Stop trying to convince that official western medical community is the only option..

[rohrer01]

Don't leave me here alone!!!!

Sharon,
You aren't left here alone. You don't have to return to the thread, either.

Flerc,
Honestly, none of this made any sense to me from the beginning. I was trying to understand you and where your anger was coming from in your title and first post. I'm sorry, I never got it and still don't. But that's okay. I will just agree to not understand why you are upset.

[flerc]

Rohrer if I’m upset is because what I said is happening in this forum but sorry, I cannot explain you in a different way of all I already did. If you really want to understand it, I suggest you to ask Hdugger, who perfectly understand my puzzlement whith this forum and probably she may explain you in a different and more clear way. Certainly it have not any sense that we continues talking about this.

[flerc]

And certainly Pooka1, it has not any sense to contimue talking about this with you any more..

First of all, do you agree with my assertion []

[the categorical assertion
'There is no evidence any conservative treatment has prevented any surgery' and hundreds meaning the same

is at least a so much convincing argument to believe what follows in those posts:

‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

or not?

I take your silent as a Yes. Of course is something so much convincing to hear this.. Oh my good! There is no evidence about just only one case! Why may I expect to be the first? What kind of ignorant desperate idiot am I?
If someone is sure to have only one option, of course will decide to take it and of course trying to think it will be a good option and having a great hope that his life would be better.
What if then, even the surgery was a great success, he realize his life is worst, the worst he never imagines could be?
And what if then he sees an evidence that a non surgical method prevented one surgery? What do you think he may feel against you and this forum?

But sure not worry you to think that.. sure you may argue something convincing in order to continues doing your job here free of guilt.
So say what you wants and continues doing your job for ever. Certainly at least by now I have not any interest in entering to this thread any more, but I will not feel me any more an accomplice seeing what happens here and not doing anything against it.

[mariaf]

I often say that when you are faced with scoliosis, you have to choose what amounts to the lesser of the evils. There is no perfect solution at this time and there may never be a way to make the spine the way it was prior to the onset of scoliosis, particularly in moderate to large curves.

"No perfect solution" also, of course, includes VBS. However, while I'm sure that it is true that "some doctors worry about uneven wear on the discs" that doesn't mean it will happen. The doctors I have spoken to (those who perform VBS) have not seen any evidence of this so far. Of course, anything can happen later on down the line (for those who opt for surgery/VBS or for those who do not), but at this time those following the pool of VBS patients seem to feel the benefits still greatly outweigh the risks, given that many of these kids would otherwise require fusion, growing rods, etc.

Again, the lesser of the evils......

[Pooka1]

I often say that when you are faced with scoliosis, you have to choose what amounts to the lesser of the evils. There is no perfect solution at this time and may never be a way to make the spine the way it was prior to the onset of scoliosis, particularly in moderate to large curves.

"No perfect solution" also, of course, includes VBS. However, while I'm sure that as you say "some doctors worry about uneven wear on the discs" that doesn't mean it will happen. The doctors I have spoken to (those who perform VBS) have not seen any evidence of this so far. Of course, anything can happen later on down the line (for those who opt for surgery/VBS or for those who do not), but at this time those following the pool of VBS patients seem to feel the benefits still greatly outweigh the risks, given that many of these kids would otherwise require fusion, growing rods, etc.

Again, the lesser of the evils......

Well put.

I have continually referred to this game as cutting losses. Normal is off the table. Close to normal is doable in some cases. Science and medicine appears to be the only viable path. Folk science and alternative treatments have to pony up evidence of efficacy just like medicine. Life is very unfair and scoliosis is just another exhibit proving that case.

[mariaf]

I am certainly not saying that disc issues can't happen (I don't think you were questioning that, but I just wanted to be totally clear).

However, as far as anything insurance carriers state (not just with regard to VBS but with regard to anything), they are of course looking for ways to deny having to pay. That's their goal. For this reason, they would be the last source of information and opinion that I personally would rely on. They definitely have 'a horse in the race' as Sharon likes to say.

Having said that, I believe you when you say you found this statement other places when googling. When discussing just about anything, you can usually find opinions on both sides on the internet - and I'm sure there are those who in fact are concerned that this 'may' happen. One thing that I take comfort in is that so many parents who are in the medical profession have opted for VBS for their children. Offhand, I can think of 4 or 5 doctors, a radiologist and several nurses and other medical professionals - almost a disproportionate number, which I attribute to the fact that perhaps they are more likely to hear about the latest advances in medicine? I don't know. Could they all be wrong - yes, of course, but as I said it does give me some comfort. I know that, unlike insurance carriers, when these parents did their research it was focused on what was best for their child and nothing else.

