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Pooka1
07-19-2016, 07:50 PM
Per a member of this forum, a few adults have been tethered.

http://www.scoliosis.org/forum/showthread.php?15641-SpineCor-and-Insurance&p=166771#post166771

Adults who need fusion and want to investigate this, should go to this site:

http://www.spineandscoliosis.com/procedures/scoliosis-treatment/vertebral-body-tethering-vbt-a-less-invasive-scoliosis-treatment/

flerc
07-19-2016, 09:28 PM
Yes, there are some requirements. Flexibility is a necessary condition.

3sisters
07-20-2016, 05:25 AM
Per a member of this forum, a few adults have been tethered.

http://www.scoliosis.org/forum/showthread.php?15641-SpineCor-and-Insurance&p=166771#post166771

Adults who need fusion and want to investigate this, should go to this site:

http://www.spineandscoliosis.com/procedures/scoliosis-treatment/vertebral-body-tethering-vbt-a-less-invasive-scoliosis-treatment/

I am happy to see that the most mature patient's xrays have made it into the homepage of the above link; she feels great, too! There are three VBT forums that I know of; one is UK oriented (there are at least two surgeons performing VBT in the UK, and patients there are thrilled not to travel as far anymore) and two US based. All have international members.

Anyone interested in joining a VBT/VBS specific forum for themselves or their child can find them on a fb search or email me at felvuse@hotmail.com

Pooka1
07-20-2016, 06:25 AM
Since VBT/VBS is science-based, all those people can post here on NSF to reach more people.

These people generally have before and after radiographs, something that is often notably missing for conservative treatments. It's this kind of evidence that can inform people.

flerc
07-20-2016, 09:17 AM
People thinking in surgery must to be aware that fusion is an over one century old technique, and that the new technologies used in that old kind of scoliosis surgery, doesn't change nothing that fact.
Vbt on the other hand, really seems to be the kind of surgery according to the century we live in!.

3sisters
07-20-2016, 07:46 PM
Since VBT/VBS is science-based, all those people can post here on NSF to reach more people.

These people generally have before and after radiographs, something that is often notably missing for conservative treatments. It's this kind of evidence that can inform people.

Hi Pooka, these forums are closed in their privacy and confidentiality, but open in that more more members may join. Part of the reason there is a VBT forum, (and it was in a forum format like this years ago (with more emphasis on VBS back then) but has transitioned to facebook forum,) is to keep the topic a very narrow focus. It is all VBS/ VBT/ hybrid oriented. It covers hospital packing lists, questions to ask, lists of files to include surgeons performing it, post op, insurance, pain issues and medications, patient meetups, but ONLY in this limited scope of VBS/ VBT. It is here to fill a void that was not covered in other forums. We are tolerant of other people's opinions and feelings, and veteran VBT families help 'newbies' learn the ropes and how to attain this amazing surgery. You know if MariaF has a hand in it, it is good.

I don't foresee it moving to NSF; it was in this type of forum before, but actually moved to fb which seems to be the wave of social media nowadays.

Pooka1
07-20-2016, 08:09 PM
Hi Pooka, these forums are closed in their privacy and confidentiality, but open in that more more members may join. Part of the reason there is a VBT forum, (and it was in a forum format like this years ago (with more emphasis on VBS back then) but has transitioned to facebook forum,) is to keep the topic a very narrow focus. It is all VBS/ VBT/ hybrid oriented. It covers hospital packing lists, questions to ask, lists of files to include surgeons performing it, post op, insurance, pain issues and medications, patient meetups, but ONLY in this limited scope of VBS/ VBT. It is here to fill a void that was not covered in other forums. We are tolerant of other people's opinions and feelings, and veteran VBT families help 'newbies' learn the ropes and how to attain this amazing surgery. You know if MariaF has a hand in it, it is good.

I don't foresee it moving to NSF; it was in this type of forum before, but actually moved to fb which seems to be the wave of social media nowadays.

Yes I understand that. For some reason, VBS posts were discouraged on this forum. This was before I joined. With things like that going on, you need to have a separate place to post.

