Bronwen update and Re: bracing

[Guest guest]

We saw Dr. Lubicky at Shriners Chicago last week. Her curve

measured 25º for the second time in a row (out of the brace 6 hours

prior to the scan each time) so I am officially calling her curve 25º

which is DOWN 10º from when she went into the brace 3 years

ago. I am very pleased. So, in response to the person who asked

for favorable bracing results, there you go. ;-) When in the brace,

her curve measures far less, though I'm not exactly sure what it is,

but it's obviously less since she " grows " at least 1/2 " when the

brace is put on.

Dr. Lubicky is leaving Shriners at the end of August and will be at

Rush in Chicago.

Again, Dr. Lubicky mentioned the vertebral body stapling procedure

to us. He thinks a good time to do it would be in about a year when

she outgrows her current brace. We'll see the new doc at Shriners

(no clue who we'll be assigned to, yet) in six months, but will see

him at Rush in about a year and I think we will pursue this surgery.

I don't have a link right now to information about it, but if you

search for the name of the surgery, you should come up with a link

to an article about it through Shriners. Currently, the only doctors

performing this surgery are Dr. Betz (Shriners Philadelphia) and Dr.

Lubicky. It is an option for curves that are too small for fusion

surgeries (20-50º), but for children who still have a long time yet to

wear braces.

We also had a scan done of Bronwen's hip (she had an osteotomy

surgery for hip dysplasia at age 19 months) and it looks great. We

anticipate no further problems there, but she'll have it scanned

every few years just to check on it as she grows.

Bronwen was fitted for a new brace; she did amazingly well with the

traction table for the casting. She was a little nervous the week

prior to her appointment, but this was definitely the best visit we've

had by far. She listens intently at appoinments and knows we are

talking about this vertebral body stapling procedure; I asked her

about it more directly later and she said she thought it sounded

great and that she hates her brace and actually seemed excited by

the prospect of surgery to rid her of it, so I think if it comes down to

that, she'll be a trooper, as usual. ;-)

Nola, Bronwen's mom (age 5; braced since age 2, dx at age 18

months with a 20º left lumbar curve...currently at 25º, down from a

high of 35º)

[Guest guest]

Nola,

Im glad that Bronwen is maintaining at approx. 30 degrees. I hope she gets a well fitting brace this time, too.

F.Y.I. - There has been more than a few times that I was also excited about Olivias 5 or 10 degree reduction in whatever brace she was wearing at the time, only to return 4 months later to the same degree or worse. This happened when Olivias most prevelant curve was in the 30's and 60's.

In my opinion, there are a couple reasons for this. The 1st, is that the doc measured by Cobb, but measured from a different vertebrae than the prior visit...So, what I thought was a 10 degree correction, really wasnt.

The 2nd, was due to her flexibility, and the fact that measuring a curve still isnt an exact science. Most docs I have come across say that once the curve is measured, the degree can be 5- or 5+ from that measurement.

I suppose I felt the need to mention that for new moms on the group, who are seeking out treatment. I want them to be aware that "correction stories" by bracing are very- very few. Although, I hope that Bronwen turns out to have one of those great stories.

I must clarify to new moms on C.A.S.T. that if you want correction and are trying to avoid surgery, early casting with serial corrective jackets is the way to go. If your trying to buy growing time for your child before surgical intervention, plaster jackets are the way to go.

If your seeking early treatment with surgery, bracing is the way to go.

Nola, this was not to throw a monkey wrench in your plans, it was to educate new moms. I realize that you have chosen the bracing surgery route, so that also must be clarified to new members.

CAST wants to prevent any more American children from undergoing what my child, and many more have gone through, unnecessarily....

Early treatment with serial corrective plaster jackets can correct scoliotic curves in infants, if applied properly. I have never seen a brace do that, and cant let families seeking treatment to be mislead by the benefits of bracing infants. Braces have been proven to be insignificant in treating infants with progressive non structural scoliosis.

A baby grows fast and if the baby has a bent spine, that bent spine will also grow more bent at the same rate as the baby grows.

Sincerely,

HRH

[Guest guest]

Nola,

I read s post and I know she has only the best intentions when responding to posts. I am sorry that you feel distressed by s post but I also know that she wants everyone to have an opinion. This group is awesome and it would be a shame for you to lose support from everyone here. is not anti-bracing and neither am I. will go in a brace eventually, after we are done casting him. Olivia, is presently in a brace.

What I think you should remember Nola is that sometimes new parents come here read our posts and then go to the Ortho maybe for the first visit. So...the Ortho says wait and watch about a 1 year old with Idiopathic Infantile Scoliosis and the mom remembers the great brace stories she read this AM om casts, so then they brace the baby. The point I am trying to make is that casting is not for everyone, and there is really a time frame for when casting will work. Braces are good to try to hold a curve but you will never correct a spine with a brace, you also can not derotate the spine with a brace, only a cast. I am so happy that your daughter has had great results with her brace. Please remember Nola that we are all very passionate about our children here so try not to take things personal, because I know and that was not an attack on you.

Crista

[Guest guest]

> I suppose I felt the need to mention that for new moms on the group, who are

> seeking out treatment. I want them to be aware that " correction stories " by

> bracing are very- very few. Although, I hope that Bronwen turns out to have

> one of those great stories.

>

, her curve has measured 25º for ONE YEAR; I thought I was being clear

about the fact that it had been the same for so long. I understand that you are

a big advocate of casting, but bracing has been very good for us and I am very

happy with our treatment. I am not saying that braces correct curves; I am

reporting our experience. I have been on this list despite not having casting

ourselves, because it's the most active one I have found for infantile

scoliosis, but your anti-bracing attitude is distressing to me and I am

considering leaving, which is a shame because I will then have no other means of

support. I understand your pro-casting views and think your dedication is

inspiring, but please don't cut me down to further your cause.

Nola

[Guest guest]

Someone asked if anyone had a positive result in a brace, and I gave an example

of a positive result. Never say never.

Nola