How sort out the issue of growth and what that means....

[tampamom]

Hi,

My husband and I are trying to sort out the issue of what it means if our son still has growing to do. He is 15yr, 5'5, little facial hair and risser 4, but as research shows boys can continue to grow into late teens/college. His dad grew a lot in college and is now 6'1.

So thinking that he might hit a growth spurt and increase curve, surgeons say fuse now, right?
Dad says, what about brace now and allow him to grow then fuse? This allows for surgery procedures to develop/ evolve. As I believe the change in rods have taken place with the last few years right. I guess you might get less correction?

One doctor said growth is only in limbs at this point so fusion is fine. My hubby thinks your torso keeps growing too, maybe not at the same rate.

I plan to discuss this with the doctor on Monday, just looking for input.

Thanks

[tkare]

We asked that question of many doctors and were given the same answer you were given. They all said most of the remaining growth takes place in neck and legs. Also any remaining growth in his spine would be curved growth and not upward growth. Worth asking on Monday anyway never hurts to get more input.

[leahdragonfly]

Hi there,

I just read your other thread and now this one...You are definitely doing a good job researching all your options.

I would see nothing wrong personally (both as a scoliosis pt myself and mother of two with scoliosis) with delaying surgery a bit if you are not sure, but I would absolutely forget about the brace! Bracing a 55 degree curve is so far out of the standard of care, I would be surprised if insurance even covered it. Bracing such a large curve is likely to be very painful, and there is NO literature support for a brace on a curve this large. The surgeon is offering a brace to you, the parents, to make YOU feel like you are doing something while thinking about surgery. The brace will do nothing to help your son, and it is a very difficult thing to wear.

There are a number of posts from a 14 y/o girl here, Kat, whose parents insisted she try bracing for a 50+ degree curve. It caused her great pain and severe bruising, and guess what, she is now fused and doing great. Sometimes surgery is the only option, or waiting.

Good luck with your other consults, and go with your gut on which surgeon you choose.

[tampamom]

Well said Gale, the brace would be for us! Duhhh, I did not even think about how painful it would be for him to wear it with a T55 curve. Now that you mention it I do remember reading about Kat's situation.

Thanks for the encouragement!

[mariaf]

The surgeon is offering a brace to you, the parents, to make YOU feel like you are doing something while thinking about surgery.

Gayle,

You are not the first person to say that (but you said it very well)!

Even my GP said that sometimes folks come in to doctors' offices with illnesses that are almost surely viral, but they insist on a prescription -- and that some doctors even oblige and write the script so folks can feel they are doing "something" to treat their illness, when in effect it's not going to help at all.

That applies in this case as well.

[Pooka1]

The are surgeons who say all braces are for the parents, not just the ones used for large curves.

Surgeons who brace far outside the standard of care should make the child and the parent sign a paper stating they know they are participating in a painful, uncontrolled experiment on an unstudied subject.

There is a reason the bracing window ends at 40*. After that it's pure parent.

[Leelee]

Someone once told me that scoliosis is rarely an emergency, and that is true in this case. If you are hesitant and would like to give your son the chance to grow more, I say go ahead and have at it. However I must say I do like the advice you have been given about bracing. In fact it really kind of heartens me to see that...things have changed so much since I have been a part of the scoliosis internet community. I was forced to wear a brace for 4 years and I feel that it really wrecked a portion of my life that I can't get back. I know all that jazz about it keeps your curve from progressing and all that bit, but I have never heard of someone who went through years of long term bracing and did not end up with surgery later in life. It just seems like for most people bracing slows the inevitable. Anyway I've stepped on a soap box, but bottom line I think if you feel you'd like to wait a bit, there is no harm. Your son is far from needing emergency surgery and a little extra time should be fine.


P.S. Holy cow, I haven't been here in awhile. Just for your own piece of mine I'm not a 17 year old high school senior. I'm 22.

[Pooka1]

Someone once told me that scoliosis is rarely an emergency, and that is true in this case. If you are hesitant and would like to give your son the chance to grow more, I say go ahead and have at it. However I must say I do like the advice you have been given about bracing. In fact it really kind of heartens me to see that...things have changed so much since I have been a part of the scoliosis internet community. I was forced to wear a brace for 4 years and I feel that it really wrecked a portion of my life that I can't get back. I know all that jazz about it keeps your curve from progressing and all that bit, but I have never heard of someone who went through years of long term bracing and did not end up with surgery later in life. It just seems like for most people bracing slows the inevitable. Anyway I've stepped on a soap box, but bottom line I think if you feel you'd like to wait a bit, there is no harm. Your son is far from needing emergency surgery and a little extra time should be fine.


P.S. Holy cow, I haven't been here in awhile. Just for your own piece of mine I'm not a 17 year old high school senior. I'm 22.

Hi LeeLee.

I think the fact that you recorded the exact minute you stopped wearing the brace says it all.

Thanks for contributing.

[Leelee]

Hi LeeLee.

I think the fact that you recorded the exact minute you stopped wearing the brace says it all.

Thanks for contributing.

That sure does say a lot doesn't it? I think what says even more is that that happened almost 8 years ago, I have not had any additional treatment or posted on any scoliosis message boards (so nothing to keep it fresh in my mind) and I still remember the date and time. I feel like its something I will remember forever. I can't believe how much things have changed its regard to the opinions on bracing...I have not really been up on the scoliosis community for a few years, had some free time today and remembered this site and saw a few threads that mentioned negative aspects of bracing. This piqued my interest and did some more googling on the subject and I cannot believe how fast opinions have changed! I never saw anything like this just a couple years ago, it was just thought of as yeah it sucks but its your cross to bear.

