Dr's appointment today.

[Kay1974]

Ed, i do plan on taking my time not rushing into this but also not putting it off too long. This journey has become almost a job to try and learn and figure out the best way I need to go. It hasn't been easy, lots of tears and doubts. I have managed to stay focused though with daily exercise, deep breathing and eating right. I don't have time to lose it if you know what I mean. I am planning on heading back in June to have all the tests Dr. Lenke wants to review my case in more detail and have a better look at that L4-L5 area. I'll try not to freeze when he's in the room and ask him everything I need to. I did call his nurse and ask his thoughts on VBT and I did not get that. He only does posterior fusion and from what he knows this is an experimental procedure done on juveniles and adolescents and not indicated on adults. So still not sure his thoughts on me in particular and my spine.

Dr. Lenke did also indicate I would have osteotomys done from TII- L2. My fusion would be 6 levels, T10-L3. Is this common to have osteotomys with fusion? I wonder how tethering would work with not doing this? Again so many questions I just don't understand. I have read on the other forum that some of the tether Dr's do disk release. I have been in contact with others who have had this. It seems to work for those who have had it. I would think based off what I've read there have been several hundred cases done.

Sharon, I am planning on asking about the Sagital plane and any other important questions I can compile.

Linda, can you please sende the link on my type of fusion outcome? Also, when you had your second fusion, how do they fuse to what you've already had done? I know this will be my case if I am fused and I'd like to understand a little more how a revision works with outcomes.

[Pooka1]

Sorry, I don't really know. I've really stopped following the issues surrounding scoliosis in non-adults. I can tell you that there have been very few podium presentations at iMAST and SRS meetings. Those are the big meetings for deformity professionals, so that's where we'd expect to see presentations on the subject. The 2016 SRS meeting had only 2 presentations on tethering, and one of the presentations had a disappointing conclusion:

"Conclusion
Despite initial reductions in Cobb angle, the 2-4 year postop
assessment of ASGT with current technology has resulted in
less than ideal outcomes for ~40%, partially explained by tether
breakage in ~50%. The tether clearly affects spinal growth, and
avoided spinal fusion in 13 of 17 patients at current follow-up.
Understanding the variables leading to success/failure will be
critical in advancing a reliable definitive non-fusion treatment for
progressive scoliosis."

Thanks for posting that Linda. I find it confusing.

So 76% (13 of 17) of patients avoided fusion yet ~40% had a less than ideal outcome??? So a few of the 13 had some issue that was less than ideal although they avoided fusion. I wonder what those issues were and if they stack up with avoiding fusion.

So ~50% of the tethers broke but still we have 76% of the patients avoided fusion. Given the fusion avoidance rate, so what that some tethers broke?? I assume they needed another minimally invasive procedure to put another tether in. I am not minimizing surgery here but I am guessing a tether replacement is less trauma than an initial placement and far less than a fusion.

Someone correct me if I'm wrong but I think 76% fusion avoidance is better than staples and we are just at the beginning here. Some Achilles Heel may present at some point like in H rods but so far it's looking pretty good in my opinion.

I know I don't know what I'm talking about. This is just spitting in the wind.

[Pooka1]

Dr. Lenke did also indicate I would have osteotomys done from TII- L2. My fusion would be 6 levels, T10-L3. Is this common to have osteotomys with fusion? I wonder how tethering would work with not doing this? Again so many questions I just don't understand. I have read on the other forum that some of the tether Dr's do disk release. I have been in contact with others who have had this. It seems to work for those who have had it. I would think based off what I've read there have been several hundred cases done.

Linda may know about how common osteotomies are with mature adult fusions. Other than in congenital scoliosis, I doubt many are done in kids.

Lonner may do osteotomies with the tethering. Did he say he wouldn't? Maybe you have to fuse if you do osteotomies and tethering is then not an option. Who knows.

So some patients have had disc release with tethering? Young patients? Are they congenital cases as opposed to idiopathic?

What have you read to indicate there are several hundred cases. I read a recent web site that indicated about 200 or so but maybe it is more by now. I don't think it can be much more given the lack of podium presentations on it at the meetings as Linda mentioned. Stapling had a bigger roll out if I recall correctly and I probably don't... this is not my field and I don't keep up with this literature.

When the FB people come here they tend to be vague on numbers of patients. They will talk about tethered mature adults (plural) but it is really just one person as far as I know.

Sharon, I am planning on asking about the Sagital plane and any other important questions I can compile.