Getting back to Blue Cross, I don't necessarily believe they formed thieir opinion based on 'informed medical review' (if by that term you mean comprehensive studies where large numbers of patients were followed post-VBS. As you state, VBS hasn't really been around long enough for that, and I've seen most studies to date and none that I saw reference this concern). I think it's far more likely they are doing what insurance carriers always do - assuming the worst until proven wrong, in order to save money.

With regard to flexibility, VBS is definitely not akin to fusion (maybe I did not correctly understand what you are saying). More than a few kids (even those with double curves and therefore a large portion of their spine 'stapled') have returned to activities like high-level gymnastics following VBS simply because they don't lose any flexibility whatsover.

In my mind, a lot of the discussion about what may or may not happen in the future, post VBS, is moot because as I often say:

'Would I prefer my son not have any hardware at all'? Yes.

"Given the same choices today, would I opt for VBS again?" In a NY minute.

[mariaf]

Until you're faced with absolutely *having* to remove the limb or fuse/staple/brace the spine, you're going to look for another option.

I doubt many parents would even consider bracing/stapling/fusion until they absolutely had to.

[mariaf]

I agree that it is relatively rare for a parent to want to try alternative treatments even after a doctor has said that surgery was clearly needed, but it does happen. I am probably most bothered by claims regarding alternative treatments that seem to be made for the purpose of separating unsuspecting, desperate parents from their money. But I guess we could debate these things until the end of time.

One thing I wanted to mention with regard to VBS and insurance. In the past few years, several different insurance carriers have covered this procedure which is probably why is it often now performed outside of Shriners (by guys like Dr. Vitale in NY, Dr. Diab in CA, etc.). We did an unscientific survey on the VBS site and found somewhere around 50% of the carriers that members had did in fact cover the procedure (some after an appeal was filed, others on the first attempt). We've also spoken to staff in different doctors' offices and they confirm the trend that more and more carriers are starting to cover VBS (not all of them of course, but that things are definitely moving in the right direction). Perhaps some insurance companies feel VBS is even more promising that Blue Cross does. I am also assuming that the carriers covering VBS no longer consider it experimental if they are paying for it. I guess insurance companies are like the rest of us - each with their own views and opinions.

I can't say that I agree with the statement that "VBS is in the same category as other alternative treatments" although I understand that you meant it has not been proven over 20 or 30 years. However, the one difference between VBS and alternative treatments like CLEAR (just to use it as an example) is that at least there is evidence that VBS has reduced curves in some patients, even through the end of growth/skeletal maturity. I am not aware of any cases where CLEAR or another alternative treatment method (some which have been around a lot longer than VBS) has achieved this. If they exist, I would love to see the proof because the truth is that I would love to see the day when a non-surgical method can do this, but unless and until that day comes, we are again left with a matter of choosing the lesser of the evils.

[jrnyc]

VBS is done by legitimate doctors...
i think alot of so called "alternative" treatments are done by
chiropractors...i would never put them in the category surgeons are in..

also..."alternative" treatments as discussed here seems to imply
some approaches that are...outside of traditional medicine, to put
it kindly...
perhaps people should specify nonsurgical treatments vs surgical
approaches...or fusion vs nonfusion...
i guess i mistakenly thought alternative just meant nonsurgical...as in
"alternative to surgery"
my mistake...

jess

[rohrer01]

Here's the concern statement about VBS (I pulled this from Blue Cross's page about scoliosis treatments, but I found it other places when googling)

"A concern is that stapling spans the flexible discs, and the
immobilized discs may be subject to degeneration."

I assume this is coming from some kind of informed medical review, and it makes sense in terms of how the spine reacts to other immobilizations.

The vacuum has caught me once again!

Hdugger,
Just stop and think about that statement. What in the world do they think happens to our discs when they are UNTREATED? I'm sure you have seen some of the x-rays on here of folks between about 35 an 65 years old and some of the gut-wrenchingly horrible degeneration that occurs on the discs and spine. We are talking about treatments for kids only. There is a very small time window where BIG decisions have to be made. If the wrong decision is made, treatment options decline rapidly. As far as nonfusion surgical options go; they just aren't available to adults because by the time we make it to adulthood, our spines are so messed up that only certain specialists can even operate to fuse the spine and at great risk to the patient.

