New member

Report post · January 9, 2008

I have written down the name of the brace. We are currently in Seattle and at

the mercy of Children's hospital- I found a couple of orthopedics but then only

work with adult patients. However, the Dr we saw seems like even if he doesn't

suggest it, he would be willing to prescribe as long as it wouldn't hurt her-

worth a try to prevent further damage.

Thank you

Diane

Re: New Member

Get yourself to a good scoliosis specialist. I have scoliosis and

had 3

surgeries. The last one with Dr. Boachie in NYC. Thank God for him. Anyway I

was keeping a close eye on my kids and my daughter at around 12 was diagnosed

with scoliosis. In October it was 15 degrees thoracic and 5 lumbar. When

she was x-rayed again 3 months later she had progressed to 21 degrees/15

degrees. That is when I took her to Dr. Boachie. He had explained to me you

need

to brace a child before they complete puberty and their bones are completely

done growing. The object in bracing is to keep the curve from getting worse

while they are in this stage. The theory is that if you can keep a curve

below 35 degrees after reaching puberty, the curve should not progress into

adulthood. Not only did he keep her curve from progressing he got it back down

to 12 degrees/0 degrees. She wore a Spinecore brace for 2 years. I did a

lot of research and everything he said is the true opinion of most scoliosis

specialists. Don't wait until your daughter is worse. Get her to someone who

really knows this disease - not just an orthopedist. Sometimes even bracing

won't keep a curve from progressing. He said he would know that within 6

months if the brace was working or not. It was definitely worth doing the

research and the pain in the neck of riding into the city every month. We both

go

for check-ups with Dr. Boachie in 2 weeks. He is still monitoring her but

so far so good.

Good luck,

Kathy

************ **Start the year off right. Easy ways to stay in shape.

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Report post · January 10, 2008

Diane,

Most curves are idiopathic, which simply means there

is no known cause. That doesn't mean there are no

treatments.

My curve was idiopathic as was the case of all the

girls I knew in school who had scoliosis. All of us

were treated by different doctors at different times,

but we all wound up wearing braces & having surgery. ~Moonbeam

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Report post · January 10, 2008

Diane,

Your orthopedist sd that since it was idiopathic that

when she was done growing it would stabilize...that

doesn't address the issue of how much it will progress

while she is growing. During growth spurts is when

mine progressed the most.

He is correct in saying that PT could help the comfort

level & it cannot correct a curve. Whatever level of

activity she can perform to strengthen & stretch will

be beneficial. Where is her curve? Is it a C curve?

Thoracic (shoulder)?

If it's at all possible you should see a scoliosis

specialist & not just an orthopedist. The scoliosis

specialists know so much more about it than

orthopedists do. If you can't find a scoliosis

specialist, then do get a second opinion from another

orthopedist.

It sounds like the one you have consulted is basing

treatment (or nontreatment in this case)on the fact

that it's idiopathic. Ask him if it were not

idiopathic how would he treat it.

Let's say you have a cold, you caught from your

sister. You'd treat the symptoms. What if you had a

cold you didn't know how you caught? You'd treat the

symptoms. I know that's oversimplifying, but it's

basically the same thing.

The point is to treat the curve while it's small. The

more it progresses, the more it will have to be

corrected via any method - bracing, surgery, etc.

Since she already has muscle weakness & lung issues,

the progression of the curve will further affect these

areas.

As for her hip hurting, it could be any number of

things. It could be the scoliosis & it could be

something else. Remember when the spine curves, the

body compensates constantly trying to maintain the

vertical position. Muscles & bones are being pulled in

ways they normally wouldn't. Is the hip that's hurting

on the same side as the curve?

~Moonbeam

________________________________________________________________________________\

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Report post · January 10, 2008

So it sounds like he perhaps did not completely inform us- he did say based on

her hip xray that he thinks she is almost done growing, which he said was good

news.

I know you can see it her shoulders, and her neck, but I guess you would say the

curve is at the thoracic level. The cardiologist we saw(extra caution due the

muscle disorder) said that the curve was not interfering with her lungs or heart

right now.