The driving away of the VBS information from this forum appeared to be entirely self-inflicted and I remain perplexed about it. That is a true loss. It was never in the same category as come conservative treatments which never seem to attract people willing to post before and after radiographs. That's really the minimum for non-fusion treatments... before and after rads yet many conservative modalities can't even do that. Driving those people away is doing everyone a favor in my opinion because they never provide any evidence of efficacy.

flerc
07-20-2016, 09:14 PM
I don't foresee it moving to NSF; it was in this type of forum before, but actually moved to fb which seems to be the wave of social media nowadays.

No please, it is a perfect group, nothing to do with this forum. Perfect rules, in debates is only allowed to talk about ideas, not about persons, something not conceivable here, non attacks to nobody, they don't try to convince about nothing, they has all the information that may be needed, power is not used to intimidate.. it not needs any kind of change and mainly, it should to remains where it is.

flerc
07-26-2016, 06:46 PM
People thinking in surgery must to be aware that fusion is an over one century old technique, and that the new technologies used in that old kind of scoliosis surgery, doesn't change nothing that fact.
Vbt on the other hand, really seems to be the kind of surgery according to the century we live in!.

Surgeons doing fusion should to be forced to inform patients about Vbt. Many people are having fusion because nobody told them about Vbt, it's no fair!

1998golfer
07-26-2016, 07:32 PM
Surgeons doing fusion should to be forced to inform patients about Vbt. Many people are having fusion because nobody told them about Vbt, it's no fair!

Yep.. I just had fusion surgery 2 weeks ago, I wish I knew about this before then.

LindaRacine
07-26-2016, 08:12 PM
Yes I understand that. For some reason, VBS posts were discouraged on this forum. This was before I joined.

It was?

--Linda

LindaRacine
07-26-2016, 08:15 PM
Yep.. I just had fusion surgery 2 weeks ago, I wish I knew about this before then.

As far as anyone knows, this surgery has been performed on one adult. It's nowhere near ready for primetime.

--Linda

Pooka1
07-26-2016, 08:32 PM
It was?

--Linda

Apparently. That is the reason a separate group was created for VBS and now VBT.

Pooka1
07-26-2016, 09:31 PM
As far as anyone knows, this surgery has been performed on one adult. It's nowhere near ready for primetime.

--Linda

I have high hopes for tethering adults in case my daughters ever are faced with having to extend their fusions. I hope it pans out.

It seems to me that bending to either side would be exactly as restrictive as a fusion because the tether is on the side. But bending forward and back would be possible though maybe with some limited ROM depending on how tight the tether is.

I don't know but it just seems impossible that tethering could preserve close to all the bending ROM front to back but I of course don't know. If it is super tight I suspect the ROM is essentially the same as for fusion.

Maria would know about VBS but I think the situation there is similar to tethering... similar ROM bending side to side as fusion and possibly more ROM front to back than a fusion. With every vertebra stapled to the next, I am not understanding how that allows more ROM than a fusion in the stapled area.

Maybe both VBS and VBT are better at preserving discs below the treated area for some reason. That would be a good reason to staple and tether if true even if the ROM is ultimately similar to a fusion.

1998golfer
07-26-2016, 09:52 PM
As far as anyone knows, this surgery has been performed on one adult. It's nowhere near ready for primetime.

--Linda

Well, being 18 and pretty flexible, maybe it could've been possible. Who knows, but this is sure exciting for the future

leahdragonfly
07-26-2016, 10:42 PM
It was?

--Linda

Linda, you may recall there were some horrendously nasty posts and arguments about VBS (stapling) in 2008. There were one or two posters in particular who are no longer on this forum who were frothing at the mouth against VBS. Really nasty stuff with multiple threads locked or removed. I was pretty new to the forum then and nearly quit because of it. Maybe you blocked out the bad memories.

Pooka1
07-26-2016, 11:20 PM
Linda, you may recall there were some horrendously nasty posts and arguments about VBS (stapling) in 2008. There were one or two posters in particular who are no longer on this forum who were frothing at the mouth against VBS. Really nasty stuff with multiple threads locked or removed. I was pretty new to the forum then and nearly quit because of it. Maybe you blocked out the bad memories.

I think I know one participant in that melee. I joined early in 2008 but don't recall the VBS posts too well. That participant and scientific thinking were not acquainted. :-)

I wonder how that participant's daughter did with the Spincor brace. I hope she avoided surgery.

LindaRacine
07-27-2016, 12:39 AM
Maybe you blocked out the bad memories.

