Why I decided to brace my daughter with the SpineCor

[Pooka1]

It's my understanding that a large fraction, if not most, kids who emerge from adolescent with a curve that is larger than ~ 40* (I'll have to search for the correct number but this is close) will progress about one degree a year for the rest of their life. Not all but many if not most.

This is partly why I was opposed to bracing my one daughter (though she chose to try it). Even if it worked, and kept her at a sub-surgical angle after growth was done, she was likely looking at surgery in the future. So I viewed bracing her as potentially putting off the surgery rather than avoiding it. If her curve holds at 40*, no surgeon is going to touch her now and yet she is likely looking at surgery down the road. (N.B. I am in an unusual situation where I already know the outcome of my daughter's twin. I admit the situation wouldn't be as clear if there was no twin.)

Kids can be back to school in 25 days. Many adults aren't back to work even after in 25 weeks. Now that the hardware is curative in some cases, for me it is imperative my kid gets the surgery as a kid and NOT as an adult when she is working a career and when recovery is an order of magnitude harder. My daughter's brace is failing to hold her curve. That is looking like the best possible outcome at this point, all things considered.

[FixScoliosis]

few words on surgery

written in a paper I read recently.

"The degenerated
idiopathic scoliosis mostly in the lumbar and/or thoracolumbar
spine is quite frequently combined with
spinal stenosis at a relatively young age, specifically in
the adjacent lower segment after Harrington instrumentation.
This adjacent segmental spinal stenosis,
mostly below a long fused idiopathic scoliosis, appears
about 15–20 years post-surgical with Harrington rods
(Fig. 5). There are not yet similar long-term results
available for cases which have been treated with one
of the CD-type third generation instrumentation that
allow superior restoration of the sagittal alignment,
possibly protecting the spine from developing rapid
adjacent segment degeneration"

Hopefully the newer pedicle screw surgeries can avoid the rapid degeneration seen with harrington rods.

I know that they are studying increased G-forces affecting the cervical spine, even from walking. These may cause premature degeneration, because the dampening effect of the spinal discs is removed with insertion of rods and concentrated in the neck.

[Karen Ocker]

Pedicle screws VS Harrington Rods

Hopefully the newer pedicle screw surgeries can avoid the rapid degeneration seen with harrington rods

.
Fix Scoliosis

Harrington rods haven't been used for a very long time and are no longer the standard of care. A major problem with the Harrington Rods was the lack of proper lordosis in the sagittal plane and possibly the thoracic-depending on levels affected. This brought about abnormal forces on the unfused discs and joints causing flat back syndrome. Harrington Rods were first used in the ~1970. My original fusion in 1956 was uninstrumented and only a modest correction was obtained after gradual "stretching out" in a plaster cast with a turnbuckle. That correction was lost after my uninstrumented fusion weakened over my lifetime resulting in a revision 6 years ago at age 60. My new instrumentation included: pedicle screws, Isola rods, pelvic screw, laminar wires and a cage. I am still totally pain free, working and living a fully normal life. My fusion levels: T-4 to sacrum. Pre-op curves: C=30, T=80, L=40. Post op:50% reduction .

I went back to work, gradually, 6 months post-op.

[Pooka1]

written in a paper I read recently.

"The degenerated
idiopathic scoliosis mostly in the lumbar and/or thoracolumbar
spine is quite frequently combined with
spinal stenosis at a relatively young age, specifically in
the adjacent lower segment after Harrington instrumentation.

Okay, what about thoracic curves with Harrington instrumentation (just for my own amazement because Harrington rod surgery isn't really relevant to folks with modern hardware)?

[FixScoliosis]

Sharon, I don't recall reading any reviews purely for Harrington rods in thoracic curves. I do have a lot of research papers (about 1200 articles related to spine and scoliosis), but not everything.

Karen, I am happy that modern surgery could help you. Good surgeons today are very GOOD when using latest technology.

Despite my personal conviction that better treatments can be found for AIS than bracing followed, in many cases by surgery. There is a time and a place for surgeons. We need them in modern health care.

[concerned dad]

The thread is taking a bit of a bend OT, that’s fine. Let’s see if I can follow and perhaps bring it back around.

That’s an interesting perspective Sharon. As I understand you, you’re basically saying that perhaps since:

1. recovery from surgery is easier on the young than the old
2. Large curves progress and some are likely to progress to require surgery
3. There have been significant advances in surgery such that, while recovery is not trivial, it is not as extreme as in years past.

