Son's posture

[CurvySAT05]

Laurie and Emma,
Have your children been measured for a possible leg length discrepancy? (LLD) The reason I ask this (Emma's post especially) is that I had a LLD that went unnoticed until I was fused to L5 when one of my Physical Therapists was grasping at straws to figure out what was wrong with my gait. She then realized my legs didn't look quite right.
After a revision surgery in December that went down to my sacrum, it is HIGHLY noticeable now to the point where without a built on shoe lift I walk "long leg, short leg, long leg, short leg" I call it my waddle.
Without my shoe lift for the shorter leg, I stand leaned over towards the shorter side, and when standing I typically bend the longer leg so that my pelvis is even. When I put my shoes on (with the lift on the left shoe) my shoulders are even and so is my pelvis.
When I was at the Orthopedist's office one day he measured me for a lift by putting wood blocks under the shorter leg, and when I got to 3/4" I was finally even...something I've been waiting for for a LONG time.
Hope you both are able to get your children "straight", even if it just takes a little time.

[emma12]

Yes, my daughter has had several of her doctors looking at leg length discrepancies, and they all agree that she does not have that. It seems like she does because of the way she appears when she bends her right knee (she straightens right out), or wears only one shoe. On xray, you can see that it is actually her hip that is off (one called it an oblique hip), and when they do all of the measurements... for her legs, it's clear that it is not a true leg length discrepancy, although it does act somewhat like that. None of this was an issue prior to her fusion surgery, and I'm not quite sure that I understand why it has occurred now.

The orthotist that made her shoe arches (she also suffers from pronated ankles) wanted to put a 3/4" lift in one shoe because he thinks that would even her out (it certainly makes her look even), but the physical therapist and doctor don't want to go that route at this time. We've still had ongoing discussions about this though, one pt suggested trying the lift temporarily to see if that didn't strengthen the muscles on one side. For now, we're holding off on this though, her pt is working specifically on strengthening hip exercises. Not seeing a whole lot of result at this point, although it is a struggle to get my daughter to do her exercises daily--but, she is staying flexible, and getting alittle more motion to her hips than she had when we started.

Thanks for the suggestion!

[nate03]

Laurie,

But, did you mean the article about the sensor shirt that alarms if the wearer is leaning or going off of center? It is kind of an interesting concept, but, where would you get one of these? It would seem that wearing one of these for even just a short period may "retrain" the child into realizing when they are leaning on their own. I will ask her doctor if he has ever heard of these.

Hi- I just came across a study about this - it doesn't sound like it is available yet, but just thought I would pass it along:

http://www.scoliosisjournal.com/content/3/1/7/abstract

[laurieg6]

Hi Everyone,
I haven't been on here for a week or so and I want to thank everyone who responded for your positive and helpful advice. Getting Alexander a brace seems like an interesting idea in some ways but he is adamantly opposed to it (when I mentioned it, he almost freaked out) and I can't see trying to find someone to prescribe one now since his surgeon doesn't seem to think it's necessary. He is so happy to be out of the brace for now.

Regarding leg length discrepancy, if Alexander does have this, the surgeon and the physical therapist both said it would be minimal, and they both believe that the x-rays involved in finding out for sure are too much for him, given his ongoing x-rays since the age of 5 or so for the scoliosis.

If Alexander actually thinks about standing up straight, he really can do it so I'm hoping that as he continues to mature, he'll start to get feedback from other kids (only kind comments ) or start remembering to stand straighter himself.

The article I had tried to read from BETall was not about the sensor shirt. When I tried again to read the linked article, it was a really grotesque article about all the failures of spinal fusion surgery and all it's complications. It was really nasty and unnecessary for me to read (I only read a little). I thought it was really mean and cruel of someone (BETall) to put in a link to an article like that in a place where parents and patients go to find support about the surgery. Most people who would read in the surgery section are either imminently facing the surgery for their kids or the kids have already had the surgery. We parents often have enough anxiety about the surgery and many of us have tried alternatives to it and we don't need to read such a negative article when the surgery is really our only option for helping our kids have a relatively "normal" life (whatever that is).

I wish the article I read was really about the sensor shirt and I will find that one next.

[txmarinemom]

The article I had tried to read from BETall was not about the sensor shirt. When I tried again to read the linked article, it was a really grotesque article about all the failures of spinal fusion surgery and all it's complications. It was really nasty and unnecessary for me to read (I only read a little). I thought it was really mean and cruel of someone (BETall) to put in a link to an article like that in a place where parents and patients go to find support about the surgery. Most people who would read in the surgery section are either imminently facing the surgery for their kids or the kids have already had the surgery. We parents often have enough anxiety about the surgery and many of us have tried alternatives to it and we don't need to read such a negative article when the surgery is really our only option for helping our kids have a relatively "normal" life (whatever that is).

I wish the article I read was really about the sensor shirt and I will find that one next.

Go figure. She posts Schroth as a cure for everything, and that's ALL she posts.

EVER.

I hate she pointed you to something like that, and you might might to email the President here (jpobrien@scoliosis.org) to ask why they have advertised her (Beatriz Torres ... a Schroth practitioner) on the NSF home page.

There are enough quacks and scare tactics around. This venue should be somewhat immune (at least to *condoned* quacks). I have never seen her post anything helpful, and that wasn't an attempt to drive business her way.

[nate03]

I thought it was really mean and cruel of someone (BETall) to put in a link to an article like that in a place where parents and patients go to find support about the surgery. Most people who would read in the surgery section are either imminently facing the surgery for their kids or the kids have already had the surgery. We parents often have enough anxiety about the surgery and many of us have tried alternatives to it and we don't need to read such a negative article when the surgery is really our only option for helping our kids have a relatively "normal" life (whatever that is).

I wish the article I read was really about the sensor shirt and I will find that one next.

Hi Laurie-
I completely agree with your sentiments about BETall. Just FYI, I reported both of the posts in this thread and also sent an email to Joe O'Brien on 8/20. Joe never replied to me or removed the posts - very frustrating.

I hope you saw the link I posted above about the shirts. And, I completely understand your son's feelings about the brace ~ I am glad the drs do not think it is necessary.

Take care,
Cara

[mariaf]

I hate she pointed you to something like that, and you might might to email the President here (jpobrien@scoliosis.org) to ask why they have advertised her (Beatriz Torres ... a Schroth practitioner) on the NSF home page.

Pam,

It is VERY interesting that the President of NSF in a recent e-mail wrote (with regard to MY posts on vertebral body stapling or VBS) that "there was concern in the past that some of those posts had been more recruiting/advertising in nature than they were educational".

Doesn't "advertising" usually infer that someone is profiting? I don't make a penny from my posts - on the other hand, BETAll is obviously attempting to profit - and in a very distasteful manner I might add.

Yet despite all of the above, BETAll, as you say, DOES have her contact information appearing on the NSF home page. As you know, when we requested that a link be added on the home page to www.vertebralstapling.com, we were first told by the President that an endorsement would be necessary from the doctor(s) who perform VBS before such link could be added. This endorsement was subsequently obtained. However, there is still no link to the VBS site on the NSF home page.

In light of all this, and other events that I won't go into here and now, it is difficult not to feel that certain treatment methods are given preference here.