What you say makes very good sense. Her next appt is the beginning of March

with him. However she has an appt with her family Dr next week and I am going

to ask her to look again and ask her advice. It makes good sense about the

bracing.

The orthopedic said something about how using a brace before 35 degrees really

has been proven to slow or stop things- I also wonder if he is worried about

reducing her already reduced muscle stability by bracing-

I really think the hip is posture related. I have a horrible back(mild

scoliosis, but it is other issues causing grief)and if I throw my cervical out I

change how I stand which cause all sort of havoc...

I am going to do a little research about finding someone that is a scoliosis

specialist that will see children. Hopefully with in driving distance, it would

be good I think to have a second opinion.

Thank you

Diane

Re: New Member

Diane,

Your orthopedist sd that since it was idiopathic that

when she was done growing it would stabilize... that

doesn't address the issue of how much it will progress

while she is growing. During growth spurts is when

mine progressed the most.

He is correct in saying that PT could help the comfort

level & it cannot correct a curve. Whatever level of

activity she can perform to strengthen & stretch will

be beneficial. Where is her curve? Is it a C curve?

Thoracic (shoulder)?

If it's at all possible you should see a scoliosis

specialist & not just an orthopedist. The scoliosis

specialists know so much more about it than

orthopedists do. If you can't find a scoliosis

specialist, then do get a second opinion from another

orthopedist.

It sounds like the one you have consulted is basing

treatment (or nontreatment in this case)on the fact

that it's idiopathic. Ask him if it were not

idiopathic how would he treat it.

Let's say you have a cold, you caught from your

sister. You'd treat the symptoms. What if you had a

cold you didn't know how you caught? You'd treat the

symptoms. I know that's oversimplifying, but it's

basically the same thing.

The point is to treat the curve while it's small. The

more it progresses, the more it will have to be

corrected via any method - bracing, surgery, etc.

Since she already has muscle weakness & lung issues,

the progression of the curve will further affect these

areas.

As for her hip hurting, it could be any number of

things. It could be the scoliosis & it could be

something else. Remember when the spine curves, the

body compensates constantly trying to maintain the

vertical position. Muscles & bones are being pulled in

ways they normally wouldn't. Is the hip that's hurting

on the same side as the curve?

~Moonbeam

____________ _________ _________ _________ _________ _________ _

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Report post · January 11, 2008

I can tell you from experience as all these people can - GO SEE A SCOLIOSIS

SPECIALIST. Idiopathic means it is not congenital. Congenital meaning she

wasn't born with it or being caused by another disease like cerebral palsy.

My daughter and I are actually in a study where they are trying to locate

the marker or gene that causes scoliosis or to find out why some people

progress and others don't. But I can tell you when I was 12 my curve was 35

degrees. Was sent to a chiropractor for the discomfort and muscle

strengthening.

Sure I felt better but it did nothing for the curve. They didn't know back

in the 1970's at what degree you would progress. My parents opted out of

surgery. By the time I was 16 my thoracic curve was 48 degrees. By the time I

had my first surgery in 1997 at age 37 my thoracic curve was 72 degrees.

Please take her to someone else. Go on line and do your research.

Good luck.

Kathy

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

Report post · January 11, 2008

Diane,

I understand what you are saying about reducing the

muscle stability by bracing. However, she would not be

in the brace 24 hours a day.

I was scheduled to wear a Milwaukee Brace for 23 hours

a day 30+ years ago, but I spent a lot of time with

all forms of exercise which were encouraged by my doc

& physical therapists. Swimming, gymnastics, ballet,

jazz, tap, bicycling, climbing trees, and just plain

old running & playing since I was aged 7-11. I was a

very active kid.