Then one might as well get it over with at a young age. Sort of (not exactly, but loosely) like a Chicken Pox party where parents expose their kids to Chicken Pox at a young age (when it is easily tolerated) rather than have them get exposed as an adult (when it is often more severe). I guess the presumption is that future advances in surgery will not be as dramatic as the ones over the last 30 years. I may not be following you here but this makes sense I think. The curve progression thing is supported by a figure in the report I mentioned above (the one that ‘salvages’ some data from the 1995 SRS bracing study). That figure is attached.

And then Fixscoliosis argues that surgery is a last resort w/references to Harrington Rods and stuff (I’ve stayed away from the surgery part of this forum as that stuff is way over my head).

And Karen then comments that surgery has advanced significantly from the days of Harrington Rods and point 3 above is valid.

Wow, that is something to ponder. Of course, with the SpineCor, the 5 year data show the curve amplitude decreasing with time (yeah, I know we still need to iron out all the weaning and over compliance stuff, but still…..). Whereas the attached figure shows the curve amplitude increasing (with a TSLO Brace).

[Pooka1]

The thread is taking a bit of a bend OT, that’s fine. Let’s see if I can follow and perhaps bring it back around.

That’s an interesting perspective Sharon. As I understand you, you’re basically saying that perhaps since:

1. recovery from surgery is easier on the young than the old
2. Large curves progress and some are likely to progress to require surgery
3. There have been significant advances in surgery such that, while recovery is not trivial, it is not as extreme as in years past.

Then one might as well get it over with at a young age. Sort of (not exactly, but loosely) like a Chicken Pox party where parents expose their kids to Chicken Pox at a young age (when it is easily tolerated) rather than have them get exposed as an adult (when it is often more severe).

Your points #1 and #3 are clearly true for most people, point #2 needs some unpacking.

I want to stress that my thoughts about my daughters are predicated on the assumption that they do NOT have AIS but rather scoliosis secondary to a connective tissue disorder. I am also mindful about the outcome in my one kid (fusion) because it necessarily is related to the outcome in my braced kid (her identical twin). My decisions might be different if I was dealing with AIS or only one kid.

Our surgeon insists that only about 5% of people who make it to Risser = 5 with a sub-surgical angle ever progress in adulthood. If that's true, this 5% appears to be overrepresented in this little sand box as far as I can tell.

For the same reason bracing is known not to work for certain connective tissue disorders including Marfans Syndrome, I think the people who progress in adulthood might also be from this group in addition to women who are pregnant... apparently it has been shown that progesterone is linked to curve progression in adult women per Pam.

Some of these points are made in this thread...thread

I guess the presumption is that future advances in surgery will not be as dramatic as the ones over the last 30 years.

I agree that is a big wildcard. For all we know, this surgery might eventually be done as an outpatient. Or they will figure out how to stop progression very early. Who knows.

What I do know is that surgery cured my one kid (she is not predisposed to back issues over and above anyone else) and I hope for the same result for the other.

I may not be following you here but this makes sense I think. The curve progression thing is supported by a figure in the report I mentioned above (the one that ‘salvages’ some data from the 1995 SRS bracing study). That figure is attached.

That is a slower progression than the one degree a year thing but may be related. Of course at this point, I don't thing much of averaging these data.

Wow, that is something to ponder. Of course, with the SpineCor, the 5 year data show the curve amplitude decreasing with time (yeah, I know we still need to iron out all the weaning and over compliance stuff, but still…..). Whereas the attached figure shows the curve amplitude increasing (with a TSLO Brace).

That stuff raises more questions than it answers at this point IMO.

[concerned dad]

That is a slower progression than the one degree a year thing but may be related. Of course at this point, I don't thing much of averaging these data.

"Sand Box", I like that

regarding curve progression, There was a link on Linda Racine's website to a discussion of this. The link is 'busted' now but worked a month ago.

I happened to have done a copy of the info and just found it, although I cant attribute the source. Not even positive this is from Linda's site but she does have a busted link to a curve progression reference that I am almost certain worked when I first looked.

In adults, progression depends on the degree of the curve. Minimal progression can be expected in an adult whose curve is less than 30 degrees.5,14 A 40- to 50-degree curve in a skeletally mature person will progress 10 to 15 degrees over a normal lifetime, and curves greater than 50 degrees progress 1 or 2 degrees every year.2,14

Of course, it would be nice to know what those reference numbers 2, 5 and 14 are from.

