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-   -   Newly diagnosed son. Questions on bracing (http://www.scoliosis-support.org/showthread.php?t=17602)

tricializ 26th January 2014 05:53 PM

Newly diagnosed son. Questions on bracing
 
Good Morning:
My son, who just turned 14 this past week was diagnosed with a Scheuermann's Kyphosis and mild scoliosis. What was me telling him to stand up straight got my mom's attention (she is an RN) and then the pediatrician. I feel bad that I waited several months to remember to set an orthopedic appointment and now here we are. We were pretty bowled over to get this diagnosis as I didn't think there was really anything wrong. He has mild asperger's syndrome as well and so I thought the slouching was more personality driven and maybe he'd get an elastic back brace and some PT. So we were pretty much in shock. Anyway, he has a 76 degree curve apparently and they told us the news and sent us off to bracing without a whole lot of discussion other than according to the doctor "you can't force the brace". Um, ok.

So we went to the brace guy and he measured my son for the Milwaukee brace. Obviously he is upset at the thought of this and in the past few days I have done a lot of reading. The brace guy isn't familiar with the Kyphologic brace or any other alternatives which led me to make some other calls. We have an appointment with Shriners (Dr. Hammerberg) in Chicago in a week and a half and maybe he can give us some guidance.
But my long-winded post (sorry) I have a couple of questions if you all don't mind.

1. Has anyone successfully used the Kyphologic brace instead of the Milwaukee brace?
2. I have read that bracing isn't really effective over 70 degrees. Is surgery inevitable?
3. Has anyone done surgery in lieu of bracing with a larger curve? I hate to put him through this bracing regimen if it is inevitable that he will need surgery.
4. Is it crazy to think that doing surgery sooner than later (while he is in 8th grade now) so he could be good to go for high school?
The compounding factors are his social skills and awareness to begin with. He has trouble socially on a good day and deals with pretty moderate anxiety issues anyway. It's been a tough year for him as it is and I think this might push him over the edge.
So, any advice and help is so appreciated from where to go (will travel wherever) to what to do. Thank you all so much.
Trish

hduggan 26th January 2014 07:47 PM

Re: Newly diagnosed son. Questions on bracing
 
My son also has kyphosis/scoliosis, diagnosed a little older then your son and also somewhere on the aspergers spectrum, so I completely sympathize.

We didn't brace (my son was considered too old by the time he was diagnosed) but I know the Milwaukee brace is particularly hard on kids, and that boys, just in general, are more resistant to bracing. The bracing parents will have better advice - I'd just say to pay attention to how he feels. Bracing can be emotionally tough, and that has to be balanced against any benefit.

I don't know the details, but I had the sense that bracing could actually reduce a kyphotic curve (although not scoliosis) - something to do with being able to apply direct pressure to the curve. But i have only a hazy memory of this - you might ask your doctor is this is thought to be the case. If that's the case, that would be something you'd want to talk through with your son.

I'm not familiar with the kyphologic brace - it looks like it's mainly Weiss (the grandson of the woman who invented Schroth exercises). If that's the case, it's possible that it just hasn't been tested enough to be in wide use.

Surgery for kyphosis is considered more difficult then surgery for scoliosis. For that reason, I think surgeons try to do other things before they decide to operate. My sense is that they don't normally operate on kids (the way they do with scoliosis).

Best of luck with your son. I hope the appointment at Shriners helps to answer some of your questions.

tricializ 27th January 2014 01:25 AM

Re: Newly diagnosed son. Questions on bracing
 
Thank you for your reply. The compliance is going to be hard, but he still is estimated to have 1- 1 1/2 years of spinal growth left, so I would think some type of bracing would be helpful. It seems that the kyphologic brace is used more in Europe but it seems so much less conspicuous that it is crazy not to try it if it is showing promise, right? Oh well. This is all so new to me and makes me sad for him. :( Any other ideas or experts you all recommend would be appreciated.

hduggan 27th January 2014 03:33 AM

Re: Newly diagnosed son. Questions on bracing
 
I'm looking at the kyphologic brace, but the only research I see is in 2009 and talks about in-brace correction only. Did you find something showing the final results? Or just that initial study. I agree that it would be good is there were something less obtrusive.

There's a group in Italy that I use as my go-to site for figuring out how people deal conservatively with different issues. Here's their article on exercise and bracing for Kyphosis - http://www.isico.it/isico/ricerca/pdf/ID00304.pdf.

It's tough to have this happen to your kid. Don't beat yourself up about not noticing it - I think a lot of us have had the same experience. We're just not trained to spot this stuff. Hope you get lots of good info from your Shriner's visit.

whitbrit 27th January 2014 01:35 PM

Re: Newly diagnosed son. Questions on bracing
 
I don't know a lot about kyphosis or Milwaukee braces or the kyphosis brace but I can tell you the braces are not meant to correct a curve but to stop it from progressing. I can also tell you that at 76 degrees and 14 years old his curve will most likely continue to increase and require surgery at some point. I can also tell you it is easier to do surgery in adolescence than at an older age since most of your growth is finished unlike childhood and the spine is still flexible. The older you get the less flexible your spine once you finish growing and the less correction can be obtained. Surgery is a big decision and there is nothing wrong with trying bracing first if you want to. Good luck with you son's case. I hope all goes well with whatever you choose. :)

KMaxwell 27th January 2014 07:10 PM

Re: Newly diagnosed son. Questions on bracing
 
Hi Trish and welcome! Iím glad you have found this site (which has been so helpful to me) but sorry for the circumstances that brought you here.

