SpineCor and Insurance

[flerc]

It would be the best for you, sure.
I joined the Emily's group since some months ago, when she told me about the first adult cases. I posted about this news here and even I posted a thread in the surgical section quoting what Mariaf said. But it seems I'm not good to lead people to realize how good chance, at least much of them, have today. Maybe you could do it better. I hope it.

[Pooka1]

It would be the best for you, sure.
I joined the Emily's group since some months ago, when she told me about the first adult cases. I posted about this news here and even I posted a thread in the surgical section quoting what Mariaf said. But it seems I'm not good to lead people to realize how good chance, at least much of them, have today. Maybe you could do it better. I hope it.

Is that group where all the people doing PT went? Were any of those kids done with growth and avoided surgery? Were any stapled/tethered/fused?

If any people were successful I assume they would tell the world in every possible forum out of wanting to help others. There are several people who were doing PT and I just wonder what happened to them. If they don't report back then those are data points lost to new people.

[flerc]

How sick you are my god. Even you don't try to don't make it so obvious that it would make you happy if they would have failed with non surgical options. Look for help.
I continue in contact with many of those good people of this section, you may be sure that the reason that you don't know what happened with them is only because nobody wants to know never more what happened with someone so insane and her work here.

[mariaf]

To clarify whether or not VBT has been done on adults - yes, it has (at least once to my knowledge) been performed on a 50 year old woman. Her slightly older sister is now scheduled for VBT as well (patient #1 joked that she will no longer be the oldest VBT patient!); the procedure was performed almost a year ago by Drs. Antonacci and his team at the Institute for Spine and Scoliosis in NYC.

With regard to skeletally mature patients (meaning late teens and early 20's), I will separate them from "adult" patients for purposes of this post. The team at the Institute has performed VBT on several skeletally mature young adults, as has Dr. Braun at Dartmouth Hitchcock in NH; and on very select patients Dr. Hoernschmeyer at Missouri Women's and Children's Hospital. In addition, we just learned recently from Dr. Baron Lonner, also in NYC, that he is performing VBT on skeletally mature patients as well.

There is also one surgeon in the UK (Dr. Bernard) who will consider VBT on skeletally mature patients, and he has performed at least a few such surgeries.

I am sure we will hear of more surgeons following suit at some point but that's what we know at this time.

If anyone would like to learn more, we have a very comprehensive body of information regarding VBT on the FB group below, including a list of surgeons in the U.S. and around the world who are performing VBT. There are also over 1,100 members, many of whom have VBT experience that they are willing and happy to share with others, to try to help and support them.

https://www.facebook.com/groups/ScoliosisTethering/

[mariaf]

P.S. Please keep in mind that even the surgeons are still learning. The same questions that were asked, even 6-12 months ago, might get very different responses today. So I would caution anyone about referring to quotes and articles that are not very current/recent. It's a full time job trying to stay current since VBT is still evolving!

For example, one year ago, the surgeons at the Institute were just starting to expand the VBT parameters to include older patients. In fact, there is some thought among surgeons now that the ideal candidate is someone with little growth remaining - the reason being there is much less chance of over correction. Again, they are learning as they go. A few younger patients have, in fact, over corrected and so now they surgeons are very careful to try to take all factors into consideration in each case, and intervene (i.e., perform VBT) at the best possible time.

One year ago, it was only the team at the Institute who patients with little or no growth remaining could turn to. Then we saw Dr. Braun routinely accepting patients (generally older teens) who were done growing for VBT. This week someone reached out after hearing that Dr. Lonner was performing VBT on skeletally mature patients and he confirmed that he was. Does that mean adults? I would say that each case would be evaluated on an individual basis, not just by Dr. Lonner, but by Dr. Antonacci, Dr. Braun, Dr. Hoernschmeyer, etc. As with most advances, there are usually a few surgeons who are willing to go first; then if the results seem positive, others become more open to the idea.

[3sisters]

Flerc, maybe you can leave here and go join your buddy Emily wherever she is on the interwebs? Wouldn't that be better for you?

Sharon, Flerc is an integral and welcome member of Maria's and my group, as is anyone who is genuinely interested in VBT for their child or themselves. I only come by here occasionally to see if I might be able to help someone; mostly with regards to VBT information. I really do feel denigrated by you on the NSF, and that is a shame, since I come by to help and get personally ridiculed for no valid reason. The place I am on the 'interwebs' is co-admin of an amazing VBT forum; you see it in Maria's signature block. Many people ARE losing out on information that could help them as more of us are driven away from NSF and form our own supportive scoliosis forums (be them PT, VBT, or other.) Flerc's buddies run the biggest, most informative and up-to-date VBT site that reaches everyone that we can- all in a supportive environment.