So here we have it. If a child isn't treated with a less invasive, nonfusion surgery during this critical window, then they have nothing left to try except "alternative" methods. The good thing I see in these nonfusion surgeries is the fact that they aren't fused. If something doesn't work out and the "hardware" has to be removed, clipped or whatever they would do to "undo" the fix, the child (probably an adult by this time) isn't any worse off than if they hadn't had it done. In fact, they will probably be better off for having had their spines held straighter for so many years.

With this in mind, do you really and honestly think it would be fair for that child if a parent or guarian DELIBERATELY missed that crucial time period where something could be done in exchange for experimenting around with stuff like myofascial release, CLEAR, chiropractic, extensive bracing (thinking of Kat here, who by the way IS angry), or other "therapies" that haven't proven effective?

Heck, I'm a little angry that they putzed around during MY window of opportunity an opted out of fusing a few vertebrae and leaving me the way I am, in chronic pain. During this time I had chiropractic, muscle stimulation, very ineffective PT (including harmful PT exercises), traction, shoe lifts, heavy anti-inflammatory drugs, and I'm sure a few things I can't remember. Aside from taking the medication, all of these "therapies" took so much TIME out of my life. Time I would have rather spent being a teenager. All for what? Nothing worked and MY time was wasted. I would have been better off if everyone had just left me alone. If I had found out later on that things like VBS or tethering (probably tethering in my case) had been available and I was subjected to all of that time consuming, ineffective torture, I would be LIVID to say the least. That's my own feelings on the matter. There may be people out there that feel differently and would rather waste their time doing that stuff to try to avoid a surgery of any kind.

On a personal note, I have a shirt-tail relative who's custodial parent denied her surgery (she had IIS or congenital - not sure which). By the time she was 18 it was surgery or die. Her noncustodial parent provided her access to surgery (which noncustodial parent wanted her to have all along). They did the best they could with the technology they had at the time, but it had gotten so bad that they couldn't get her very straight. She's been on disability for a very long time. She's now in her early 50's and she's progressed again. She's on oxygen and too frail to operate on. The doctors have only given her a couple of years to live. Now, when dealing with severe cases like this, how fair is it to the child to use "alternative" ineffective treatments when this is the outcome? Did "avoiding surgery" save this woman's life or take it prematurely?

I really think that this topic of Flerc's really boils down to medical ethics. What is ethical to put a child through? Since there is no "cure", is it ethical to withhold treatments that are proven to at least help? I have some very strong opinions regarding this, especially when nonfusion surgeries are now available. Yes, I chose not to even follow my kids with x-rays. HOWEVER, I gave them the eagle eye treatment and continually looked at them bending over, even in my nonscoliotic child. My kids had mild curves, so I wasn't faced with the really tough decisions. I'm sorry for you parents out there that are. But you, as parents, need to look at the long term consequences of the treatments you choose. Your children won't be children forever and what you choose for your child now WILL impact them as adults.

I will step down from my soap box now.

[rohrer01]

The JIS kids are a special case, I suspect. I've seen parents waiting for VBS who brace and end up reducing the curve so low that they're no longer in the VBS range. And we have a parent who has used exercise to reduce the curve. Are those attempts wrong? Should they all have gone into VBS because it came out of the medical realm and was thus somehow closer to standard medicine, if just by association? What about the growing rods? Would kids have been better off trying torso rotation instead of using those? Or are those kids better off for their treatment.

Yes, I agree that IIS and JIS kids are a whole different ballgame. They DO respond to different treatments. I'm obviously talking about those kids for whom there is no significant improvement with whatever treatment they are using. Heck, I had a self-resolving JIS child. It does happen. I look at Tamztom and think he's working a miracle with his daughter. She is either a very special case or she is very flexible and he has trained her to stand in a certain way that indicates improvement. But her case is also JIS, not AIS and she spends copious amounts of time exercising.

The person I talked about, I don't know if she ever received any treatment. However, surgery was strongly urged and her custodial parent refused. She had to go get help when she turn 18. If she did receive treatment of sorts, could that be called medical neglect? That's a medical ethics question, as is all of this.

The thing is, we don't know. VBS is just as alternate as the rest of this stuff - it falls into the realm of things where there's no solid evidence of what it will do long term. Will people kick themselves for missing the boat? Or heave a sigh of relief? Noone knows. We're all *hoping* it works. But it's just a hope at this point.

That's the whole point. We don't know the long term effects of ANY of this stuff except for the old Harrington rods. There's more information about the newer implants, but we're still talking fusion here. To me, fusion is the "iron lung" of spinal surgery, but for now it's all we have for severe cases.

