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View Full Version : Dr. Hey deals with the fallout of parents lying about braces to kids



Pooka1
08-18-2012, 02:47 PM
http://drlloydhey.blogspot.com/2012/08/an-answered-prayer-from-12-yo-girl-with.html


I have dealt with some very unhappy patients in their late teens and twenties who ended up needing surgery, who were braced for several years, and thought that their commitment to wearing the brace meant that they would never have to have surgery. One 21 yo patient I remember, from New Jersey, had a complete meltdown in my clinic over at Duke when I told her that her curve had progressed to over 50 degrees. She screamed and pounded her fist and told me that it wasn't "fair", and that she was promised that she could choose the brace vs. choosing surgery. Now she was really upset that she needed both, and would have never worn the brace if she knew that surgery was possibly still on her future. I think the brace does help in some cases, but there is some "cost", psycho-social development and family dynamic "cost", that in some cases outweighs the possible benefit. The key thing is to empower the patient and family with the information so THEY make final choice, not me.

Kat3573
08-22-2012, 11:21 PM
Poor girl!! I wouldve freaked out if I was the doctor.

They should ban bracing and use the spinecore instead

jrnyc
08-22-2012, 11:57 PM
Kat, spinecor IS a brace

jess

Kat3573
08-23-2012, 11:11 AM
Kat, spinecor IS a brace

jess

At least it's not made out of plastic

mariaf
08-24-2012, 03:47 PM
But (and the jury is out with regard to all braces in this respect) there's no proof Spinecor works.....

Pooka1
08-24-2012, 05:21 PM
But (and the jury is out with regard to all braces in this respect) there's no proof Spinecor works.....

Pretty much. At least three groups tried to replicate the reported results coming out of
Montreal and failed to do so. In reality it is likely many more than that tried to replicate the reported results and were not able to do so. There is a reason chiros and not surgeons are the main suppliers of spinecor in the US. It is worse than unproven... It has failed replication multiple times. There is a reason people don't believe the numbers coming out of Montreal.

tonibunny
08-25-2012, 10:35 AM
I think in many cases, parents themselves were led to believe that bracing or surgery would totally "cure" their child of scoliosis. A few years ago, I mentioned to my mother that I was having problems with pain due to my scoliosis, she said "But you don't have scoliosis anymore!". I still have a 45/35 double curve and at the time was on the waiting list to have a second thoracoplasty to try to further correct my rib prominence. My parents felt that any further problems I had following my childhood surgeries had to be pretty minor, so much so that they've never taken them seriously and didn't bother to visit me in hospital when I had subsequent surgeries.

jrnyc
08-25-2012, 03:56 PM
it may just be denial on my part, but i never think of scoli as a "disease"
i think of it as a condition....
i looked up the definition of "disease" in medical dictionary, and scoli fits the
definition....but i just never think of myself as having a disease....

in my Lyme travels with doctors, i found many who could not deal with patients who did not get better....whom they could not "make" better.....
maybe it was just unacceptable to their egos...i don't know....
i just know it was quite common...
i wonder if the same "doctor syndrome" is true with scoliosis....
when patients don't get better, the doctors can't handle it....
especially if they treat their patients the way the medical "book"
tells them to....

jess

mariaf
08-26-2012, 08:33 AM
Likewise, I suppose, we could consider the entire revision surgery section an example of the way parents lie to their children about surgery "curing" their scoliosis, when in fact in many, many case it's just the first in the series of surgeries.

Hi hdugger,

I've always been curious about this. Does anyone know the percentage of kids who have fusion surgeries as teenagers who go on to need additional surgery later on vs. those that don't.

We know the cases who end up in the 'revision surgery section' represent the former group - but is there any way to know how those numbers compare to the latter? I'm guessing that the patients who fall into the catetory of not needing addiitonal surgery later in life probably aren't posting here.

I've always wondered about this and whether there is any existing data. I would be very interested.

mariaf
08-26-2012, 08:41 AM
Pretty much. At least three groups tried to replicate the reported results coming out of
Montreal and failed to do so. In reality it is likely many more than that tried to replicate the reported results and were not able to do so. There is a reason chiros and not surgeons are the main suppliers of spinecor in the US. It is worse than unproven... It has failed replication multiple times. There is a reason people don't believe the numbers coming out of Montreal.

