spinecor

[Celia]

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


Thanks for the tip ! I LOVE that colour :D :) :) :)

[cloggerx3]

well i guess everybody has their own opinion lol :)
where did you get the patient manual because i don't have one.
i didn't mean to upset anybody. :eek: i haven't been on like forever and i haven't read alll the postings. i just know we have been doing it this way since i got it which was 6 months ago. my dr. gets mad at me if i don't.well i guess everybody has their own opinion lol :)

[cherylplinder]

I bought one strap for 30 dollars. I assume that if you need a strap, you can buy one.
I don't think the manufacturer means for replacement parts to be as expensive as the original brace. I think we are paying in part for development of the brace, originally.
I think we should check before we stress too much.
I know one parent that had several sets of straps.
Hugs to all you sweet, wonderful, concerned, excellent, conscientious parents!

As an aside to straps, Rachel had a snap braeak off last night(Sat). I tied the strap to the base with a shoestring.( the sanp that came off left a hole in the strap) It worked very well. I didn't sleep last night for worrying what I was going to do this morning. She slept unbraced last night.
On Sunday, it is difficult to find a shoe repair store!
Thought I would pass on the tip!

[MATJESNIC]

Hi Everyone,

Lauren,
I am so happy to hear about your great curve reduction so far. That is awesome. I wonder if the straps wear out more easily on the kids with the big curves. Not sure if that makes sense.

It's funny to read everyone's post regarding sweating and smelling.
Celia, of course there is a big difference between a 5-year old and a teen in that department. I also don't find the straps smelling. Our biggest concern has been those darn thigh bands. The only way I ever felt them to look and smell clean is when I threw the entire bottom into a pillowcase into the washing machine. I am too afraid to detach them from the brace.
Although they were in good working condition, we bought new ones because Nicole hated the old ones.

Gerbo,
I'm glad that Lisanna did not progress.

Cheryl,
I hope Rachel is doing well.

Best regards,

Melissa

[Celia]

where did you get the patient manual because i don't have one. i didn't mean to upset anybody. :eek:

I got it the first day we went for the fitting. Don't worry, I don't upset easily :) :) :)

[Celia]

It's funny to read everyone's post regarding sweating and smelling. Celia, of course there is a big difference between a 5-year old and a teen in that department. I also don't find the straps smelling.

That's what I thought :p It would take a lot of layers of clothing for the perspiration to seep through to the elastic bands - I probably also have a lower threshold of what constitutes "stinky" after going through serial casting with my daughter for three years ! :D Better stinky and straight than crooked and sweet smelling :) :) :) :) It's ironic that the doctors are telling you to wash the elastic bands every week - it defies common sense and logic.

[BlueCrystalMan]

DEFINITELY wash the brace... we're living proof of that. It had loosened up over the past three months and Nick's shoulders got crooked again... but I was clueless... so we went in for the three month adjustment Tuesday and it just hung on him... and Dr. D made the adjustments anyway, but said it was imperative that it be washed... and washing made a TREMENDOUS difference. Just do it! If it ruins the brace, it HAS to be replaced under warranty... yes, WARRANTY. The one band was so stretched out (from not washing) that Dr. D overnighted me a replacement band... and he expected me to pay the $50 for it on our visit (yes, $50... ridiculous and overpriced if you ask me, but that's a whole other thread)... anyway, when we got down there, he said he would 'write it off as defective'...

Someone asked about Nick's progress... it was mixed this visit, which really upset me... but the cause wasn't the brace per se'... it was the fact that we didn't wash it in three months and it stretched out and it stopped doing its job. Once we washed it, his shoulders straightened right out again.

[Celia]

Oh man, now I'm really confused ! :eek:

[Mom37]

Oh man, now I'm really confused ! :eek:

Me too. Well we all agree to wash and we all know what the manual says. I am sorry if I upset you Celia. I would follow the manual to be on the safe side. My daughter is 12 and has one strap that wraps around her underarm and even with the bodysuit it creeps up the sleeve and gets dirty and the thigh and crotch straps do as well. It's probably a bigger issue for us as we have teens or preteens. I never got any verbal instructions other than it can be washed and read the page in the manual.

[Celia]

Don't worry about it. We all have to follow what we think is right, there are so many variables to all of this that thinking about it actually boggles the mind. We're all passionate about a certain course of action and we want to convince others of how right we are because we all care for each other and we don’t want anyone to fail. It’s good to talk about these things…..really !!

[cherylplinder]

Dear Blue Crystal,
Don't beat yourself up. You know I had some loose strap issues over the past 4 months, and decided that I won't let a loose strap go unattended again. It's hard to have any slip ups! I hope all goes well from now on.
Any time lost seems like a huge deal. I know that is how I feel and deal with it. Hugs to you.
Cheryl

[cherylplinder]

Hi Melissa,
Sorry I haven't posted about our visit yet. My computer has been down, and I'm waiting for a full second opinion evaluation before I decide where I stand.
Both visits were helpful. I'll give you a full report soon.
You are a sweetie to check on us and care.
What a great support group we have!

CloggerX,
I am so proud for your results!

Fondly,
Cheryl

[LATigner]

With respect to the "washing" discussion - I asked Andrew Mills when he checked my daughter's brace and said I had been putting the entire bottom portion in a lingerie bag and into the washing machine on warm and the dryer on delicate and he said it was no problem as long as the dryer had very low heat. I mentioned that the paper labels washed off but my daughter knew which straps went to the proper snaps. He said they are looking into a more permanent method of labeling the snaps on the plastic pieces. I also told him I washed the top the same way without taking it apart. My daughter's straps are fine after 4 months of washing it once a week and the drying does make the elastic portions tighten up. She doesn't need new straps yet but I can imagine we'll be replacing them before the next year is up. I think the brace gets diritier with a teen or older child as my daughter does not wear the body suits (makes it much hotter) so the brace is next to her skin. It is interesting though as when you dry other elastic things in the dryer it makes the elastic brittle over time. But if I didn't put it in the dryer it would be hard to get it back to her in a short time (of course that would be her preference )

[LATigner]

I noticed your post about your website and checked it out. Are you a certified Spinecor brace distributor? I noticed their dancer graphic on your site but you are not listed on the official SpineCor web site as a provider.

[sportsdoc]

I've completed phase 1 of accreditation and received permission from Mr Mills for uses of logos and name. I wouldn't dream of impinging on someone else's intellectual property...

I'll be added to the listing once phase 2 is completed.

Please give me some feedback on the web site. I've chosen to make it simple to load and easy to navegate over flash graphics...
My original intention was to design very pretty looking web site..
but then, that would've been useless..
i've just about ported entire web site from official spinecor site and am adding a lot more information as we go...as time permits...

This web site's intention is for spinecor users to be able to keep getting up to date information on scoliosis studies without hunting around for them in different sites...

I've obtained a copy of video of spinecor coverage in UK on TV...
will be putting that on shortly...

[LATigner]

Thanks for the info - great idea to put everything in one place. At times you have to be a diligent researcher of the net to try and locate things. That's one reason this forum is so awesome.

How long have you been treating scoliosis?

[sportsdoc]

although I have been trained in posture correction many years ago, I've never really delved into it until i've come across spinecor...I've been mostly into sports rehab...but my qualification really isn't an issue...

I'm mostly doing fitting only to start with...there's absolutely no way I could do rehab for every patients I see from all over the state...I'm mostly putting my energy on finding good scoli rehab docs who'll take over the rehab portion..realistically, driving more than 30 min wouldn't be in the best interest of patients...

As far as fitting the braces go, I'm making it avaiable on multiple sites..although in any given time most patients won't be more than 1-2 hour drive from my main clinic..with other fitting sites, they'll be less than 30 min from it making it easily accessible.

I have found excellent docs out in OC and LA region...and am continually looking to add more to the referral list...their qualification far exceeds what I could offer...

I will eventually offer more rehab services as time progresses...but I'd like to check out what's out there first...before incormporating any of my ideas...

[Celia]

I was wondering if anyone knew how often the elastic bands have to be replaced ? Is it once every year or less ? How does one know if the bands are due for a change ?

[MATJESNIC]

Celia,
I believe Nicole needed hers replaced after 5 or 6 months. I am wondering if it is because she dances in it 6 days a week, approx 12 hours a week. Plus she has 2 40 degree curves.

Melissa

[gerbo]

Oh man, now I'm really confused ! :eek:

has anybody ever suggested you might have a bit of a stubborn streak in you........ ;)

[Celia]

has anybody ever suggested you might have a bit of a stubborn streak in you........ ;)



Maybe just a wee bit. Actually come to think of it…. hubby and I never agree on anything but I always attributed this to his stubbornness. :p

O.K. so this is what I'm going to do - next follow up replace all 4 elastic bands ($120.00). My thinking is that if I only replace one elastic band the tension will not be uniform for all the bands. Also, with summer quickly approaching the bands will probably take a beating. So every six months replace the bands :confused:

[cherylplinder]

I would order the straps and wear them a few days before the adjustment so that they will already be stretched that bit they stretch before the adjustment.
Celia,
I have also noticed your stubborn streak and enjoy it very much!
I am very partial to stubborn people. tee hee hee! lol! :D :D
I have been giggling all week.
(No offense. I am extremely stubborn, too. Think it is an essential character trait!)

[gerbo]

Maybe just a wee bit. Actually come to think of it…. hubby and I never agree on anything but I always attributed this to his stubbornness. :p

I symphatise with your husband :rolleyes: :rolleyes:


O.K. so this is what I'm going to do - next follow up replace all 4 elastic bands ($120.00). My thinking is that if I only replace one elastic band the tension will not be uniform for all the bands. Also, with summer quickly approaching the bands will probably take a beating. So every six months replace the bands

if you are going to replace them anyway, why not just try washing them first, you're not going to lose anything anyway

PS, anybody with any affinity with huskydogs and polar environments (no names mentioned) who need a bit of a release of build up tension; go and see "8 below", an absolute fantastic emotional tearjerker produced by walt disney, "even" I could not keep my eyes dry in the end (which my children thought was hilarious)

[gerbo]

I am extremely stubborn, too. Think it is an essential character trait

agree fully (i.e. that it is essential, specially in "our" circumstances)

[Celia]

I symphatise with your husband :rolleyes: :rolleyes: ) .....PS, anybody with any affinity with huskydogs and polar environments (no names mentioned) who need a bit of a release of build up tension;


I’m usually the voice of reason in discussions with hubby ;) I'd also like to know how we went from discussing how I *might* be a wee bit stubborn to pent up tension? LOL !

[Celia]

I would order the straps and wear them a few days before the adjustment so that they will already be stretched that bit they stretch before the adjustment.

Cheryl,

I took your advice and I spoke to one of the assistants in Montreal this morning and I should have all four straps within a day ! It makes so much sense to get them now before the followup next month. :) I also don't tolerate loose straps - if I see a loose strap, I tighten it.


(No offense. I am extremely stubborn, too. Think it is an essential character trait!)

I think we're kindred spirits :)

[cherylplinder]

:D :D LOL!
It seems I ponder straps quite a bit these days! :D
Straps and life! :D

As an aside, my 16 year old applied to be a summer missionary (we are protestants) and was accepted. She is in many ways a typical teenager. Loves to do her hair and makeup! Loves to talk on the phone and computer! Loves to shop and go to the mall!
But she is really mature when it comes to important decisions. She has fielded a lot of peer pressure in the past couple of years and often stands alone.
This summer will give her focus on the important things in life. She sometimes lacks that in her preparation for her future.
There is a young lady from our church that is the missions director on site. Quite sensible and practical. She has been a wonderful influence on the younger girls in our church. I am excited that Sarah will be with her this summer.
She will be gone for 10 weeks. I can't believe it. I will miss her so much.

Hugs to all!
Cheryl

[sportsdoc]

:D :D LOL!
It seems I ponder straps quite a bit these days! :D
Straps and life! :D

As an aside, my 16 year old applied to be a summer missionary (we are protestants) and was accepted. She is in many ways a typical teenager. Loves to do her hair and makeup! Loves to talk on the phone and computer! Loves to shop and go to the mall!
But she is really mature when it comes to important decisions. She has fielded a lot of peer pressure in the past couple of years and often stands alone.
This summer will give her focus on the important things in life. She sometimes lacks that in her preparation for her future.
There is a young lady from our church that is the missions director on site. Quite sensible and practical. She has been a wonderful influence on the younger girls in our church. I am excited that Sarah will be with her this summer.
She will be gone for 10 weeks. I can't believe it. I will miss her so much.

Hugs to all!
Cheryl

I can't imagine what is't like raising teenaged daughter...
I have an almost 3year old girl and she's already displaying signs of weird adolescent teeanger's behavior..
I took my kids to see Ice Age 2 last night and they showed the preview of the movie RV where this 5'ish girl tells her dad..."dad I love you, when I grow up, I'm going to marry you"...then skip 10 years...robin williams is driving and in the rear seat the teenage daughter tells him, "dad, you are such a dork"...
and when he pulls in with his new RV, she yells.."Mom, some dork just pulled in hideous thing on our driveway and I think it's your husband"...

is it all that bad???

btw, where is your daughter going for the mission? we took our entire youth group out to Arizona last summer and they all came back crying...couldn't believe the kind of lives American Indians were leading...on US soil...

[cherylplinder]

Hi Sportsdoc!
Yeah, raising them is hair raising sometimes. We've had our moments when we didn't see eye to eye. Teenagers act like toddlers a lot. The same techniques are applicable for discipline and love. Take away some priveledges and don't lose your temper(ha! ha! easier said than done) I am a firm believer in spending time with them, even if they would prefer I didn't. After they've spent time doing something fun with you, they want to listen to what you have to say more. Love them a lot. Listen to them. Cross your fingers, and pray for them! She's doing well so far.
She does think I am totally unfashionable in my tastes. ( I think it could be called dorky) It's hilarious when we shop together. For the fun of it, I'll show her the ugliest thing I can find to see her reaction. She' s on to me, though. :D :D
She will be going to an inner city mission in Jacksonville, FL called Words to Works. She went a couple of years ago for one week to the same place. It was a life altering experience then, I think. Doing something that really makes a difference to someone. At that time they did day camps in parks, there are a lot of realy little kids (and older kids) with no supervision, nothing to do, and no one to care. They repackage reassayed medications for third world countries and packed refurbished medical equiqment for shipment to third world countries.They also did minor contruction projects for the elderly and needy. She will be doing the same thing this summer, just for a lot longer.

Enjoy yours while they are little. I miss those years!
Cheryl

[MATJESNIC]

Cheryl,

I think it is great that your daughter is going to have that awesome experience.

Teenagers can be challenging. My daughter is almost 16 and "I hate you" and other kinds of disrespect is sometimes an issue. She can be very difficult. Then she will turn around and do something totally sweet like burn me a cd of my favorite songs or teach herself something on the piano that she knows I really like.
My son is almost 18 and he has been such an easy, great kid. So it depends on the child.
My Nikki is now going through scoli, so she has an additional burden that they didn't have.
I agree that everyone should enjoy their little ones. I have always loved babies and little children. I miss that stage so much.
But I get to work with little ones every day as a teacher. So I feel so blessed.

God Bless all of our Children

Melissa

[MATJESNIC]

Karen,
Good for you. You're getting closer. I hope it all goes well.

Melissa

[gerbo]

preview of the movie RV where this 5'ish girl tells her dad..."dad I love you, when I grow up, I'm going to marry you"...then skip 10 years...robin williams is driving and in the rear seat the teenage daughter tells him, "dad, you are such a dork"...

this reminds me of a commercial they were showing about ten years ago in the UK where a dad throws his little child in the air and catches her again (as you do as a dad) but the last throw goes very high and when the child falls back she has suddenly grown to a 12 year old (message; life goes very quick, better take out our life insurance)

still, lisanna, my 12 year old still considers me for marriage, or at least a man"just like you dad" (isn't she sweet??)

my advice "sportsdoc" (have you got a name???); always stay friends, love them regardless of anything they do or say (it's never personal) always treat them as equal as possible, always take them serious, but always keep reasonable boundaries clear and teenage years might be as much fun as toddler time.

gerbo

[gerbo]

I'd also like to know how we went from discussing how I *might* be a wee bit stubborn to pent up tension? LOL !

dunno, my thought are just all over the place sometimes, :rolleyes: :rolleyes: still it was a lovely film (though deirdre might be a bit young for it, more suitable from age 8-9 onwards......)