With the nonfusion methods, how can this possibly be worse than fusion? It reduces curves and so what if a staple breaks? It's not like a pseudoarthrosis and a broken rod. What about tethering? I realize these are "new", but as I said earlier, they aren't fused. So how could they be worse off if it somehow fails down the road? I can see some of the same complications, as with any spine surgery, such as infection, especially. But these kids are still free to use other "alternative" approaches BECAUSE they aren't fused. I could see with tethering the risk of tethering too tightly before the growth spurt causing a curvature in the opposite direction. If a tether line broke, I suppose it could cause some injury, but not as much as you would logically think a broken rod could cause. My guess is that people will be kicking themselves for missing the boat on these treatments. Now, which one to choose may be a different matter.

I wouldn't fault a parent for any path they took. We're all just stumbling around here. Rampant abuse - people withholding desperately needed treatment - is very, very rare. But even without abuse, none of the options are all that great. None of these kids, including mine, is going to end up feeling great as an older person. They're all going to have problems, no matter what path they walk down. Because we cannot cure scoliosis. Once you've got it, you've got it, and you're never going to have a normal trouble-free spine. I'd cut everyone alot of slack, given those outcomes. There is no "right" choice, there are just varying shades of wrong. Do we pick the door with the lion behind it, or the tiger? I just wish there were a third door.

I would fault a parent for choosing a treatment option that isn't working and continuing other unproven treatments until the window of opportunity has passed. Yes, we are all stumbling around here. BUT, we have stumbled on some treatments that have proven to reduce curves, even if only in the short run. Kat's parents forced her to wear a brace that she didn't want on a curve that was too large. She suffered real physical injury from that AND had to have a longer fusion as a result of waiting longer. I realize that they are not bad parents and they were hoping to save their daughter from fusion, but look at the outcome of that. Now they have an angry young teenager to contend with. Who ultimately suffers? Kat does.

When you say there is no "right" choice, it reminds me of some exams they give in college that are designed to be thinking exams. There may be no "right" answer, so they say choose the BEST answer. Each child is unique and may respond to different treatments. If they respond, GREAT! I'm talking about the ones that don't. How do you classify parents that withhold desperately needed treatment? If they are in earnest effort taking their child to a chiropractor who keeps promising that they can help, yet the curve/s keeps progressing, are they neglectful? How would you prove that? You could substitue any other nonsurgical treatment in for the word chiropractor. What treatment are they withholding from a desperately needy child? I hope you see where I'm coming from. It's a medical ethics question.

Your son's case is special. He probably wouldn't be a ligitimate canditate for any treatment other than fusion because of his congenital scoliosis. He's also an adult and can "try" whatever he wants. If he's not in pain and not progressing, the safest thing for him to do would probably be to do nothing. My case is unique in that there really aren't many people around like me. Your son is the closest I've ever come to hearing about someone "similar". But I don't have congenital scoliosis and I'm a leftie. I've yet to meet anyone like me. I will tell you, in case you want to pass it along, accupuncture can help with muscle pain. So can trigger point injections and Botox injections if done properly. Sometimes all we can do is treat the pain, so you are right. Once a person has scoliosis, they always have it because there is no "cure" and we are bound to have the ill effects of it in our later years, if not sooner. What I'm talking about is minimizing those ill effects if possible with treatments that are known to reduce curves. I sound like a broken record, but it's ethics.

[mariaf]

What in the world do they think happens to our discs when they are UNTREATED? I'm sure you have seen some of the x-rays on here of folks between about 35 an 65 years old and some of the gut-wrenchingly horrible degeneration that occurs on the discs and spine. We are talking about treatments for kids only. There is a very small time window where BIG decisions have to be made. If the wrong decision is made, treatment options decline rapidly.

So here we have it. If a child isn't treated with a less invasive, nonfusion surgery during this critical window, then they have nothing left to try except "alternative" methods. The good thing I see in these nonfusion surgeries is the fact that they aren't fused. If something doesn't work out and the "hardware" has to be removed, clipped or whatever they would do to "undo" the fix, the child (probably an adult by this time) isn't any worse off than if they hadn't had it done. In fact, they will probably be better off for having had their spines held straighter for so many years.

With this in mind, do you really and honestly think it would be fair for that child if a parent or guarian DELIBERATELY missed that crucial time period where something could be done in exchange for experimenting around with stuff like myofascial release, CLEAR, chiropractic, extensive bracing (thinking of Kat here, who by the way IS angry), or other "therapies" that haven't proven effective?