The other big problem with Spinecor, in my view, is that most practitioners who prescribe it not only, as you say, are chiros - but they also recommend NO out-of-brace x-rays during treatment. I know that the doctor(s) in Montreal only do in-brace x-rays. In fact, a couple of years ago, I knew a mom who finally took her daughter for an out-of-brace x-ray on her own - and the curve had progressed to almost 50 degrees. The child ended up needing fusion. Now perhaps fusion was in the cards anyway, but my problem is that had the progression been found and addressed earlier, perhaps the child could have been a candidate for VBS (which was the mom's 'plan b' if the spinecor didn't work, but it was of course no longer an option at this point), or maybe the mom would have switched to another brace (which of course may have failed as well). Or, today the child might even have been a candidate for tethering, etc. But I can't help but wonder if that is precisely WHY no out-of-brace x-rays are taken (not to have patients walk away if they are unhappy with the results).

Now I'm not accusing anyone of deliberately trying to hide progression, but with so much at stake, I think we have to look at all the possibillities. I also have a big problem with these folks taking only in-brace x-rays since every reputable pediatric orthopedic surgeon/specialist I have spoken with over the past decade believes that in order to get an accurate idea of what the true curve is, that the brace has to be removed for 24-48 hours.

I personally have a hard time believing they are ALL wrong and the chiros are right. I'm just saying...........

Pooka1
08-26-2012, 12:02 PM
Maria, don't the surgeons who invented spinecor also just do only in-brace radiographs? I think the chiros are just copying that. Also, even if it was all the chiros saying one thing as against one surgeon, the surgeon is automatically correct.

Also the situation with surgery plus revision is irrelevant to the brace plus surgery situation for at least a few reasons. Kids don't have surgery to avoid revision surgery like they are braced to avoid surgery. Also, most parents don't have the first clue about revisions rates and probably are silent on the issue with their kids. That is completely not the case with parents and bracing as we can see in Dr. Hey's post and could have known just from human nature.

Last, there is some data that the most frequent fusion, t curves, is mostly stable for decades. That seems to beat the hell out of the suspected brace failure rate. But again, that is irrelevant to this thread about parents lying about bracing.

LindaRacine
08-26-2012, 12:25 PM
Hi Maria...

Last week, I got an email from a former UCSF OrthoSpine fellow, who is going to try to find patients who had fusions in the 60's and 70's, in order to find out what happens during menopause. Since he's in Canada, he'll hopefully be successful in finding a significant number. The few studies that have looked at this issue to date, had very few subjects.

Regards,
Linda

Pooka1
08-26-2012, 02:17 PM
Revision rates for surgery are a complete non sequitor to parents lying to kids about bracing. It is a classic "Look at the Wookie" diversion tactic to avoid the point at hand which is parents lie to kids about bracing. Given what is now known about bracing efficacy, it is not doing a kid any favor to lie to them about this. Hence we see the blowback that surgeons have to deal with.

No amount of surgery revision stats will change the point of this thread or address it in any way whatsoever.

Pooka1
08-26-2012, 02:24 PM
Surgical revision rates could be 100% and my point about parents lying about bracing would still stand. Now the revision rates for common fusions are very low even decades out but it does not matter anyway to the issue at hand. Please follow along.

Pooka1
08-26-2012, 02:26 PM
Here is the difference in a nutshell... bracing is a choice whereas fusion generally is not. That is why revision statistics is irrelevant to parents lying about bracing.

christine2
08-26-2012, 03:10 PM
I never lied to my daughter about bracing. I told her that it may or may not work. I told her it would be expensive and we would have to sacrifice alot. I told her there is still a strong possibility that she will still need fusion. She wanted to a try.

So far we are ahead of the game
She is 12 yrs old - 8/2012 - 2 weeks out of spinecor out of brace 18* now in a TSLO night time only to get through her growth spurt. I understand that js & ais are 2 different monsters. To say that all parents lie to their kids about bracing is wrong.

Pooka1
08-26-2012, 03:17 PM
I of course never said all parents. Clearly parents are not aware of the evidence case for bracing ais and don't realize they are lying in some cases. Advocating for your child entails understanding as much as possible. Dr. Hey's testimonial reveals that folks might need more effort in this regard so as to not let their child be completely blindsided and bitter. And did we really even need that post from Dr. Hey to suspect this?

Also the bracing situation with jis is different as you said.

christine2
08-26-2012, 08:18 PM
Sharon
I don't think that it is right that you bad mouth parents to their kids. It is a hard enough task to deal w/ childhood issues w/out you saying we are liars. You do not know what is best for everyone.