[AILEA]

Cheryl,
Nowadays, is admirable a teen having such interest; In this crazy world, where we are allways running, fighting and working, looking the way to earn more money, buy the best car, and the biggest house..., I´m glad to see, there are teens, being ready to spend their summer holidays helping who needs it. :)
Ailea

[cherylplinder]

Ailea,
What a sweet thing to say. Thanks.
Cheryl

[Celia]

Here is a link to a website that carries the Medex torso rotation machines used in the Vert Mooney study that Gerbo has talked a lot about. If my daughter were old enough to use these machines, I would probably have her in this program as well. Massage is also something I would look into in conjunction with wearing the Spinecor brace - in particular massage of the convex side of the curve. I know there is no guarantee to any of this, but when you consider the alternative - it's worth a shot.

http://www.corespinalfitness.com/facility/index.php


Here is a link to the article: The Role of Measured Resistance Exercises in Adolescent Scoliosis by Vert Mooney. It's the fourth article from the bottom on the left hand side of the page :)

http://www.corespinalfitness.com/research/index.php

[sportsdoc]

I'm attending a conference this weekend that features vert mooney..
perhaps i'll share the presentation if i could get registered..can't believe I totally forgot about it..

btw, speaking of commercials..for you moms


http://www.youtube.com/watch?v=9nk7SGVS1lU

[Celia]

That commercial is too funny ! :D Hubby washes the bath tub in our house :D :D :D :D

[MATJESNIC]

sportsdoc,
Thanks for that funny commercial. Very clever. I am very into commericals, especially the old ones. Thanks for the laugh.

Melissa

[sportsdoc]

I am very into commericals,

lol..lots more where it came from..I just didn't want to spam this board with funny commercials..

BTW, I'm here to ask a favor..anyone have used hard brace of any type that you want to let go? name the price privately..I need some for display..

[gerbo]

I'm attending a conference this weekend that features vert mooney..

dear nameless sportsdoc:

is this a scoliosis related conference? would be interested to know how dr mooney views his research, a few years later.

gerbo

[sportsdoc]

yeah...it's scoliosis symposium..kinda like SRS meeting..all the specialists get 30-45 minute time slots to do their presentation..then round table discussion and so on..it's put on my scoliosis association...

I just need to get registered though lol...couldn't reach anyone yesterday..will have to try today...urgh~~

[sportsdoc]

sorry...it's spine symposium lol...
scoliosis consists of about half of the symposium...other subjects relate to scoliosis.....

[cherylplinder]

Hi friends!
Wishing all of you a great weekend! The girls sang in a talent competition today. No one won, but I was proud of them for singing. They sing really well even if I am their mom. Will probably never do it for a living, but it's nice to listen to. Obviously I feel a little like rambling on to someone. Thanks for being such a fine group.
The weather is nice. It's spring. Enjoy your blessings this weekend.
Hugs,
Cheryl

[MATJESNIC]

Cheryl,
That's great about your girls singing. I also enjoy when my children perform. We were at a dance competition all day today and we will be back tomorrow. Nicole does a tap solo, song and dance, and is on various dance lines. Everything was going along well. I didn't think of scoli once. Then all of a sudden, the most bizarre dance comes on and the girls were dressed in hospital gowns one wearing a neck brace, one with an eye patch etc. It was the most depressing, weirdest dance. The name of the song was Girl Anachronism. I told my husband I hoped Nicole didn't think too much of it. But of course when I saw her later she said, "Mom, wasn't that dance really creepy. It reminded me about scoli surgery. Mind you, all the other dances were just normal dances that you would see, really happy and upbeat. Anyway, thought I would share. Hope everyone is having a great weekend.
Melissa

[cherylplinder]

Yeah, it is strange how you think about this. Rachel was walking in front of me to the park for the competition yesterday, and all of a sudden I noticed how her right hip was higher than the left. I had never noticed before. I think that lumbar curve is progressing into a real curve. I keep hoping I'm wrong. Wonder if I should get it checked again before September?

It would be nice to go a day without thinking about scoliosis.

But when my son was diagnosed with diabetes at 4, he was in danger of hyperosmolar ketoacidosis, coma, and death. We are two hours drive from Birmingham, but he was so gravely ill, they flew him there. When the immediate danger passed, all I could think of was that it could have been worse. Truly, I was so relieved that it was something that we could treat.

I feel the same way about scoliosis. It is treatable, ie surgery, if bracing doesn't work, but treatable. They will live full, healthy, happy lives. I won't lie and say it doesn't still make me cry. Diabetes makes me cry, too. I hate it, and I hate scoliosis. Might as well tell it like it is.

I think God gives us the grace to deal with the trials of the moment. Were it something else, He would give me the grace for that, too.
The ability to enjoy the blessings of each day, not forgetting my trials, but truly grateful for the good. That is a gift in itself. I won't say I do it every day. But I manage a lot of the time. (I've had a lot of practice with trials. I think most people have!)

A lot of the time God carries me with sweet friends like you all. Thanks for being there and lending your support, care, and advice.
You are dear to my heart!

[Snoopy]

Cheryl,

I agree with you--without friends from this forum, I don't know how I'd get through some of what we've been through. Believe it or not, I am thankful for Jamie's Kyphoscoliosis. I've always tried to be thankful for what we have---healthy, normal kids, nice home, loving family, a husband who works his butt off so I could stay home full-time with our kids, etc.--but Jamie's Kyphosis and Scoliosis just reminds me daily that we have life good. I've seen so many kids who are worse off physically than Jamie and it really makes us extra thankful for what we have. I think this Scoliosis journey has taught us all a lot. Jamie has become a wonderful spokesperson for Scoliosis. She's done numerous reports and speeches in school and her and I now run a support group for Scoliosis. She goes to our local Children's Hospital and visits kids who have just had Scoli surgery done. The way I look at it, the journey with Scoliosis isn't over yet, but there is a light at the end of the tunnel.

Don't get me wrong, this has not been an easy journey. There are many, many days when Jamie and I both hate her Kyphoscoliosis. We hated that she missed out on so many special events because of her surgery especially the ones she personally earned. But all in all, it's an experience I'm glad we have gone through and I pray that we never have to go through it again! lol

Mary Lou

[cherylplinder]

Mary Lou,

Thanks for reminding me that God always brings good from every trial. He manages to make it a blessing. Sometimes I forget to look and see all the blessings that have come my way because of something I'm dealing with.

How wonderful that Jamie has used this to serve others!

You made me smile and warmed my heart!

Hugs!

Cheryl

[cyprusmom]

Just wanted to add my latest thoughts and all this we are ALL going through. Yes, I also hate scoliosis and I also cry when I think of the 'invasion' she will probably have to go through with surgery. Some things come into perspective though.....

Just a week ago we board the plane for Greece for the doctors appointment and after all of us 'normal' passengers are seated, the elevator starts lifting about 30 children of all ages with disabilities, some are hand carried into their seats, some taken on wheel chairs. They were all smiling, their parents, chaperons included. I watched the father across the aisle how he held and kissed his sons' hand during the whole flight, who could barely keep his head up but kept a smile. I could hear the little girls rambling behind me, couldn't understand a word, but she sounded happy.
My husband and I looked at each other and at our kids in the middle. We didn't have to say a word but we knew. We were lucky for all we have.
I bring this picture to my mind ever time I feel down and depressed.
Pola

[Celia]

With Mother's Day quickly approaching, I thought I'd share a poem I came across a few years ago with some of the moms - it touches upon the crosses we bear. We had just recently discovered my daughter had scoliosis, so it was a very emotional time for me....

The young mother set her foot on the path of life.
"Is this the long way?" she asked.

And the guide said: "Yes, and the way is hard. And
you will be old before you reach the end of it. But
the end will be better than the beginning."

But the young mother was happy, and she would not
believe that anything could be better than these
years. So she played with her children, and gathered
flowers for them along the way, and bathed them in the
clear streams; and the sun shone on them, and the
young Mother cried, "Nothing will ever be lovelier
than this."

Then the night came, and the storm, and the path was
dark, and the children shook with fear and cold, and
the mother drew them close and covered them with her
mantle, and the children said, "Mother, we are not
afraid, for you are near, and no harm can come."

And the morning came, and there was a hill ahead, and
the children climbed and grew weary, and the mother
was weary. But at all times she said to the
children," A little patience and we are there." So the
children climbed, and when they reached the top they
said, "Mother, we would not have done it without you."

And the mother, when she lay down at night looked up
at the stars and said, "This is a better day than the
last, for my children have learned fortitude in the
face of hardness. Yesterday I gave them courage.
Today, I have given them strength."

And the next day came strange clouds which darkened
the earth, clouds of war and hate and evil, and the
children groped and stumbled, and the mother said:
"Look up. Lift your eyes to the light." And the
children looked and saw above the clouds an
everlasting glory, and it guided them beyond the
darkness. And that night the Mother said, "This is
the best day of all, for I have shown my children
God."

And the days went on, and the weeks and the months and
the years, and the mother grew old and she was little
and bent. But her children were tall and strong, and
walked with courage. And when the way was rough,
they lifted her, for she was as light as a feather;
and at last they came to a hill, and beyond they could see a shining
road and golden gates flung wide.

And mother said: "I have reached the end of my
journey. And now I know the end is better than the
beginning, for my children can walk alone, and their
children after them."

And the children said, "You will always walk with us,
Mother, even when you have gone through the gates."
And they stood and watched her as she went on alone,
and the gates closed after her. And they said: "We
cannot see her, but she is with us still. A Mother
like ours is more than a
memory. She is a living presence."

Your Mother is always with you. She's the whisper of
the leaves as you walk down the street; she's the
smell of bleach in your freshly laundered socks; she's
the cool hand on your brow when you're not well. Your
Mother lives inside your laughter. And she's
crystallized in every teardrop.

She's the place you came from, your first home; and
she's the map you follow with every step you take.
She's your first love and your first heartbreak, and
nothing on earth can separate you... Not time, not
space...not even death

[Singer]

That poem practically had me bawling !!!! Thanks for sharing it.

[pat]

Thanks Celia, what a beautiful poem! Pat

[cherylplinder]

Every mother should have that poem. It really touched me. Do you know the author?

[sportsdoc]

Every mother should have that poem. It really touched me. Do you know the author?

let me add one for every christian mothers...or even fathers heh...


Whenever your children are out of control, you can take comfort
from the thought that even God's omnipotence did not extend to His own children.
After creating heaven and earth, God created Adam and Eve.
And the first thing he said was, "Don't."
"Don't what?" Adam replied.
"Don't eat the forbidden fruit." God said.
"Forbidden fruit? We have forbidden fruit? Hey, Eve...we have
forbidden fruit!"
"No way!"
"Yes, way!"
"Do NOT eat the fruit!" said God.
"Why?"
"Because I am your Father and I said so!" God replied, (wondering why he hadn't stopped creation after making the elephants).
A few minutes later, God saw His children having an apple break and was He ticked!
"Didn't I tell you not to eat the fruit?" God, as our first
parent, asked?
"Uh huh," Adam replied.
"Then why did you?" said the Father.
"I don't know," said Eve.
"She started it!" Adam said.
"Did not!"
"Did too!"
"DID NOT!
Having had it with the two of them, God's punishment was that Adam and Eve should have children of their own.
Thus, the pattern was set and it has never changed! But there is reassurance in this story. If you have persistently and lovingly tried to give
children wisdom and they haven't taken it, don't be hard on yourself. If God had trouble raising children, what makes you think it would be a
piece of cake for you?

THINGS TO THINK ABOUT!

1. You spend the first two years of their life teaching them to walk and talk. Then you spend the next sixteen telling them to sit down and shut up.

2. Grandchildren are God's reward for not killing your own children.

3. Mothers of teens now know why some animals eat their young.

4. Children seldom misquote you. In fact, they usually repeat word for word what you shouldn't have said.

5. The main purpose of holding children's parties is to remind yourself that there are children more awful than your own.

6. We childproofed our homes, but they are still getting in.

ADVICE FOR THE DAY: Be nice to your kids. They will choose your nursing home one day.

AND FINALLY:

IF YOU HAVE A LOT OF TENSION AND YOU GET A HEADACHE, DO WHAT IT SAYS ON THE ASPIRIN BOTTLE:

"TAKE TWO ASPIRIN" AND "KEEP AWAY FROM CHILDREN"!!!!!

[AILEA]

Celia, a wonderfull poem; it made me cry!
Sportdoc, funny poem, It made me laugh!
So, after reading both, I´ve been crying and laughting at the same time. Fortunately I´m alone with my computer :rolleyes: .If it colud speak....

[gerbo]

The young mother set her foot on the path of life.
"Is this the long way?" she asked.

And the guide said: "Yes, and the way is hard. And
you will be old before you reach the end of it. But
the end will be better than the beginning."

But the young mother was happy, and she would not
believe that anything could be better than these
years. So she played with her children, and gathered
flowers for them along the way, and bathed them in the
clear streams; and the sun shone on them, and the
young Mother cried, "Nothing will ever be lovelier
than this."

Then the night came, and the storm, and the path was
dark, and the children shook with fear and cold, and
the mother drew them close and covered them with her
mantle, and the children said, "Mother, we are not
afraid, for you are near, and no harm can come."

And the morning came, and there was a hill ahead, and
the children climbed and grew weary, and the mother
was weary. But at all times she said to the
children," A little patience and we are there." So the
children climbed, and when they reached the top they
said, "Mother, we would not have done it without you."

And the mother, when she lay down at night looked up
at the stars and said, "This is a better day than the
last, for my children have learned fortitude in the
face of hardness. Yesterday I gave them courage.
Today, I have given them strength."

And the next day came strange clouds which darkened
the earth, clouds of war and hate and evil, and the
children groped and stumbled, and the mother said:
"Look up. Lift your eyes to the light." And the
children looked and saw above the clouds an
everlasting glory, and it guided them beyond the
darkness. And that night the Mother said, "This is
the best day of all, for I have shown my children
God."

And the days went on, and the weeks and the months and
the years, and the mother grew old and she was little
and bent. But her children were tall and strong, and
walked with courage. And when the way was rough,
they lifted her, for she was as light as a feather;
and at last they came to a hill, and beyond they could see a shining
road and golden gates flung wide.

And mother said: "I have reached the end of my
journey. And now I know the end is better than the
beginning, for my children can walk alone, and their
children after them."

And the children said, "You will always walk with us,
Mother, even when you have gone through the gates."
And they stood and watched her as she went on alone,
and the gates closed after her. And they said: "We
cannot see her, but she is with us still. A Mother
like ours is more than a
memory. She is a living presence."

Your Mother is always with you. She's the whisper of
the leaves as you walk down the street; she's the
smell of bleach in your freshly laundered socks; she's
the cool hand on your brow when you're not well. Your
Mother lives inside your laughter. And she's
crystallized in every teardrop.

She's the place you came from, your first home; and
she's the map you follow with every step you take.
She's your first love and your first heartbreak, and
nothing on earth can separate you... Not time, not
space...not even death

Where's dad? ;) ;)

[gerbo]

Where's dad?

and don't say; gone to the pub with his mates!! :rolleyes:

[Celia]

Where's dad? ;) ;)
Well, the father was obviously out providing for food and shelter. As the family was climbing up various hills, he was out in front clearing brush/fighting off dangerous animals and thus making the path easier for the mom and kids. :D

[gerbo]

good answer!! :D :D :D :D :D :D :D

[gerbo]

good answer!!

correction; Great answer!!

[cherylplinder]

:D :D :D :D :D :D lol!!!!!!!!!!!!!!!
For all the dads on this forum, you could replace "mother" with "father" in the poem. All that, forging the way, and fighting off dangerous animals.