[Pooka1]

Okay that's a start.

I don't know when surgeons pull the trigger on surgery. I don't think there is one number because it will depend on the rate of curvature, among a boatload of other things.

I think they generally will suggest surgery above 45* irrespective of anything else but I don't know that. But that is in the group that is only expected to increase 10-15 over a lifetime. So that's confusing. Maybe I'm wrong about when they generally suggest surgery.

For my one daughter, he said she needed surgery soon when she was 48* with a known high rate of curvature. Two months later on the table, she was 58*.

[concerned dad]

not sure if anyone is interested, but I've been trying to find available SpineCor data/papers.
Here is one that is posted on a UK website. Looks very old and does not appear to have been actually published anywhere.
Curve Reducability

It looks at the predictive value of the initial inbrace correction. Not sure if it is indeed the initial correction they are looking at or the one 1 month in. In any event it is an interesting discussion. A bit hard to follow along with the language.
They do make the statement to the effect that they have some patients who do not get a good initial inbrace correction. And these are the most likely to fail (go on to surgery). At least, I think that's what is said.

Maybe it was published....
How about this?
Coillard C, Leroux MA, Zabjek KF, Rivard CH. La réductibilité des scolioses idiopathiques dans le traitement orthopédique. Annales de Chirurgie 1999 53 (8) 781-791.

[Pooka1]

If the Clear Institute is doing science, why do they make so many quacky claims? Why don't they publish their results in the refereed literature? Why do they appear to be a shoo-in for quack of the month over at Quackwatch?

Were your daughter's radiographs read by an orthopedic surgeon or a lay fitness coach?

[concerned dad]

OK, that was, as my daughter would say, "random".

My daughters xrays were read by a surgeon.
However, I received a copy of the xrays on disk. It came with some fancy software. There was a digital tool for drawing lines and measuring angles.

I googled some stuff to see what angles to measure. Drew 2 lines, and BINGO, I got exactly 38 degrees. The same number the surgeon measured.
Dumb luck, maybe, but it didnt seem like rocket science. At least the measuring of the COBB angle stuff.

I should note that I did this for fun and to satisify my curiosity. I am leaving it to the experts to read the xrays.

I should also note that the software only read to the nearest degree. Hence 38, not 38.6. This is what turned me off to the NYC Chiropractors. On some youtube videos I saw references to them discussing COBB to the nearest 10th of a degree. My undergraduate degree is in engineering and I have some appreciation for significant digits - when they are valid and when they are not. Sometimes attempts are made to substantiate weak claims by implying exactness in a measurement. I didnt buy it.

Regarding CLEAR, I havent looked into it. Nor have a really looked into Schroth. I would need to see some technical literature and I guess that is the problem. I dont think the SRS folks think highly of it but I do think SOSORT may have a different view.

[Pooka1]

Wrong thread!

That was NOT addressed to you, Concerned Dad!

I meant to post that on the thread with the Clear Institute (shill?) posting to it.

You are about the last person to trust your daughter to anything less than top shelf, science-based, non-woo-woo care.

[Pooka1]

That post was in response to a rant posted by hope404 which I see s/he deleted. Good thing.

I pop open several widows to respond to threads and I put that post in the wrong thread.

Let's see if hope404 can respond to any of the questions posed. Anyone want to bet?

[concerned dad]

Ahhhh, multiple windows, that makes sense.

I thought perhaps you might have been opening the door to discuss CLEAR.

I'm not ready for that yet.... still trying to rationalize/understand the whole bracing thing. That Danielson paper I commented about on Feb 1st still has me scratching my head. That last sentence still troubles me:

Our present results do not change the principal conclusion of the original SRS study: that well-performed brace treatment prevents curve progression during adolescence in patients with moderate AIS, while observation as the intended treatment allowed 70% of patients to escape any treatment at all and left 10% with surgical treatment and 20% with brace treatment.

On one hand you can then say that it showed brace treatment had a positive effect.

On the other hand the data suggests that bracing unnecessarily treats 90% of the kids to save the 10% from surgery.

Maybe I'm not thinking about this right. But, what are the limits we would accept. Would we unnecessarily treat 99% to save 1% from surgery? obviously, we would want to unnecessarily treat as few as possible.

I guess it comes down to the 'hardship' or burden of the treatment.