remember in & "shift" (alignment of top & bottom of spine) was 15 for both. This time thoracic was 11 & 8, lumber 3 & 0 and shift 0 & 0. He seemd to thing this was all good news & said that her initial correction was "better than average". The one thing that he found very odd was that she's grown 1.5cm in a month!! He had to re-measure her & said that sort of growth was not possible, particularly in a child of Imogen's stage of growth. He said it must be to do with posture.

Gerbo, what is a q-scan?

Laura

[Celia]

Gerbo,

This is very serious! I would rethink your strategy and perhaps pay a visit to that remarkable orthotist in Germany that many speak of? Another option as it appears she is in the midst of very rapid growth is to put her in a corrective EDF cast ASAP and hopefully get some permanent correction during this period of growth????? I honestly don't know if it's possible to get this with an adolescent but its worth a try :confused: At the very least it will prevent further progression during this volatile period. I know Dr. Mehta did this with many of her patients. I believe casting is still very common in France and perhaps even in England to some extent. Once that phase is over perhaps the Spinecor would help. I do recall and I'm sure you remember the study by Weiss which showed that adolescent children going through the period of rapid growth did not fare well with the Spinecor and we all attributed this to the fact that he wasn't properly trained??? Another alternative is to get a consult with drs Coillard and Rivard since they know their brace better than anyone else and would give you an honest prognosis. I really don't want you to go down that too familiar road. It would crush a lot of us!


Laura,

We had an x-ray at our one month followup. It sounds encouraging that her posture has improved if that kind of growth is not common???

[mpj]

Gerbo,

I am sorry to hear about your appointment. I hope Dr. Rivard and Mr. Mills can come up with a new strategy for your daughter to try.

I too was wondering what a "q-scan" is.

We will keep you in our prayers that your next visit is more reassuring.


Swimming:

Does time swimming in a pool count towards "out of brace time", or is it still considered "in brace time?" With the hot summer, Madeline has been spending a lot of time in the pool, and I am afraid we have exceeded our four hours out of brace several days this summer because of it.

Thanks for the info.

Sarah

[pat]

Gerbo, I read your post, I feel for you. I don't understand this whole scoliosis thing, and I can only think, as I've been told by doctors, that some curves are just pre-determined to do what they're going to do, no matter what you do. Progress or do nothing. And I would still, no matter our outcome, rather have had my child in the Spinecor/soft brace this last year and half.

I've been told swimming is considered "time in brace," if they're truly swimming, doing laps, not playing/standing in the water.

p

[momw/scoli]

Hi! I'm new to this forum.
My daughter is getting a boston brace next week and a second opinion with Dr. Marco in Houston to discuss the possibilities of a spinecor in Sept. I found that there was a 45%-49% chance the boston brace would work because my 12 year old daughter has curves of 36l and 38t. Does anyone know the stats of the spinecor? It looks great for kids with curves below 30. What about kids with bigger curves. Is it worth the time and money to travel to Houston? I live in Texas but, a long way from Houston. I'm not a big fan of rigid bracing, but surgery is scary! Is anyone having luck with the Spinecor in Houston?
Thanks,
Becky

[cherylplinder]

I have been pondering the lack of use for casting for adolescents all week, not just after your post, Gerbo. I don't understand.
I am fairly certain that Celia's Dr. Hedden did this with his adolescent patients to get their curves corrected enough for bracing, if I understood her correctly. Does anyone know why this is not common practice in the U.S.?

I was reading your discussion on casting this week, Celia, and once again, found myself wondering about the application to AIS or Juvenile, also.

[MATJESNIC]

Cheryl,

I have often thought about this, as well. Do you think that it is a compliance and psychological issue? Most teens don't want to wear a hard brace because of comfort, looks, clothes not fitting over the brace. We know of some who just can't do it. At least if they do wear it, they know they can take it off for proms, other social parties, special sports activities, etc. With a cast, you can't take it off. So maybe asking a little child to wear it would not have the same affect socially as asking a teen to wear a cast. No showering, no dance classes, no sports, etc. for years. It would probably be thought of as unacceptable for many. Gerbo's daughter is a ballet dancer. From what he has said, she is also a very good dancer. If she were in a brace that she could remove, she could take it off for her classes and performances. No way could she do ballet in a cast. So she would have to give up ballet for the next few years. To teens, a few years seems like an eternity.
I could be wrong about this because I know nothing about casting. Maybe someone else could shed some light.

[RugbyLaura]

Lisanna is an exceptional dancer. For her age one of the best in the country. She has a career in ballet ahead of her if this is what she wants. I hope you won't mind me saying this Gerbo, if you do I will edit it out!

I know that it's very important that all of our children receive the best treatment, but I can understand too why this must hit their family particularly hard. I really don't know much about casting but I imagine that if a short period of time in a cast could guarantee a positive result, we would all jump at it. For such a talented dancer, a short period of time off would not be too detrimental to her prospects - however heartbreaking at the time. But is it an option??

[mariaf]

Cheryl,

I have often thought about this, as well. Do you think that it is a compliance and psychological issue? Most teens don't want to wear a hard brace because of comfort, looks, clothes not fitting over the brace. We know of some who just can't do it. At least if they do wear it, they know they can take it off for proms, other social parties, special sports activities, etc. With a cast, you can't take it off. So maybe asking a little child to wear it would not have the same affect socially as asking a teen to wear a cast. No showering, no dance classes, no sports, etc. for years. It would probably be thought of as unacceptable for many. Gerbo's daughter is a ballet dancer. From what he has said, she is also a very good dancer. If she were in a brace that she could remove, she could take it off for her classes and performances. No way could she do ballet in a cast. So she would have to give up ballet for the next few years. To teens, a few years seems like an eternity.
I could be wrong about this because I know nothing about casting. Maybe someone else could shed some light.