P.S. Maybe occasionally gone to the pub with his mates? lol :D :D :D

[sportsdoc]

one of the stuffs they went over at the spine symposium the other day was the protein which could regenerate discs..
it is impractical at the moment because the method of delivery is invasive and short half life requires it to be done fairly often..
so they are developing gene therapy or cell therapy to do this..
it'll be of big help with degenrative scoliosis..
those with scoliosis tends to have degenerative discs also and that would be also place where this would be very useful...
it actually changes heghit of disc and perhaps this may lead to some curve improvements along with proper rehab..

I'm thinking between spinecor, mooney's or other types of rehab along with above type of therapy would go a long way in improving curves with minimally invasive procedures..

Another thought I had was...they use what's called, vertebroplasty...using a balloon, you lift the collapsed vertebra and fill up the empty space with some filler material...

for those with bone deformation due to prolonged severe curves, I'm wondering if they could surgically break the bone and do vertebroplasty to reshape the bone...

I think it may be the matter of which surgeon would be daring enough to do some experimental stuffs...

all these stuffs just have to come together...I'm not sure if it's feasible since surgery is not my area...but it is exciting nonetheless..

ok guys..i'm signing off...have so many backed up reports...

[cherylplinder]

Did Vert Mooney speak?

[tmom]

We live in San Diego, so we had an appointment with Dr. Mooney personally in his center. He said that for my son (curve >40 Cobb) his program probably would not be beneficial, that we can try, if we want. He sounded very skeptical about our case, and said that for their research trial they take mostly girls < 30 Cobb. It’s just some info for the people thinking about this treatment.

[gerbo]

that does make sense, once you get past 40 it is hard to imagine how balancing out of muscles conceivably could make an awfull lot of difference, still, one can try. is he still running the programme actively?

[Celia]

We live in San Diego, so we had an appointment with Dr. Mooney personally in his center. He said that for my son (curve >40 Cobb) his program probably would not be beneficial, that we can try, if we want. He sounded very skeptical about our case, and said that for their research trial they take mostly girls < 30 Cobb. It’s just some info for the people thinking about this treatment.


Hi,

Is Dr Mooney using resistance training in conjunction with bracing ? I realize his study was very small but there were children in the study whose curves were above 40 degrees and did well - these children apparently were *not* braced ?

[gerbo]

i did exchange a few emails with him at some stage and i am pretty sure he did the exercises without additional bracing, whether he has changed that approach I don't know. In any case, he is not an orthopaedic surgeon so bracing or not would not be his decision.

I think that if his approach works, then it will work even better if combined with bracing.

[Celia]

In any case, he is not an orthopaedic surgeon so bracing or not would not be his decision.


According to this website, he is an orthopaedic surgeon. Hmmm....I find it odd that he wouldn't prescribe bracing.

http://www.spine-health.com/doctor/VertMooney/

[gerbo]

According to this website, he is an orthopaedic surgeon. Hmmm....I find it odd that he wouldn't prescribe bracing.

http://www.spine-health.com/doctor/VertMooney/

well, I was completely wrong there, wasn't I? :o :o

[gerbo]

I find it odd that he wouldn't prescribe bracing.

this might be because it is still in the trial phase (possibly) where he wants to compare torsorotation to no treatment, or maybe he just doesn't believe in bracing in the first place, or feels it is a cruel trwatment???

[sportsdoc]

I sat next to him during lunch on purpose so I could chat with him a bit lol..
really nice guy...

From his introduction and presentation during the symposium...what I remember is that he was a pretty prominent surgeon for 40 years before he specialized in exercise rehab.

During debate format, it was very obvious his general approach in things were very conservative...which i liked very much personally...

While chatting with him, I could tell he was big in numbers as it is typical with orthos...I have asked his opinion on spinecor..thought it was promising but would like to see more data..he wasn't aware of the new studies..

I've attended patient sessions also...couple of other promient surgeons recommended his methods as well...

I like his methods..but it's limited in that it does not address plasticity issue. His method is probably addressing posturer issues arising from primary scoliosis, thus some improvement. I feel if some type of aggressive soft tissue mobilization could accompany the rehab, the results may even be improved upon...

[cherylplinder]

Is this recommended for all curves? Is it equally effective for thoracic, lumbar, and thoracolumbar ? Pardon my ignorance, I couldn't seem to download the whole article, just a summary.

Sportsdoc,
Do you have any recommendations about where to find this type of therapy in the US?

Gerbo,
Did you just go to a regular gymn?

Thanks guys!

[sportsdoc]

I think during rotation, there are some procedures to isolate specific levels...
so it's not just general rotation...
To find out about clinic that may do this, I'd call Dr. Mooney directly and consult.. see if there are any other clinics that does what he does..

I'm definitely considering his method as well to implement...
whatever helps the patients..I'm all for it...

[sportsdoc]

I find it odd that he wouldn't prescribe bracing.

Probably same reason why most chiropractors are against bracing...
Ridgid bracing basiclally destroys the integrity of neuromuscular balance...it promotes atrophy...
you can't do rehab and ridgid bracing at the same time..they contradict each other...

That's one of the reason why it was easy for me to accept spinecor...it would complement rehab while doing it's own thing...

[Celia]

I'm definitely considering his method as well to implement... whatever helps the patients..I'm all for it...

I think the fact that you're here in the trenches - so to speak - is really admirable and you really seem to care about what might work! I have a feeling you'll do great things! :D

[sportsdoc]

I think the fact that you're here in the trenches - so to speak - is really admirable and you really seem to care about what might work! I have a feeling you'll do great things! :D


thanx...I just feel scoliosis basically has all the puzzles laid out..and someone just has to fit the pieces together...we are living in both frustrating and exciting time...

Just read an article today that FDA just approved device used for vertebral body replacement...do you see the significance of that? If it can be done right, with some modifications, even congenital defects like wedge vertebra or even in idiopathic posterior end plate deformity(as some say is what's happening with idiopathic scoliosis) could be treated with this thing..

We are getting closer and closer to being able to treat scoliosis more effectively...both surgically and non-surgically..

it's exciting to be part of that....

and another incentive is, one never knows..my daughter could be developing scoliosis...or even my son...my 2 year old daughter is having EENT consult today for possible surgery on her ear...even though it's minor procedure they have to put her under general anesthesia..which is scary for me..I never thought I'd have to put any of my kids through something so drastic..

I'm paranoid...you know i check my daughter's spine every week? lol...she's under weight and short for her age so I'm worried that she may develop some hip pathology as slow developers do..so I do hip exercise with her...she's on all kinds of vitamins and probiotics...if she develops scoliosis?? I'm just amazed how brave you guys are..

Eversince i've had those 2 rugrats, every story about kids just seems so personal...i cry like an idiot with some news stories that has nothing to do with me...can't even drive at the speed limit...ugh..parenthood...one thing that this forum does for me is it keeps scoliosis personal for me...

anyway, you guys are on my prayer list...

[sportsdoc]

Below is the European guideline on Treatment of Scoliosis...Seems awfully different from US method where largely rehab is totally disregarded...
funny thing is that spine surgeons at the symposium seems to favor rehab as well...
it's the practicing doctors at large who are not accepting of the different methods..
I don't know how to put the whole meeting up here..
it's in pdf..so it'll be up on scolibrace.com sometime next week...

I'm impressed though...although rehab was received favorably, US primarily focuses their efforts on surgical technique...
I'm looking at 2006 meeting abstract and Europeans seem to be looking at various causes and treatment methods...


Milan, 13-14 January 2005
2nd International Conference on Conservative Management of Spinal Deformities
1st Consensus Meeting of the
Study group On Scoliosis Orthopaedic and Rehabilitative Treatment

Systematic application of the treatment modules with respect to Cobb angle and maturity:

I. Children (no signs of maturity) 6-10 (12) years of age
a.< 20° Cobb: Observation (6 – 12 Month intervals)
b.Cobb angle 20-25°: Out patient physiotherapy with treatment free intervals (with low progression risk).
c.More than 25°: Out patient physiotherapy, scoliosis intensive rehabilitation programme (SIR) when available and brace (part time 12-16 hours [low risk, low effort])

II. Children and adolescents, Risser 0-3, first signs of maturation, less than 98% of mature hight
a.progression risk less than 50%: Observation (3 Month intervals)
b.progression risk 50%: Out patient physiotherapy
c.progression risk 60%: Out patient physiotherapy, scoliosis intensive rehabilitation programme (SIR) when available + relative brace indication (16 – 23 hours [low risk]).
d.progression risk 80%: Out patient physiotherapy, scoliosis intensive rehabilitation programme (SIR) when available + absolute brace indication (23 hours [high risk])

III. Children and adolescents presenting with Risser 4 (more than 98% of mature hight).
a.less than 30° according to Cobb: Observation (6 – 12 Month intervals)
b.30 - 35° according to Cobb: out patient physiotherapy
c.more than 35° according to Cobb: Out patient physiotherapy, scoliosis intensive rehabilitation programme (SIR) when available + brace (part time, about 16 hours are sufficient [low risk, low effort])
d.for brace weaning: Out patient physiotherapy, scoliosis intensive rehabilitation programme (SIR) when available + brace with reduced wearing time.

IV. Beginning with Risser 5 (more than 99.5% of mature hight)
a.more than 35° according to Cobb: Out patient physiotherapy
b.more than 45° according to Cobb: Out patient physiotherapy, scoliosis intensive rehabilitation programme (SIR) when available.
V. Adults with Cobb angles > 45°: Out patient physiotherapy, scoliosis intensive rehabilitation programme (SIR) when available

VI. Adolescents and adults with scoliosis (more than 20° according to Cobb) and chronic pain: Out patient physiotherapy, scoliosis intensive rehabilitation programme (SIR) when available with a special pain programme (multimodal pain concept / behavioural + physical concept)

[sportsdoc]

WEDGED VERTEBRA EXPANDED BY BRACE
J. Cheneau; G. Engels
e-mail: cheneauj@wanadoo.fr
A tiny wedged vertebra by a six years old girl has become nearly symmetrical after
two years of bracing. We discuss over the apparently unknown possibility that braces give
to lead an elective growth of the shorter side of a vertebra by scoliotic and Scheuermann
patients.


That was from 2006 meeting abstract...exciting or what? I know it's anecdotal...but the possibility is just so exciting...couldn't wait'til next week to post lol...I'm getting goosebumps...

[Karen Ocker]

Sportsdoc:

Could you post the American guidlines so that an easy comparison can be made at the various stages?

Thanks

[sportsdoc]

pardon my ignorance but I'm not aware of any body that publishes actual standardized guideline for everyone's use..it varies by text and groups a little..US does not have specific guideline..more like rule of thumbs in my opinion and it totally excludes physiotherapy or rehab...bracing and surgery are the only things considered. Problem with that is there are lack of interest in the area and that means no funding available which means no studies...considering how much most physicians are in dark with subject of scoliosis..and the fact that those who manage the condition ie spine surgeons totally lack knowledge and interest in rehab, US is in dark ages with scoliosis management
Below are couple of examples of some exisiting guidelines..
my guess is that it's been pretty constant for many years....
it's really explicit in most texts..they just totally shut the door on anything non-brace or non-surgical...
now..there are brace guidelines and surgical guidelines lol...




One potential treatment algorithm for juvenile idiopathic scoliosis is as follows:
Observation for curves less than 25° with follow-up radiographs at regular intervals
Bracing for curves that range from 25-40° and at least consideration of bracing (based on curve flexibility) for curves from 40-50°
Bracing for smaller curves that demonstrate rapid progression to the 20-25° range
Surgical intervention for inflexible curves that exceed 40° or virtually any curve that exceeds 50°.

__________________________________________________ _


below is from publication of American Academy of Family Physicians


TABLE 3
Treatment and Referral Guidelines for Patients with Scoliosis

AGE Risser grade X-ray/refer Treatment


10 to 19 0 to 1 Every 6 months/no Observe
10 to 19 2 to 4 Every 6 months/no Observe
20 to 29 0 to 1 Every 6 months/yes Brace after 25 degrees
20 to 29 2 to 4 Every 6 months/yes Observe or brace*
29 to 40 0 to 1 Refer Brace
29 to 40 2 to 4 Refer Brace
>40 0 to 4 Refer Surgery§

--------------------------------------------------------------------------------

*-- If the patient is Risser grade 4, probably only observation is warranted.

§-- If the patient is Risser grade 4, surgery can be delayed.

Information from references 5, 7, 8, 10, 11, 20 and 21.

[AILEA]

I’ve been always wondering, why things and treatments are so different for scoliosis, depending which "School of thought"the doctor belongs to. It’s quite difficult when you are not a doctor and you must make such decisions.
If he belongs to the American, you know what he is going to said:
-Boston, Milwaukee 23/7, or a bending brace
-No brace, no exercise can reduce your curves.
-You must do some exercise to prevent your muscles getting weak
-If your Cobb angle reach 40º: surgery
But if he belongs to the European:
-Cheneau (and derivates), Lyones, Boston and Milwaukee
-A good brace could reduce your curvature, although the goal is to stop it
-It’s important to make exercise, to strength all the muscles; there are several physiotherapy treatments and rehabilitation exercises. Specific exercises you should do, and others that you may avoid (regarding the thread about swimming, if you swim, choose crawl, better than butterfly or breast stroken)
-If your Cobb angle reach 40º or 50º you may have surgery unless you are pain free, well-balanced, done growing and don’t have esthetical problems
Why can’t they reach an agreement? Scoliosis is scoliosis, and it doesn´t depend on where are you from, or it shouldn’t.

[gerbo]

Is this recommended for all curves? Is it equally effective for thoracic, lumbar, and thoracolumbar ? Pardon my ignorance, I couldn't seem to download the whole article, just a summary.

go to this link http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=2505 and "useful link nr 5" should get you to the full article.


Gerbo,
Did you just go to a regular gymn?

as medx machine is not available in the uk I had to find a regular gym with similar equipment, I was lucky to find one locally which has got a "torsotwist" machine, which is essentially ythe same. As I understand it, the medx machine is better because it holds the pelvis steady whilst you are "twisting", a task which i do myself by holding on to lisanna's hips whilst doing the exercise

[gerbo]

[]
Below is the European guideline on Treatment of Scoliosis

You're to rosy re european concensus, there isn't any at all, this has been produced by a selfselected group of health professionals who promote this approach, they do not necessarily represent the concensus opinion. Every european country seems to have its own views and approaches and also within countries there are big differences of opinion. For that matter, in the UK the general opinion is still on the lines of observe, brace and operate and nothing else helps, and it is quite similar in holland, although physio is more promoted there, if only to keep the muscles in a reasonable condition.. A physical therapy type of approach seems bigger in central and eastern europe but whether they have any better results is unclear........ all in all, its a mess still out there, and nobody seem to know what's best (and that is why there are so many different approaches)

[Celia]

Except for the Vert Mooney study, there isn't one article that shows that exercise alone reduces curves - I'm not even sure if the Vert Mooney study touches upon permanent correction. Was there was a long term study on these chidren to show what happened to their curves :confused: Could someone ask him ??? The Schroth method requires a permanent life style change - i.e., continuous exercise which for some can be a bother - so it's no surprise to me that orthopaedic doctors don't prescribe exercise as a means to reduce curves. I don't see why the adolescent growth spurt has to be feared - as Min Mehta has shown, growth can be a corrective force. I think the time to do these exercises or resistance training would be during the crucial growth spurt (or whenever there is growth) because at that point, the correction could conceivably be permanent - this is all theoretical of course. ;)

[Karen Ocker]

This is reference to exercises:

http://www.orthospine.com/?frameSrc=/ask_doctor/faq_scoliosis_kyphosis.html

Can exercises correct a Scoliosis?



One must be aware that scoliosis curves can neither be improved nor their progression prevented by exercises. However exercises for spine stabilization are beneficial for most people with spine problems. After careful evaluation by a spine specialist most patients with scoliosis are encouraged to participate in athletics without reservation (swimming and bicycling are probably better than running).