Pooka1
08-26-2012, 08:48 PM
Sharon
I don't think that it is right that you bad mouth parents to their kids. It is a hard enough task to deal w/ childhood issues w/out you saying we are liars. You do not know what is best for everyone.

I never claimed to know what is best for everyone. That is the second time you put words in my mouth that I did not say. Please try to watch that.

Also please re-read Dr. Hey's post about the fallout he encounters.

Pooka1
08-27-2012, 07:27 AM
Lies can completely derail the parent-child bond for decades, if not forever. Sometimes folks don't realize it until it happens to them. I lost several years of a parental relationship because of a lie that I never realized was even affecting me until very late in the game. It is playing with fire to lie to a child. Ask yourself if that woman from New Jersey felt that she was lied to. Imagine how that might ramify through her relationship to her parents. This is not a game or idle chatter or neither here nor there as some here view it.

Lies based on parental ignorance are still viewed as lies by the child. Sooner or later they will get the straight dope. This is not a game of making the parent feel better. The child is what matters.

Pooka1
08-27-2012, 07:33 AM
Anyone who thinks scoliosis fusion in the cases where a consensus recommends it is a choice needs to get out more. There is no real choice in those cases. My kids would likely be dead or disabled for gone by suicide by now absent fusion.

If fusion was a choice then nobody would get it. But we don't obtain that result. Think. Just think.

mariaf
08-27-2012, 12:40 PM
Maria, don't the surgeons who invented spinecor also just do only in-brace radiographs? I think the chiros are just copying that. Also, even if it was all the chiros saying one thing as against one surgeon, the surgeon is automatically correct.

Hi Sharon,

I'm sorry, I think I was unclear (probably rushing and I typed too quickly).

The makers of Spinecor (surgeons) only do in-brace radiographs. You are correct. So these 2 surgeons and the chiros do it this way.

Every OTHER surgeon (any that I have spoken to anyway) agrees the brace needs to be off for 24-48 hours for an accurate reading.

mariaf
08-27-2012, 12:42 PM
Hi Maria...

Last week, I got an email from a former UCSF OrthoSpine fellow, who is going to try to find patients who had fusions in the 60's and 70's, in order to find out what happens during menopause. Since he's in Canada, he'll hopefully be successful in finding a significant number. The few studies that have looked at this issue to date, had very few subjects.

Regards,
Linda

Thanks, Linda.

I thought maybe it was just me, but I've never come across much on the subject - nothing at least, that listed any percentages, etc.

I'd be interested in what this fellow comes up with, or any future data on the topic for that matter.

mariaf
08-27-2012, 12:48 PM
Again, that's a total guess, but I'd be surprised to hear a number lower then 10% or higher then 50%.

It doesn't sound like an unreasonable guess to me. We could be talking about 15-20% or 30-35% - doesn't seem like anybody really knows for sure. So that "higher than 10 percent but lower than 50%" that you've come up with may be as close as anyone has come to narrowing it down thus far :-)

mariaf
08-27-2012, 01:02 PM
Sharon,

I just wanted to say I don't think you were being unclear. Or maybe what I should say is that I understood your original post the way I believe you intended it.

I get that there are two different issues here (the original topic of what children are or aren't told about bracing - and the revision rates) and that your post had nothing to do with the latter.

Somehow they became one, and I could see how that might happen, but I do understand completely what you are saying that one has nothing to do with the other in terms of your original post.

Having NOTHING to do with this thread or any parent here (now I want to make sure I am being clear, LOL), I happen to have a problem with telling kids anything but the truth. Sometimes the hubby will tell a stupid white lie (oh, sure maybe we can go to the zoo tomorrow - when he knows we won't) or I will hear a parent tell a similar silly white lie - and it makes me absolutely NUTS. Just say the truth! I guess we are all just wired differently.....

Pooka1
08-27-2012, 03:12 PM
Hi Sharon,

I'm sorry, I think I was unclear (probably rushing and I typed too quickly).

The makers of Spinecor (surgeons) only do in-brace radiographs. You are correct. So these 2 surgeons and the chiros do it this way.

Every OTHER surgeon (any that I have spoken to anyway) agrees the brace needs to be off for 24-48 hours for an accurate reading.

Oh hey I see now you were clear. I was reading and responding on a tablet in a noisy airport. Sorry. :-)

Parents on this forum are largely hip to the need for out of brace radiographs when using Spinecor. And yet the folks up in Montreal still cling to their protocol. I think journals need to scrupulously avoid publishing any in-brace data or any data that is not gained after at least 48 hours out of brace. The literature is messy enough with adding to it with nonsense.

