Tethering in skeletally mature people - data call

[Pooka1]

Can someone who has some sense of this please tell us:

1. How many surgical groups are tethering skeletally mature people?

2. (About) How many skeletally mature people have been tethered?

3. How many skeletally mature people only have tethering and how many have tethering above to below a fusion?

4. Does any insurance cover tethering in skeletally mature people?

Thanks in advance.

[mariaf]

Sharon,

I covered most of these questions just now on another thread here. As for insurance, it depends on the plan, not really on whether the patient is skeletally mature or not. Some carriers still fight covering VBT on anyone; while others have approved VBT for patients of all ages.

Hope this helps.

I help run the VBT Facebook group and it's pretty time consuming so unfortunately, I don't have time to pop in here too often which is why I suggest that anyone interested in learning more about VBT join the FB group (link is below in my signature).

Best,

Maria

[Pooka1]

Maria,

Thanks so much for all the information in your recent posts.

If my daughters are ever faced with extending their fusion, I will join that Facebook group. Thanks to you and any others for managing that and the VBS group.

I don't want to duplicate your work in the other groups but I think basic info including pointing to the other groups belongs on this forum for completeness sake. Basic info would include the range of patient types, any known restrictions, and and outcomes. And luckily my posts on tethering aren't getting push back from any quarter like the VBS posts did. That was shameful because they went after a science-based treatment (VBS) yet a plethora of non-science based treatments got a pass or tried to anyway. Lol.

Last you made a great point about how quickly info goes stale in a new medical field. In re that, did you see anything in Dr. Betz's interview that I posted that you know is incorrect now?

Thanks again.
Sharon

[mariaf]

If you mean the POSNA interview, I wouldn't say incorrect, just not current as far as the things we already touched on (i.e., where he states they tether only skeletally immature patients, etc.). And while they still like curves to bend below 30, they have done many cases above the 65 degree threshold. Please note that in 'some' of those cases, they utilized the hybrid procedure that he mentions (fusion of the thoracic curves, while tethering the lumbar curve) - the great thing about hybrid surgeries is that usually these patients would otherwise need a very long fusion, but by fusing only the thoracic curve, a good deal of flexibility is maintained. As Dr. Betz states, these patients are generally not good candidates for selective thoracic fusions.

[Pooka1]

Thanks. I should have said not current instead of incorrect. I was using incorrect to mean not current. Something that has changed is (now) incorrect even though it was correct when written. :-)

[mariaf]

That is correct, no pun intended!! :-)

[burdle]

Sharon,

I covered most of these questions just now on another thread here. As for insurance, it depends on the plan, not really on whether the patient is skeletally mature or not. Some carriers still fight covering VBT on anyone; while others have approved VBT for patients of all ages.

Hope this helps.

I help run the VBT Facebook group and it's pretty time consuming so unfortunately, I don't have time to pop in here too often which is why I suggest that anyone interested in learning more about VBT join the FB group (link is below in my signature).

Best,

Maria

I am pending on the Facebook group but it does say it is intended for parents of children with VBT?


I am very interested in the Hybrid approach - There seems to be a difference of opinion with my scoliosis- one consult said my cervical curve would probably bend out if I had a fusion. I was wondering whether to suggest a fusion for thoracic, tethering for lumbar and hope for the best for the cervical.

I am surprised that Dr. Betz is not more forthcoming regarding how treatment is progressing. the interview in the link clearly skirts round the skeletally mature adult issue - referring to 're-modelling advances'. If there has been a change why is it not publicised?

[mariaf]

I am pending on the Facebook group but it does say it is intended for parents of children with VBT?


I am very interested in the Hybrid approach - There seems to be a difference of opinion with my scoliosis- one consult said my cervical curve would probably bend out if I had a fusion. I was wondering whether to suggest a fusion for thoracic, tethering for lumbar and hope for the best for the cervical.

I am surprised that Dr. Betz is not more forthcoming regarding how treatment is progressing. the interview in the link clearly skirts round the skeletally mature adult issue - referring to 're-modelling advances'. If there has been a change why is it not publicised?

Hi Burdle,

If you send me a private message letting me know the name you registered with, as an admin, I can approve your membership. Sorry if the intro was misleading - the fact is that in November when the site was started, it was basically just children/teenagers having VBT. Today, we have quite a few adult scoliosis patients on board as well. As I said, it's very difficult to keep up with advances in the field but that's a good thing!