Melissa,

I know nothing about casting either, other than what I have read, but you and I sure have had many discussions regarding teenagers :)

Having two teens myself, and judging by their attitudes and feelings, as well as that of their friends, I think you are right on the money.

To teens, a few years - or even months - DOES seem like an eternity. My daughter cried because she had to wear braces on her teeth (with the worst thing known to man :rolleyes: - rubberbands no less!) to high school. She told me I was ruining her life. OK, she's a drama queen (LOL), but in my years of experience raising teens, I have found that the worst thing - in their minds - is anything that makes them feel different in any way from their peers.

Perhaps parents of younger kids wouldn't know this to be true, but I'm sure that most anyone who has raised teenagers can understand exactly what you are saying.

Once again, I'm thrilled Nicole's MRI was fine and she's in my thoughts and prayers always.

Gerbo,

Your daughter, as well as Nicole, is in my thoughts and prayers. I hope it all turns out better than you are now imagining. As parents, we all worry about the worst case scenario. I know how awful it feels not to get the results you were hoping for and my heart goes out to you.

[Celia]

I know a little about casting and the EDF casts are *very* nonrestrictive with *enormous* cutouts in the front to allow for rib cage expansion and cutouts in the back to allow for ribcage molding. Surprisingly range of movement is not a problem as one would think! Only an expert doctor would know how much time is necessary in these casts given that Lisanna's curve is still manageable and under 30 degrees - I wouldn't go and say that it's two years!!! :eek: If Gerbo should decide to follow this route - try to go to the hospital in France where dr. Cotrel practiced as I'm sure they wouldn't give you a hard time with this decision. I recall reading that the very beautiful Renee Russo wore casts as a teenager for her scoliosis and avoided surgery. I don't think one can even tell she has a deformity. Here is a picture of her back.... She doesn't look in the least bit psychologically traumatized :D


http://i41.photobucket.com/albums/e251/sealy25/rene-russo-picture-1.jpg

[MATJESNIC]

Nobody has ever offered a cast to us. Is it not done at all for older kids in the United States? I would choose that if it were short-term and if it had a good chance of avoiding spinal fusion. I believe the hard braces were custom made in the past more than they are now. Remember the book Deenie. It was fiction, but that was how the braces were made then and they were probably more effective than they are now.

[cherylplinder]

I know my thinking is different than most. I considered casting from the start. I see every difficulty I have ever been through as something that strengthened me.

But, I think surgery is radical.

I am under the impression that because they can do some traction and derotation on the Risser-Cotrell frames(don't know if I have the apparatus named correctly in this post), that better correction can be achieved. They can also make a cast that goes over the shoulder to give added correction to a thoracic curve, if I am not mistaken. I would think they could use the same techniques they use for infantile, even traction for a period of time to allow for more correction. I know teens would hate it, but I have heard of more than one report(albeit second hand) where true correction was achieved with casting in adolescents. It seems it might be at least presented as an option. I tried to find articles last year on this, but was unsuccessful. I probably was not using the right avenue for research.

[arairdon]

I'm not very good at posting, but thought I should add something here. My daughter had a cast from September of last year until April. Her curve prior to the cast was in the 40's. In the cast it came down to the 20's. She has been back in the spinecor since April and her curve in brace at that time was 33. She is 9. She tolerated the cast very well, but was relieved to be back in the spinecor now. She continued to take jazz class, but did not continue with ballet. She even rode her horse with the cast.

My daughter has had scoliosis since she was an infant and wore a hard brace for 5 years. This was the first time casting had ever been mentioned. She may go back in a cast again this fall.

Ann Rairdon

[Celia]

Yes! Dr. Rivard cast Ann's daughter even though she had been in the Spinecor brace for quite some time and obviously saw the curve progressing. He told me in the very beginning that if Deirdre's curve progressed that he wouldn't hesitate to put her in a cast.

[MATJESNIC]

Of course, it is ridiculous for me to live in the past. But I am wondering why nobody ever suggested casting for Nicole. I am hoping that if it were an option that Dr. Rivard would have suggested it. I wonder if it is for kids who have a lot of growth left, not just 5 inches as was the case with Nicole. When we saw Dr. Rivard, Nicole had just had her period.

When Nicole was diagnosed at age 11 1/2 she had a 40 degree curve and was about 5 feet tall. Now 2 years later she has two curves around the 50 degree mark and is 5'5 1/2" Don't know why I am rambling on like this. I guess I am just saying she never had a huge amount of growth after diagnosis because she got her period 8 months later.

[cherylplinder]

Melissa,

I, for sure, don't know. Dr. Sanders ruled out casting for Rachel in April of 2006 because she is a chunky kid. I don't know if he would have said something different if she had been skinny. At that time I didn't know if anything would work. He said nothing would, but he didn't have the option of a skinny kid... She had probably 9 or 10 inches of growth left at that time. She has grown 4 inches this year. I am thrilled to have had correction in the Spinecor. I hope that encourages someone. I guess it doesn't have to be a cast. On the other hand, if the Spinecor does not address your child, I would not rule casting out, if I could find someone that could offer that option with some success or a possibility of it...
Rachel is still chunky. I planned to make diet and exercise a priority this year and leave the option open for casting. I didn't achieve that. My mom has been really ill and I spent at least 6 or 8 months out of the last year helping them, I have a crazy house that we are adding to and remodeling, William has diabetes, we home schoool, I can't get all my ducks lined up. Nonetheless, God is good to me to have had the results we have had this year. If this next check up brings bad news, I am still grateful. Not that I won't be devastated. Avoiding surgery was as important to me as it is to any parent. I just don't know what I face next week and am always prepared for the worst. This is a crazy disease that as long as it has been around, has few parameters that can be measured to determine progression.