I have always wondered what the Spinecor inventors think of how this has played out with largely only chiros providing the brace and only a literal handful of surgeons doing so, at least in the US. I bet they were blindsided by that but when nobody can replicate the results, what else did they expect?

Pooka1
08-27-2012, 03:21 PM
It doesn't sound like an unreasonable guess to me. We could be talking about 15-20% or 30-35% - doesn't seem like anybody really knows for sure. So that "higher than 10 percent but lower than 50%" that you've come up with may be as close as anyone has come to narrowing it down thus far :-)

I predict that number will be in the low single digits for T fusions that end at L1 and above. Our surgeon seems to think it will be indistinguishable from zero for at least some classes of these T fusions. Given that other fusions (high T, L, etc.) have not been "solved" to the same extent as T fusions, I wouldn't hazard a guess about revision rates. The only think that I have seen said is the likely of needing distal extension tends to scale with last instrumented vertebra when getting to L3 and below. The lower you go the higher the chance.

In any case, it makes no sense to lump all fusions together into one "revision rate" when we know already know some have a near 100% chance of needing extension and some have a near 0% chance of needing extension based on the data in hand now.

Pooka1
08-27-2012, 03:25 PM
Having NOTHING to do with this thread or any parent here (now I want to make sure I am being clear, LOL), I happen to have a problem with telling kids anything but the truth. Sometimes the hubby will tell a stupid white lie (oh, sure maybe we can go to the zoo tomorrow - when he knows we won't) or I will hear a parent tell a similar silly white lie - and it makes me absolutely NUTS. Just say the truth! I guess we are all just wired differently.....

I agree. Kids affected by scoliosis have a right to the fact case as it exists explained in terms they can understand. It's their bodies. I see the issue as being of a piece with larger issues in society.

Just because a parent hasn't encountered fallout doesn't mean it won't happen. This thread is a PSA in my opinion.

mariaf
08-27-2012, 03:44 PM
I have always wondered what the Spinecor inventors think of how this has played out with largely only chiros providing the brace and only a literal handful of surgeons doing so, at least in the US. I bet they were blindsided by that but when nobody can replicate the results, what else did they expect?

Sharon,

Are there any orthopedic surgeons in the US prescribing this brace? I think there are a few who might say to parents "OK, if you really want to use the Spinecor instead of, say, a Boston brace, we'll support you and monitor the results" but I personally don't know of any who prescribe it themselves. Of course, the fact that I haven't heard of any means nothing :-)

mariaf
08-27-2012, 03:47 PM
I predict that number will be in the low single digits for T fusions that end at L1 and above. Our surgeon seems to think it will be indistinguishable from zero for at least some classes of these T fusions. Given that other fusions (high T, L, etc.) have not been "solved" to the same extent as T fusions, I wouldn't hazard a guess about revision rates. The only think that I have seen said is the likely of needing distal extension tends to scale with last instrumented vertebra when getting to L3 and below. The lower you go the higher the chance.

In any case, it makes no sense to lump all fusions together into one "revision rate" when we know already know some have a near 100% chance of needing extension and some have a near 0% chance of needing extension based on the data in hand now.

You make a good case. I do recall Dr. D'Andrea once telling me that since David has a single T curve, that if he ever did need fusion it would be pretty straight-forward. She was really talking about losing very little flexibility (vs. a longer fusion), but it makes sense that T fusions would cause fewer issues long term.

Pooka1
08-27-2012, 04:30 PM
Sharon,

Are there any orthopedic surgeons in the US prescribing this brace? I think there are a few who might say to parents "OK, if you really want to use the Spinecor instead of, say, a Boston brace, we'll support you and monitor the results" but I personally don't know of any who prescribe it themselves. Of course, the fact that I haven't heard of any means nothing :-)

Ah that is an important distinction that I didn't think about before you wrote it. I think Hanson in Texas will use Spinecor IIRC but perhaps only in response to a parent insisting. Who knows. It could be that even the handful who will prescribe it will never volunteer it. I can see that given nobody has been able to replicate the results from Montreal. I spoke to one surgeon who said it was his impression that nobody believed the Coilliard/Rivard data. Also, Newton can be heard to say as an aside during a taped presentation that they tried very hard to make Spinecor work (i.e., replicate the Montreal results) but couldn't get it to work. Multiply that times every surgeon in the US and it is easy to see why practically no trained person is using it for AIS anyway. In contrast, I think any brace might work for JIS it seems in at last some cases.