As for Dr. Betz's comments surrounding the skeletally mature adult issue - again, they may have just been seeing the effects of remodeling at the time of the interview - they are still learning and observing today, so it was probably not prudent at the time for him to speculate further. They (meaning the entire community, not just Betz) will be publishing more and more data on VBT as they go along. I believe I heard somewhere that a given number of time must pass before this sort of thing can be published but I'm not entirely sure. I do know that the VBS surgeons as a whole (Antonacci/Betz, Braun, Diab, Hoernschmeyer, Samdani, etc.) are very open and willing to answer patients' questions honestly. They are a special breed for sure.

[3sisters]

intro modified

" Sorry if the intro was misleading - the fact is that in November when the site was started, it was basically just children/teenagers having VBT. Today, we have quite a few adult scoliosis patients on board as well. As I said, it's very difficult to keep up with advances in the field but that's a good thing!"

Burdle, I just modified the pinned intro to the group as well as the forum description; we welcome adults seeking non-fusion surgery, and don't want to deter anyone. Thanks for pointing that out- the times ARE changing quickly in the VBT world.

[Tina_R]

Isn't it just a handful of doctors so far who perform tethering on people past adolescence? Literally you could count them on both hands. That's the impression I got from google. What a wait there must be for treatment. And travel involved for almost every patient.

[Pooka1]

Isn't it just a handful of doctors so far who perform tethering on people past adolescence? Literally you could count them on both hands. That's the impression I got from google. What a wait there must be for treatment. And travel involved for almost every patient.

I think that is correct but you should join that facebook group to get the most recent facts. They would know it. At the time of this thread only one adult was tethered and I think another was queued up. I would like to see how long those tethers last in an adult and what happens when they break which is inevitable as I understand it and I may not.

I would also like to know how these three surgeons have time to tether adults when they are probably overbooked with kids.

[Tina_R]

I think that is correct but you should join that facebook group to get the most recent facts. They would know it. At the time of this thread only one adult was tethered and I think another was queued up. I would like to see how long those tethers last in an adult and what happens when they break which is inevitable as I understand it and I may not.

I would also like to know how these three surgeons have time to tether adults when they are probably overbooked with kids.

It's not really a seasoned treatment for adults, is it?
Thanks for the facebook recommendation.

[Pooka1]

It's not really a seasoned treatment for adults, is it?
Thanks for the facebook recommendation.

It is the exact opposite of seasoned. There may still only be a literal handful of adults that are tethered. The FB group would be able to tell you nearly exactly I suspect.

[burdle]

It is the exact opposite of seasoned. There may still only be a literal handful of adults that are tethered. The FB group would be able to tell you nearly exactly I suspect.

There are quite a few now who have been tethered. It is more 'skeltally mature' rather than 'adults' that is the consideration. The surgery is called ASC although strictly speaking the surgery done on immature spines is also ASC but is commonly referred to amongst patients at least as VBT. Both surgeries are done Anteriorly.

The difference is that with ASC the correction is done in sugery and the tether holds it whereas for VBT it is further growth of spine that enables a correction.

The FDA have approved the instumentation for VBT on paediatric patients but not so far on the skeletally mature. Quite a lot of patients go to Europe if they are mature.

[Pooka1]

There are quite a few now who have been tethered. It is more 'skeltally mature' rather than 'adults' that is the consideration. The surgery is called ASC although strictly speaking the surgery done on immature spines is also ASC but is commonly referred to amongst patients at least as VBT. Both surgeries are done Anteriorly.

The difference is that with ASC the correction is done in sugery and the tether holds it whereas for VBT it is further growth of spine that enables a correction.

The FDA have approved the instumentation for VBT on paediatric patients but not so far on the skeletally mature. Quite a lot of patients go to Europe if they are mature.

Thanks for this, Burdle. Can you post the FB page for people who want more information? I would have to search for it.

When you say quite a few, how many do you mean?

How many mature people have gone to Europe for tethering?

When you say the correction is done during surgery, do you mean osteotomies (cutting each vertebra)? If not then what exactly are they doing to correct the spine on the table?