Ha Ha... I've had to do that a lot! :-)

LindaRacine
07-27-2016, 12:42 AM
I have high hopes for tethering adults in case my daughters ever are faced with having to extend their fusions. I hope it pans out.

It seems to me that bending to either side would be exactly as restrictive as a fusion because the tether is on the side. But bending forward and back would be possible though maybe with some limited ROM depending on how tight the tether is.

I don't know but it just seems impossible that tethering could preserve close to all the bending ROM front to back but I of course don't know. If it is super tight I suspect the ROM is essentially the same as for fusion.

Maria would know about VBS but I think the situation there is similar to tethering... similar ROM bending side to side as fusion and possibly more ROM front to back than a fusion. With every vertebra stapled to the next, I am not understanding how that allows more ROM than a fusion in the stapled area.

Maybe both VBS and VBT are better at preserving discs below the treated area for some reason. That would be a good reason to staple and tether if true even if the ROM is ultimately similar to a fusion.
I hope it works as well, but I don't think I'd sign up to be a guinea pig.

With that said, I bet VBT doesn't have much effect on flexibility in either plane.

--Linda

Pooka1
07-27-2016, 07:15 AM
I hope it works as well, but I don't think I'd sign up to be a guinea pig.

With that said, I bet VBT doesn't have much effect on flexibility in either plane.

--Linda

Well, consider a tight cord on say the right side of a typical dextro T curve. If it is doing any correction it is going to be damn tight at all times since the curve will be trying to pull it. So bending to the left is going to be impossible. Depending on how stiff it is, bending to the right (unbending the curve) might be impossible also. It would have to buckle in-between vertebra to allow bending to the right. It might... I don't know how stiff the tether is.

Bending front and back again would be limited by how stiff the tether is.. If it is tacked down to each vertebra and very tight, I don't see ow that will allow bending forward and back through the tethered area.

I am wondering if the actual medical reasons for stapling and tethering are to achieve correction with a much smaller operation and to not need bone for fusion. Do surgeons even claim a much larger ROM for either VBS or VBT compared to fusion?

Pooka1
07-27-2016, 07:29 AM
Look at this site...

http://www.spineandscoliosis.com/procedures/scoliosis-treatment/vertebral-body-tethering-vbt-a-less-invasive-scoliosis-treatment/

Look at the cartoon of the tether about half way down (blue background). Think about how much play you can imagine in that tether in any plane without crushing discs unevenly. It appears to me there is virtually no play in any plane because it looks tight.

They call it flexible fusion but here is them explaining that term... I fixed TWO typos on their page ... the continued moving and bending is achieved with the minimally invasive approach to the surgery, not to preserved ROM with tethering over fusion. The ENTIRE paragraph is about the minimally invasive approach as the advantage of VBT over fusion. Now I think that will be somewhat misleading to most patients and I am not exactly following along because once the muscles heal in an open fusion, there is an increase in the ability to use the back. They appear to just be claiming a shorter recovery time as the reason for VBT. If you look at the cartoon, I can see why they are not claiming more ROM than a fusion.


What are the Advantages of Flexible Anterior Fusion approach -Vertebral Body Tethering (VBT)?

Typically surgery that is less invasive will carry less risk for the patient for several reasons. This is the case using our anterior fusion approach above. The spine can continue to move and bend, so the patient may experience less discomfort and more freedom of movement. We achieve this by using a muscle sparing approach so unlike traditional invasive back surgery, no back muscles are cut, and there is minimal disruption and much faster healing. Additionally blood loss is very low using these less invasive techniques. Recovery therefore averages about 4 weeks, with return to unrestricted activity at 6 weeks in most cases.

Pooka1
07-27-2016, 08:18 AM
Newton et al. induced a kyphotic scoliosis in calves (ugh) with a tether and measured ROM. He said the side to side motion was curtailed as I surmised above but the flexion-extension which I assume is forward and backward ROM was pretty good. The discs were significantly wedged but that is due to the tether creating the scoliosis. I think the tether would UN-wedge the discs in correcting a scoliosis.

I would like to see flexion-extension ROM measured on radiograph with tethering and comparing it to fusion.

http://www.ncbi.nlm.nih.gov/pubmed/11923660

I think when they say "motion sparing" it refers to when they take the tether OFF as in the case of a growing child. Are they planning to remove the tether on all these patients? Every picture I have seen of the tethers appears to me to limit ROM side to side and appears to crush the front of the disc if bending forward.