[Pooka1]

I only come by here occasionally

If you admit you haven't been following along, why do you question my reason for suggesting flerc would be happier elsewhere?

And apparently he *IS* happier elsewhere. Case closed.

[Pooka1]

(repost)

http://www.scoliosis.org/forum/showt...ng+people+away

If asking for evidence for claims drives people away then I don't see the problem.

If they have evidence then they will post it. They will WANT to post it. It won't be like pulling teeth. People being driven away is an imaginary problem in terms of mattering to patients and parents. No evidence of treatment efficacy is lost because the people going away seem to be doing so to avoid being asked for evidence. They may feel driven away if they don't want to be asked for evidence.

Again, I don't see the problem. People are free to discuss what they are doing. If they are trying something that has no known evidence of efficacy then they should be told that. As soon as they make claims of efficacy, the requests for evidence should start rolling in. Conservative and alternative methods aspire to be a science. They should want to prove their efficacy instead of it being pulling teeth. People objecting to this are not doing science. Martha Hawes obviously would never object to people asking to see her radiographs to back up her claims. And she certainly would never think to publish without radiographs. You could have invented the most effective PT treatment in the world but if you don't have radiographs proving it, people have to take the claim on faith. Maybe the inventors are satisfied with just helping people who happen to hear about the method and take a leap of faith when they could be helping many, many more people if they publish. Maybe just picking off select people to help is okay rather than trying to help more people.

They can come here to let people know and to recruit but once the claims of efficacy are made, then evidence is required.

Nobody should be driven away for stating a new treatment, admitting there is no evidence of efficacy yet, and offering to help people learn the method to see if it is effective. Nobody should be driven away for repeating what an alternative treatment purveyor told them about curve regression. That is not happening here. What is happening here is pressure to pony up evidence of efficacy claims that drive people away.

Losing people who don't agree evidence is required for claims is an imaginary problem. People may be leaving but that is no loss to the community. Science is the only game in town and will win because it works.

[Pooka1]

I wrote that with regard to PT treatments.

For VBS, I do not think this forum deserves to have those posts because despite being scientifically based, the VBS posts were attacked on emotional and ignorant grounds and that was countenanced. I had just joined the forum around that time and I have some recollections of the players involved in all that. The criticism was entirely emotional and devoid of reason in my opinion.

VBT has not been similarly attacked and I would do everything I can to prevent that. But I understand why the people involved with VBS early on took the posts to other fora and agree with their decision. This forum shouldn't attempt to duplicate those efforts but people should be pointed there.

I have on many many occasions suggested people leave this forum and join the UK group if they just want support and aren't interested in evidence/science. Scoliosis is a serious subject and everyone should be trying to present and discuss the best evidence available at all times. This forum values evidence and science. If it didn't I wouldn't be here. Others value support and that is great. Everyone should find their most comfortable place.

I will point people towards the other fora for VBS/VBT because that is where the expertise landed for known reasons.

[Pooka1]

I don't remember if Joe O'Brien and I had any discussions about the purpose of these forums. I suspect that we didn't, and probably had different ideas of what they should be. As moderator of the MIT listserv (which was really the predecessor of these forums, I can tell you that the purpose was to get accurate information to the masses. I'm guessing that Joe probably thought that the purpose was more to connect patients. I think it can be both. -- Linda Racine, 2013

Accurate information. That implies people can recognize accurate information when they encounter it. There is ample evidence they cannot. We had a member tout a particular study dozens and dozens of times that was pretty obviously flawed (garbage in - garbage out) and was finally shown to be so. But that was posted one bazillion times helping nobody.

In the US, science education has been continually undermined and attacked. The chickens are coming home to roost. I hope folks are happy.

[AMom]

To clarify whether or not VBT has been done on adults - yes, it has (at least once to my knowledge) been performed on a 50 year old woman. Her slightly older sister is now scheduled for VBT as well (patient #1 joked that she will no longer be the oldest VBT patient!); the procedure was performed almost a year ago by Drs. Antonacci and his team at the Institute for Spine and Scoliosis in NYC.

With regard to skeletally mature patients (meaning late teens and early 20's), I will separate them from "adult" patients for purposes of this post. The team at the Institute has performed VBT on several skeletally mature young adults, as has Dr. Braun at Dartmouth Hitchcock in NH; and on very select patients Dr. Hoernschmeyer at Missouri Women's and Children's Hospital. In addition, we just learned recently from Dr. Baron Lonner, also in NYC, that he is performing VBT on skeletally mature patients as well.

There is also one surgeon in the UK (Dr. Bernard) who will consider VBT on skeletally mature patients, and he has performed at least a few such surgeries.

I am sure we will hear of more surgeons following suit at some point but that's what we know at this time.