I will be very interested in how Lonner handles that question. And whether he will do any osteotomies with the tethering.

[LindaRacine]

Linda, can you please sende the link on my type of fusion outcome? Also, when you had your second fusion, how do they fuse to what you've already had done? I know this will be my case if I am fused and I'd like to understand a little more how a revision works with outcomes.

Hi Kay...

There are hundreds of papers on the outcome of fusions for scoliosis. You can do a search HERE.

If a fusion is solid, they don't refuse it unless they need to realign the spine at those levels. In that case, osteotomies are done, and the levels are fused in the new configuration. For example, in the images below, you can see from the xray on the left, that the patient is significantly pitched forward. Using a pedicle subtraction osteotomy technique (shown in the drawings on the left), they were able to get the patient standing up straight again. In that example, they would have cut through a prior fusion, closed the osteotomy by pulling the 2 ends of the cut vertebrae, and refusing.

https://www.srs.org/images/patients-..._osteotomy.jpg


--Linda

[Kay1974]

Sharon,
I believe you mentioned something of a concern with tethering and it causing hypo kyphosis? After seeing my Scroth PT today she said most of her scoliosis patients have a little more of that in the thiracic back and of course with my weird rt lumbar curve, I am a little opposite of that and have hyper kyphosis and am also hyper lordosis.

I'll try and post pictures later of my side views to show.

[Pooka1]

I would not say it is a concern. It is a question I have that can hopefully be answered by Lonner. If tethers hypokyphose then that would be good if you are starting with hyperkyphosis and lordosis presumably. We don't know if any of this is right until you ask Lonner.

[Kay1974]

Yes, hopefully he can answer my questions if I am someone he'd consider after the DEXA scan.

[titaniumed]

The 2016 SRS meeting had only 2 presentations on tethering, and one of the presentations had a disappointing conclusion:

"Conclusion
Despite initial reductions in Cobb angle, the 2-4 year postop
assessment of ASGT with current technology has resulted in
less than ideal outcomes for ~40%, partially explained by tether
breakage in ~50%. The tether clearly affects spinal growth, and
avoided spinal fusion in 13 of 17 patients at current follow-up.
Understanding the variables leading to success/failure will be
critical in advancing a reliable definitive non-fusion treatment for
progressive scoliosis."

Damn....

Less than ideal outcomes and tether breakage in 50%

I’m sorry, but this is not exactly a glowing report......and makes it hard to justify acceptance among surgeons.....(smug face)

This also makes for a difficult patient surgical decision....If I knew the tether was going to break in a few years, I don’t think I could or want to submit.

We should have a vote on it from all the post surgical members here. “Is mobility worth more surgery?” This is also an age related question and should probably be grouped by age.

Can you endure more anesthesia?

Ed

[Pooka1]

Ed, I can't answer for my daughters but I would bet my bank account they would go for tethering their unfused lumbar should they ever be faced with having to extended their fusions down into the lumbar. And I would not be surprised if they opted to keep having broken tethers replaced the rest of their lives if it avoided a lumbar fusion.

In stark contrast, if I were back at the time signing on the dotted line allowing my daughters to be fused, I would not have agreed to tethering them. That is because as far as I can tell, the tether probably doesn't allows noticeably more ROM versus fusion in the T4-L1 range. We have out year data for fusion whereas tethering is still highly experimental at the moment.

I can ask Frick and Frack and see what they say.

[titaniumed]

Sharon,

I wouldn’t sign either. The whole purpose of the Magec system was to avoid repeated surgeries in kids. If repeated surgeries were that easy, it wouldn’t be a problem, but it is a problem for multiple reasons. Surgeries are one thing and repeated surgeries are another.....I would not take this lightly. It multiplies the odds for complications and it changes the equation. Anesthesia related complications are things that are not discussed often, and can be extremely difficult to deal with.

Melisse

You realize that things have changed with the new information.....Your requirement of 3 osteotomies which indicates a kyphosis component, and the “less than ideal” SRS tethering data and conclusion.

I don’t see how they could tether especially with the osteotomy requirements? and if they could, what would be the advantage? Your projected fusion is short and will hardly affect mobility.

I am sorry but with this information, I would not pursue tethering.