Hugs,

Cheryl

[MATJESNIC]

Cheryl,

I want the best for Rachel. I hope, as you do, that this is a good appt. I wish you all the best.

[Karen Ocker]

I usually have no business on this thread but I will add my experience as a "castee".

My original treatment in 1956/57 involved a series of casts with a turnbuckle/hinge apparatus attached to gradually straighten me. This cast encased part of my head down to one knee and the other hip. Every day my doctor would turn the thing gradually stretching my spine.

Once the maximum amount of correction was obtained a limited spinal fusion was performed through a hole in the back of the cast. NO HARDWARE was ever used those days. Six months after the fusion I was placed in a smaller cast and 4 months after that a "walking" cast. I was totally bedridden that whole year and had to learn to walk again. One would think all that casting would really do it... plus the fusion yet. The correction was disappointing and I still had a significant rib hump. :mad: And surgery those days was far more dangerous than now.

My age 59 I had ended up with curves of C30/T80/L40 needing a revision.

The cast was very hot and smelly. My mom had to change the stockinette frequently but the plaster really smelled. The plaster now is probably better.

Casting may immobilize very well but in my case my spine was marching to its own drummer.

In my case the decision, those days, to intervene was based on skeletal maturity looking at the iliac crests for a ridge. Supposidly the curves would have stopped so that the unfused portion would not curve(it did).

Despite all that I've lived a relatively painfree(until my 50s), productive life becoming a registered nurse and later nurse-anesthetist.

My children (adopted) did not develop scoliosis but If I had a child facing progressive curves despite a reasonable try at bracing I would not wait for it to get worse but would not hesitate to go the surgical route---finding the best surgeon/facilities around-- from what I have seen and experienced.

[Karen Ocker]

Here are 3 abstracts from the National Librarary of Medicine:


http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17513955&ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum



http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=14571942&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum


http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=14589197&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum

[Olivia'smother]

Gerbo - I am fairly new at the beginning of my journey with my daughter and don't have any practical advice to give, but please know you are in my thoughts. Your daughter is so lucky to have such concerned parents doing their very best for her. As you have been so kind and supportive to everyone, I thought it important to let you know you are in our prayers. ;)
Amy

[cherylplinder]

Karen,
Thank you for the abstracts and your input. I know I speak for all of us when I say that I am grateful that sugery is an option when bracing fails. What a relief to know that excellent treatment is available no matter which way it goes.
I really appreciate all of you and your support. I know I say it pretty frequently, but frequently I feel a tearful joy at your presence, concern, and support! This would all be really hard without you. You make me feel blessed.
Hugs to all!
Cheryl

[MATJESNIC]

Karen,

I am also very appreciative of your posts. Thanks so much for sharing. In my wildest dreams I never thought I could ever accept Nicole having a spinal fusion. But here I am, with little choice but to accept it. Thank God these surgeries have come a long way and I see many examples of happy and healthy teens who have come through with flying colors. Do I wish Nicole didn't have to go through this. Obviously, yes. But I have to believe that everything will end up being okay. Thank you to all of you who have helped me every day so that my husband and I don't feel so alone. You give me strength and then I am strong for him when he needs my strength. You are all a blessing.

[emarismom]

Gerbo,

My thoughts and prayers are with you as you continue to look for the
best treatment for your daughter.

We are all very lucky to have surgery as a final option should it ever come to
that. At least we know that should all our efforts fail, surgery will be able to
provide these children with a good quality of life. Of course, God willing, some of us may be able to avoid it, and if we can't, as least we as parents can HONESTLY say we tried everything.

Emily's first follow up is this Friday, my nerves are now beginning to peak.
At least there are others who understand this.

[RugbyLaura]

Good luck to Rachel & Emily, our thoughts are with you & we're looking forward to hearing that everything went well. Michelle - We found the follow up appointment to be a bit of an anti-climax as, after weeks of looking forward to it, not much was said. It was reasonably possitive but because there were no x-rays it doesn't stop the worrying - I suppose we have years of worrying ahead.

Celia - If you manage to get to an internet cafe, I hope you're all having an amazing holiday!

[cherylplinder]

Michelle,
God bless this week. Hugs from here.
Cheryl

[gerbo]

thank you all for saying nice things whilst we are digesting our situation and working out what to do next. It does help!!

Back to business

q-scan; it is an optical assesment system, which works with light beams to creaTE AN IMPRESSION OF THE SURFACE ANATOMY, this article shows what the image looks like; http://www.rsmpress.co.uk/S43_18.pdf and this one http://proceedings.jbjs.org.uk/cgi/content/abstract/88-B/SUPP_II/228-c indicates how useful it is.

casting/ hard braces etc; If lisanna was a passive subject happy to undergo anything we throw at her; yes we would consider this. However; her initial emotional response to a hardbrace (she had one for 12/12) was so negative and intense, that i do not want to go there, unless we feel we have no choice. If anything, Id travel to germany where in a certain clinic they appear to be practicing very aggressive bracing (literally pushing for lots of correction), but i'd only do that if lisanna would agree.