[Pooka1]

Bracing is experimental and always has been, unbeknowst to many surgeons at times. Surgeons are not doing the research and so may not have realized that the bracing research is a train wreck.

You and your parents should have been told it is experimental even though it is the standard of care.

[Leelee]

Bracing is experimental and always has been, unbeknowst to many surgeons at times. Surgeons are not doing the research and so may not have realized that the bracing research is a train wreck.

You and your parents should have been told it is experimental even though it is the standard of care.

Hmm this is the first time I've ever heard any questioning at all on the matter. Actually both of my parents are surgeons (not in orthopedics) and they never questioned it. I feel vindicated...I've thought for quite some time that bracing (at least in some cases) is completely bull and something I'd never subject a child of mine to.

[Pooka1]

Hmm this is the first time I've ever heard any questioning at all on the matter. Actually both of my parents are surgeons (not in orthopedics) and they never questioned it. I feel vindicated...I've thought for quite some time that bracing (at least in some cases) is completely bull and something I'd never subject a child of mine to.

Well after all these years, bracing has not been ruled out to be bull. It certainly could turn out to be bull though. I'd put it that way. :-)

The BrAIST Study, going on right now, has dozens of surgeons at about 25 medical centers that all agree it is ethical to randomize kids to a no-brace control group. That's the biggest indictment of bracing there can be at the moment.

And maybe some day they will find a patient population that does in fact avoid surgery for life due to bracing. But that will be so hard to show that it is reasonable to suggest it might never be shown. And even if they show an effect, it might be that bracing only delayed the surgery. That has never been ruled out to date to my knowledge.

Also, it could be the case that if you wear a perfectly fitted brace 23 hours a day, every day of the critical growth period, that a few people avoid surgery for life. But until they can guarantee which patient will avoid fusion for life, the treatment remains too difficult for many. The breezy hopefulness you see comes from the parents, not the kids. Any parent hounding their kid to wear the brace should wear one for 23 hours a day for a few months first.

[leahdragonfly]

Any parent hounding their kid to wear the brace should wear one for 23 hours a day for a few months first.

Amen to that!!!!!

As I have written about before, I was very miserably braced in junior high, and now as the mother of two younger kids with scoliosis, I truly understand how difficult and heartbreaking bracing is. And I have been through surgery also, so I know both sides of the coin personally.

When my daughter was diagnosed with a 30 degree curve at age 6, and we were originally told to brace her for the next 9-10 years, I remember calling my mom crying to tell her the news. She acted very surprised and didn't seem to understand why I was so upset. I was furious when she said "well you did ok with your brace...in fact, I am surprised you still remember wearing it." This statement was the most outrageous denial I have ever experienced.

[Leelee]

Well after all these years, bracing has not been ruled out to be bull. It certainly could turn out to be bull though. I'd put it that way. :-)

The BrAIST Study, going on right now, has dozens of surgeons at about 25 medical centers that all agree it is ethical to randomize kids to a no-brace control group. That's the biggest indictment of bracing there can be at the moment.

And maybe some day they will find a patient population that does in fact avoid surgery for life due to bracing. But that will be so hard to show that it is reasonable to suggest it might never be shown. And even if they show an effect, it might be that bracing only delayed the surgery. That has never been ruled out to date to my knowledge.

Also, it could be the case that if you wear a perfectly fitted brace 23 hours a day, every day of the critical growth period, that a few people avoid surgery for life. But until they can guarantee which patient will avoid fusion for life, the treatment remains too difficult for many. The breezy hopefulness you see comes from the parents, not the kids. Any parent hounding their kid to wear the brace should wear one for 23 hours a day for a few months first.

I see what you are saying. I started bracing with two 35* curves and four years later they were holding at right about that. 6 months later I came in and both had a 10* jump. The ortho said this was expected and after bracing curves tend to jump to the point they would have been had they never been braced. I remember thinking WTF at the time but I didn't question it...I was only 15 and I was at the appointment with a nanny (not parents) who didn't question it either. I'd certainly question that if I were told that today. If that really is true then what in the world would be the point in bracing? I went in for another check about a year later and had a slight increase. That was a couple years ago and I have not been checked out since. Scoliosis does still affect me (was told it would not) I teach kindergarten and many days my back cannot stand up to the activity of the kids. I am also unhappy with the way that I look. I feel as if surgery is inevitable at some point in my life and I probably would have been better off had I gotten it over with when I was young so to speak.

Amen to that!!!!!

As I have written about before, I was very miserably braced in junior high, and now as the mother of two younger kids with scoliosis, I truly understand how difficult and heartbreaking bracing is. And I have been through surgery also, so I know both sides of the coin personally.

When my daughter was diagnosed with a 30 degree curve at age 6, and we were originally told to brace her for the next 9-10 years, I remember calling my mom crying to tell her the news. She acted very surprised and didn't seem to understand why I was so upset. I was furious when she said "well you did ok with your brace...in fact, I am surprised you still remember wearing it." This statement was the most outrageous denial I have ever experienced.

Holy cow! I can see my mother and I having almost the same conversation should I ever be in that situation. I was just talking with her this morning about all this and she was like "well I don't see what the big deal is...you were just fine" I reminded her of how miserable I was (and boy I've got some great anecdotes....) and she said "well you always have been one for being dramatic". Whew. I just don't think the decision of 23 hour a day rigid bracing should be taken so lightly. Far too many people discount the emotional toll on preteen and teen girls.

[mariaf]

I've thought for quite some time that bracing (at least in some cases) is completely bull and something I'd never subject a child of mine to.

It's funny how most people who wore a brace as a child/teen themselves would never make their kids wear one.

Speaks volumes.