With her muscle issues she already has does that

affect her playing & activities? ~Moonbeam

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

Report post · January 11, 2008

Kathy is right. Go to the Scoliosis Research Society web page and look up

doctors in your state. It is imperative that you get a doctor who is a SCOLIOSIS

SPECIALIST; someone who does nothing but spinal deformity surgery, and performs

many of these surguries per year. Not all orthopedists handle scoliosis, even

though they do surgery on backs. My internist was the first to admit that he

knew NOTHING about scoliosis and was flabbergasted when I told him that I was

going to have the surgery. His first impression was that I was too old, and that

it would be too hard on me. You have to find your own specialist and you have to

get educated. Do your research. Good luck to you.

Patti

Re: Re: New Member

I can tell you from experience as all these people can - GO SEE A SCOLIOSIS

SPECIALIST. Idiopathic means it is not congenital. Congenital meaning she

wasn't born with it or being caused by another disease like cerebral palsy.

My daughter and I are actually in a study where they are trying to locate

the marker or gene that causes scoliosis or to find out why some people

progress and others don't. But I can tell you when I was 12 my curve was 35

degrees. Was sent to a chiropractor for the discomfort and muscle

strengthening.

Sure I felt better but it did nothing for the curve. They didn't know back

in the 1970's at what degree you would progress. My parents opted out of

surgery. By the time I was 16 my thoracic curve was 48 degrees. By the time I

had my first surgery in 1997 at age 37 my thoracic curve was 72 degrees.

Please take her to someone else. Go on line and do your research.

Good luck.

Kathy

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

Report post · January 11, 2008

Yes it does. She can do low impact activities, but if she over exerts herself

it can cause an irregular heart rhythm- so, until they can figure out how to

prevent this(so far they have no ideas) she is limited to activities where her

heart rate doesn't jump... When we lived in the South(2 years ago) she swam a

lot as we owned our own pool. However, she is absolutely sensitive about how her

back looks in a suit so she won't go to a public pool here(seattle area). She

does daily stretching, and instead of a computer chair she sits a yoga ball- to

help with stability without exertion. She walks a tread mill for about 10-20 a

day(well we try to encourage daily), and will pedal slowly on the bike while

watching the tube. She really physically appears quite normal to me, put I do

notice her hunching now... she can do whatever she wants just not for as nearly

as long-she and her sister do some pilates together a few times a week-more in

play while they

chatter though... We have had a very very hard time finding a PT that gets not

to stress her-they always act so stunned when it is obvious she is in stress...

So, we are actually putting our house on the market after just 2 years in the NW

to move back to TX where we can afford to buy a house with a pool. Hopefully

heated. It seems swimming is really the best thing for her. However, the heat

in the south brings its own issues- she overheats very fast so she can't rid e

the school bus(no AC on the tin can) can't really play outside- so even going to

the zoo has to be planned for cool winter days. We have noticed a decline in

her overall health since we moved here- probably from the lack of activity as

well as the fatigue and pain she is suffering. We see the allergist on Monday-

but that is another story.

Fingers crossed our house sells easily and my husband can find a job again in

the southern region. Worth it though to get better care(Houston medical center

is pretty good) and for her to have access to exercise that she needs and feels

comfortable. The last thing we want is for her to feel any more ackward then

teenagers already feel.

How often should she get xrays for checking the scoliosis? Is every 6 months

too much or too little? we are a little nervous about her having soo many xrays

at her age...

Thanks

Diane

Re: New Member

Diane,

I understand what you are saying about reducing the

muscle stability by bracing. However, she would not be

in the brace 24 hours a day.

I was scheduled to wear a Milwaukee Brace for 23 hours

a day 30+ years ago, but I spent a lot of time with

all forms of exercise which were encouraged by my doc

& physical therapists. Swimming, gymnastics, ballet,

jazz, tap, bicycling, climbing trees, and just plain

old running & playing since I was aged 7-11. I was a

very active kid.

With her muscle issues she already has does that

affect her playing & activities? ~Moonbeam

____________ _________ _________ _________ _________ _________ _

Never miss a thing. Make your home page.

http://www.. com/r/hs

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Report post · January 11, 2008

Any recommendations for scoliosis specialists in the Greater Seattle area? Or

since we know Houston, any in Houston?

