110 Degree tether

[titaniumed]

I stumbled across this girl Julia from England who was tethered at (Approx age 14) in New Jersey around 18 months ago. And for most of us around here who are lifers, its just something I had to throw up since my heart just breaks seeing such massive curves in young kids.....How much pain and suffering do we have to go through during our lives? Its something that many of us around here on this forum know about.

I watched just a few of her videos and this girl is a communicator. Perhaps a future Tonibunny, I can see it happening. She mentions that she would be happy if she helped one person and she is going to help millions through her vlogs.

She has a Kyphosis component that is problematic. Its in one of her videos.

Having such a tough case, she has incredible amounts of positive attitude and strength that's automatically built in and hopefully she will continue to pass it on. She is going to be ok.

Before X-Ray :0.54
After X-Ray 1:12
Scars 7:45

https://www.youtube.com/watch?v=QIEFLZpl6fM

Ed

[Pooka1]

What an amazing girl. If anyone can replicate Tonibunny, maybe she can. What a huge loss that was.

I was a little surprised to hear her say her tethered spine was stiffer than her 110 degree curve. I would not have guessed that... how much ROM can a 110 degree curve have???

When my daughter denied having less ROM after she was fused, I assumed it was because she didn't remember having an unfused spine that must have had more ROM. Or maybe her 56 degree curve was just so stiff and locked that maybe she was perceiving it correctly and there was very little actual loss of ROM upon fusion. If her situation is analogous to Julia's then I think it is the former... she did have more ROM but doesn't remember having it. Julia remembered maybe because she is a gymnast.

[LindaRacine]

She's pretty amazing.

I'm really surprised that anyone would have tethered that curve. Unfortunately, I seriously doubt it will hold over time, and I'd be willing to bet that she'll end with a spinal fusion at some point. I also question the 55 degree post-surgery measurement. It looks a lot larger than that to me.

--Linda

[Pooka1]

In re her Cobb after tethering, I agree it looks to be north of at least 90 degrees. And it looks like the screw heads are closer on the bottom part in the later radiograph so I wonder if the tether already broke.

After hearing what Newton said about turning 4 out of 5 kids away from tethering, I really wonder who tethered her?

If she is fused at some point, I bet she will not notice a difference between the tether and fusion.

[titaniumed]

how much ROM can a 110 degree curve have???

Sigh....She has a "Boachie Pretzel"......(with a 90 deg kyphosis now, which happened quick) Its hard to say much about thoracic ROM when this happens. (I think Dr Boachie deserves the Boachie pretzel name since he does work on THE worst cases) This all on his FOCOS web page.
http://www.orthofocos.org/

Her video 4 months ago, "My back is worse" (Feb 2019)
https://www.youtube.com/watch?v=EIgcFrmOn8k&t=417s

Photos before and after (her tethers have not snapped)
5:35
5:39
6:10 Rejecting fusion

Her situation is more about preventing serious medical problems in the future, and not about thoracic flexibility. Its beyond tethering. Chances are they will preserve her lumbar and keep it up high. Big curves can shorten lifespan, crushing down organs isn't a good thing. She is also probably done growing now....

Chances are high that she needs to be fused and those high thoracic curves will probably require thoracotomy which is why I thought about Tonibunny. She had 2 of them (Under the armpits, both sides) and did pretty good.... Also, a costoplasty or thoracoplasty (Rib hump reduction) Tonibunny was a very special person. So is Linda Racine. Both incredibly knowledgeable scoliosis patients. Both Toni and Linda have given so much over the years.

Tethering cant solve all our problems....so rejecting fusion is not something that's healthy when we need it. There is a place and a time for each procedure...

She is beautiful no matter what shape she is in. Humps or no humps.

Ed

[LindaRacine]

I was a little surprised to hear her say her tethered spine was stiffer than her 110 degree curve. I would not have guessed that... how much ROM can a 110 degree curve have???

...Julia remembered maybe because she is a gymnast.

I think that's probably a big part of the issue. It's also possible that it will take a long time for her soft tissues to get used to the new configuration.

[LindaRacine]

Hi...

Just checked with two specialists, one of whom does VBT. Both said her curve was way too large for tethering. I'm guessing that whoever operated on her was either 1) clueless or 2) felt that trying tethering was better than doing nothing (since Julia would not agree to a fusion). Either way, I think this is going to end up being somewhat of a disaster.

--Linda

[Pooka1]

In one of the talks, I think it was Newton, he said that he had a skeletally mature patient with a large curve who wanted to be tethered and not fused. He either turned her away or finally convinced her, I wasn't sure. That's when he showed the pictures of a fused patient back-bending further than a tethered patient.

Tethering is clearly not right for many people. I question whether the ROM of the large, stiffer T curves is actually that much different than tethering or even fusion. That one article in an animal model showed tethering had less ROM than staples in one plane. Anyone practicing good posture is behaving AS IF their T spine is fused. There is a reason my daughter denied she lost ROM after fusion. Normal people don't use the T ROM in normal life so she didn't perceive a difference.