For now we

1) keep on hoping that this was a once off, related to measurement variation, (using computer measurements rather than by hand).
2) Without doubt we'll be seeing an osteopath soon (looking around to decide which one) for additional advice and treatment
3) await feedback dr rivard with regards to fitting of spinecor
4) thinking of an inversion table??? Have I gone mental?? Mad?? Don't know, I have always considered that considering that intermittend traction is a feature of the management of scoliosis an inversion table could be a good idea, never gone there as lisanna had enough on her plate already, however, with the slightly shifting situation, might need reconsidering. Anybody ever looked at this, tried it??? (might put it as a seperate thread, wonder what my friend structural would think of it)

Evberybody going for the dreaded review; wish you lots of strength; and all of you; thanks for being around!!

gerbo

[alabama mom]

Hi everyone. I just wanted to wish you ALL good luck. I am hoping and praying that we all have a good outcome.
I would also like to know if anyone else feels like some of the straps of the spinecor have gotten looser? I have definately been worrying about this. I feel like I need to go back and see the doctors sooner, just for them to check this out. I really wish it was not so far away!
Nancy

[cherylplinder]

Nancy,
Call and describe which straps have become loose. They can help you adjust over the phone sometimes. They have helped me tighten over the phone before. I ordered a scoliometer from this NSF website so I could check rotation. Which straps are loose?
I don't like loose straps, either. I made the mistake of waiting with loose straps for a couple of months. Our first followup was 3 months instead of 1 month. I would not wait again. I guess no harm was done, but her rotation in brace went from 0 to 5 or 6 at the next visit with the straps loose. I could visibly see the difference, it was not just at measurement error. When they first put the brace on her, it completely corrected her rotation. Her back was flat when she bent over. I know 5 to 7 is not bad, it is just not as good as 0.
Another thing I have done is move up my appointment. Protocol is every three months, but they do like every 5 or 6. One time, I moved it up a couple of months, going in April and August. I just told them I felt like she needed to be checked. You could do either one. You went in May, you could go again in August.
Hugs,
Cheryl

[cherylplinder]

I just checked the weather for Montreal for this week. The high is in the middle 70's and lows around 60. I am looking forward to going!

Anyone that travels to Montreal, what are your favorite places to visit in the city?

Rachel and I are taking one extra day for sight seeing this time. I don't think we have ever done that before.

[MATJESNIC]

Gerbo,

Would you be willing to explore the Schroth clinic in England or Germany?

[christine2]

HI everyone

My daughter has been getting muscle spasms in her neck. Today I took her to a Physical therapist that is experienced in treatment of scoliosis. I was reluctant at 1st. Dr. Rivard is cautious about too much spine malipulation. It was very interesting. He was able to determine that my daughter has functional scoliosis which means without gravity he was able to straighten her spine with a little traction. (great news) He did a little stretching of her muscles and also some traction (using his hands). He said that traction is the best treatment for her that we can (along with bracing) teach her body to be straight. I was very impressed. My daughter said she felt "GREAT" after her appointment. The RPT wanted to do some work on her lower back but because I was so cautious said he would talk to Dr. Rivard for me. Apparently he studied in Canada for 2 years. And said that their approach to medicine was much different than in the US.

My Plan: Get the RPT report and give it to Dr. Rivard when we see him in August.

Get the therapist and Dr. Rivard together via phone after I put a bug in Dr. Rivards ear about the therapy. I think they would compliment each other rather nicely so we can get the best treatment.

If anything we can reduce the spasms and tension in her little back so the brace can do thge best possible job. Those spasms are very painful I know I get them frequently too.

Gerbo
I am not sure what the definition of a Ostepath is. I would give an educated quess that it uses homepathic approaches. Would that include physical therapy?


P.S. We met our puppy this weekend. She is BEAUTIFUL!! we will pick her up on our way back from Montreal 2nd week of August.


Christine

[gerbo]

melissa (always so pleased that you still visit us on "our forum"), there is no serious schroth clinic in the UK, when i asked on a german forum about the german clinic i was advised that they would recommend a good brace prior to going to the schroth clinic. I think that the evidence for its effectiveness isn't that strong and it could turn out to be a lot of effort for little benefit. Whether i think different if things are worse next time; i do not know yet.

christine; osteopaths are as far as i know manipulators of spines, so might be similar to your physical therapist. Nothing to do with homeopaths, which is the biggest con ever, selling diluted water to cure every illness known to mankind (now, i hope you are not a homeopath in your spare time)

gerbo

[christine2]

Gerbo

I am not a homepath in my spare time (what are you trying to avoid a arguement? Ha Ha) although I do believe that there is a place for homepathic remedys combined with modern Medicine. For example being a dog trainer/behaviorist I prefer to have my customers try all natural foods to help to cure skin alergys, ear infections, behavior issues before trying cortisone or prozac type meds. I also push flower essence remedys for anxiety (thunderstorm, seperation anxiety) before going the tranqulizer route.

I believe that there needs to be a balance. It must be easy for people to go overboard when it come to natural remedys. (hope that did not cause too much debate)

[MATJESNIC]

Gerbo,

Once a Spinecor user, always a Spinecor user. In fact, our surgeon, Dr. Dormans is a friend of Dr. Rivard and he said maybe Nicole will wear the Spinecor while dancing after her surgery. It will remind her about her boundaries. So we are still hanging on to our brace. No regrets.

[RugbyLaura]

Ahhhh. The q-scan is what Mr Mills used to measure the "shift". Imogen's was 15 (15 whats I don't know) at the first fitting and 0 at follow up. Must be a good thing? Although my paranoia tells me that he didn't measure it consistantly as it was sitting on a chair (not very scientific?).

Glad to have you back Gerbo, you sound much more positive. What did Mr Cole have to say? Did he seem concerned by the apparent change?

[cherylplinder]

Ailea,
Your inbox is full. I sent you an e-mail, but I don't know if I have the address right.
Send me your e-mail address again and empty your inbox.
Hugs!
Cheryl

[Olivia'smother]

Gerbo,

Not sure that I have any information to actually help you, but I have an inversion table and our daughter does use it. It was originally purchased for my husband who is a general contractor and suffers from serious back pain. It helps him tremendously by taking pressure off the spine. Our chiropractor told us that it might benefit Olivia and we were prepared to use it several months ago. But, I asked our former osteopath and he told us not to becuase in his opinion nothing would help her anyway. We listened to the osteopath.