I am searching and not finding any and our family Dr doesn't know of anyone

outside of childrens.

Would Shriners have specialist? They have Shriners in spokane and I think

Portland OR.

Thanks Diane

Re: Re: New Member

I can tell you from experience as all these people can - GO SEE A

SCOLIOSIS

SPECIALIST. Idiopathic means it is not congenital. Congenital meaning she

wasn't born with it or being caused by another disease like cerebral palsy.

My daughter and I are actually in a study where they are trying to locate

the marker or gene that causes scoliosis or to find out why some people

progress and others don't. But I can tell you when I was 12 my curve was 35

degrees. Was sent to a chiropractor for the discomfort and muscle

strengthening.

Sure I felt better but it did nothing for the curve. They didn't know back

in the 1970's at what degree you would progress. My parents opted out of

surgery. By the time I was 16 my thoracic curve was 48 degrees. By the time I

had my first surgery in 1997 at age 37 my thoracic curve was 72 degrees.

Please take her to someone else. Go on line and do your research.

Good luck.

Kathy

************ **Start the year off right. Easy ways to stay in shape.

http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489

Report post · January 12, 2008

In a message dated 1/12/08 11:38:19 AM, neumandiane@... writes:

> Would Shriners have specialist? They have Shriners in spokane and I think

> Portland OR.

>

YES!

**************

Start the year off right. Easy ways to stay in shape.

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Report post · January 12, 2008

Just looked up the list,

Her Dr is on the list- should I still go for a second opinion?

Re: Re: New Member

I can tell you from experience as all these people can - GO SEE A SCOLIOSIS

SPECIALIST. Idiopathic means it is not congenital. Congenital meaning she

wasn't born with it or being caused by another disease like cerebral palsy.

My daughter and I are actually in a study where they are trying to locate

the marker or gene that causes scoliosis or to find out why some people

progress and others don't. But I can tell you when I was 12 my curve was 35

degrees. Was sent to a chiropractor for the discomfort and muscle

strengthening.

Sure I felt better but it did nothing for the curve. They didn't know back

in the 1970's at what degree you would progress. My parents opted out of

surgery. By the time I was 16 my thoracic curve was 48 degrees. By the time I

had my first surgery in 1997 at age 37 my thoracic curve was 72 degrees.

Please take her to someone else. Go on line and do your research.

Good luck.

Kathy

************ **Start the year off right. Easy ways to stay in shape.

http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489

Report post · January 12, 2008

I went to the Scoliosis Research Society to locate a physician in your area. But

they want your address. So you may want to go to this web link and read for

yourself. Also, I checked on the page called SRS Fellowship for doctors in

Washington. My search found 13 fellows. You would want to start with the

" active " members first. Hope this helps. Patti

http://www.srs.org/locator/

Your search found 13 fellows.

Member Name Member Class Region

Virginia M. Badger, MD Emeritus Lacey, WA

W. Florence, MD Emeritus Steilacoom, WA

K. Gustafson, MD Emeritus Olympia, WA

H. Hurley, MD Emeritus Spokane Valley, WA

Reginald Quentin Knight, MD Active Kirkland, WA

Walter F. Krengel III, MD Active Bellevue, WA

Edwin L. Laurnen, MD Emeritus Bellevue, WA

Marr P. Mullen, MD Emeritus Mercer Island, WA

R. Osebold, MD Active Spokane, WA

Kit M. Song, MD Active Seattle, WA

W. Tupper, MD Emeritus Seattle, WA

Theodore A. Wagner, MD Active Seattle, WA

Klane M. White, MD, MSc Candidate Seattle, WA

Re: Re: New Member

I can tell you from experience as all these people can - GO SEE A SCOLIOSIS

SPECIALIST. Idiopathic means it is not congenital. Congenital meaning she

wasn't born with it or being caused by another disease like cerebral palsy.

My daughter and I are actually in a study where they are trying to locate

the marker or gene that causes scoliosis or to find out why some people

progress and others don't. But I can tell you when I was 12 my curve was 35

degrees. Was sent to a chiropractor for the discomfort and muscle

strengthening.