In the case of an adult I don't think they intend to ever remove the tether. I hope some flexion-extension is preserved even with the tether in case my girls need their fusion extended to their lumbar and are candidates for tethering.

nybw51mr42
07-27-2016, 10:04 AM
I'm in NY so I contacted them. Quite curious what they will say and if I qualify, etc. I'm highly skeptical but there is little opportunity cost in at least vetting this a bit further.

Waiting to hear back from them (filled out the online form). I will update the board once I do.

LindaRacine
07-27-2016, 10:55 PM
Well, consider a tight cord on say the right side of a typical dextro T curve. If it is doing any correction it is going to be damn tight at all times since the curve will be trying to pull it. So bending to the left is going to be impossible. Depending on how stiff it is, bending to the right (unbending the curve) might be impossible also. It would have to buckle in-between vertebra to allow bending to the right. It might... I don't know how stiff the tether is.

Bending front and back again would be limited by how stiff the tether is.. If it is tacked down to each vertebra and very tight, I don't see ow that will allow bending forward and back through the tethered area.

I am wondering if the actual medical reasons for stapling and tethering are to achieve correction with a much smaller operation and to not need bone for fusion. Do surgeons even claim a much larger ROM for either VBS or VBT compared to fusion?

Sorry, I'm not following. 100% of the bending will come from the discs, which are not affected by the implants, which only go into the vertebral bodies.

Pooka1
07-27-2016, 11:06 PM
Sorry, I'm not following. 100% of the bending will come from the discs, which are not affected by the implants, which only go into the vertebral bodies.

The distance between the vertebrae that are tethered is held constant by the tether. The discs are in those distances. If the vertebra are held in the same position with respect to each other then the discs are also.

3sisters
08-04-2016, 09:04 PM
As far as anyone knows, this surgery has been performed on one adult. It's nowhere near ready for primetime.

--Linda

Linda, not to discourage those who had recent fusion, but many teens and young adults have been tethered. They do not post here; many are happily found on the link MariaF shared, though.

3sisters
08-04-2016, 09:16 PM
The distance between the vertebrae that are tethered is held constant by the tether. The discs are in those distances. If the vertebra are held in the same position with respect to each other then the discs are also.

To my understanding, from my daughter's surgeons (she had VBT), there is a slight resistance if the patient tried to bend towards the side in such a way that would make the tethered portion of the curve increase in size. However, in the thoracic area, there is not really significant bending anyway. Rotating the spine seems unaffected. There are some lumbar tethered patients who engage in high level gymnastics which would not be possible post fusion. If there is some restriction to their bending, it must be minimal.

For your daughters, surely it is good to know that a lumbar tether under thoracic fusion is possible; some patients have had this when for some reason the thoracic curve cannot be tethered (such as a curve that goes higher up the spine.)

flerc
08-12-2016, 11:54 PM
Linda, not to discourage those who had recent fusion, but many teens and young adults have been tethered. They do not post here; many are happily found on the link MariaF shared, though.

Sure you are right Emily, it's a great group for people thinking in Vbt, even for people who had fusion. I have a woman friend whose daughter after fusion went to worse in lumbar zone and that group helped her to know that Vbt could be possible for her.
Fortunately there are many good and really big scoliosis groups, also for non surgical options. I think this forum is still the biggest one but only for fusion.. certainly is almost a fusion forum only, people thinking in other options is sure in other sites.

flerc
08-13-2016, 12:10 AM
To my understanding, from my daughter's surgeons (she had VBT), there is a slight resistance if the patient tried to bend towards the side in such a way that would make the tethered portion of the curve increase in size. However, in the thoracic area, there is not really significant bending anyway. Rotating the spine seems unaffected. There are some lumbar tethered patients who engage in high level gymnastics which would not be possible post fusion. If there is some restriction to their bending, it must be minimal.


I always thought that the tether should to be something elastic, but I asked it and they said me that it's not. I suppose that if it could be necessary for some cases, surely in a future they will consider that possibility.

nybw51mr42
08-15-2016, 03:19 AM
I'm in NY so I contacted them. Quite curious what they will say and if I qualify, etc. I'm highly skeptical but there is little opportunity cost in at least vetting this a bit further.