If anyone would like to learn more, we have a very comprehensive body of information regarding VBT on the FB group below, including a list of surgeons in the U.S. and around the world who are performing VBT. There are also over 1,100 members, many of whom have VBT experience that they are willing and happy to share with others, to try to help and support them.

https://www.facebook.com/groups/ScoliosisTethering/

I wonder why orthos would be hesitant to use a tether on skeletally mature patients. (wondering, not criticizing) A mature spine can be straightened as much as is safe (similar to using rods). They would not have to estimate how much growth remains so they wouldn't have to worry about over-correction. If it weren't for the fact that some very young kids have large or nonflexible curves, it seems as though it might even be better to wait until they reach a Risser 4 to perform the surgery. Has anyone said why they are hesitant? Maybe it is because they are waiting to see how the spine responds to the surgery over time before they expand the use of the tether.

Oops, I didn't see Mariaf's post. It looks as though the thought process is shifting as more is learned.

[Pooka1]

Many people ARE losing out on information that could help them

You have information on the outcomes of various people who were doing PT. People wanting to know if it is worthwhile to try PT might be interested in those outcomes. They are losing out each and every time a person comes on here trying PT and doesn't report the outcome. There is one person who religiously reports on his child every year to his great credit. We don't see that from the other PT players for some reason.

These are still all anecdote but it is still better than nothing at this point.

People who live in glass houses...

[mariaf]

I wonder why orthos would be hesitant to use a tether on skeletally mature patients. (wondering, not criticizing) A mature spine can be straightened as much as is safe (similar to using rods). They would not have to estimate how much growth remains so they wouldn't have to worry about over-correction. If it weren't for the fact that some very young kids have large or nonflexible curves, it seems as though it might even be better to wait until they reach a Risser 4 to perform the surgery. Has anyone said why they are hesitant? Maybe it is because they are waiting to see how the spine responds to the surgery over time before they expand the use of the tether.

Oops, I didn't see Mariaf's post. It looks as though the thought process is shifting as more is learned.

Hi AMom,

Yes, but you did a great job thinking out loud before you saw my post - you hit it on the head! Most surgeons are waiting to see how the first "test cases" turn out, just as they did with VBT for adolescents. Other reasons (and I am speculating here) might be insurance issues since most insurance companies will look for reasons to deny ANY surgery, and with VBT some carriers are still trying to use the "experimental" tag to avoid payment whenever they can, but the tide IS turning and more insurers are covering VBT in general than even just a few years ago.

You also touched on something very important - timing. The ideal time to perform VBT seems to be when there is some growth left, but not years and years worth, which is one reason why surgeons wait in most cases until around age 10 to perform VBT. You don't want the spine to overcorrect and have to perform a second surgery if you don't have to. On the other hand, in skeletally mature patients or those with very little growth remaining, there is not the potential for as great a correction as in a younger child. Fortunately, those leading the charge with VBT seem to be gaining an even better understanding of when the best time to intervene surgically is, taking other factors into consideration as well.

I also want to add two more surgeons we've become aware of who are now at least considering skeletally mature patients and/or adults - Dr. Jason Bernard in the UK and Dr. Baron Lonner in NYC. I have been corresponding with Dr. Lonner, and am in fact meeting with him in a few weeks. While only Drs. Antonacci/Betz/Cuddihy have so far performed VBT on a mature adult (meaning, say, older than mid 20s), I believe that the surgeons considering skeletally mature adolescents (Drs. Braun, Bernard and Lonner) will start to do so in the not-too-distant future (I will ask Dr. Lonner about this when we meet). I suspect that part of the reason is that adults are just now starting to make inquiries about VBT as the word is spreading that it may be an option for older patients. In fact, there are a few adult members in our Facebook group who are pursuing VBT, one of whom has an appointment with Dr. Lonner next month.

The times they are a changing!

[burdle]

In UK fusion surgery is done for progressing curves. This means that it can be performed on old adults who have curves that progress through gravity. However I am told that it is never done for pain or rather 'just for pain'. This seems to suggest that VBT will never really be an option for us oldies as I would suggest that our main problem in later life is pain.

I cannot see why a surgeon would opt for 'holding' the curve rather than a full fusion on oldies because why would they take the risk?

[mariaf]

I cannot see why a surgeon would opt for 'holding' the curve rather than a full fusion on oldies because why would they take the risk?

Sorry if I was unclear. VBT is not intended to just 'hold' the curve in adults. I believe the one adult patient had her curve reduced by over 50%. I do not have the exact numbers in front of me but for argument's sake, let's say she began with a 60 degree curve. It was reduced to roughly 30 degrees or less.

What I meant was that in an adolescent who is tethered, that 60 degree curve could end up in the single digits.

As for why a surgeon would opt for achieving these results vs. full fusion, there are many reasons and benefits of VBT over full fusion.