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scolimom2
07-18-2008, 04:57 PM
Hi Everyone,

I've been encouraged by reading this forum and am looking for advice. My 11-year-old has been followed for 2 years with x-rays/check-up every 6 months.
Her curves stayed steady at 20 upper and 21 lower until last week. She has grown 1" and progressed to 28 upper and 26 lower in the last 6 months. We live in North San Diego County and she sees Dr. Peter Newton at the Rady Children's Hospital Scoliosis Clinic. He said we had to decide whether to put her in a Boston Brace now or just watch. (told us 75% of patients in brace won't need surgery vs. 50% won't need surgery without brace. Her 13-year-old cousin in Seattle has been in a Boston brace for 2 years and has an upper curve that has now progressed to 49 even with the brace.) I asked about the Cheneau brace and PT. He has never used either as there is no one in SD who makes the brace or does Schroth.

I have called and talked to both Grant Wood and Gez Bowman and made an appointment for a 2nd opinion with Dr. Skaggs at Children's Los Angeles on July 31st. I'd appreciate any advice you might have. Thank you.

Pooka1
07-18-2008, 05:42 PM
Hi. I'm sorry you are dealing with this. Both my girls have AIS. One is fused and one is braced.

I am wondering about the statistics you cite.

Does he mean won't need surgery "as an adolescent" or won't need surgery "ever?"

I wonder what percentage of kids who stay outside the surgical window as adolescents nevertheless go on to need surgery as adults either for pain or progression.

There are advantages in my opinion to having this surgery as a kid vice as an adult though the long term is unknown for the new surgical procedures.

txmarinemom
07-18-2008, 06:53 PM
... I wonder what percentage of kids who stay outside the surgical window as adolescents nevertheless go on to need surgery as adults either for pain or progression.

There are advantages in my opinion to having this surgery as a kid vice as an adult though the long term is unknown for the new surgical procedures.

Sharon, you know I'm no delicate flower - and many would have had surgery for the pain I had 20 years ago. I wasn't willing to give up what surgery would have taken away 20 years ago.

Not everyone who progresses has pain, and not everyone who stays static does NOT have pain.

You'll never get your firm stats on bracing OR surgery ... too many variables, hon. The pain I was used to from age 10 would have dropped most adults to their knees. It was just my "normal". Many orthos now state bracing is purely for the parents' benefit ... so it seems *something is being done.

I do have the utmost faith in the promise of the late 3rd/early 4th generation hardware ... and I've been watching it a while. If I didn't have a good point of reference, I would have continued to suck it up and passed on surgery.

Better the devil you know and all ...

Regards,
Pam

Pooka1
07-18-2008, 07:21 PM
Pam, yes I realize you were in the surgical window as a kid and held off on surgery despite the pain. Hopefully you will be rewarded by a better outcome with your instrumentation versus that available in the past.

But I just wonder about the present thought that none of the kids who get through adolescence staying below the surgical window will ever need fusion in the future for some reason be it progression in adulthood or pain at the non-surgical Cobb angle.

I think there is some percentage of that surplus 25% who are wearing braces and who avoid surgery as kids (over the ones who aren't braced and still don't need surgery as kids) who will nevertheless go on to have fusion as adults. Equally, I think some percentage of the kids of aren't braced and stay below the surgical window will go on to need fusion for some reason as adults.

I think there are people on this forum who fall into one of those two categories if I am understanding their testimonials.

Then you have to balance having the surgery as kids versus adults and also whether the surgery will be better in the future which seems inevitable. I think there is a case to be made for not bracing per se or at least that it isn't clear that not bracing is crazy on its face even if it was a totally comfortable procedure which it is NOT!

Who here made it out of adolescence with a curve that stayed below the surgical window, braced or not, and yet went on to have fusion as an adult?

txmarinemom
07-18-2008, 09:11 PM
Sharon, simply remember I had surgery at 39 (and a 1/2) - and healed as quickly as your 14 year old.

This is a very unpredictable animal ...

Pooka1
07-18-2008, 09:42 PM
Yes but I think you are an outlier w.r.t. the great run of adults who post here at least. I can't assume if my one daughter needs surgery as an adult that she will have as relatively easy a time with fusion as my other daughter.