We have recently amended our previous decision and have decided to try it in an effort to be more proactive. I do not believe it is going to hurt her, and she likes it. She only stays inverted as long as is comfortable for her (that is what the chiropracter had originally told us to do for my husband). I am planning on discussing it with Dr. Rivard when we meet in Montreal, but for now I will continue.

Again, good luck! :)
Amy

[Carly's Mom]

Carly's Mom,

What are your daughter's curves?

Caroline,

Dr. Rivard is right. If the curves start progressing, you will know. Nicole's curves were basically 34 in the brace for about a year. Five months later, it was 48 in the brace. Since she was getting a 10 degree correction up until this point, our biggest fear was that her curve was now 58 without the brace. But thankfully we found out that her curve was now 52 without the brace. (I told you 55, but CHOP measured it at 52. I like that better!!!!)
This means that Nicole went up from 44 to 52 in 5 months and the brace was no longer giving her more than a 4 degree correction.

You will know. Trust them. But I hope you never know of that. It is such a sinking feeling.

Olivia's Mom,

I am thrilled that you finally talked to Dr. Rivard and are seeing him. I wish all of you the best of luck.


Carly's curve is now 35. It was 32, 4 months ago.

[RugbyLaura]

Carly's Mom - Our consultant would not see 3 degrees as progression. Imogen's last x-ray showed 38 degrees in June following 32 degrees in March, he said that this could be down to "measurement error". A bit strange as he measured both! Somehow Immy has crept from 28 degrees in November to 38 in June without anyone accepting that this curve is definately progressing. Anyway, what I'm trying to say is that 3 degrees is well within the margin of error, but I understand how frustrating this is.

The good thing is that Carly is nearly finished growing and so the curve should not progress much more. If Imogen ended up with a curve under 40 I would be ecstatic!

Good luck,

Laura

[emarismom]

Laura,

Most doctors seem to say that the margin of error is 5 degrees. However,
last August Emily's ortho read her xray at 17 degrees, six months later he read it at 23 degrees. He concluded that the curve was unchanged, yet told me to come back in 4 months instead of 6 months. So was he "sure" that the curve was not progressing, thus willing to let her go for four months to see what happens or was he "unsure" as to whether she was progressing, so erring on the side of caution by having us come in sooner. Her other ortho, also has maintained that there is no progression (Yes, I do see two, about every six months-and I bring the xrays from one to the other-You can bet that they love me). Neither of them saw any need for bracing, nor any need for the Spinecor. Nor do they know about it yet. I plan on taking my next xray-hopefully with a VERY small curve to show both of them.

What I'm trying to say is that even though the doctors claim that progression
is anything over 5 degrees, they don't seem to act on that. Noone will suggest anything but waitng and watching for Emily until she is at least at 25 degrees. They further have told me repeatedly that no curve will progress more than 1 degree per month. So more than 6 degrees in 6 months is impossible according to them. However, I have seen NUMEROUS cases here where curves have progressed much quicker than one degree per month.
They do not seem to be as hung up on the numbers as we are.

[RugbyLaura]

Michelle - I would do exactly the same thing in your position. I only wish that we had caught this curve earlier. Thanks for your comments :D

[cherylplinder]

Hi all!
Rachel`s curve has progressed since our last visit. She is now 26 thoracic and 26 lumbar. It looks very different on x-ray to me, also. I don`t believe it could be just measurement error. Nonetheless, I agree with Dr. Rivard, her curve would at least be in the 60`s without the Spinecor, by now. I don`t think the Milwaukee brace would have offered her more. I have never seen where one of those produced any correction at all. I could see that he was visibly saddened to have to tell me there was any progression. He is such a lovely man! Dr. Coillard was wonderful as well. I love them both.

I asked about the x-rays. They are only PA and lateral and only include the spine. They are not whole body, 360 degrees. The exposure is 10% of regular. They did use the sheild for the ovaries,but feel the breast shield often covers some of the spine in scoliosis patients. THe explanation was satisfactory, I felt.

I asked Dr. Coillard why she didn`t recommend osteopaths. SHe said they are good for pain, but there has been no evidence that they can help a curve. I meant to ask what she thought held these stubborn curves in place but couldn`t remember anything else, even though I knew I had some questions. If anyone is going soon, ask them for me. I may e-mail. I don`t know if they have the time.


It made me sad to post. I know you are all disappointed, but keep up the good fight!

Much love!
Cheryl

[mariaf]

Cheryl,

I know that even a few degrees progression is disappointing, believe me. But 26 is still relatively small and less than it was when she started with the brace.

David's curve has always fluctuated a bit - up 4 degrees one visit, down 6 the next, etc. I was told it means his spine is somewhat flexible.

Stay strong - she has a few more years of growing left to so and you are still not near surgery levels :)

[gerbo]

cheryl, I know what you feel like, this deflated feeling is terrible. I am sure you find strength somewhere, as you always seem to do, to keep fighting, and yes, it could have been so much worse.

gerbo

[cherylplinder]

Thanks my friends,
You always do seem to find the appropriate words.
Cheryl

[MATJESNIC]

Cheryl,

Hang in there. We all can only do so much. There is a lot out of our control. Any idea how much correction she is getting and how much her curves are measuring without the brace?

[cherylplinder]

No, I don`t know if her curve without the brace has progressed. I know you have to go a while out of brace to get an accurate measurement. I don`t want to do that. We are hanging in there!