It is mostly recommended to engage in aerobic exercises with limited amount of resistance (no more than 40 lbs.). Gym exercises can be pursued with upper extremity work outs in sitting and supine positions, using free weights or machines (nautilus or cybex) to indirectly strengthen the supportive musculature of the back. Lower extremities exercises should avoid excessive work in deep knee or hip flexion. Keeping in shape, maintaining normal weight, eating a balanced diet and avoiding smoking are all part of a healthy back regimen

Here's a recent summary of studies/outcomes with alternative treatment:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16305271&query_hl=2&itool=pubmed_docsum

Recent study on alternatives:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15948477&query_hl=4&itool=pubmed_DocSum

Here's an interesting Japanese study with physio:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14713588&query_hl=8&itool=pubmed_DocSum

This talks about exercise and bracing for kyphosis as being helpful
:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15116637&query_hl=8&itool=pubmed_DocSum

[green m&m]

I have an inkling that part of the reason why PT isn't used frequently in US for scoliosis management is b/c insurance carrers refuses to cover it.

[Celia]

It's a shame everything boils down to money ! :mad: On the topic of insurance :D .... our insurance co. will re-imburse us for the 4 replacement elastic bands which cost $240.00. YIPEEEEEE !!!!

[sportsdoc]

celia..which insurance company is that??

[Celia]

Manulife Financial....I don't know if they're strictly Canadian :confused: They are sooooo good ! :D :D :D

[Mom37]

Has anyone been to the shriners after having the spinecor fitted? What is their approach to it?
We are scheduled to see them in April when they come to Cyprus and offer free assements and where needed treatement in the US. They are very highly regarded here but I am afraid they are very much pro-surgery and probably pro rigid bracing. Am I correct?

I am wanting to apply directly to Erie and am wondering if already being fitted with Spinecor brace will be a problem for acceptance or long wait since not as urgent possibly. Anyone experience or know about this? Please let me know if you have any information before I call tomarrow. Thank you.

[sportsdoc]

you mean it's not free in Canada? oops...i just sent a patient in CA to St. Justine's because I thought It'd be free there...
I thought Canada had socialistic healthcare system...

[Mom37]

Hi,

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


Did you do this? I wondered how hard that is to get the local one in Houston to sponsor, or if it is better to just go directly to Erie. Any suggestions?

[cherylplinder]

I think the care coordinator can help hook you up with your local Shriners for travel expenses. Be sure and ask. I responded to you on the other thread, also.
I'll send you another PM.
Hugs,
Cheryl

[Mom37]

Hi all,
Just checking in to say I am one phone call away from an appointment with Dr. S (?) at Shriners in Erie. They took an application and transferred me to the scheduling department where I left a message. Soon I will be talking about straps and angles etc etc :) :p Thanks again for all the info. - I got a little nervous when the lady said that Dr. S doesn't perfer one brace over another - I quickly let her know that I am opting for the Spinecor because of the flexibility of it and my research indicating that the results are much better.
Karen
Karen,

How is it going? I have been following this thread and am calling Erie Shriners tomarrow. Was scheduling a quick process. My daughter is already braced with Spinecor but want an opinion from an Orthopedic who does Spinecor and other bracing. As per my previous posts for expertise and financial help. I did get coverage out of network from insurance and that helps, but there is still a long time to go. I wish you the best. All the people on this thread are very helpful with all of their experience and research, and advice!

[Celia]

you mean it's not free in Canada? oops...i just sent a patient in CA to St. Justine's because I thought It'd be free there...
I thought Canada had socialistic healthcare system...

We like to call it "universal" health care rather than "socialistic" health care ;) Not everything is covered by provincial plans.... for instance dental, physiotherapy, chiropractic, out of hospital nursing, prescription drugs etc..... is all covered by private health plans. The Spinecor brace is not covered by provincial plans but I think it's just a matter of time before it is. I also don't think international patients would be covered by our free health care system since they would have to be Canadian residents to qualify :confused: Not sure about this.....

[cherylplinder]

You're correct. Rachel was not covered.

[MATJESNIC]

Cheryl,

Does your insurance company pay you as in-network or out-of-network? I am fighting our company because we have no choice to go out of network. There is no spinecor distributor or doctor within 75 miles.

Melissa

[Celia]

Did you do this? I wondered how hard that is to get the local one in Houston to sponsor, or if it is better to just go directly to Erie. Any suggestions?

I would do a phone application with Erie and then they schedule an appointment for you. Cheryl that's what you did, right ? If you want travel expenses/accomodation paid for, you would have to get a local Shrine Temple to sponsor you - that will take a few months to process. There are other hospitals that prescribe the Spinecor brace besides Erie, just look at the Spinecorporation website for treatment centres. :)

[Mom37]

Thanks. I did a phone application today directly with Erie PA Shriners and they are supposed to call me back tomarrow. They said I would have to be responsible for my own transportation to Erie. I found out American does not fly to Erie, so the closest is Buffalo NY which is 89 miles away (don't know if that is air miles, but think so). I'd have to connect to US Airways or drive from NY. I am hoping I find a closer airport, but I guess its not too far for a free second opinion if I get it worked out. I was not thinking of all the little details.

[green m&m]

you mean it's not free in Canada? oops...i just sent a patient in CA to St. Justine's because I thought It'd be free there...
I thought Canada had socialistic healthcare system...

:confused: Why would any part of Canadian health system be free for non-residents? It works the other way, I have a penpal that got treatments she received in US paid for by the canadian health system.. maybe you confused that?

I'm all up for no-cost/low-cost healthcare. I should move to Canada and obtain legal residency :p My medical bills this year so far has added upto over 15k.. Thank goodness for insurance.. :eek:

[sportsdoc]

:confused: Why would any part of Canadian health system be free for non-residents? It works the other way, I have a penpal that got treatments she received in US paid for by the canadian health system.. maybe you confused that?

I'm all up for no-cost/low-cost healthcare. I should move to Canada and obtain legal residency :p My medical bills this year so far has added upto over 15k.. Thank goodness for insurance.. :eek:

no..you got it all wrong..i didn't send american patient up there lol..
I had an inquiry from canada regarding spinecor...

well..cost aside, it's best for the patient anyway...she should be going to the closest provider possible..

[green m&m]

no..you got it all wrong..i didn't send american patient up there lol..
I had an inquiry from canada regarding spinecor...

well..cost aside, it's best for the patient anyway...she should be going to the closest provider possible..

OOps.. lol. I easily get confused b/c I pay attention to the wrong detail.. :rolleyes:

[cherylplinder]

Melissa,
We have rotten, expensive insurance. They don't pay for anything that is covered, and the deny coverage on all the rest! :D
I am cheerfully going medically broke! Well............ maybe not always cheerfully!
But my dad always says if all you have is money problems, you don't have any problems. He always says that!
One of my favorite sayings! I always helps me.

Celia,
Yes, I called Erie directly, and applied over the phone. They were great!

Hugs,
Cheryl

[sportsdoc]

I really don't get our healthcare...
the reimbursement is dwindling and premium is rising...
so doctors lose money and employers and self insurers pay higher premium..
yet, the benefit seems to be dwindling at rapid pace..
So people are paying more for less benefit while doctors are providing more service for less reimbursement..

Where's all the money going? With 80% of premium going to administrative cost (along with investor's pocket and $200 million salary for CEO's) I'd think even the most beaurocratic government would be more efficient than that..

and insurance industry is keep complaining they are losing money but their stocks skyrocket..and government just wants to help poor insurance companies out...

We've got some seriously corrupt system...at this point, i'd welcome even social system like canada...no..universal health care lol...

The funny thing is, people don't complain about insurance company. They hate the greedy doctors who charge too much and their employers who ask for more contribution and cutting health benefits..

The whole health care system in america is paradox after paradox...

[green m&m]

Agree with you there sports doc.

I vaguely remember on cnn.com months back that a huge percentage of healthcare cost could be cut if we cut down on paperwork...

[Celia]

It's amazing to me that the richest most powerful country in the world can't provide universal health care for it's people. I think it's just a matter of priorities and where elected officials decide to put tax dollars...

On a lighter note :) Gerbo mentioned this article to me the other day and I thought I'd pass it along to others. I plan to go to the medical library today and read it. :p

Pediatr Rehabil. 2003 Jul-Dec;6(3-4):171-82. Related Articles, Links


The use of exercises in the treatment of scoliosis: an evidence-based critical review of the literature.

Hawes MC.

Department of Plant Pathology, University of Arizona, Tucson 85721, USA. mhawes@u.arizona.edu

The loss of flexibility in a spinal curvature defines it as a structural spinal deformity; a curvature sufficiently mobile to resolve with a change in posture is a non-structural or 'functional' scoliosis which is within the normal limits of movement for a human spine. It, therefore, seems logical that exercise-based therapies designed to improve and/or maintain flexibility and range of motion of the spine and thorax would be useful in the treatment of scoliosis. Recognition of the importance of maintaining flexibility of the thoracic spinal column to avoid scoliosis-associated pulmonary dysfunction made the use of exercise-based therapies a topic of clinical interest in ancient Greece. In recent years, successful prevention of polio epidemics has resulted in a stable change in patient populations such that most individuals diagnosed with scoliosis do not suffer from irreversible central nervous system compromise. As a result, realistic opportunities to examine the role of exercise in treatment of scoliosis are available for the first time in history. A growing body of evidence from independent sources is consistent with the hypothesis that exercise-based approaches can be used effectively to reverse the signs and symptoms of spinal deformity and to prevent progression in children and adults.

Publication Types:
Review

PMID: 14713583 [PubMed - indexed for MEDLINE

[Celia]

I've read this before. Do you have a CV on this guy Hawes???

What's a C.V ? :D When I first saw "Plant Pathology", I thought....WHAT ?!!! :eek: The article IS in a Physio journal of some sort, so I assume it's in the medical library ? Here is a link to another article by Hawes:

http://www.chestjournal.org/cgi/reprint/120/2/672

[Celia]

Do you have a CV on this guy Hawes???

Oh... you mean a Curriculum Vitae ? Sorry, I'm a little slow this morning :rolleyes: I assume he/she is a PHD

[cherylplinder]

Sportsdoc,
I read an article Karen Ocker posted in the research thread about congenital contracture in the hip. Rachel has something odd about her leg and hip. I noticed it about the time I noticed something wrong with her back. The orthopedic completely dismissed it.
How would I know if this is what is happening with Rachel? Could this be addressed with PT?
Thanks,
Cheryl

[Karen Ocker]

I just read the article. I understand fully the medical lingo. It was published in the Journal - Chest.

M. Hawes, Phd is a member of the dept of Plant Pathology,
University of Arizona, Tucson.

I think this is great that a person's CHEST with 43 deg curve, middle aged could be helped. This took 8 YEARS of intensive treatment and her curve remained severe-she also had thoracic and lumbar curves which impact breathing more than a single or double curve. She also had pectus excavatum which is sunken chest on the front. I'm wondering if the pectus excavatum was helped even more because this affects chest circumference. What must she do to maintain this? Even though the article stated she was offered surgery she is probably not a candidate unless progressing. The article said her curve was stable.

I am wondering how practical is this not to mention insurance issues.

[cherylplinder]

Holy Cow!

I asked Rachel to walk for me, so I could check which foot was rotated. ( I am right, left challenged. Can't even remember which of my own hands are right and left without checking) She has walked funny for a few years because of this, but our first ortho completely dimissed it several years ago. I didn't think to mention it again in Erie or Montreal.

Anyway, her foot has stopped doing that. It was probably turned at a 30 to 45 degree angle, not since birth, just the last few years. It appears to be corrected by the Spinecor brace. I hadn't checked and didn't notice!

When I told her what I was checking for, and that I didn't see it anymore, she said,"Yeah! I know!" We were both excited. I don't see how that could be anything but good.

Her walk is normal now, her shoulders are much more even, and she is pain free.

Even if this brace does not correct her curve, it makes her able to function as a normal child. She was very incapacitated by her back. She didn't play long before it hurt her. She couldn't practice piano for more that about 10 minutes at a time. The only bonus for her was that the pain made it more difficult for her to do chores.

[sportsdoc]

vaguely remember on cnn.com months back that a huge percentage of healthcare cost could be cut if we cut down on paperwork...


that reminds me...what insurance company did was to hire and train more adjusters in order to cut back on care, denying claims...some of the reasons are just ridiculous..

so us providers have to hire professional billers or outsource to company that charges arms and legs that fights these kinds of denials...and we have to hire better biller and pay more...it's never ending cycle...

Cost of billers to providers? they are paid much more than regular medical assistants due to special training and stress level, WC insurance, benefits, taxes that goes along with higher pay roll..I think average clinics (small) have 2 billers)

you'd be amazed at the level of paperwork we are required to do...for every patient contact hour, we need to spend 2 on papers..while managed care cuts reimbursements..

You know..any jobs increase the salary as time progresses...in healthcare, pay has been getting smaller while requiring more work for each patients...no wonder the quality of care is really suffering..

did you see an article on CNN the other day? we have the second lowest infant survival rate among developed countries...we are 3 times more likely to have our infants die within 24 hours of birth compared to Japan..

the next president I vote for will be based on their healthcare reform issue..
this ridiculous trend has to stop...

[sportsdoc]

Holy Cow!

I asked Rachel to walk for me, so I could check which foot was rotated. ( I am right, left challenged. Can't even remember which of my own hands are right and left without checking) She has walked funny for a few years because of this, but our first ortho completely dimissed it several years ago. I didn't think to mention it again in Erie or Montreal.

Anyway, her foot has stopped doing that. It was probably turned at a 30 to 45 degree angle, not since birth, just the last few years. It appears to be corrected by the Spinecor brace. I hadn't checked and didn't notice!

When I told her what I was checking for, and that I didn't see it anymore, she said,"Yeah! I know!" We were both excited. I don't see how that could be anything but good.

Her walk is normal now, her shoulders are much more even, and she is pain free.

Even if this brace does not correct her curve, it makes her able to function as a normal child. She was very incapacitated by her back. She didn't play long before it hurt her. She couldn't practice piano for more that about 10 minutes at a time. The only bonus for her was that the pain made it more difficult for her to do chores.

I think there are some theories that even abnormal gait could be the cause of scoliosis...I kinda have hard time believing that..but it seems to be one of the constants for scoliosis patients...

[green m&m]

I think there are some theories that even abnormal gait could be the cause of scoliosis...I kinda have hard time believing that..but it seems to be one of the constants for scoliosis patients...

Chicken or egg first...

Was (abnormal gait, wedged vetebrae, leg length discrpency, ect) the cause of or secondary to scoliosis? I think about these time to time... and end up running my thoughts around in a circle. *dizzy O_o* At least I know my wedged vetebraes aren't secondary to scoliosis.. :p


did you see an article on CNN the other day? we have the second lowest infant survival rate among developed countries...we are 3 times more likely to have our infants die within 24 hours of birth compared to Japan..

Read that... pretty shocking. :eek:

[cherylplinder]

Hmmmmmmmmmmmmm.........Yeah, I was thinking that if correcting her spine(hopefully that is what is happening) is correcting her hip and leg problems, maybe her spine caused her hip and leg problems. Maybe we are correcting muscle imbalance and not spine. Maybe both. Must be all interelated!(That is the kind of statement people say "Duh" to.)

[gerbo]

Oh... you mean a Curriculum Vitae ? Sorry, I'm a little slow this morning :rolleyes: I assume he/she is a PHD

http://ag.arizona.edu/PLP/faculty/pages/hawes.html will give you some background. Funny enough, no mention of scoliosis whatsoever. Still I know she has published on the subject. I believe she has scoliosis herself, and like many of us, has taken an interest in the subject, and read a lot on the subjest and clearly developped quite a detailed understanding. Her scientific background will have helped her, no doubt. I suppose she is no different than many of us who have over the years developped quite an advanced understanding of many aspects of scoliosis management. ;)

wait a minute, found another link, this time with reference to scoliosis http://ag.arizona.edu/pls/faculty/hawes_plp.htm

[gerbo]

On a lighter note :) Gerbo mentioned this article to me the other day and I thought I'd pass it along to others. I plan to go to the medical library today and read it. :p



lighter note, whatyoumean??? I am being dragged in now to provide a bit of light relief, counterbalance to serious stuff? :mad: :mad: Light?? this is pretty heavy serious stuff ;) ;) ;)

ANYWAY.....

this particular edition of the magazine is actually full of mouthwatering titles related to mainly the non surgical treatment of scoliosis. http://www.journalsonline.tandf.co.uk/(dqxxchzuhz31xr55fdlqq4qr)/app/home/issue.asp?referrer=parent&backto=journal,12,26;linkingpublicationresults,1:1 02485,1

Worth getting if you can lay your hands on it, online copies of articles are available, but unfortunately horrendously expensive

[gerbo]

Chicken or egg first...