I think there is a vast area of bracing ethics that has yet to be discussed as far as I can tell. I am still not sure bracing is the right thing to do for my one daughter.

At least some doctors now are telling patients that it is only about 25% of folks who are possibly helped by bracing as opposed to the much larger percentages that have been quoted in the past.

I've only been reading here for a few months and can recall some folks coming on here recently quoting very high success rates for bracing when some large percentage of those curves would not have progressed even without bracing. So it's falsely rosy in implying bracing works in a large majority of cases when in fact it appears to work in only ~25% of the cases over and above those who would not progress no matter what you do which should be subtracted out, assuming this is one population... it may not be. That is, kids with smaller curves are not braced and tend not to progress whereas kids with larger curves tend to be braced.

The flip side, if this analysis is correct, is that a majority (at least 2/3) of kids are wearing braces and getting no benefit because they would not have progressed or because the brace isn't going to hold the curve.

Now if you believe virtually all kids who make it out of adolescence staying below the surgery window do not ever need fusion, then I guess it's rational to brace even if the brace is useless in more kids than it helps. But if you don't think that fusion can be forever avoided by making it to adulthood below the surgical window, then bracing becomes a much dicier decision.

And maybe there is something wrong with my analysis! Comments?

scolimom2
07-18-2008, 10:03 PM
I didn't mean to start a debate on the statistics. :confused: I was just looking for advice/information on your experiences with cheneau vs Boston braces, and/or Drs. Newton & Skaggs & Gez Bowman.

Thanks.

Pooka1
07-18-2008, 10:14 PM
I didn't think this debate was irrelevant to your OP. But it's your OP and if you think it is then it is.

I don't know the doctors. In re bracing, it is rational to do it and it is rational to avoid it in my opinion based on what is presently known as far as I know.

My one kid is in a Charlestown nighttime brace. I would not put her in any other brace given the present state of the data. That's where I stand.

Our ortho did not brace before the night-time brace came out. He only uses that brace as far as I know not just because it is well tolerated but because there is some data that it is effective. That said, given her identical twin needed fusion, I'm wondering if any brace makes sense for her. That colors my opinion necessarily though the data are what they are irrespective of the situation with any particular pair of ID twins. Unusual situation, I know.

txmarinemom
07-19-2008, 01:10 AM
Scolimom2,

I hope you don't think there's an argument here, and I'm sorry if we drug your question off topic. There is no animosity between Sharon and I (if that seems to be the case) ... just yakking :).

Regards,
Pam

Snoopy
07-19-2008, 07:48 AM
scolimom2,

Don't worry about Pam and Sharon....they really are nice people! ;)

I don't have any experience with the night braces. However, as parents we feel we need to do something when our child is diagnosed with Scoliosis. My daughter was diagnosed at the age of 12 with a 36* Scoliosis curve and Kyphosis in the 70's (Kyphosis is also a curve but goes front to back where Scoliosis goes side to side). I did my research before we saw the ortho and Jamie and I decided she would try a brace and the worst thing we could hear was that she needed a Milwaukee brace. Well, guess what, she needed a Milwaukee brace because of the Kyphosis and location of her Scoli curve. Because her Scoli curve was already to close to needed surgery, we agreed to try the Milwaukee. She couldn't wear it. She was in Middle School and the brace was very visible. The doctors decided to switch her to a Boston brace with an extension to help with the Kyphosis. She couldn't wear it either. Jamie ended up having surgery 14 months after her diagnosis.

After having that experience,would I ever brace my younger daughter if she were diagnosed with Scoli? No. If my younger daughter were diagnosed, I know she wouldn't wear a brace. From her point of view, she'd have to give up her passion--playing the drum in marching band. From my point of view, it just wouldn't be worth the fight I'd have to go through.

With Jamie, I'm happy we made the decision to try the braces. It made me feel better at the time knowing I did something to avoid surgery. Known of us have all the answers. As a parent, we have to do what we feel is best for our child. For me, that was putting Jamie in a brace, but getting 5 opinions before I would agree to letting anyone do surgery. I knew in my heart that surgery was the best option for Jamie and I have never regretted it and neither has Jamie.

Sorry this has gotten so long. I'm sure I didn't answer your question, but wanted to share our experience with you. Trust your instincts and make sure you have a doctor who you trust as well. Good luck in your decision.