Pooka1
08-27-2012, 04:32 PM
You make a good case. I do recall Dr. D'Andrea once telling me that since David has a single T curve, that if he ever did need fusion it would be pretty straight-forward. She was really talking about losing very little flexibility (vs. a longer fusion), but it makes sense that T fusions would cause fewer issues long term.

That's the consensus as far as I can tell and as far as I have been told.

In that regard, it is a small mercy that most curves are (non-high) T curves.

Pooka1
08-27-2012, 04:35 PM
The honest assessment is to say that previous patients have had a significant amount of problems,

This statement is DIShonest in the extreme. And again, you can't lump all fusions together. That is also DIShonest. Some are largely "solved" as far as anyone can tell and out a few decades.

mariaf
08-27-2012, 05:08 PM
But I'd be loathe to promise any child going into fusion surgery that they'd end up with "zero" spinal problems. There is nothing in the evidence to support that number, and making up that rosy picture robs the child of the chance to make an informed decision about their own health and body.

I would think (and hope) that nobody is promised anything of the sort. What is the saying in medicine 'there are no guarantees'. I find most in the medical profession to be the other extreme (maybe for liability/malpractice purposes). But, for example, before David's VBS, Dr. D'Andrea went over every possible complication that could arising during or after surgery (to the point I was scared to death!), thankfully none of which happened.

But I think that making a distinction between different types of fusions is something entirely different from promising a future free of any problems, as I'm sure you would agree.

mariaf
08-27-2012, 05:12 PM
Ah that is an important distinction that I didn't think about before you wrote it. I think Hanson in Texas will use Spinecor IIRC but perhaps only in response to a parent insisting. Who knows. It could be that even the handful who will prescribe it will never volunteer it.

I brought it up because I know of several cases where this very thing happened. Parents insisted on using the Spinecor vs. another brace and the surgeons still agreed to follow the child. Thankfully, in some cases the parents listened to the advice of the surgeon to get out-of-brace xrays!!

In other cases, the parents were told by the surgeon that they didn't use Spinecor because they've seen no evidence of its effectiveness but that the final decision, of course, was the parent's.

Pooka1
08-27-2012, 05:19 PM
I would think (and hope) that nobody is promised anything of the sort. What is the saying in medicine 'there are no guarantees'. I find most in the medical profession to be the other extreme (maybe for liability/malpractice purposes). But, for example, before David's VBS, Dr. D'Andrea went over every possible complication that could arising during or after surgery (to the point I was scared to death!), thankfully none of which happened.

Exactly. They can only go by the data in hand. That data shows something in every case. Surgeons are not working blind here as has been implied.

The only guarantees are death, taxes and DDD if you live long enough as far as I can tell.

mariaf
08-27-2012, 11:50 PM
The *only* reason to fuse a spine in a child is to avoid pain/disability/surgery in the future (since kids are largely painfree).

Don't get me wrong, fusion is a huge surgery and frankly I'd be pretty scared if my child was facing it (which would be normal, I guess) so it's something I'd want to avoid, if at all possible.

But I guess another way to put it would be that the only reason to fuse the spine would be to stop a rapidly progressing curve....which to me is actually similar to what you are saying because I think we'd all agree that a curve of, say, 65 or 75 degrees (or whatever the 'end' number might be - maybe higher in some cases) would be very likely to cause pain, and even perhaps some degree of disability.

Pooka1
08-28-2012, 06:12 AM
And parents shouldn't lie about bracing to kids.

LindaRacine
08-28-2012, 01:46 PM
And... we finally get back to the real issue.

Over the years, I've seen this debate dozens of times. Think of the arthritis we'll all have from typing too much! ;-)

NO ONE knows the truth yet. Doctors and parents are mostly doing what they think is best. All we can do is try to be as informed as possible, and try not to weight one choice over another by exaggerating or lying about it.

We DON'T know if:

Bracing stops progression
Bracing keeps anyone from requiring surgery, now or later in life
Surgery at a young age keeps kids from requiring surgery later in life
Current surgery techniques lead to less revision



We DO know that:

Surgery on very large thoracic curves stops much of the potential damage to lungs and heart
Bracing allows some parents to feel that they're not just sitting around waiting for fate to take its course
No matter what we do or do not do, there will always be a possibility of requiring additional treatment



These debates always come from someone championing one treatment over another. Since we don't know what works and what doesn't work, I don't see why we can't all just say "this is what I tried, and so far, I'm happy with the outcome". There are no absolutes when it comes to the treatment of scoliosis.

--Linda