1. Has anyone successfully used the Kyphologic brace instead of the Milwaukee brace? Nope, it wasnít an option when I was braced (and I havenít seen many studies showing itís effective). I can tell you I didnít wear my Milwaukee brace for more than a month because of how I was teased at school. I think that todayís braces are a bit more Ďuser friendlyí plus fashions (such as hoodies) can do a better job at hiding them.

2. I have read that bracing isn't really effective over 70 degrees. Is surgery inevitable? Iíve read the same about bracing not being effective but as long as itís worn before skeletal maturity is reached I think the brace could keep the curvature from getting worse. I donít know if Iíd say surgery is inevitableÖ It could depend on whether or not the curve continues to progress after skeletal maturity, plus if it causes your son pain.

3. Has anyone done surgery in lieu of bracing with a larger curve? I hate to put him through this bracing regimen if it is inevitable that he will need surgery. I would think that would be definitely be considered on larger curves.

4. Is it crazy to think that doing surgery sooner than later (while he is in 8th grade now) so he could be good to go for high school? Not crazy at all but I think with kyphosis most surgeons want to wait until skeletal maturity is reached before considering surgery.

I have Scheuermann's Kyphosis (SK). I remember being told to 'stand up straight' by my family at about age 10 and then my pediatrician telling my mom that I was just lazy. She believed that for awhile but finally at age 16 I got to see a specialist and was fitted for a Milwaukee brace. Unfortunately, I didn't wear it long and my mom wasnít always around to keep the brace on me. Maybe thatís what your doc meant about not Ďforcing the braceí?

I have heard some people here on the forum say bracing helped minimize their curve, but I donít think that improvement was permanent.

Does your son experience any pain from his SK? That can be a big factor in whether or not to do surgery. If not, he could probably get by with just keeping fit throughout his life to help support his spine and improve posture slightly. If he does have pain or if the specialists feel the curve will progress (which can happen after reaching skeletal maturity though itís not the norm) then I think surgery should be considered.

As Hduggan said, surgery for SK is more difficult than for scoliosis. On the plus side, I think the odds of a successful outcome (and quicker recovery) are a lot higher for someone in their teens than at an older age.


Hope this is of some help to you and your son. Kudos to you for being such a caring mom and doing all you can to make this situation the best as possible for him.

tricializ 28th January 2014 07:14 PM

Re: Newly diagnosed son. Questions on bracing
 
Thanks all:
I talked to a different orthotist yesterday from Shriners and he explained about the kyphologic brace that while he hasn't seen that one in particular, a brace that went under the arm and put pressure where the kyphologic brace does, would be pushing on nerves and blood supply and usually results in numb hands etc. That makes sense to me. So, back to the drawing board.

My pediatrician also talked to the original spine doctor and he didn't think it would progress at all (which I don't understand if he is still growing?) but bracing would correct it. Anyway, long story short, I feel very optimistic at this point about going to see Dr. Hammerberg at Shriners and Bill the orthotist. I at least feel like they will explain things to us and have us understand our options. If you can think of questions for me, please let me know.
Am I wrong to think that this will progress until he is finished growing?
Thanks.
Trish

hduggan 28th January 2014 09:00 PM

Re: Newly diagnosed son. Questions on bracing
 
Kyphosis doesn't always act the same way that other spinal curves (like scoliosis) do. One thing that's different is that it doesn't always have that big increase during the growth spurt. The other difference is that some studies have shown curves reducing with braces. So, in some ways, it's a better diagnosis than scoliosis.

The hard part, IMO, is that kyphosis just seems like it's harder emotionally on these kids. My son has both kinds of curves (scoliosis and kyphosis) but it's the kyphosis you can see. The scoliosis just gives his neck a slight slant to the left, but the kyphosis is pretty obvious both from the back and from one side. As he's gotten older, that's become less important to him, but it is something that affects him to some extent.

Let us know how the Shriner's appointment goes, and best of luck to both of you.

scottbartz 29th January 2014 12:26 AM

Re: Newly diagnosed son. Questions on bracing
 
Hi Trish,

My doc, who is pretty progressive in the field, was very outspoken about the fact that bracing for Scheuermann's does more harm than good. His reasoning is that it replaces the support that one's muscles would naturally be giving the body thereby compromising the muscles ability to hold the body normally even after a corrective surgery and he also is adamant that the gains are very small versus the physical and psychological damage that is done to a teen in a brace.

So, hopefully this makes sense. I was almost 40 when diagnosed officially so bracing wasn't an option for me, but I have a 12 year old daughter who I'm looking over so I did ask a TON of questions and bracing was definitely discouraged by my doctor.

Thanks for being a good mom and noticing and listening to others and your son. I didn't get that and it prevented me from addressing the issue for about 25 years.

Good luck on this journey and welcome.

Scott

tricializ 29th January 2014 02:59 AM

Re: Newly diagnosed son. Questions on bracing
 
Scott,
Has your doctor published articles on this? I would like to have as much information as possible when I see the docs at Shriners so that I can be as informed as possible. Thanks.
Trish


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