Was (abnormal gait, wedged vetebrae, leg length discrpency, ect) the cause of or secondary to scoliosis? I think about these time to time... and end up running my thoughts around in a circle. *dizzy O_o* At least I know my wedged vetebraes aren't secondary to scoliosis..



This is where i'd like to introduce a further article by Matha Hawes who in my mind has very clever ideas about scoliosis and who in her article descibes how she feels that lots of the structural scoliosis we see started its life as a non structural scoliosis and how small changes in the function or mechanics of the spine set of a whole chain of events which makes a mild, non structural scoliosis turn, through a vicious cycle, into a more severe structural version

http://www.scoliosisjournal.com/home/

its the fourth article on the page, there are a few more which i haven't read through yet. I'll keep an eye on what appears on that site anyway, if they keep it up, might be an interesting resource with a different perspective

[gerbo]

Her walk is normal now, her shoulders are much more even, and she is pain free.

Even if this brace does not correct her curve, it makes her able to function as a normal child. She was very incapacitated by her back. She didn't play long before it hurt her. She couldn't practice piano for more that about 10 minutes at a time. The only bonus for her was that the pain made it more difficult for her to do chores.


I think these are very exciting and worthwhile observations and indeed, good to know for yourself that at least you are improving her quality of life

[Celia]

.... I believe she has scoliosis herself, and like many of us, has taken an interest in the subject, and read a lot on the subjest and clearly developped quite a detailed understanding. Her scientific background will have helped her, no doubt. I suppose she is no different than a celia vogel knowing everything there is to know about infantile scoliosis and serial casting or a karen Ocker knowing everything there is to know about the role of chiropractice treatment in scoliosis etc.


Wow....hold on there jeronemo....How did I get dragged into this :confused: The only thing I know about infantile scoliosis is that it's a very complex condition that needs treatment by a pediatric orthopaedic doctor. I'm really fortunate that the doctors that have/are treating Deirdre are top notch and that I live in the most AMAZING country that has universal health care. :D :D

[gerbo]

too modest ;)

[Celia]

Gerbo,

We do have some control over events in our lives and it's important to educate ourselves on possible successful treatments. When it comes to scoliosis so many different theories abound as to the correct course of action...orthopaedic doctors can't even agree amongst themselves. Parents/patients have no choice but to search out answers.... surgery is a very permanent thing. I'm all for support groups and sharing information, I think it empowers us. :D

[Celia]

This is where i'd like to introduce a further article by Matha Hawes who in my mind has very clever ideas about scoliosis and who in her article descibes how she feels that lots of the structural scoliosis we see started its life as a non structural scoliosis and how small changes in the function or mechanics of the spine set of a whole chain of events which makes a mild, non structural scoliosis turn, through a vicious cycle, into a more severe structural version

http://www.scoliosisjournal.com/home/

its the fourth article on the page, there are a few more which i haven't read through yet. I'll keep an eye on what appears on that site anyway, if they keep it up, might be an interesting resource with a different perspective


Gerbo,

This is a great link !!!! Thanks for sharing it :p

[sportsdoc]

has anyone heard of autocorrection in 3d?
is that a new type of scoli rehab?
I'd appreciate it if you could point me to where i could get more information..
can't seem to find it anywhere other than just mentions in the articles..

[Celia]

Well, we have our followup in Montreal next week and I'm not expecting any surprises :cool: Cool as a cucumber, that's me.... Deirdre's back still looks very straight.

[MATJESNIC]

Celia,

That's great. Good luck with your appointment.

Happy Mother's Day to all you awesome Moms out there.

Melissa

[gerbo]

Well, we have our followup in Montreal next week and I'm not expecting any surprises Cool as a cucumber, that's me.... Deirdre's back still looks very straight.

ever considered there might be a life after scoliosis..........???


Anyway

Daddy polar bear and baby polar bear are walking around on the ice.
Baby polar bear asked, daddy, are you a real polar bear?
Yes son, I am
Daddy, is mummy a real polar bear?
Yes son, she is
But daddy; are granddad and grandma real polarbears?
Yes son, they are, why are you asking??

(blows in front paws and says in tiny babyvoice))......I've got cold feet! :o :o ;)

[Celia]

ever considered there might be a life after scoliosis..........???

Yes, I have :D How about you ?

I can live with "1" degree in brace correction for the next 10 years…it’s not like she’s wearing the Milwaukee or has to have VEPTR expansions every 6 months. This is the kind of scoliosis I can live with. I wish there were a better way of monitoring her back besides x-rays every six months.... The Spinecor brace is a godsend; my little girl is living a very normal life right now – no different than any other 5 year old. She is wearing age appropriate clothes and not clothes that are two sizes too big. She can bend, she can do headstands, jump rope, ride her bike, take part in gym class and most important of all…. she feels no different than any other kid. I don't think she's going to suffer psychological damage from wearing the spinecor brace. So to answer your question.... I'm O.K. with this life right now and yes....I'm content in knowing that one day scoliosis will not be an issue AT ALL :)



Daddy polar bear and baby polar bear are walking around on the ice.
Baby polar bear asked, daddy, are you a real polar bear?
Yes son, I am
Daddy, is mummy a real polar bear?
Yes son, she is
But daddy; are granddad and grandma real polarbears?
Yes son, they are, why are you asking??

(blows in front paws and says in tiny babyvoice))......I've got cold feet! :o :o ;)


Gerbo,

Sometimes I JUST don't understand your humour :o :D This reminds me....have you seen the movie about the Emperor penguins ? It's so emotionally moving the way the father penguins all huddle together in -50 degree celsius temperatures to protect their egg.


Melissa and all other moms,

Have a great Mother's Day !!! If you want to have a good cry, read that poem on Mother's Day. Gerbo, if it makes you feel better, just replace "Mother" with "Gerbo" LOL !!!! :D :D :D

[gerbo]

Sometimes I JUST don't understand your humour

its just a little joke about a polar bear with an identity crisis, i thought it was quite funny


I can live with "1" degree in brace correction for the next 10 years....This is the kind of scoliosis I can live with

do you consider her still having scoliosis??


The Spinecor brace is a godsend

can only but agree with that one, quality of life is so, so much better


I wish there were a better way of monitoring her back besides x-rays every six months



ofcourse one could consider not x raying her every 6 months if she looks straight, there is also this method using light shining over the surface of the back, (forgotten its name,) but it seems to give a reasonable impression without the exposure to radiation


Gerbo, if it makes you feel better, just replace "Mother" with "Gerbo" LOL

as if a gerbo could replace a mother, no way, preferred the line where the dad was clearing the path, fighting the wild animals and generally being very masculine and tough but ofcourse with a very soft core and kind heart and still in touch with his feminine side........

[Celia]

its just a little joke about a polar bear with an identity crisis, i thought it was quite funny

Well...I didn't know if it had something to do with my statement about being "cool as a cucumber" and wasn't sure how "cold feet" tied into it :D :rolleyes:




do you consider her still having scoliosis??

Of course !! Duh ! She has infantile scoliosis, one of the most aggressive forms of scoliosis there is. She HAS to be monitored/treated until she's finished growing. If she has to wear the Spinecor brace until that time, I don't care. I remember reading about a six year old who was diagnosed with a 60 degree curve and I think she was treated by that famous ortho Lonstein - with the Milwaukee brace they were able to get her curve down to 8 degrees, but everytime they weaned her from the brace, the curve would progress. The poor girl had to wear the Milwaukee from the age of 6 to 17 years... Once she was finished growing, her curve was stable at 20 degrees...



as if a gerbo could replace a mother, no way, preferred the line where the dad was clearing the path, fighting the wild animals and generally being very masculine and tough but ofcourse with a very soft core and kind heart and still in touch with his feminine side........

You're pulling my heart strings. O.K.. you can be the masculine dad wrestling animals to the ground. Happy now ? :D

[cherylplinder]

as if a gerbo could replace a mother, no way, preferred the line where the dad was clearing the path, fighting the wild animals and generally being very masculine and tough but ofcourse with a very soft core and kind heart and still in touch with his feminine side........[/QUOTE]


I like that. That's very good! I think it describes you to a tee!

Celia,
I'm glad you were a bit lost on the polar bear joke or I would feel a bit stupid.

Gerbo,
Your sense of humor is quite dry, my favorite kind! I get you almost all the time!
There were days when I was still a lurker (and days now) that your banter has given me a much needed laugh!

Both of you,

Wouldn't it be fun to have a party! I'll bet we would have a ball!
Would be hard to find the central location, though! Where are you ,Gerbo?

Happy Mother's Day, All!

Cheryl

[MATJESNIC]

Hi Cheryl,

We all have more than scoli in common. I have no idea what that polar bear joke meant. Also, where is the poem you all are talking about. We could definitely meet. Maybe in Montreal. Gerbo, I know you are in England. Are you up for a party at St. Justine's?

Is Mother's Day celebrated in Canada and England?

Melissa

[cherylplinder]

Melissa,
The poem is on page 14, post 559.
Watch out! It's a great poem, but you're going to bawl!
Wherever we end up on this path, whether surgery, or successfully braced, we ought to meet sometime. That would be more than sweet. I'm quite attached to you all. Pola, Ailea, all you other Spinecor moms and dads, we should try sometime. I never miss family reunions!
Happy Mother's Day to all!
Cheryl

[gerbo]

I have no idea what that polar bear joke meant

it didn't mean anything, it was just a joke (obviously not a very good one). You see, this little polar bear was walking on the ice and noticed he had cold feet. Realising that he was not supposed to have cold feet (after all, he was a polar bear) he was checking out whether he was a proper polar bear, or whether somewhere in the past there had been some genetic exchanges with non-polar bears, to explain these unusual feelings.......Nothing more to it..... :o :o :o


I didn't know if it had something to do with my statement about being "cool as a cucumber" and wasn't sure how "cold feet" tied into it

the cool theme did set me off a bit...., but no other connection


She has infantile scoliosis, one of the most aggressive forms of scoliosis there is. She HAS to be monitored/treated until she's finished growing.

Calrify this for me please; i thought that a good percentage of children with infantile scoliosis improve (some even without treatment)and go back to normal, following this recovery are they still meant to be at high risk, or is their risk the same as anybody else with a straight spine??


Is Mother's Day celebrated in Canada and England?

In the UK we celebrate "mothering sunday" which falls on the sunday before easter, whilst in Holland (where i come from) we do adhere to the more international "mothersday" on the second sunday in May

[MATJESNIC]

Okay,
I re-read the polar bear story and I still don't get it. I must move on.

We will be in Montreal from July 19-20, if anyone wants to meet us there. Not sure when I will be in England again. Have been there a few times in my life.

Anyone planning a trip to the States?

Melissa

[Celia]

[FONT=Arial]
...You see, this little polar bear was walking on the ice and noticed he had cold feet....


When you have to go into detail to explain a joke, it’s a sure sign it’s best to quickly forget the joke - and hope everyone else does the same LOL ! :D



...Calrify this for me please; i thought that a good percentage of children with infantile scoliosis improve (some even without treatment)and go back to normal, following this recovery are they still meant to be at high risk, or is their risk the same as anybody else with a straight spine??

I'm not sure..... There hasn't been one ortho that has told me he feels Deirdre is best off without any support and I'm certainly not going to take the lead. I don't know why some people feel she doesn't need any support – if it was your kid, what would you do ? Would you be so reckless? Bracing after serial casting is very important because the curve can still progress if conditions are not right.

I am aware that resolving infantile scoliosis can resolve on it’s own without treatment and doctors state that as much 90 % of all infantile cases fall into this category. These curves can take 18 to 24 months to resolve - I think the 90 % number is seriously over exaggerated. I’ve only come across one case of a true resolving scoliosis in the past three years. I realize that people who join support groups are people in need of support, but it does seem kind of odd when one considers how long it takes for a resolving curve to correct - one would expect to see many happy endings and not consistently progressing curves over time. I don't know about any other kid and what their circumstances may be, but if we had let nature take it's course and had watched and waited to see what happened to my daughter’s scoliosis, her curve would probably be about 200 degrees right now and she probably wouldn't have survived her childhood. If you want a better idea, just read the "Natural History of Progressive Infantile Scoliosis"

[gerbo]

When you have to go into detail to explain a joke, it’s a sure sign it’s best to quickly forget the joke - and hope everyone else does the same LOL !

this is all so painfull :o :o , it is obvious why my lifetime ambition to become a standup comedian is unlikely to come to fruition...... :rolleyes: :rolleyes:


There hasn't been one ortho that has told me he feels Deirdre is best off without any support and I'm certainly not going to take the lead. I don't know why some people feel she doesn't need any support – if it was your kid, what would you do ? Would you be so reckless? Bracing after serial casting is very important because the curve can still progress if conditions are not right.

what would i do?? I think currently i would do what you are doing (although i would never have thought to use the spinecor in somebody so young, sheer ignorance, and you were clearly right to take this route as the current results show) If my daughter would remain round the 0% inbrace for 1-2 years, i would ask for an xray out of brace (couple of days brace free), if she would keep the 0 degree I would consider her cured and would need to consider whether wearing the brace would be warranted, however, any curve over 10 degree and she would keep on wearing it.


Why do some people feel....

See above, and also, your deirdre comes as close as anybody i have heared of to being cured from her scoliosis and i just wondered at what point you would consider her scoliosis-free

Don't get me wrong, I am full of admiration for all you are achieving and have achieved for your daughter, you are inspirational to many, including myself (no joke :) :) )

[Celia]

what would i do?? I think currently i would do what you are doing (although i would never have thought to use the spinecor in somebody so young, sheer ignorance, and you were clearly right to take this route as the current results show) If my daughter would remain round the 0% inbrace for 1-2 years, i would ask for an xray out of brace (couple of days brace free), if she would keep the 0 degree I would consider her cured and would need to consider whether wearing the brace would be warranted, however, any curve over 10 degree and she would keep on wearing it.

Sounds like a good plan! :)


See above, and also, your deirdre comes as close as anybody i have heared of to being cured from her scoliosis and i just wondered at what point you would consider her scoliosis-free


When Dr. Rivard tells me so. :) Oh, and thanks for the sweet comments.

[Celia]

We will be in Montreal from July 19-20, if anyone wants to meet us there. Not sure when I will be in England again. Have been there a few times in my life. Anyone planning a trip to the States?
Melissa

Melissa,

It would be great if we could all get together one day ! We're going to be in Montreal this week and I don't suspect we'll be there again until November. I think Cheryl might be there in July, Cheryl ?

We did celebrate Mother's Day on the weekend! Hubby and the kids took me to a fancy restaurant and movie on Saturday because Sunday the line ups are ridiculous :eek: Sunday morning we went for a family jog and the path was literally covered in apple blossoms - the trees were hanging over the path like a canopy - it was soooooo beautiful. It's a day I won't soon forget :)

[MATJESNIC]

Celia,

That sounds like a nice weekend. We all went to the movies. My son didn't go because it was senior prom weekend and they all go down the shore (to the beach) afterwards. He came back with a huge balloon and a lot of guilt.

I thought you had only Deirdre. Do you have other children, too?

Maybe we will see you in November. I think that is when we will go back.

Melissa

[cherylplinder]

[QUOTE=gerbo]this is all so painfull :o :o , it is obvious why my lifetime ambition to become a standup comedian is unlikely to come to fruition...... :rolleyes: :rolleyes:

Gerbo,
I keep telling you how I tune in for your quick whit! You have at least one comedy fan! But don't quit your day job!

Hugs,
Cheryl

[MATJESNIC]

Karen,

That is great. I wish you all great luck with your appointment. Remember to tell your daughter that it may seem confusing at first (knowing where all the straps go), but my 12-year old was an expert by the next day. If your daughter has any questions and wants to talk to someone with almost 9 months experience wearing the brace, let me know and we can arrange it. Have a safe trip. I bought my daughter a portable dvd player for our 7-hour ride and it saved the day.