Waiting to hear back from them (filled out the online form). I will update the board once I do.

It took about 10 days but I finally got a call back. Have an appointment scheduled for next month as of now. I find it odd they are not in-network with any insurance and basically have to pay yourself. Not sure if I will go yet or not, but part of me says even if it is far-fetched on the small chance it is helpful/applicable it would be worth the $400 office visit. If I do go, I'll report back to here.

Pooka1
08-15-2016, 06:38 AM
Thanks for reporting back.

Did they say why it took so long?

I am speculating they are taking/doing the growing kids first because there is more of a time window there.

I would also like to know the total number of adults that this group has tethered given your experience.

nybw51mr42
08-15-2016, 12:04 PM
Thanks for reporting back.

Did they say why it took so long?

I am speculating they are taking/doing the growing kids first because there is more of a time window there.

I would also like to know the total number of adults that this group has tethered given your experience.

They did not and I didn't ask. Maybe the online system takes longer to process than calling in, though when I tried calling in I got the machine every time.

On your last question, I personally have no idea. I found out about this through this forum in the first place. If I end up going I'll definitely ask them however.

burdle
08-16-2016, 09:00 AM
I think it would help if instead of finding out how many adults, we used the term 'people skeletally mature' and then further classify with say for example, aged over 20 or 30 etc.

Someone with an 18th birthday today would be classed as an adult and I think this just skews the figures

Pooka1
08-16-2016, 10:00 AM
I think it would help if instead of finding out how many adults, we used the term 'people skeletally mature' and then further classify with say for example, aged over 20 or 30 etc.

Someone with an 18th birthday today would be classed as an adult and I think this just skews the figures

Good point. Maybe 3sisters can venture a guess as to how many skeletally mature people have been tethered. Given the experience of a forum member, I have to wonder if they are prioritizing kids at that facility. I think they should prioritize kids so no complaints from me.

Also, how many other surgeons besides Betz et al. are tethering adults? Is it only that group?

burdle
08-16-2016, 10:21 AM
My understanding is that it can only be done on a flexible progressive curve. This is why I keep saying that I don't think it is an option for skeletally mature adults over say about 25. People like Flerc keep telling me it is and I would be interested for me. I can see the xrays of a 50 year old female on the website but no details of how representative she is of the numbers asking for the technique.

Scolismart keep pushing it claiming that their chiro therapy is a necessary pre- treatment to keep the spine as flexible as possible. And then they show pictures of Dr Betz who performs the VBT.

Proponents of the technique keep saying that it is suitable for adults but I cannot find anyone who has had it done who falls into my category.

The Facebook group is for parents with children who have VBT?

Pooka1
08-16-2016, 11:03 AM
I started a new thread asking for specifics.

If there is only one group who doesn't take insurance and who might be prioritizing children, I don't think there can be many skeletally mature people who have been tethered to date but who knows.

Pooka1
08-16-2016, 07:23 PM
This interview with Dr. Betz is from March 2015.

https://posna.org/Blogs/The-Resident-Review/March-2015/Emerging-Technology-An-Interview-with-Randal-Betz

He talks about tethered people a bit older and a more skeletally mature than previously but he is not talking about tethering adults as far as I can tell.

A requirement seems to be able to bend the curve out to <30*. If an adult can do that then maybe they would be considered. My kids don't have structural lumbar curves but if they ever decompensate below their fusion, I am hoping they retain the ability to bend out their lumbars well below 30*.

I don't know who tethered that 50 year old woman but I am guessing it wasn't Dr. Betz.

I am keeping an eye on this tethering for my one daughter who had a false double and was fused leaving some curve. The other daughter is pretty straight because she had a different kind of thoracic curve that could be hyper-corrected which drove the lumbar very straight.

Pooka1
08-16-2016, 07:32 PM
Linda, not to discourage those who had recent fusion, but many teens and young adults have been tethered. They do not post here; many are happily found on the link MariaF shared, though.

How many of the young adults who were tethered were skeletally mature?

Is there only one known case of tethering a skeletally mature person?

mariaf
08-17-2016, 09:23 AM
It was?

--Linda

Yes, I can confirm Pooka's claim that VBS posts were discouraged here. It became exhausting trying to explain the same things over and over again - responding to claims that surgeons were experimenting on children, etc. (Bad flashback - LOL)