I think this issue may be driving Newton in turning 4 out of 5 people away from a treatment that has a lot of known and unknown unknowns at this point. All the tethers eventually break. What happens then if the remodeling wasn't perfect and complete? I think some of the speakers were hinting at their concern about this in trying to select the perfect patients. But some surgeons out there apparently take all comers. They are running a large, uncontrolled experiment it seems just throwing everything against a wall and seeing what sticks. Newton, perhaps because he has investments in tether companies, is trying to establish where it will work from hypotheses it seems.

[LindaRacine]

Normal people don't use the T ROM in normal life so she didn't perceive a difference.

Agreed, although I would probably use the word average instead of normal.

But some surgeons out there apparently take all comers. They are running a large, uncontrolled experiment it seems just throwing everything against a wall and seeing what sticks. Newton, perhaps because he has investments in tether companies, is trying to establish where it will work from hypotheses it seems.

I've stayed out of this debate intentionally (and also because I've signed an NDA in regard to the study of this device). At the beginning, I warned folks that it's irresponsible for surgeons to widely adopt a new medical technology without knowing more about long-term outcomes. I'm fairly certain that many of the patients who have been tethered do not understand the extent of the risk they face down the line. I get that it's incredibly tempting to go with something that might be way better than the current technology, but there's so much unknown. It's important to remember that this technology is not yet FDA approved.

--Linda

[titaniumed]

Talking about devices, here is another one....ApiFix
http://apifix.com/en/

https://www.youtube.com/watch?v=RWoLcYnfq94

Once again, not FDA approved. Several hundred patients have been done, Lenke Type 1, 4, 40-60 degrees only. Not in the United States.

Again, still unanswered questions. Its been just a few years since they launched.

Ed

[titaniumed]

The screw is driven into the pedicle, and it seems like a whole lot of force for only one screw.....I wonder if any screws have pulled out?

Ed

[Pooka1]

It is a fabulous idea that the patient can ratchet the device but I don't see how they know how far to bend. Is it always to the limit? I wonder when a point is reached where no matter how much the child bends that they can't ratchet it any more. It may be the case that it just prevents the apex of the curve from getting worse. If that is the case then it can't address any non-structural lumbar curve. If so, they might win the thorax war and lose the lumbar war if the lumbar is not driven straight enough.

I really want to see the data on this one.

[LindaRacine]

As with so many other devices, I would worry about issues in the sagittal plane.

[titaniumed]

I saw this one a few years back and thought it was interesting....I am guessing that the the bending x-rays will reveal the limit of flexibility and give an idea as to where the device will hit its limit. There should be a limit on this device to prevent over correction. This is easy to do.

I don't think this device has the "Hype of tethering"...is it the device, or is it the hype? The negative's of fusion? Is it really that bad?

Its funny how hype works....like the old Merrill Lynch commercial where a herd of cattle all run in the same direction out of control. One cow makes the decision, and the rest follow. Greener grass over here guys...Wait till the studies on CBD come out, you know there will be some sort of negative news. No drug has no side effects. (smug face) There is always a consequence.
https://www.youtube.com/watch?v=V4rO1DAj1I0

There is no doubt some element of risk is all that we do, hopefully, we try not to make too many mistakes. If you brace and your curve hits a certain point, there has to be a limit. Would you keep bracing to a 90? What do you do? Run with the herd? Or go back by the barn where you know you will be fed?

Julia is in a tough situation right now. There is no doubt that her surgeons in England have voiced their concern. Its a serious situation. They would have said something a long long time ago way before her first curve hit 110 degrees....When Elias's 110 degree curve was discovered, the surgeon in Portland said come right away. Shriner's sent a bus up to Canada. The testimonials and history of scoliosis cases are extremely valuable lessons. (BTW, he came out great)

I think this is a good lesson on self dictating.... If I needed a quadruple heart bypass and insisted on a triple, would that make any sense? Sounds crazy....but it happens. It happens with scoliosis because people don't seek advice from qualified scoliosis surgeons. Believe me, they don't like operating, and surgery is always a last ditch effort, but if and when you need it, their advice has a lot of weight on the decision. Sometimes, we don't hear what we want to hear from them, and hype is all about hearing what we want to hear. Nobody wants to hear bad news. Spinal fusion doesn't deserve the negative connotations that it gets. Its not the end of the world. Surgery saved my life, I will always be thankful.

Ed

[titaniumed]

Actually, that commercial is not the right commercial....but I am still looking (smiley face)

Here are some others that I found....Merrill Lynch liked using bulls in their commercials years ago. Bulls always win in a bull bear fight.

Scoliosis and investing both have elements of risk so these videos relate!

https://www.youtube.com/watch?v=_uZkHvcX8h4

https://www.youtube.com/watch?v=FelxocgFad0

Boy I sure am posting a lot of cow videos these days....LOL

Ed