Mary Lou

mariaf
07-19-2008, 10:37 AM
I didn't mean to start a debate on the statistics. :confused: I was just looking for advice/information on your experiences with cheneau vs Boston braces, and/or Drs. Newton & Skaggs & Gez Bowman.

Thanks.

Hi Scolimom,

Just my two cents -

I don't know Dr. Skaggs personally - but I got to know of his reputation when we added his name to the VBS website (he is one of a handful of doctors who performs the stapling or VBS). Anyway, Dr. Betz thought very highly of him as did everyone I have ever heard from who has used him. He's considered one of the top doctors in the country for this.

I also agree with Sharon about the Charleston nighttime brace - or any nighttime brace for that matter - there is much data that suggests they are as effective as full time bracing with a TLSO or Boston and obviously much easier to deal with.

Good luck!

Pooka1
07-19-2008, 11:00 AM
I also agree with Sharon about the Charleston nighttime brace - or any nighttime brace for that matter - there is much data that suggests they are as effective as full time bracing with a TLSO or Boston and obviously much easier to deal with.

Good luck!

Like I said, our surgeon never braced until the data came out on the night-time brace. To my knowledge, he has no malpractice claims against him for never bracing up to that point. Similarly, our orthopod who referred us to the surgeon doesn't brace to my knowledge except perhaps for the night-time brace. Again, no malpractice claims for this watching/waiting approach.

There is a reason orthopods don't get sued over watching and waiting. That's a consideration when considering bracing in my book. I think bracing helps some kids avoid surgery at least during adolescence but it's not the majority who are braced, we can't know in advance who they are, and there are trade-offs involved even in a "successful" bracing.

In re tolerating the night-time brace, there was a break-in period but now my daughter feels funny if not wearing it. Also, she realized on her own that she was not getting 10 hours in it and changed her hours such that she did get 10 hours in it.

RugbyLaura
07-19-2008, 11:21 AM
Hi Scoliomum2,

You may have 'seen' me before, particularly on the (very large) spinecor thread. My daughter is also 11 & was diagnosed at 9 with a 28 degree curve. She wears a Spinecor brace & gets on fine with it (although I doubt she'd admit to that!). She does have a rigid brace too (TLSO) but has never worn that - apart from the ten minutes from the ortho's office to the nearest public convenience!

It is important to feel that you're doing something for your child. We feel that the Spinecor brace offers Imogen the most comfortable treatment whilst also allowing her to remain strong and flexible as she is able to move normally; just pulled back into the 'correct' position constantly.

I would have been very interested in the nighttime brace but it doesn't seem to be an option in the UK.

I obviously don't know the doctors you mention & have had no experience with other brace types, but just though I'd chip in with our experience - it could be worth investigating Spinecor too.

Regarding the stats - there seem to be different ones wherever you look. I remember seeing some that quoted only a 20% success rate with TLSO braces and, who knows, they may never have progressed without bracing either. Everyone I know in the UK (having met through a UK scoliosis forum) that has worn a rigid brace has progressed to surgery. But I can't stand by and do nothing even though the end result may well be the same.

Good luck with your search for information!

Laura

emarismom
07-19-2008, 11:46 AM
It's funny that it was brought up that "bracing is more for the parents" as my orthopedic told me basically the same thing at our last visit.

He said "Keep her in the brace (Spinecor), as long as she is tolerating it well. I know that will make you feel more comfortable, too."

Of course, my response was "This isn't about me, it's about Emily."

He responded "It is better to over treat than to under treat."


The verdict on the effectiveness of bracing is still out. I'm with Pooka, in wondering if I am doing the right thing by my daughter in bracing her, because in actuality it may have little to no effect on her curve. Nor will her curve progression be related to her use of the brace.

What I do know at this point is that after one year in the brace, her curve is stable. Which I do not attribute to the brace. The brace has in noway corrected her curve either.

I can think of no worse punishment for any of these children, than years of bracing, followed by surgery anyway. So there comes the question as to what to do. At this moment I am staying with the Spinecor, because the protocol calls for wearing the brace for 18-24 months. So I will give it that time to do it proper justice. I am also hoping that Emily will begin to go through puberty in that time to see how her curve responds to rapid growth.

Pooka1
07-19-2008, 12:23 PM
I can think of no worse punishment for any of these children, than years of bracing, followed by surgery anyway.