[RugbyLaura]

Cheryl,

I have sent you a private message. So sorry to hear about the change. Did Dr Rivard have any opinion on what might happen from here?

Maria is right, 26 is so much smaller than it was when Rachel started with Spinecor! You have been such a help to me, I wish I could say more to help you. :(

Imogen woke up with a temperature of 103.2 this morning. Have got it down to 101.2 using Calpol & sponging. Poor little thing is so upset as it's the last day of the school year & should have been a great day!

[RugbyLaura]

Michelle, hope all goes well for Emily today.

[emarismom]

Laura,

Thank you for you thoughts. Our appointment is at 9:00 am (est). I didn't
sleep to well as I'm sure most of you understand. I'll write as soon as we get back home.

Michelle

[emarismom]

Hi everyone,

Well our appointment went very well. Emily's curve is now at 14 degrees in brace. Her rotation is at 6 degrees. The doctor noticed a considerable improvement in her posture. So overall it went very well. We will again go back in 6 weeks for another follow up.

[gerbo]

:D thank god for some good news!! congratulations, you must feel so relieved :D

[gerbo]

are you OK cheryl? strictly speaking it wasn't that bad, or was it? You were kind of expecting it? Just this sense that the "control over events" you had before seems to be gone which makes you feel so much more insecure about what might happen or not happen next. (just describing my own feelings here)

maybe we all are a bit to obsessed with this scoliosis thing and need to chill a bit and accept that we cannot have control over everything and that there is life after or next to scoliosis as well....., but it can be hard...... (specially for control freaks as we all seem to be)

gerbo

[RugbyLaura]

Great news Michelle!

Gerbo, you're so right, we should try to chill. It's just so hard....

[emarismom]

Me a control freak :eek: No way :eek: I'm so calm and easy going and I'm just willing to take things one day at a time ;) Just ask my two orthos and chiropractor :confused: :confused:

I am relieved and I have to say that the news from this forum this week has really had my spirits a little low. I was extra nervous about today!! I just want all of these girls (and boys) to have their backs straighten out NOW!

[Kalarasy]

My son's curve increased too from 3 degrees to 9 degrees this wendesday. He looks thar he has a good posture but the curve is progressing. Dr. Rivard said that the curve goes up and down, he grew up 3 cm, too. He said that also it might be the new x-ray machine but I could see he is worse than last time. He didn't adjust the brace at all. I don't know what to do next time, it is getting very expensive for us to go to Montreal. Dr Rivard sugested somebody in Chicago or California. California wil be closer to us, but I don;t know if they will have enough experience. We live in Oregon and travel 7hours with the airplane.

[cherylplinder]

Hey Gerbo,
Yes, I`m O.K. It`s just that she had not progressed for a year. I hoped she would not progress again. I even hope for more correction(eternal optimist, half glass full kind of girl, my friends call me Pollyanna.) Last visit, Dr. Rivard did not consider 22 from 20 progression, and neither did I. But she is now up to 26 from 20 in August of 2006. That is significant to me. Would have been nice to hold, very secure, think you know what to expect now kind of thing. The difference on x-ray looked impressive, if you could see the comparison between the 20-18 curve and 26-26 curve. This means we haven`t got this beat and still could progress to surgery. It`s definitely a disappointment.
By the time this appointment arrived, she looked pretty good to me. I convinced myself that what I thought I was seeing a couple of weeks ago was my imagination. Oh well! As I say, it`s a lot better than the 60 degrees Dr. Rivard says she would have been otherwise. I think she would have hit 60 in anything else long ago. I don`t think a Milwaukee would have given her any correction and Dr. Sanders didn`t think anything would even hold her, so

I still have absolutely no regrets with Spinecor. The Milwaukee wouldn`t have offered any correction and, according to Dr. Sanders, no possiblity of holding her either. He told me to get surgery when her curves reached the 60`s. He felt that would happen before she finished growing. Dr. Rivard said yesterday that she would already be in the 60`s otherwise, also, maybe more.


I`m still counting my blessings (but planning my strategy!)





Hugs and love to all,
Cheryl

[MATJESNIC]

Cheryl,

I know how you feel. I wished for my birthday that Nicole stayed the same and that her risser was at least a 4. Well, we all know how that turned out. I have no regrets. At least you know you are doing all that you can. Whatever is beyond our control, will be just that. Thank goodness our girls are comfortable in their brace. It is still not too late to hold onto hope for Rachel. She is still at a low number. Everything will be okay.


Change of subject here. Just got back from seeing Hairspray and it was wonderful. A few years ago we took our girls in to N.Y. and their first Broadway show was Hairspray. Very upbeat and fun!!

[summerfun4]

Just wanted to post an update, since I haven't in a while. It's so hard waiting for the appointments, not knowing which way it will go. I'm so sorry to hear about everyone's progressions this past week. I've been keeping up with everyone, just haven't posted in a while.

We were fortunate with my six-year old daughter's appointment this week, who after 4 months is down to 6.5 from her original 30 degree curve. We were thrilled for her, and then I had Dr. Pappas check my 12-year old. Unfortunately she has a 39 degree curve, identical to my 6-year old's, and she is a risser 3. So now we will be bracing her in August. At least this time through we know what to expect, but it will be much more difficult in other ways, since middle school is such a nasty time. Plus she's so much older, more rigid, so close to 50, and no where near as flexible as my younger daughter.