Melissa

[Celia]

I was thinking of getting a portable DVD player for our trip to Montreal....I even looked on e-bay for some deals. :p

[MATJESNIC]

I got a Magnavox 7-inch screen at Sears for a hundred dollars. They have really come down in price.

Melissa

[Celia]

Karen,

I just listened to some of your recordings and all I can say is WOW !!!! You have a lovely voice. :p


Melissa,

I'm checking out Sears today, thanks for the heads up ;)

[marapets]

i did use one..

[gerbo]

i did use one..

well, am I glad that after a record 657 rplies, somebody goes back to the original question. ;)

how did youget on with it, why didyou stop, did it help, what kind of curves did you have???

gerbo

[cherylplinder]

Karen,
I would do exactly as you are doing. I think you will find Dr. Sanders to be very supportive, also. I only met with him for a little while, but he did not discourage me from using Spinecor with Rachel. She is 10 with a large curve and a lot of growing to do, also. He said statistically, that nothing would keep her out of surgery, but in the 4 months she has been in the brace, she has grown several centimeters and her curve has not increased yet.
Keep your chin up!
Hugs,
Cheryl

[Celia]

Hi Karen,

Each hospital may be different, but in our case...we could have been fitted with the Spinecor brace the very first time we met with Dr. Rivard. I was undecided at the time - a lot of soul-searching involved and basically driving all my friends nuts :p Two months later we returned for the fitting. The day of the fitting involved taking lateral, P/A and prone x-rays. After being fitted with the spinecor brace, we had one additional x-ray to see what kind of correction we got. That's basically it!

[MATJESNIC]

Celia,

I was not saying that you should necessarily go to Sears. Probably most stores like Best Buy or Circuit City sell a 7-inch for about a hundred.

Karen,

I can only tell you what we experienced. I don't know if you will have the same experience.

The appointment could be a couple of hours long. They may or may not take an out-of-brace x-ray. They will put the brace on her and take an in-brace x-ray. They will spend a lot of time making sure you all know how to put the brace back on.

Our doctor has many drawers containing the bands of varying lengths. Everything should be right there available for them.

We brought a pair of shorts and a sports bra (you can probably use her bathing suit top). This way she will be comfortable when they are looking at her spine. Bring a big hair clip to sweep up her hair during the exam.

They will probably offer you bodysuits for purchase. Some of our daughters swear by them. Nicole now has 10 and wears them every day with nothing underneath.

We brought snacks with us and we were very glad we did.

Melissa

[MATJESNIC]

Karen,

We Parents have had many (too many) discussions about bodysuits on this forum. The bottom line is that my daughter only likes the Spinecor ones. Some kids like other ones that you can get on-line. Yes, they all have to have crotch snaps. So you will see what your daughter prefers. But if she isn't wearing anything underneath, you will need a lot of them. I am forever washing them and hanging them to dry.

Good luck. Let us know how everything goes.

Safe trip.

Melissa

[cherylplinder]

Karen,
I was remiss that I did not also say that the first case study on Spinecor website is a 9 1/2 year old girl with a 36 degree curve that improved to 2 degrees. There is one case that beat the odds! It all gives me hope. Dr. Rivard was encouraging when he fit Rachel.
Oh yeah! I wanted to clarify that we did not go to Erie for our first appointment. I did not even know about Shriners. I made that appointment with Dr. Sanders get his input on Rachel. I knew at that point that they were at least Spinecor friendly.
If you have a digital camera(I suspect that you do. :D ),take pictures of her in the brace so you will have something to refer to the first couple of weeks. They did that for us in Montreal, and I referred to them more than once.
Hugs,
Cheryl

[Mom37]

Hi everyone whew! havent been around for a while. So busy working on our debut CD (smiles) I sing my husband plays guitar - you can check us out at www.myspace.com/karickter - well I have our appointment all set with Shriners in Erie for Monday 22nd! we are driving there on Sunday (our appt is at 9am - I understand it is a 6 or 7 hour drive for us - keep us in your prayers and thanks for all the support!!

I had to call them back a week later, but had no problems scheduling. Luckily I got their last available day in June and it was on my day off from work.
I got an appointment for June 15th and get the Drs. opinion and for our 3 month appointment. The orthotist will be there. We will fly to Cleveland on American Airlines and drive 2 hours, but am considering trying to fly from Cleveland on United Airlines to Erie, PA if I can. I went through Erie directly.

[Mom37]

Hi everyone whew! havent been around for a while. So busy working on our debut CD (smiles) I sing my husband plays guitar - you can check us out at www.myspace.com/karickter - keep us in your prayers and thanks for all the support!!

Your music is very inspirational and beautiful! You are very talented and I loved listening to all of your songs. Your picture was beautiful too!

[sjw56]

I have just found out my daughter has scoliosis and a 45 degree curve. I'm looking at spinecor. does anyone else out there have a daughter with a curvature close to that so that they can tell me anything. She is just turning 14.

[MATJESNIC]

Do you know what your daughter's risser is? I believe that is a fairly important question.


Melissa

[sjw56]

What is a risser? I don't really know a whole lot about scoliosis. Only what I have read on the web. We have only had one x ray taken at the hospital. We haven't even been able to get into a othopedic doctor yet. Her appointment is a month away. :confused:

[MATJESNIC]

A risser will tell you how much growing she has left. They can see this on her x-ray or sometimes they will take an x-ray of her hand. My daughter is 12 and has a risser of 0. When she gets to 5 she is all done growing.

However, once a girl gets her period for the first time, there is likely to be 2 years left of growth. In some cases that could mean a lot of growth. But my older daughter who is 15 only grew 2 more inches in that time frame. I am hoping that will be the case with my 12-year old. She is almost 5'4" and just started her period 2 months ago.

Hope that helped

Melissa

[sjw56]

Thank you Melissa. She has been on her period for almost 2 years all ready and is 5' 31/2". She has been told that she should reach 5'6'" or 5'7". If what you say is true hopefully she will get that tall. She had a physical 2 years ago and nothing was noticable. I wish we would have seen this sooner. I thought that I 'd try the spinecore brace as I will do anything before I do surgery. That is a last resort!
Sally

[Celia]

Bonjour from la belle province, :D

Just a quickie update....Deirdre has grown 3 cm and is at "1" degree in the Spinecor brace :D :D :D Yippeeeeeeeeeeee!!!

[gerbo]

Bonjour from la belle province, :D

Just a quickie update....Deirdre has grown 3 cm and is at "1" degree in the Spinecor brace :D :D :D Yippeeeeeeeeeeee!!!

:D :D :D :D :D

big, big congratulary hug, you must feel so chilled (no pun intended) and relaxed now. Very happy for you!

Was going to post links on radiation free monitoring method, for info

http://www.springerlink.com/(r24lxiz2bhootw55p2jrhw2t)/app/home/contribution.asp?referrer=parent&backto=issue,1,167;journal,1,105;linkingpublicatio nresults,1:101557,1

and

http://www.spineuniverse.com/displayarticle.php/article330.html

gerbo

[MATJESNIC]

Celia,

I am extremely happy for you and Deirdre. God Bless!

Sally,

Most girls are done growing 2 years after they start their period. So your daughter may be done growing.

I'm not sure if I understood you to mean that you hope your daughter grows a lot more. I hope my daughter is almost done growing because with growth, there is chance of progression.

You can't make any decisions about whether to brace until you find out whether or not she has growth yet. You will have more answers when you meet with an orthopedic who specializes in scoli. Good luck to you.


Melissa

[sjw56]

Melissa,
I'm lost now. Should she grow or not? Will the spinecor brace work if she is done growning? We haven't seen an orthopedic doctor yet so should we not get the brace until we see one? Or is Dr.Deutchman the one we should see?
Sally

[cherylplinder]

Bonjour from la belle province, :D

Just a quickie update....Deirdre has grown 3 cm and is at "1" degree in the Spinecor brace :D :D :D Yippeeeeeeeeeeee!!!


Bonjour mes amis!

Je suis si heureux pour vous! I am still heaving a big sigh of relief and a prayer of thanks. I don't think you will have anymore surprises for Deidre with scoliosis. I think she is virtually cured, although I guess if she needs to wear the brace for 10 years you might not quite call it that! Maybe 2 will do it, but you could stand 10 of this! Nonetheless, I don't think her curve will ever progress! If we make it to the next check up with no changes, I will feel the same way about Rachel.
I feel like celebrating( and crying!) I think I'll go buy some champagne and toast your success. I wish I were there with you, but I am sending a extra big cyberhug to you both!

Cheryl

[gerbo]

Melissa,
I'm lost now. Should she grow or not? Will the spinecor brace work if she is done growning? We haven't seen an orthopedic doctor yet so should we not get the brace until we see one? Or is Dr.Deutchman the one we should see?
Sally

Please do realise that "dr" Deutchman is not a "proper" medical or orthopaedic doctor, but a chiropracter, quite a different thing really. Clearly in the USA anybody can call themselve a docoer, which can be a bit confusing for the patients.

The perceived wisdom is that scoliosis mainly gets worse during growth and bracing only slows this down, or holds it (or improves it if you are lucky) if used during growth. So in a 18 year old you surely would not brace, unless for relief of symptoms, whilst a 10 year old, with lots of growth left, would benefit from bracing.

At 14, and possible nearly finished growing, you will not expect an awful lot of benefit, if at all. Saying that, if it was my daughter, i'd still try the spinecor to see if with the improved postural control it provides some improvement, a small improvement could just keep her away from surgery.
(although even surgery isn't the big disaster you currently might imagine it to be, most people get excellent resutls with a greatly improved quality of life)

gerbo

[MATJESNIC]

Sally,

You must see an orthopedic doctor to get all of your facts. Don't worry about the next step until you have your answers.


Dr. Deutchman is a chiro. who specializes in scoli and is very involved with Spinecor. He would be your brace doctor if you went to him.

After you get some answers from your orthopedic, if you still have questions as to whether Spinecor could work for your daughter, a phone call or visit to Dr. Rivard in Montreal would be my suggestion.



Good luck

Melissa

[Celia]

Thank you Gerbo, Melissa for the well wishes ! I wish I could bottle what we've achieved with Deirdre and send it out to everyone :) Cheryl, your post made me cry. I'm very emotional right now....




Bonjour mes amis!

Je suis si heureux pour vous! I am still heaving a big sigh of relief and a prayer of thanks. I don't think you will have anymore surprises for Deidre with scoliosis. I think she is virtually cured, although I guess if she needs to wear the brace for 10 years you might not quite call it that! Maybe 2 will do it, but you could stand 10 of this! Nonetheless, I don't think her curve will ever progress! If we make it to the next check up with no changes, I will feel the same way about Rachel.
I feel like celebrating( and crying!) I think I'll go buy some champagne and toast your success. I wish I were there with you, but I am sending a extra big cyberhug to you both!

Cheryl

[pat]

Celia, I was looking forward to hearing how your appointment went; so glad to hear everything's continuing to go so well!! We're scheduled to go back up this summer, July or August. Pat

[Celia]

Thanks Pat :) Maybe one of these days we'll bump into each other.... I'm so glad your little girl is doing as well as Deirdre - they're both at "1" !!!!YAY !!! :D

[Alison]

The SpineCor brace finally made it to Australia.....it is being offered in Melbourne.......just a bit of random information for you all for the day

Regards

Alison

[Celia]

Well that's good news ! I went to the Spinecorporation website and it's not listed :confused: I know they also offer the Spinecor through Children's Hospital in Boston and it's not listed either.

[pat]

I don't think they offer it at Boston Children's; I spoke with ortho up there, Dr. John Emans, a few months ago, and he said no, they don't use it. Unless something's changed recently; that would be great.

[Celia]

Ahhhh....so this must be an old link:

http://orthodoc.aaos.org/JohnEmansMD/

[gerbo]

Ahhhh....so this must be an old link:

http://orthodoc.aaos.org/JohnEmansMD/

when i wrote to him 1 year ago (amazing who you start writing to), he said that as they couldn't get the spare parts, they stopped using it. I think this kind of stemmed from the time that the canadian based firm handed over ownership to the spinecorporation in the UK

Obviously, as the home of the boston brace, they will gibve that one preference anyway i would have thought

gerbo

[pat]

Obviously, as the home of the boston brace, they will gibve that one preference anyway i would have thought

gerbo I couldn't agree more. pat

[cherylplinder]

I think Karen has their appointment today at Erie. I can't wait to hear how everything goes. I hope they are very supportive of your choice. We have a couple more forum members and lurkers :D that are going there this month, I think. This will be the first of several. God Bless!

[Mom37]

I think Karen has their appointment today at Erie. I can't wait to hear how everything goes. I hope they are very supportive of your choice. We have a couple more forum members and lurkers :D that are going there this month, I think. This will be the first of several. God Bless!
Yes Karen, We are thinking of you so let us know how it went!

[desheah]

hi karen,

this is my first time posting on the spinecor thread although i've been a secret lurker for a long time! my son is 4 1/2 yrs old and currently sees dr. sanders for serial plaster casting to treat his infantile scoliosis (similar to celia's daughter deirdre's treatment prior to her going into the spinecor). anyway, the reason that i'm coming out and posting is because we will be returning to erie june 27th and 28th. lucas has been in his current cast since feb, and we are possibly going into something removable for the summer. dr. sanders has been thinking about a bivalve cast, but i'm not so sure. since erie is one of the approved spinecor places, i'm definitely interested. of course, we travel from boston, ma so it's a bit of a hike by plane or car. so, the reason that i'm writing is to ask -- did your daughter get fitted for and put into this brace in one day or was it two? i'm always thinking about timing and such. with "hard" braces, it takes 2 weeks to get them made. just my wheels spinning at this point . . .

thanks so much,
deshea
mom to lucas and ruby
north of boston, ma

p.s. we love dr. sanders as well. he is a wonderful person and a compassionate doctor.

[desheah]

karen,

thanks for your quick reply. now i'm really thinking that if dr. sanders is for a brace for the summer, i might request the spinecor. it would be wonderful for my son to have the benefits of this brace while strengthening his trunk muscles.

again thanks!
deshea

[Celia]

Hey Deshea ! I thought I'd pop in and say hi :)

[MATJESNIC]

Karen,

I am extremely happy for all of you. I am kicking myself thinking about all of the money I have spent when I perhaps should have gone to Shriners, as well. If I had to do all over again, I would have done that and then gone to Montreal for a second opinion. Hindsight is indeed 20/20.

I remember when Nicole was complaining about one of the straps hurting and sure enough, it was fine by the next day.

The only think that I do differently than what you mentioned is that I put the bolero and straps into the dryer for a few minutes after washing. That is supposed to keep the straps in good working order.

Are you going back after a couple of months?

We are taking the kids to Disneyworld for an extended Memorial Day Weekend (and my birthday). So I will not talk to you all until next week. We leave early Friday.

Take care everyone. I don't want to think about a spine or a brace for the next week. The only part of the body I want to think about are the ears on a very famous mouse!!!!


Melissa

[cherylplinder]

Oh Karen,
I am so excited that your trip was so wonderful and productive! I was so hoping that it would be!
It could be that you are putting the base on a little high and making your crotch straps high. Look at your pictures and see where the base hits the tree or(in Rachel's case, she would kill me if she knew I said this) I could see her little hinny crack above the base and knew about where to place it.(My pics were of her in undies and bra)
You could also e-mail pics of her in the base to Jonathan for him to double check!( I know you have the technology! :D )
Hooray!
Hugs!
Cheryl

[cherylplinder]

Celia,
What did Deidre's curve measure out of brace when she was fitted for Spinecor? I have always assumed that it was in the 20's at that point, but never asked.

Karen,

It is good that they are seeing you back in one month. The brace will need tightening by then to get the full benefit.

Melissa,
Have fun at Disney! Happy Birthday!