.....If I had found out later on that things like VBS or tethering (probably tethering in my case) had been available and I was subjected to all of that time consuming, ineffective torture, I would be LIVID to say the least.

On a personal note, I have a shirt-tail relative who's custodial parent denied her surgery (she had IIS or congenital - not sure which). By the time she was 18 it was surgery or die. Her noncustodial parent provided her access to surgery (which noncustodial parent wanted her to have all along). They did the best they could with the technology they had at the time, but it had gotten so bad that they couldn't get her very straight. She's been on disability for a very long time. She's now in her early 50's and she's progressed again. She's on oxygen and too frail to operate on. The doctors have only given her a couple of years to live. Now, when dealing with severe cases like this, how fair is it to the child to use "alternative" ineffective treatments when this is the outcome? Did "avoiding surgery" save this woman's life or take it prematurely?

What is ethical to put a child through? Since there is no "cure", is it ethical to withhold treatments that are proven to at least help?

But you, as parents, need to look at the long term consequences of the treatments you choose. Your children won't be children forever and what you choose for your child now WILL impact them as adults.

Rohrer,

I wanted to pull the parts of your post that really rang true and ended up taking just about all of it. I highlighted a few sections which echo precisely what I've basically been saying all along. (You may have said it better).

Other than that, I have nothing to add to your post except that I nominate it for post of the month.

[mariaf]

I would fault a parent for choosing a treatment option that isn't working and continuing other unproven treatments until the window of opportunity has passed.

How do you classify parents that withhold desperately needed treatment? If they are in earnest effort taking their child to a chiropractor who keeps promising that they can help, yet the curve/s keeps progressing, are they neglectful? How would you prove that? You could substitue any other nonsurgical treatment in for the word chiropractor. What treatment are they withholding from a desperately needy child?

A case that often comes to mind for me was a mom I met about 5 or 6 years ago. She put her daughter in the Spinecor brace for what started out as a 30-ish curve. She had also inquired about VBS and that’s how we started talking to each other. I can’t recall exactly, but the child was somewhere around 10 when they began bracing (maybe give or take a year).

As most of you know, when a child wears the Spinecor brace, for some reason only in-brace x-rays are taken. I’ve heard the explanation given for why this is done but it makes no sense to me; and most reputable pediatric orthopedic specialists would agree that in order for an accurate measurement of any curve to be obtained, one’s brace needs to be off for a minimum of 24 hours.

But this mom, a good mom, trusted in what she was told and wanted to avoid any surgery whatsoever for her daughter, an understandable stance.

The child wore the Spinecor brace for a few years, and at each visit only in-brace x-rays were taken. The numbers may have fluctuated slightly but generally the in-brace x-rays showed a slight improvement (maybe 26 one time, 25 the next, etc.). Then at one visit the number crept up a little, over 30, and mom finally decided to take her daughter for an out of brace x-ray and get another opinion (at CHOP I believe).

The child’s curve measured in the 50’s and she ended up needing, and having, fusion. I can’t tell you how distraught mom was. I remember her calling me on the phone crying, blaming herself for the fact that her daughter now had only one option – fusion.

I’m not bashing Spinecor or blaming anyone for their decisions about their children, but I think this is an example of what Rohrer was trying to say…..

[mariaf]

For AIS, especially in those growth spurts, only bracing and surgery seem to help.

Does anyone know the rate of success for bracing in cases of AIS? I seriously would like to know because I believe bracing definitely can help JIS kids, but I'm sort of on the fence in terms of AIS.

[Pooka1]

Does anyone know the rate of success for bracing in cases of AIS? I seriously would like to know because I believe bracing definitely can help JIS kids, but I'm sort of on the fence in terms of AIS.

I have posted a direct quote from Sponseller, an expert in this field. He admits there is no good evidence bracing works. (He did not distinguish between JIS and AIS but I think he would make that distinction since bracing clearly has not only held some JIS curves but reduced them, at least prior to the growth spurt.) This is also why Hey can been seen on his blog as saying bracing pretty much can work in JIS (though he changed some wording slightly in response to a letter from Celia as I recall). He is more sanguine for AIS of course as far as I can tell. Here he talks in terms of balancing quality of life which is another way of saying the evidence isn't there in my opinion. If the evidence was there, he would simply say that.

And anyone who claims there is evidence bracing works in AIS has to explain the BrAIST study. That's probably combined 1000 years of experience among those surgeons that all agree it is ethical to randomize kids to a non-brace control group.