Sure I felt better but it did nothing for the curve. They didn't know back

in the 1970's at what degree you would progress. My parents opted out of

surgery. By the time I was 16 my thoracic curve was 48 degrees. By the time I

had my first surgery in 1997 at age 37 my thoracic curve was 72 degrees.

Please take her to someone else. Go on line and do your research.

Good luck.

Kathy

************ **Start the year off right. Easy ways to stay in shape.

http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489

Report post · January 12, 2008

Most people would tell you " yes " . Getting another opinion for something this

important is not wasted time. And your insurance may require it. I hope you have

good insurance. We always made sure that we had what is called PPO coverage.

That way I was always able to choose my own doctors. We pay a lot for it, but we

always knew that I would need surgery someday.

One thing my doctor's always told me was to keep my own x-rays. Don't ever leave

them in the custody of the doctor. This way, if you move or change doctors, you

still have your history of the curve and its progression. I didn't know that I

could keep my own x-rays back when this first became an ordeal for me. So I

showed up with only a record of how many inches I had lost over the years. That

in itself was significant...I went from 5'6 " as a teenager to 5'1-3/4 " , all due

to the scoliosis. So, yes you can ask for your x-rays back. They are yours. Take

them with you when you go to the second opinion doctor. And take them with you

when you leave!

We will be praying for your daughter, and you.

Patti

Re: Re: New Member

I can tell you from experience as all these people can - GO SEE A SCOLIOSIS

SPECIALIST. Idiopathic means it is not congenital. Congenital meaning she

wasn't born with it or being caused by another disease like cerebral palsy.

My daughter and I are actually in a study where they are trying to locate

the marker or gene that causes scoliosis or to find out why some people

progress and others don't. But I can tell you when I was 12 my curve was 35

degrees. Was sent to a chiropractor for the discomfort and muscle

strengthening.

Sure I felt better but it did nothing for the curve. They didn't know back

in the 1970's at what degree you would progress. My parents opted out of

surgery. By the time I was 16 my thoracic curve was 48 degrees. By the time I

had my first surgery in 1997 at age 37 my thoracic curve was 72 degrees.

Please take her to someone else. Go on line and do your research.

Good luck.

Kathy

************ **Start the year off right. Easy ways to stay in shape.

http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489

Report post · January 12, 2008

Two of the best are Dr. Tribus in Madison, WI, and Dr. s in

Phoenix, AZ. They both specialize in spinal deformity and scoliosis. They are

both conservative with treatment, doing the least invasive surgery possible.

They listen well and are very experienced and talented, and perform out of top

quality hospitals.

Re: Re: New Member

I can tell you from experience as all these people can - GO SEE A SCOLIOSIS

SPECIALIST. Idiopathic means it is not congenital. Congenital meaning she

wasn't born with it or being caused by another disease like cerebral palsy.

My daughter and I are actually in a study where they are trying to locate

the marker or gene that causes scoliosis or to find out why some people

progress and others don't. But I can tell you when I was 12 my curve was 35

degrees. Was sent to a chiropractor for the discomfort and muscle strengthening.

Sure I felt better but it did nothing for the curve. They didn't know back

in the 1970's at what degree you would progress. My parents opted out of

surgery. By the time I was 16 my thoracic curve was 48 degrees. By the time I

had my first surgery in 1997 at age 37 my thoracic curve was 72 degrees.

Please take her to someone else. Go on line and do your research.

Good luck.

Kathy

************ **Start the year off right. Easy ways to stay in shape.

http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489

Report post · January 12, 2008

I would really recommend traveling to Phoenix to see Dr. es. It's

not too far a trip from Houston. Also, there is a place in northern Texas I've

seen on the internet called Consulting Orthepedics or something like that. I've

emailed back and forth with them, but they don't take medicare, so I didn't keep

going. I'm traveling to Phoenix for my revision surgery, and I know I'm getting

excellent care. My original surgeon recommended Dr. s. He had him perform

surgery on his own mother.