What really frustrates me is that we started watching my younger daughter because my pediatrician was monitoring my older one every 6 months, but saw no reason for concern (saw a slight rib hump at her fifth grade physical). The last 6 months we've been in an emotional rollercoaster with my younger one, and I figured I'd have Dr. Pappas check my older one, rather than the pediatrician. I am so upset, because this could have been caught so much earlier. :mad:

It's obviously hereditary, but neither my husband nor I can find anyone in the family with it. I am now an avid spokesperson, asking everyone to check their children, and if they notice anything, no matter how small, to get it checked by xray. I didn't know, 2 years ago, that all the scoliometer tells you is rotation. He told me her "curve" was only 3 or 4, no cause for concern. This was her rotation, not her curve! :mad: Who knows what the curve was.

Sorry I'm venting. I just can't believe we could have addressed this these past 2 years. Hopefully we have time to at least stop it, if not correct it. I'd love to give our doctor a piece of my mind..... :p

Hope everyone has a good weekend. We're trying to begin planning for a school year with our two daughters in braces.

Thanks for listening,
Linda

[christine2]

Adriana
I just read your post about your follow up. My daughter also went up at one of the visits but then went down at the next. It seems to me the the curve at this point is very small compared to the origenal 31 degrees. This is a good thing especially at 9 yrs old. I also tried to come up with a solution to find a closer Dr. but my husband and I agreed that with the results we are getting with Dr. Coillard & Dr. Rivard not to make any changes. We have many years of bracing ahead of us. I personally feel that in the future the brace will begin to be more recognized here in the states. I think the docs are simply waiting for more studies. Then we may venture out to a closer Doctor.

[Celia]

Hey Gang,

Wow....I can't leave you guys for one week without all hell breaking loose??! :eek: :D

I now have the honourable distinction of hiking some very rugged terrain in my flip flops :p If one can't look fashionable and comfy at the same time, what's the point?! I did manage to take a break from my vacation last week to book the followup appointment in Montreal and it's scheduled for the second last week in August. Anyone else going to be there? Anyhoo....I must get back to the beach. On another note, the day before our vacation started the dreaded monthly curse arrived??? How unlucky can one get!

[Allegra]

wow i totally missed gerbo telling everyone to chill out.
that should lighten everyone up a bit hahaha

But it seems like everyone's back is getting worse right now. Am i just imagining things?
Has anyone heard of that circle of life thing where when you're at the top of the circle, you have good luck, and when you're at the bottom, you have bad luck. I don't really believe it, but it kind of seems like that.

Also, has anyone heard of Dr. Davind Gorrie? We went to see him about the Spinecor. He's in Irvine, CA and he's a chiropractor. My parents regard chiros as people who weren't smart enough to get into medical school, but he is the closest and didnt really try to persuade us either way.
The Spinecor actually doesn't seem that bad, although i'm sure you can still see it through clothes.

Just keeping everyone posted.

[Kalarasy]

My son had his x-ray with the new x-ray machine. I don't know if it is more accurate or no.

[cherylplinder]

I'm not sure what therapy you are pursuing. What is cranial sacral therapy? What kind of therapist?

[cherylplinder]

I researched your earlier posts. What did Dr. Rivard say?
As you say, if you're sure it isn't doing any harm and helps the spasms, I might continue. I have never had any back or neck spasms, but I understand they are quite painful.

[gerbo]

mmmhhh, wouldn't trust anybody who suggest they can cure scoliosis (which is the suggestion if they say they "work to get her out of brace") Still, if it feels good to your daughter, and you have no better ways to spend your money... (but than, I'd spend a fortune to make my daughter feel better)

[cherylplinder]

Thirty three to 5 is unheard of with any other brace. And Rachel may have progressed some, but she would have been in the sixties long ago without the Spinecor, the TLSO (BOston) didn't correct her at all, and I don't believe a Milwaukee could have even held her.
26/26 is bad in that it isn't the 20/20 neighborhood she has been in. It is progression, but look at the alternative.
Hang in there!

[gerbo]

ha, get our good friend structural involved!

Really, what you need to think about is this; what do you want any given treatment to actually do, and than from what you see, is it doing that or is it "likely" to do so (or possible) from what you see and based on that you decide whether it is worthwhile.

In practice; if you do this for symptom relief (muscle spasm) and you get symptom relief (your daughter feels better) than it is doing its job. But don't expect any moment it is going to cure the scoliosis as there is nothing to suggest that that kind of treatment will do that. And personally, as i said before, anybody who makes unrealistiuc promises should be looked at very sceptical!!!

Mind you, we are seeing an osteopath now "just in case", difference being; she says she doesn't know whether it will make any difference to scoliosis, only thing she promises to do is to "help to keep the spine mobile", and from what she does, and how lisanna feels after, i think she is as good as anybody in doing so.

33 to 5, sigh....... in a nice flexible young spine, outlook must be good. (but i understand and share your "anxieties")

[gerbo]

http://www.quackwatch.org/01QuackeryRelatedTopics/cranial.html

this gives you some flavour....... (might or might not be biassed, but worth reading)

[cherylplinder]

Sounds like maybe massage therapy would be cheaper and more effective for her neck spasms. I love a good massage.

[gerbo]

for all of us worried as to whether we are doing the right thing for our daughters/ sons; these 2 studies are as close as you'll get to a head to head comparison between hardbrace and spinecor

some comfort in the finding that outcomes in spinecor seem better!

i have the full articles, but haven't had time to read them yet, but will study them in detail over the weekend

gerbo


A Comparison of the Thoracolumbosacral Orthoses and Providence Orthosis in the Treatment of Adolescent Idiopathic Scoliosis: Results Using the New SRS Inclusion and Assessment Criteria for Bracing Studies.