[gerbo]

this is my first time posting on the spinecor thread although i've been a secret lurker for a long time!

welcome, glad you have "come out"


my son is 4 1/2 yrs old and currently sees dr. sanders for serial plaster casting to treat his infantile scoliosis (similar to celia's daughter deirdre's treatment prior to her going into the spinecor).

how well is your son doing in his serial casts??


did your daughter get fitted for and put into this brace in one day or was it two?

all can be done in one day as all the parts are prefabricted

[gerbo]

If I had to do all over again, I would have done that and then gone to Montreal for a second opinion. Hindsight is indeed 20/20.

despite a good current result, and being fitted by andrew mills himself i am still in two minds whether a trip to montreal would pay off, suppose i'll wait and see what july appointment brings



We are taking the kids to Disneyworld for an extended Memorial Day Weekend (and my birthday).

happy birthday to you :) :) :D :cool:

I don't want to think about a spine or a brace for the next week. The only part of the body I want to think about are the ears on a very famous mouse!!!!
have fun :cool: :cool:

[MATJESNIC]

Thanks Everyone,

Take care.

Melissa

[mariaf]

Hi Celia,

That's what is so great about the system at Shriners Hospitals - it is not the insurance companies, but the doctors who decide on what's best for the patient :)

I really believe that's why their treatment is often so effective - because the focus is completely on the child - and not on what an insurance company will or won't allow them to do.

[desheah]

welcome, glad you have "come out"

thanks!



how well is your son doing in his serial casts??

if you don't mind a little history, my son was diagnosed at 18mos with scoliosis at 68o/45o. he wore braces for a year - a custom tlso during the daytime and a charleston bending brace at night. we weren't happy with the results of this type of bracing since the hospital did not like to take x-rays in the brace to find out the correction we were achieving. only out of brace x-rays. we decided to take the plunge and do serial plaster casting at erie with dr. sanders starting at 2 1/2 yrs old for the last 2 yrs. his most recent #s (although they are supine whereas those initial ones were standing) - out of cast 17o/10o and in cast 8o/4o. so i think we are doing really well considering! :D i am nervous about him being in something removable since this has worked so well for us, but his #s are pretty low so i'm hoping that for 3-4 mo we can get some good swimming and pt in to strengthen his back muscles.


all can be done in one day as all the parts are prefabricted

i'm really happy about that!

thanks,
deshea

[Sherie]

Hi everyone,

I haven't posted on this thread yet, but have been following for a few weeks (Hi Cheryl). My daughters curves are 34T/45L and has been in the Spinecor brace for about 6 weeks now. There was only a 2deg correction in brace at both the initial fitting and 1 month eval. We live in Texas and are seeing someone here local to us. I spoke with Dr. Couillard yesterday and she said these are the results that she would expect with a 45 curve, that it's already rigid and very hard to correct.

My question is this, has anyone here had better results in the Spinecor with a larger curve like my daughters? We are most likely going to Montreal to get a second opinion from them despite the fact that she wasn't optimistic about being able to correct it more.

Thanks for any replies,
Sherie

[cherylplinder]

Hey Sherie!
Welcome! I was going to send you a PM. Did they do a supine x-ray when they fitted her for the brace? That is how Dr. Rivard determined the rigidity of Rachel's curve. Standing she was 38 out of brace, but her supine the same day was about 22.
Hugs to you!
Cheryl

[pat]

Hello! We have been so successful finding bodysuits w/snaps at www.bodysuit.com, and they're less than 1/2 the cost. Great news, just got notice from our insurance co., them are reimbursing us the entire cost of Spinecor brace and treatment. p

[Sherie]

Hi Cheryl,

No, she didn't have a supine. They did lateral bending and said she was still flexible by that. Has anyone ever been told this? I think a 2nd opinion is definitely in order.

Thanks,
Sherie

[cherylplinder]

Hi Cheryl,

No, she didn't have a supine. They did lateral bending and said she was still flexible by that. Has anyone ever been told this? I think a 2nd opinion is definitely in order.

Thanks,
Sherie

Sherie,
I've heard of using that as a way to determine flexibility, also. But a second opinion can't hurt.

[Sherie]

Sheena is 13 and her risser is 1 to 2, according to chiro. My guess is at least 2. He said her curve is still very flexible so he's optimistic. I would just feel a lot better if I had the 2nd opinion, then I wouldn't be wondering if we are doing the best we can.

Sherie

[MATJESNIC]

Hi Everyone,

I know I already said a big good-bye, but I am still here.

In response to the question about a large curve getting a good correction in a brace, my daughter Nicole got a 10 degree correction for both of her 40 degree curves in her spinecor. I would take a trip to Montreal to be sure that the docs in Texas are doing the best they can do for her. I am not telling you what to do. I am telling you that if it were my daughter I would do that. In fact, I already did that with my daughter. It was the most productive trip we ever took.


Melissa

[MATJESNIC]

Pat,

I am so happy for you. I still have to fight the fight. Are you saying that you were able to be considered in-network? That is what I am fighting for. I am telling them that I had no choice but to go out of network because there is no Spinecor in-network. But I have to convince the docs from the insurance company that Spinecor was the best choice for Nicole.

Any advice anyone?

Melissa

[Sherie]

Thanks Melissa, that's what we had decided to do, but this gives me hope that there is more we can do for her.

Sherie

[gerbo]

Hello! We have been so successful finding bodysuits w/snaps at www.bodysuit.com, and they're less than 1/2 the cost.

the alternative is not to use bodysuits at all, they are not essential. Lisanna just wears normal underpants (not sure how you call these for girls) with the current fashionable ones which have slightly extended legs being more suitable as they protect the groin better against rubbing from straps. On top she just wears the bolero straight on her body, which is entirely comfortable.

gerbo

[gerbo]

But I have to convince the docs from the insurance company that Spinecor was the best choice for Nicole.

Any advice anyone?

Melissa

if you need to convince the docs you just have to quote the published evidence, comparing what is known about hardbracing (at best it will hold at current level and even that is not garanteed)to what is known about the spinecor.(something like 90% stabilise or improve with improvement being much more permanent) For the latter you will need to quote the article which was published in "Spine" 2003 and which is available on the spinecorporation website.

i would quote that your daughter was not able to tolerate hardbracing (whether true or not) and that with a hard brace not worn as much as advised it was never going to work anyway. She can tolerate this one and wears it as prescribed increasing her chance of succes (and avoiding expensive surgery)

If you know the figures you could try to compare the cost of hardbracing with a new brace every year with the once off cost of a spinecor with the occasional replacement part.

I'll bet "all together" we'd be able to put together a outline letter which everybody who needs to could use for this purpose.

Once you put something together feel free to post it or sent me copy by email so we can help you to improve it.

gerbo

and now, get off that computer, pack your bags and aligator traps and off to disney land! Enjoy, relax, laugh, forget all your troubles and be happy!!

[MATJESNIC]

Gerbo,

Thanks for the advice and the laugh!! See, sometimes I understand your sense of humor!!! I have been doing nothing but working, washing, and packing for the last few days. I will definitely need a real vacation when I get back!! lol ! I will certainly make a great effort to convince these docs. Thanks again. Have a great week everyone.

Melissa

[sportsdoc]

hey ppl..long time no posting lol...been so busy didn't have time to drop by lately...
just thought i'd chime in on couple of posts

for flexibility tests, it doesn't matter if you do supine(actually that's the worst) prone, lateral bending, or some actually let you hang onto a bar and let the gravity pull you down...as long as it stresses the spine it's all good...

I saw someone mentioning Dr in texas...I'm guessing it's Dr. Smouse...
I've spoken to him as well and he seemed very knowledgeable in the subject of scoliosis...very nice guy...I believe he's the only one doing spinecor in texas...he teaches other docs how to manage scoliosis..

anyway I gotta jet...don't have much time for forum these days...g'day all...

[desheah]

oh well, after a couple of e-mails back and forth with dr. sanders at erie, he feels that the spinecor is not a good option for lucas at this age (and perhaps height). so it looks like we'll get a tlso brace made for the summer. at least it will be made under traction like his casts and will be well-moulded to his body. i believe that we'll be going back to children's in boston for some possible fitting, but i'm glad that the inital mould will be made in erie.

well, that's the news,
deshea

[cherylplinder]

Deshea,
I'm sorry. I know you were looking forward to the freedom this brace offers. But Dr. Sanders is such a wonderful doc and your baby is doing so well, I know you feel comfortable with his recommendation.
What reason did he give?
God bless
Cheryl

[Celia]

Me too ! I'm really sorry to hear this. You could always pay a visit to Dr. Rivard :D



hugs,


celia

[pat]

the alternative is not to use bodysuits at all, they are not essential. Lisanna just wears normal underpants (not sure how you call these for girls) with the current fashionable ones which have slightly extended legs being more suitable as they protect the groin better against rubbing from straps. On top she just wears the bolero straight on her body, which is entirely comfortable.

gerbo

I have tried talking to her about going w/o the bodysuit, and she just says it'll hurt too much. I think I'll work on her a little more; it makes sense if you can go w/o it! Thanks p

[pat]

I'll bet "all together" we'd be able to put together a outline letter which everybody who needs to could use for this purpose.

Once you put something together feel free to post it or sent me copy by email so we can help you to improve it.

I wrote how a 20% reduction in lung capacity and overall muscle atrophy is common during hard brace . . . Spinecor treatment has been effective in 89% of cases either by stabilization or improvement in cobb angle of curve (especially when started early), and the whole compliance issue w/hard bracing vs. Spinecor bracing and other particulars specifically for our daughter. p

[cherylplinder]

Do you know if the reduction in lung capacity is reversible?
Just for the information. The Boston did not touch Rachel's curve. There was no reduction of her thoracic curve. I am fairly certain, at least for now, that this is working. Rachel grew a couple of centimeters, and her curve in brace went from 30T/19L to 23T/22L. I hope that means we will have success. I guess I am nervous that we will hit a particularly aggressive growth spurt that will not respond to the brace.
I am still so grateful that she is not in a hard brace. She is so comfortable! And so far results are good.
I would nominate Drs. Coillard and Rivard for a Nobel prize. That is how amazing I think this brace is. I probably sound stupid. Oh well! That never stopped me before :D :D :D !

[Celia]

No it doesn't sound dumb at all ....I would nominate them too ! :D In the event that anyone is curious here is a website on conditions for nominating someone for the Nobel Prize:

http://www.britannica.com/nobel/nobelprizes.html

[Celia]

Do you know if the reduction in lung capacity is reversible?

This is something I've been wondering about too ! What if you have a small child under the age of 8 who is wearing a restrictive confining brace ???? Will they ever regain their lung capacity ? What kind of things can parents do to prevent this from happening ? Are there exercises that can be done ?

[cherylplinder]

OK, I ditto Celia's questions from the above post. If anyone knows the answer, let me know.
Second,
Sarah left for her missions trip today. She will be gone 10 weeks. I just felt blessed. She has often been lonely, even though she is a social animal. She will be with a great group of kids all summer. No loneliness this summer. She will make lifetime friends. I am smiling.
Pray for her protection. She will be in the inner city. It is a rough environment. The kids are well supervised, but pray for her anyway.

You all have a warm place in my heart!
Hope you are looking forward to a great summer!
Hugs!
Cheryl

[Celia]

Cheryl,

Lots of prayers for your little girl, I'm sure she'll do great !

As you said in your P.M., I could request a lung function test for Deirdre and holding one's breath in the water seems like a good idea :D Deirdre is doing lots of bobs in her swimming classes. I was doing a google search and I found the following abstract so I guess I shouldn't worry too much about all those years in casts:

Respiratory Function at Maturity in Infantile-Onset, Non-Congenital, Non-Syndromic Scoliosis

Caroline J. Goldberg, M.D.
Children's Research Centre
Our Lady's Hospital for Sick Children
Dublin, Ireland

Imelda Gillic
Children's Research Centre
Our Lady's Hospital for Sick Children
Dublin, Ireland

Olivia Connaughton
Children's Research Centre
Our Lady's Hospital for Sick Children
Dublin, Ireland



Abstract from the SRS 2003 Annual Meeting

Background Data: The natural history of infantile onset scoliosis varies from complete resolution to severe and relentless progression throughout the growth period. Historical studies of untreated cases have shown an increased morbidity and mortality from respiratory compromise in those with severe deformity. Treatment aims to reverse the deforming process and prevent these sequelae. Because the condition is uncommon and results cannot be finally assessed until the end of growth, outcome tends to become lost in the discussion of newer methods.

Study Design: Prospective review of respiratory function in patients with non-congenital, non-syndromic, scoliosis of infantile onset (before age 4 years) who were at least 15 years old at the time of study. Method: After ethical approval and informed consent, patients with infantile onset scoliosis (N=23, 11 male and 12 female) were recalled for full pulmonary function testing (spirometry, lung volumes, gas diffusion) and surface topography. Results were correlated with radiographic and surface topographic parameters and with treatment history.

Results: Those whose scoliosis resolved or stabilised at an acceptable stage, (N=6, 1 male, 5 female) with (N=3) or without (N=3) serial casting, had normal cosmesis and pulmonary function at a mean age of 21.1 years (mean FVC=98.83%, FEV1 = 98.7%) Those who were managed by casting or bracing and had avoided surgery until after age 10 (N=6, 3 male, 3 female, mean age at surgery 12.9) had variable cosmesis and good pulmonary function (mean FVC=68.33%, FEV1= 71.5% at a mean age of 20.3 years). Those who received surgery before age 10 (N=11, 7 male, 4 female, mean age at surgery 4.1 years, and at testing 20.5 years) had significant recurrence of deformity and respiratory restriction (mean FVC=41%, range 12-67%, FEV1=41%, range 14 - 72%). In all cases, measures of respiratory function correlated positively with age at surgery and negatively with the most recent Cobb angle and surface topography parameters. DISCUSSION: The aim of early surgery was the preservation of respiratory function, and the control of deformity. It was recommended only for those who were failing to respond to or inappropriate for serial casting, i.e. the malignantly progressive. Those who had the worst prognosis in infancy, now have the worst outcome. While there is variation, there is also a clear pattern of continued progression of deformity after early surgery and a concomitant decline in pulmonary function, such as would be anticipated in an untreated case.

Conclusion: In this type of scoliosis, numbers will always be small and natural history plays out over a long time, making meaningful assessment difficult. It is not possible to form an opinion on the efficacy of non-operative management, but the evidence suggests that early corrective spinal surgery has not prevented deformity or preserved respiratory function.

[MATJESNIC]

Hi Everyone,

We had a great vacation. I thought of you, Celia, in Epcot when we saw Canada. Of course, I thought of you, Gerbo, when we saw England. I heard a lot of lovely English accents in Disney. Nicole and I love those accents. I know, Gerbo, you are thinking that I'm the one with the accent. I also spoke with a Mom who was there from England with her kids for 3 weeks.

Highlight of the trip was staying at the Hard Rock Hotel and going to Universal and Island of Adventure. They gave us adjoining suites because the room we had booked was unavailable. The pool was so nice and the parks were walking distance. You get to avoid the lines for the rides with an express pass.

Nicole wore her brace and bodysuit in the heat every day but the last. I was very proud of her. I hope you are all doing well. I have tons of wash to do.


Take care,

Melissa

[Celia]

Melissa,

You actually thought of us when you were on vacation ? That is so sweet ! :p I hope you and your family had a great time and what a wonderful way to celebrate your birthday.



hugs,

celia

[desheah]

okay, i decided to go directly to the inventor since dr. sanders isn't convinced about the spinecor in young children. i have an appt. for tues july 25th at 12:30p at ste. justine's. it can't hurt!

deshea

[MATJESNIC]

Deshea,

I think you made a wonderful decision. I would do the same if it were my child. I keep having great ideas after the fact. This way you will reduce the amount of "What if?" and If Only..." I wish you the best of luck.

Celia,

Of course, I always think of my "friends" from other countries whom I have never met. We all share a common bond that many of our "real friends" in our lives can't understand. I appreciate each one of you.

Melissa

[Celia]

Melissa,

I can't even talk about scoliosis with inlaws who themselves have it :eek:


Deshea,

I won't be here that week to get updates, we're at the cottage for 10 days with no internet access. On the bright side, there will be lots of sun and sand.... maybe you can send smoke signals :D


celia

[cherylplinder]

Oooooooooooooooooo! That sounds nice. Y'all make me want to plan a vacation.

Best of luck, Desheah!