That is PRECISELY my thought also. Life is short. In my daughter's case, knowing her identical twin needed fusion, and having some sense of the efficacy of bracing, I would opt for no brace if it was my decision. My daughter is 13 and wants to go with the brace. This is driven in large part by how easily the night-time brace is tolerated. I strongly suspect if she was told she needed to wear a brace most of the day including at school, she would choose to not wear a brace. And I would agree with that decision even after seeing what my other daughter went through with the fusion surgery.


So there comes the question as to what to do. At this moment I am staying with the Spinecor, because the protocol calls for wearing the brace for 18-24 months. So I will give it that time to do it proper justice. I am also hoping that Emily will begin to go through puberty in that time to see how her curve responds to rapid growth.

I think your decision is rational. You know, I'm a bit surprised that surgeons don't know more precisely about the efficacy of bracing in the case of non-idiopathic scoliosis like Chiari. For example, apparently it is known that Marfan or Marfanoid-driven scoliosis is not held by any brace. So why don't they know in the case of these other drivers of scoliosis?

emarismom
07-19-2008, 12:49 PM
What they know is that scoliosis driven by Chiari is quick to progress and it is unlikely that ANY bracing will help.

When Emily was decompressed, at 5, my biggest fear was that the scoli would keep progressing and we would be facing VEPTR with multiple surgeries :eek: Finding her scoli at 5 was a true blessing in my life, because we were able to deal with the underlying cause early. (It's ironic how the worst moments in our lives, can open doors we NEED opened)

Thankfully, her progression was stabilized by the surgery. I opted to try Spinecor in the hopes of a) improving the curve in a young flexible spine
b) keeping the scoli stable, if it were to progress
c) having her in the brace at the onset of puberty

As far as what orthopedics "know", well it seems they "know" far less than we believe that they know. Sometimes I feel I know more about my daughters diagnosis than any of her doctors, because I spend SO much time talking to others who are actually going through it and living it. Where as the doctors spend relatively little time with the actual patients.

Pooka1
07-19-2008, 03:13 PM
As far as what orthopedics "know", well it seems they "know" far less than we believe that they know. Sometimes I feel I know more about my daughters diagnosis than any of her doctors, because I spend SO much time talking to others who are actually going through it and living it. Where as the doctors spend relatively little time with the actual patients.

Ha! Yes I think it is easy to get that impression with the state of the research being what it is... just one notch above anecdotal in my opinion. The fact that experienced surgeons differ radically in some cases in opinion supports your view.

I suspect if error bars were plotted on these graphs showing chance of progression versus Cobb angle, they would overwhelm the data. But I don't know that.

swimmergirlsmom
07-20-2008, 02:20 AM
Hi Scolimom2
My daughter had a cheneau type brace made by Gez Bowman in February and we highly recommend him. We also live in San diego and have seen both Dr Newton at Children's and Dr Bess.
Since we live so close, if you would like to see my daughter's brace and observe the daily schroth exercises she is doing, we would be glad to share so you can see if this is the approach you want to do for your daughter. I will send you a PM with my contact information.

flowerpower
07-20-2008, 07:33 PM
Hi Scolimom2,

I sent you a private message. I am also in North County and my kids are also patients of Dr. Newton's :)

Renee

bracegirl
07-31-2008, 05:48 PM
Okay, I have been in a Cheneau brace for 4 years, wore a boston for 1. While in my boston brace my curves got worse. Cheneau - not so. I am a huuuuge advicate for the Cheneau brace as well as the Schorth Physical Therapy. I was trained by Manuel Rigo, when he came to WI to train pt's in the schroth method. Now, my pt does immersion programs for out-of towners here in Milwaukee. My family is willing to host girls who come. Luke stykleather is the US specialist in the Cheneau brace, and he works in Fairfax VA, but comes to Milwuakee every 8 months ususally. it may be possible to coordinate an immersion with luke's visit. Otherwise, he gets discount hotel rates etc. for people traveling to see him. Without the cheneau brace, I would have needed surgery. It has saved my back. Please, look into it!

Contact information:
Cindy Marti (and her clinic, which includes 3 schroth trained pt's): www.sdwpt.com

Luke Stykleather:
www.orthoticsolutions.com