Spine

Journal of Pediatric Orthopaedics. 27(4):369-374, June 2007.
Janicki, Joseph A. MD *+; Poe-Kochert, Connie RN, CNP *; Armstrong, Douglas G. MD *; Thompson, George H. MD *
Abstract:
This is a retrospective cohort study comparing the effectiveness of the thoracolumbosacral orthosis (TLSO) and the Providence orthosis in the treatment of adolescent idiopathic scoliosis (AIS) using the new Scoliosis Research Society (SRS) Committee on Bracing and Nonoperative Management inclusion and assessment criteria for bracing studies. These new criteria will make future studies comparable and more valid and accurate.

Methods: We have used a custom TLSO (duration, 22 hours/day) and the Providence orthosis (duration, 8-10 hours/night) to control progressive AIS curves. Only 83 of 160 patients met the new SRS inclusion criteria: age of 10 years and older at initiation of bracing; initial curve of 25 to 40 degrees; Risser sign 0 to 2; female; premenarcheal or less than 1 year past menarche; and no previous treatment. There were 48 patients in the TLSO group and 35 in the Providence group. The new SRS assessment criteria of effectiveness included the percentage of patients who had 5 degrees or less and 6 degrees or more of curve progression at maturity, the percentage of patients whose curve progressed beyond 45 degrees, the percentage of patients who had surgery recommended or undertaken, and a minimum of 2 years of follow-up beyond maturity in those patients who were thought to have been successfully treated. All patients are evaluated regardless of compliance (intent to treat).

Results: There were no significant differences in age at brace initiation, initial primary curve magnitude, sex, or initial Risser sign between the 2 groups. In the TLSO group, only 7 patients (15%) did not progress (<=5 degrees), whereas 41 patients (85%) progressed by 6 degrees or more, including the 30 patients whose curves exceeded 45 degrees. Thirty-eight patients (79%) required surgery. In the Providence group, 11 patients (31%) did not progress, whereas 24 patients (69%) progressed by 6 degrees or more, including 15 patients whose curves exceeded 45 degrees. Twenty-one patients (60%) required surgery. However, when the initial curve at initiation of bracing was 25 to 35 degrees, the results improved. Five (15%) of 34 patients in the TLSO group and 10 (42%) of 24 patients in the Providence group did not progress, whereas 29 patients (85%) and 14 patients (58%), respectively, progressed by 6 degrees or more, and 26 patients (76%) and 11 patients (46%), respectively, required surgery.

Conclusions: Using the new SRS bracing criteria, the Providence orthosis was more effective for avoiding surgery and preventing curve progression when the primary initial curves at bracing was 35 degrees or less. However, the overall success of orthotic management for AIS in both groups was inferior to previous studies. Our results raise the question of the effectiveness of orthotic management in AIS and support the need for a multicenter, randomized study using these new criteria

and

Effectiveness of the SpineCor Brace Based on the New Standardized Criteria Proposed by the Scoliosis Research Society for Adolescent Idiopathic Scoliosis.

Spine

Journal of Pediatric Orthopaedics. 27(4):375-379, June 2007.
Coillard, Christine MD *; Vachon, Valerie MSc +; Circo, Alin B. MSc *; Beausejour, Marie MScA *; Rivard, Charles H. MD, FRCS(c), FAAOS, FACS *
Abstract:
The purpose of this prospective observational study was to evaluate the effectiveness of the Dynamic SpineCor brace for adolescent idiopathic scoliosis in accordance with the standardized criteria proposed by the Scoliosis Research Society Committee on Bracing and Nonoperative Management. They proposed these guidelines to make the comparison among studies more valid and reliable. From 1993 to 2006, 493 patients were treated using the SpineCor brace. Two hundred forty-nine patients met the criteria for inclusion, and 79 patients were still actively being treated. Overall, 170 patients have a definitive outcome. All girls were premenarchal or less than 1 year postmenarchal. Assessment of brace effectiveness included (1) percentage of patients who have 5 degrees or less curve progression, and percentage of patients who have 6 degrees or more progression; (2) percentage of patients who have been recommended/undergone surgery before skeletal maturity; (3) percentage of patients with curves exceeding 45 degrees at maturity (end of treatment); and (4) Two-year follow-up beyond maturity to determine the percentage of patients who subsequently underwent surgery. Successful treatment (correction, >5 degrees, or stabilization, +/-5 degrees) was achieved in 101 (59.4%) of the 170 patients from the time of the fitting of the SpineCor brace to the point in which it was discontinued. Thirty-nine immature patients (22.9%) required surgical fusion while receiving treatment. Two (1.2%) of 170 patients had curves exceeding 45 degrees at maturity. One mature patient (2.1%) required surgery within 2 years of follow-up beyond skeletal maturity. The conclusion drawn from these findings is that the SpineCor brace is effective for the treatment of adolescent idiopathic scoliosis. Moreover, positive outcomes are maintained after 2 years because 45 (95.7%) of 47 patients stabilized or corrected their end of bracing Cobb angle up to 2 years after bracing. Therapeutic study-investigating the results of treatment: level II.

:D :D

[Celia]

Gosh I really miss all of you! I think I'm going stir crazy in the great outdoors :D . I have never seen so many shades of lobster on people in my life!!!! Dierdre is going on average 6 hours without the brace each day and I'm hoping this won't have a negative impact on our followup appointment in a few weeks.

[Mom37]

Just wanted to say hello and thank all who have helped me through this journey. My daughter will have spinal fusion August 1st at Texas Scottish Rite Hospital for Children. I will try to post on the forum after when I can.

[MATJESNIC]

Mom37,

Good luck with your daughter's surgery. Please keep us posted. Please remind me of how old your daughter is and what her curves are. I remember you from a while back when we talked about the Spinecor. As you can see, my daughter is having her surgery a month after yours. Where do you live?

Celia, it is good to get away from the scoliosis topic for a while. Enjoy your vacation.