[AILEA]

Melissa,
Your vacation sounds wonderful! It´s great to have some days to enjoy your family, and to stop thinking about scoliosis! You make me want to plan a vacation too.! In fact we have been planning a vacation in the Caribean for months, but my teen-daughter is not very happy with the idea of going with her parents, and i´m not sure if i want to left her with her "grands"....So I suppose that this summer we´ll choose to have a relaxed vacation in the spanish coast (again)
I usually think of all you too, nobody out there can understand what you feel. I don´t use to post, but i "come" to this forum nearly every day, and i´m allways looking forward to hearing good news from someone.
Cheryl,
I´m glad to see your daughter is doing great with the brace, I´ve read your latest post; I think it´s very important to achieve a correction not only in the degrees but in the posture and appearance.

Best wishes!!

[cherylplinder]

Hey Ailea!
I have been thinking about you every day and missing you! How are you? How is your summer going?
I hope you have the best news at your next checkup! Hopefully the positive changes you noted in torsion will be complemented by a decrease in degree of curvature.
I know it is a while til your next check up.
BIg Hugs!
Cheryl

[Mom37]

Shirley
At first Pooks correction was only 5 degrees but when Jon re-measured her original xrays he determined that the curve was greater than we thought so the correction then went up to 10 - I saw your old post about the small amt of correction concern


Karen,
I am so glad you were able to get Spinecor! I have alot to catch up on. I was on vacation for 12 days and there is about 4 pages! Thanks for the info. We were told that curve was higher degree than original xray of 30 to 38, but only because of the way measured. After initial bracing only 5 degree correction from new measurements to 32, but at 1 month 10 degree correction to 28. I was thrilled to have Andrew Mills do the one month adjustment. We are going to Shriners in Erie in less than 2 weeks for her 3 month adjustment from initial bracing and opinion for Dr. Sanders! Shirley

[Mom37]

Hi everyone,

I haven't posted on this thread yet, but have been following for a few weeks (Hi Cheryl). My daughters curves are 34T/45L and has been in the Spinecor brace for about 6 weeks now. There was only a 2deg correction in brace at both the initial fitting and 1 month eval. We live in Texas and are seeing someone here local to us. I spoke with Dr. Couillard yesterday and she said these are the results that she would expect with a 45 curve, that it's already rigid and very hard to correct.

My question is this, has anyone here had better results in the Spinecor with a larger curve like my daughters? We are most likely going to Montreal to get a second opinion from them despite the fact that she wasn't optimistic about being able to correct it more.

Thanks for any replies,
Sherie
Sherie,
We live in Arlington, TX. My daughter went to NYC for initial bracing, and we visited CA, as Andrew Mills, head of Spinecor, fitting for final training at Dr. Gorries office. My daughter was at 38 degrees per Dr. D in NYC before brace at initial bracing. Never had supine, or lateral bending xrays done. Per above post, we were concerned with little correction on initial, but OK with Dr. D. Real pleased with second opinion of bracing with Andrew Mills at 1 month 10 degree in brace lower at 28 than 38 out of brace a month before. Felt it wise to seek Orthopedic who knows Spinecor. We are going to Shriners in Erie, PA on June 15th. I called Erie directly and said I wanted second opinion. We have an appointment, but they said if we hadn't, that many patients far away can send in Dr.'s info and Xrays for opinion to possibly avoid trip or see if needed. Did you visit Drs. Smouse? I have had other options, but planned on using them in Houston until these other opportunities came. I may still follow up there since it is the closest to me, about 4-6 hours. I am just checking Shriner's first due to expense as well. Shirley

[Mom37]

if you need to convince the docs you just have to quote the published evidence, comparing what is known about hardbracing (at best it will hold at current level and even that is not garanteed)to what is known about the spinecor.(something like 90% stabilise or improve with improvement being much more permanent) For the latter you will need to quote the article which was published in "Spine" 2003 and which is available on the spinecorporation website.

i would quote that your daughter was not able to tolerate hardbracing (whether true or not) and that with a hard brace not worn as much as advised it was never going to work anyway. She can tolerate this one and wears it as prescribed increasing her chance of succes (and avoiding expensive surgery)

If you know the figures you could try to compare the cost of hardbracing with a new brace every year with the once off cost of a spinecor with the occasional replacement part.

I'll bet "all together" we'd be able to put together a outline letter which everybody who needs to could use for this purpose.

Once you put something together feel free to post it or sent me copy by email so we can help you to improve it.

gerbo

and now, get off that computer, pack your bags and aligator traps and off to disney land! Enjoy, relax, laugh, forget all your troubles and be happy!!
Thanks for the advice and question. I too want to get in network, but I did get out of network paid to me. Shirley

[Mom37]

I have tried talking to her about going w/o the bodysuit, and she just says it'll hurt too much. I think I'll work on her a little more; it makes sense if you can go w/o it! Thanks p

Lori's teenager doesn't use one, but my 12 year old doesn't want without either. We have been trying camisoles of different fabrics, but she likes the small sleeve to go under her arm, under the strap, and the trees to line up the brace too. Dr. Deutchman in NY had them for 30.00 for extra. One was with the brace. I think my insurance denied and has not yet reimbursed for it. We have 2 but would like more also. We are trying other options for sleeveless clothes, but like the v neck on the Spinecor bodysuites and to help with the crothstraps comfort as another bonus to my child. Shirley

[Mom37]

hey ppl..long time no posting lol...been so busy didn't have time to drop by lately...
just thought i'd chime in on couple of posts

for flexibility tests, it doesn't matter if you do supine(actually that's the worst) prone, lateral bending, or some actually let you hang onto a bar and let the gravity pull you down...as long as it stresses the spine it's all good...

I saw someone mentioning Dr in texas...I'm guessing it's Dr. Smouse...
I've spoken to him as well and he seemed very knowledgeable in the subject of scoliosis...very nice guy...I believe he's the only one doing spinecor in texas...he teaches other docs how to manage scoliosis..

anyway I gotta jet...don't have much time for forum these days...g'day all...
We haven't gotten any of those tests or xrays for rigidity and flexiblity. Do you recommend I ask at Shriners? Andrew Mills mentioned her shoulder tight, and Dr. Gorrie mentioned getting some chiropractic here if there is someone familiar with Scoliosis treatment locally, but I haven't reasearched it yet.

[Celia]

Ailea,

I wouldn't take a Caribbean trip right now, last week was the official kick off of hurricane season in that area. :eek:


What ever happened to Gerbo ????

[AILEA]

Celia,

I know that now it´s not the best season if you want a Caribbean trip,...In fact we´ve been planning it since january; we´ve postponed it, until next winter.
I was also asking myself where Gerbo is; I hope it has something to do with the beginning of the European football championship...

[meagain]

Hi everyone: I am posting for the second time only but feel familiar with this cast of characters ;)

My daughter Olivia is at about a 45 degree curve, appears flexible, ortho says she is done growing at 13, but just started her cycle. The ortho in Seattle recommended a hard brace.

We have gone to several chiropractic and physical therapy appts. since finding the curve 2 months ago.

I really want to get on the spinecor program-but wondering if it's just wishful thinking that it will make a difference.

Olivia's grandpa referred her to Shriner's in Portland. Is Sander's in Erie the only qualified Spinecor provider with the Shriner's? How should I proceed? Thank you for any ideas- Megan

[desheah]

hi megan,

if you go here: http://www.spinecorporation.com/English/TreatmentCenters/USA.htm it shows a list of places that offer the spinecor. i didn't see any listed in washington state. also, i didn't see any other shriners listed. sorry!

deshea

[LATigner]

I'm not a doctor so can only speak from personal experience. My daughter just turned 16 and has two curves in the 45-48 degree range. She wore a hard brace for about 2 years, curves progressed 8-10 degrees. She got a SpineCor brace last October and in the brace the curves reduced about 10 degrees. When we met with Andrew Mills, head of SpineCor, he said we cannot hope for a tremendous amount of correction due to her Risser of 4, and almost 2 years since she started her period but we can get some correction, some derotation, better posture and stabilization of the curve - all of these things hopefully keeping surgery out of the picture. My understanding is that girls can grow for about 2 years after they start their period.

A hard brace is a miserable experience and most teenagers are not very compliant with the 23 hours prescribed. In addition they weaken the muscles and do nothing to help correct posture or retrain the soft tissues to hold a correct position. It's strange they want to prescribe one if they think she is almost done growing. It's my opinion that you would get more out of SpineCor. We have a wonderful doctor here in So.Ca. that fits the brace. I think the Erie Shriners is the only Shriner facility that does it. I'd be happy talk to you in person if you want to see me a private e-mail with your phone number.

[gerbo]

I thought of you, Gerbo, when we saw England. I heard a lot of lovely English accents in Disney. Nicole and I love those accents. I know, Gerbo, you are thinking that I'm the one with the accent.

its getting worse, first everybody thinks i am a mother and now i am being labelled as a british person, am i loosing my identity?? :rolleyes: :rolleyes:

for the record I am through and through and truly dutch (that is; i was born in a small country called the netherlands, for those amongs you who are geopraphically challenged, this is located between the england, germany and france (well, it is belgium really, but can i expect any inhabitant of the american continent to have heard of belgium??)

so, when i talk english, i speak it with a dutch accent and a slightly irish intonation (blame it on my father in law)

(and when i speak dutch i speak it with an anglo-irish accent as well)

[gerbo]

What ever happened to Gerbo ????

i am being missed :D :D :D :D , how absolutely lovely!


I was also asking myself where Gerbo is; I hope it has something to do with the beginning of the European football championship...

no, sorry for not asking for forum permission ;) ;) , we went over last week to holland (=the netherlands)for a week of holiday , visiting family, old friends, lots of cycling, swimming and a few rollercoasters. Similarly to melissa's experience, and in contrast to last year when she wore the hardplastic tslo on a similar trip, lisanna coped very well, could do most activities with the spinecor on and was so much more a normal and happy person.

we had a great time! :cool: :cool:

[gerbo]

I really want to get on the spinecor program-but wondering if it's just wishful thinking that it will make a difference.



at 13 just having started her periods, she should have had her main growth spurt, but still should have a couple of years of slower growth to go

at 45 degree i cannot see how a hardbrace is going to make any difference and inevitably she is going to get at a level where surgery will be required (which isn't necessarily the disaster people sometimes make it out to be, usually excellent result with a "normal" quality of life after) In any case, with the prospect of succes min imal, nhow are you going to convince your daughter to wear the damned thing for 20 hours+ in the first place, she'll hate it terribly, and it will for the time she is wearing it, reduce the quality of her life.

More succes with spinecor?? Not particularly likely, but you can try, and at least it will be bearable and wearable. I think you might as well try it, you have nothing to loose i think

gerbo

[cherylplinder]

Gerbo,
I missed you, too! I was getting worried. You can travel without our permission. :D On the other hand, let us know so we won't worry our feeble brains. :D You didn't know we cared so much, did you?

Most of our on line friends are multilingual!I feel so inadequate. I am also geographically challenged, although I did know where Belgium was! But please describe any and all geographical locations in detail.( It's O.K., so far I know where Cyprus, Spain, the U.S. and Canada are, also!)

American schools do a terrible job with foreign languages and geography.

I am a science major, so I am better at that! I love math, too!

[Mom37]

Hi everyone: I am posting for the second time only but feel familiar with this cast of characters ;)

My daughter Olivia is at about a 45 degree curve, appears flexible, ortho says she is done growing at 13, but just started her cycle. The ortho in Seattle recommended a hard brace.

We have gone to several chiropractic and physical therapy appts. since finding the curve 2 months ago.

I really want to get on the spinecor program-but wondering if it's just wishful thinking that it will make a difference.

Olivia's grandpa referred her to Shriner's in Portland. Is Sander's in Erie the only qualified Spinecor provider with the Shriner's? How should I proceed? Thank you for any ideas- Megan

Yes the Erie, PA location is the only Shriner's that is a Spinecor provider, I understand. I called them directly at 814-875-8700 and are going there June 15th. My daughter will have had Spinecor brace for 3 months next week. We are going as a second opinion and 3 month "adjustment". We have been told Dr. Sanders is not bias to one brace or another. If you have a local chapter or Hospital then I'd call them and just inquire if the have Spinecor or if they can help sponsor you. I was told by another forum member that may be possible to defer travel expense but it takes longer. We got an appointment date set up within a week from initial contact for 3 weeks from that time. I think it is smart to go if you can. The cost, even with good insurance can add up over time. Best wishes to you and yours. Shirley

[Celia]

i am being missed :D :D :D :D , how absolutely lovely!


Yes, we did miss you Gerbo ;) *wipes a tear*

[meagain]

Thank you everyone for your encouragement to do what we gotta do. I'll be asking the local Shriner's for a referral to Erie. Will be talking to the admissions gal today. By the way Kingston is on the beautiful Kitsap Peninsula about an hour away from Seattle. ;)

[Celia]

I LOVE Seattle, we were there a few years ago when we did a road trip along the west coast. Good news to report.... I got the cheque in the mail this week from the insurance co. for the 4 replacement elastic bands. :D

[pat]

Hello all! Here's a U.S. distributor that just got on board and is now offering the brace

http://www.beckerorthopedic.com/spinecor/

[meagain]

Thank you Pat: I'll be giving this infor to our orthotics guy (who said they quit using Spinecor because parts were hard to get) and chiropracters. Megan

[MATJESNIC]

Pat,

Thanks so much. I really enjoyed watching the video and seeing my two favorite doctors. I just made a short dvd of Nicole doing her tap and ballet classes in her spinecor brace. I thought the doctors in Montreal would like to see it. Maybe they can use it for something. I will either send it to them or give it to them in July.

Hope everyone is doing well.

Melissa

[Celia]

Melissa,

I'm sure Drs Rivard and Coillard will be thrilled to see the DVD. The last time we were there, Deirdre brought with her a picture she drew of herself standing in a garden with a rainbow overhead. The real spooky thing about the rainbow was that the uppermost colour was thick black. In another picture she drew for her previous ortho, she was in the picture with black clouds surrounding the sun. She's only 5 years old.....I don't know where she gets these things :confused:

Oh....next time any of you are there take a look at it - it's on display in the waiting room with a hundred other pictures. :D

[pat]

Hello! You're welcome!!! We're heading back up to Montreal sometime in July.
Pat

[MATJESNIC]

Pat,
I hope we are there the same time. Nicole's appt is on July 20 at 1:00.
I'm sure it will be a short one. We're not even doing x-rays.

Melissa

[sportsdoc]

http://www.canada.com/montrealgazette/news/story.html?id=628ebcc9-80c2-4b44-b5db-a595cb3a74fc&k=75291

Just thought you guys'd like to know how cutting edge St. Justine's is with scoliosis.

[gerbo]

Just thought you guys'd like to know how cutting edge St. Justine's is with scoliosis.


....time will tell....

[MATJESNIC]

Can one of you post that on SpineKids? You can probably do it easier than I could.

Thanks so much for that article.

Melissa

[drummergrl]

that's awesome!!! All the kids on SK would be really excited to hear that! :)

[Mom37]

We were advised that no bracing will probably prevent her from eventual surgery but did not recommend surgery now. The orthotist was not there but was scheduled to work at the time to appointment was made. We didn't get to have her 3 month brace adjustment, and were disappointed. We will still continue Spinecor, and he said if it is not disruptive to us we could try it. We asked if xrays would be done and they did, but he later recommended only PA (back facing) xray every 6 months to minimize exposure from getting breast cancer. She has had alot of xrays. 9 total in 4 months if you include the hand xray Shriners did to see her growth. My daughter was very upset. She is really scared about surgery, so we let her know that's one doctor's opinion only. The first Pediatric Orthopedic recommended hard bracing only. We are concerned about her curve being unflexible.

[Abby...]

I recently had a SpineCor back brace. They do allow you to move but aren't all that comfortable. On the other hand, in my opinion MUCH more bearable than more rigid types.
-Abby

[Celia]

So....how is everyone managing the summer heat with the brace ? Deirdre gets hot very quickly - I think the body suit adds to the problem. She had a fever a couple of weeks ago and I had to remove the body suit so she could stay cool. She has been swimming a lot..... on weekends when we go to the lake she doesn't wear the brace for 4 - 5 hour stretches. I feel really guilty about this - I can't wait for Fall.