Ed

[Pooka1]

Sharon,

I wouldn’t sign either. The whole purpose of the Magec system was to avoid repeated surgeries in kids. If repeated surgeries were that easy, it wouldn’t be a problem, but it is a problem for multiple reasons. Surgeries are one thing and repeated surgeries are another.....I would not take this lightly. It multiplies the odds for complications and it changes the equation. Anesthesia related complications are things that are not discussed often, and can be extremely difficult to deal with.

I get your point. I guess it depends on how often the tether breaks. If since inception, they are looking at ~50% in, what?, 3 or 4 years, that is significant. I don't think it is feasible to replace the tether with that frequency.

The other thing is another HUGE reason why I would not agree to tethering my daughters thoracic spine is that the key to avoiding extension into the lumbar (besides not having to fuse past T12 or L1) is driving the most straightness of the unfused lumbar by correcting the T curve as much as possible. That is according to Boachie and our surgeon. If the tether wasn't guaranteed to straighten the T curve as much as fusion in a given patient then I don't think it is in that kid's best interest to be tethered. You may have slightly more ROM but it may come at the expense of needing either fusion or more tethering of the lumbar. I would NEVER agree to that unless I got that guarantee the tether would straighten as much as segmental instrumentation. I wonder how many parents who are okaying tethering of T curves in their children are aware of this issue.

They may be winning the battle but losing the war.

[burdle]

I get your point. I guess it depends on how often the tether breaks. If since inception, they are looking at ~50% in, what?, 3 or 4 years, that is significant. I don't think it is feasible to replace the tether with that frequency.

The other thing is another HUGE reason why I would not agree to tethering my daughters thoracic spine is that the key to avoiding extension into the lumbar (besides not having to fuse past T12 or L1) is driving the most straightness of the unfused lumbar by correcting the T curve as much as possible. That is according to Boachie and our surgeon. If the tether wasn't guaranteed to straighten the T curve as much as fusion in a given patient then I don't think it is in that kid's best interest to be tethered. You may have slightly more ROM but it may come at the expense of needing either fusion or more tethering of the lumbar. I would NEVER agree to that unless I got that guarantee the tether would straighten as much as segmental instrumentation. I wonder how many parents who are okaying tethering of T curves in their children are aware of this issue.

They may be winning the battle but losing the war.

In summary is this discussion - holding the curve (vbt) versus straightening the curve ( fusion)

[Pooka1]

In summary is this discussion - holding the curve (vbt) versus straightening the curve ( fusion)

That strikes me as a distinction without a difference, Burdle.

The lumber, if it is just compensating for a structural T curve, tends to come to match whatever the new configuration of the T curve is. The spine seems to balance itself at least in the saggital plane. I assume a T curve that is straightened and then held by a tether will drive the same straightness into the lumbar as a fusion causing that level of correction would.

Of course I have no idea what I'm talking about. Only the surgeons who do these ops and perhaps some of the patients would know the answer to this.

The issue of 50% breakage in a few years is amazing to me. We can put a man on the moon and we can't find a material that won't break in a spinal tether? Ed???

[burdle]

That strikes me as a distinction without a difference, Burdle.

The lumber, if it is just compensating for a structural T curve, tends to come to match whatever the new configuration of the T curve is. The spine seems to balance itself at least in the saggital plane. I assume a T curve that is straightened and then held by a tether will drive the same straightness into the lumbar as a fusion causing that level of correction would.

Of course I have no idea what I'm talking about. Only the surgeons who do these ops and perhaps some of the patients would know the answer to this.

The issue of 50% breakage in a few years is amazing to me. We can put a man on the moon and we can't find a material that won't break in a spinal tether? Ed???

Do we know if Tethering a thoracic helps a structural lumbar curve? Or would the tether just go down to lumber levels? How do you know the teher is broken? with the speed that a curve can progress and the time between appointments there could be a while before anything amiss is noted?

[Pooka1]

Do we know if Tethering a thoracic helps a structural lumbar curve? Or would the tether just go down to lumber levels? How do you know the teher is broken? with the speed that a curve can progress and the time between appointments there could be a while before anything amiss is noted?

I think I have seen radiographs of a tether on the right to hold a T curve and another tether on the left to hold a L curve. So they will tether two structural curves separately and on opposite sides because the tether goes on the convex side.

I saw a radiograph of a putative broken tether. The anchors are splayed apart at one level and it doesn't look like the radiograph taken immediately after tethering.

I just have to say that there was a podium talk about this at last year's SRS meeting. This breakage issue must be known to the people who come on here talking about it from the FB group yet they never mentioned it. I am trying to decide if that is honest.