Treatment: PT using MedX per Mooney & later, McIntire research

[AMom]

Any Other Methods to Track Rotation?

.... I am coming to think that those, along with Adams tests on already diagnosed kids are just dog and pony shows for the parents. Because I made it clear with the surgeon that I was interested only in straight, rigorous science and nothing else, that may explain his not using the scoliometer. Or maybe he never uses it on any patient, who knows.

I've wondered for years why they keep doing the Adams bend on my daughter, it doesn't give enough info to r/o an x-ray nor does it give new or reliable info. Oh well, I need to "let some things go" and this seems to be an easy one.

Have you come across any other methods of tracking rotation (that a lay person could use) in your time here?

A Mom

[Pooka1]

I've wondered for years why they keep doing the Adams bend on my daughter, it doesn't give enough info to r/o an x-ray nor does it give new or reliable info. Oh well, I need to "let some things go" and this seems to be an easy one.

I have come to learn that dealing with scoliosis is largely an exercise in "letting go."

Have you come across any other methods of tracking rotation (that a lay person could use) in your time here?

I think the only rigorous way is to measure it on the radiographs like the surgeons do. The method is readily googlable. I don't think there is a conservative way that is independent enough from lateral curve to be able to make any statement about rotation only. I don't know whether the apparent play between rotation and lateral curve is just apparent or if rotation and lateral curve are really more in lock step. If the curvature is due almost entirely to anterior overgrowth of the spine and minimum spacing-filling of the volume, then I would think they are in lock step for the most part. If so then the scoliometer is just measuring increased rotation from curve progression (or increased curve progression from the rotation).

I don't think that is necessarily the case as I have seen reference to amount of vertebral rotation in terms of planning surgery and predicting the outcome based on that. If rotation was in lock-step with curvature then that would not be new information over and above the Cobb angle.

Who the heck knows.

ETA, Rotation and curvature do not appear to be in lock-step when standing given the cases of my daughters who had similar-sized large curves (high 50s*) yet one was obviously torqued around like a pretzel and the other had no obvious rotation. Yet on Adams, they both had huge slopes. So maybe Adams reveals the lock-step that standing does not? That's what I mean by apparent. Looks can be deceiving.

[AMom]

PT Confirmed Form is Good

Shhhhh, if we don't tell anyone I'm different, no one will notice.

Yesterday, we tried Tom's "Schroth version" of the roman chair/ Schroth positioning instead of symmetrical positioning. (fingers lightly touching ear while the other hand rested on her opposing hip.) I was shocked. I can't remember the last time I saw my daughter bend over (think Adam's bend) and not see a bump immediately appear. Using the Schroth position on the equipment, she had a perfectly smooth back. I never really asked questions about it, but I had a vague idea that the STRUCTURAL portion of the curve could not straighten out, flex, or de-rotate without surgery, so I thought I would never see a "flat" back in a bending position. Am I confusing two separate ideas here?

She said it felt easier. It was my impression she could do another 7-10 reps, but I didn't want to push it the first time, just in case there was residual discomfort. I'll try it again tomorrow (second time for us) and let her do the extra set of 10 if she is up to it.

Today was her 6 month evaluation; we always start with a modified biering-sorensen test (roman chair set to 90°.) Immediately thereafter, she did 20 reps @ 45° with Schroth arms on the roman chair and then went through the rest of the exam. She is more comfortable in the asymmetric position and able to handle a bigger workout. This is only her third time, but all three of us agree (daughter, PT, & me) this position is better suited to her needs.

[TAMZTOM]

Today was her 6 month evaluation; we always start with a modified biering-sorensen test (roman chair set to 90°.) Immediately thereafter, she did 20 reps @ 45° with Schroth arms on the roman chair and then went through the rest of the exam. She is more comfortable in the asymmetric position and able to handle a bigger workout. This is only her third time, but all three of us agree (daughter, PT, & me) this position is better suited to her needs.

How was the Sorensen test modified? How long did she hold? It'd be useful to me to compare Tamzin on the test (having just recently started Roman Chair) with your daughter's hold time.
Thanks
Tom

[Pooka1]

My one kid was highly rotated pre-op and was about 90% de-rotated post-op because of pedicle screws. The two rods are almost completely superimposed for most of their length which is related to how most of the rotation was removed. She appears very close to normal in terms of rotation now whereas she was obviously highly rotated before. A naive person would not notice the residual rotation whereas they couldn't miss it before.

Just wanted to add, the one kid with the huge rib hump now has no rib hump. One shoulder blade sticks out slightly more than the other. I notice it because I know what to look for. I doubt a naive observer would notice a damn thing amiss.

Pedicle screws deserve the Nobel in my opinion.

[TAMZTOM]

I've wondered for years why they keep doing the Adams bend on my daughter, it doesn't give enough info to r/o an x-ray nor does it give new or reliable info. A Mom

Re. the emboldened point: part of the SpineCor continuous assessment procedure is to measure the rotation precisely at MANY points on the spine; simply measuring the rotation at the apical points misses most of the story. DErotation of rotated vertebrae BEGINS at the superior and inferior ends of the curves; derotation begins at the furthest points from the apex and end at the apex. 0° at the apices = success.
E.g., at Tamzin's last appointment, the shoulder girdle counter-rotation evident last June and at the December SpineCor fitting appointment was radically improved. This tells us that the derotation emphasis of the SpineCor has worked; rotation-wise, her spine is less rotated. Last June, Tamzin's rotation at the thoracic apex was 15°; it was at 4° in-brace at the last SpineCor appnt.
If the scoliometer wielding orthotist, spine surgeon or PT doesn't know why and what they're measuring and what to do with the NEW data, yes, let go.

[Pooka1]

Tom,

Do you think the lateral curve reduction drives the rotation reduction or the rotation reduction drove the lateral curve reduction? I can't figure out what the deal is with this from the literature. Maybe I can't find the right papers.

Do you think rotation and lateral curve are in lock step?

Do you think the sequence of curve progression has to be exactly reversed in curve reduction or is there a better approach?

I haven't seen this stuff addressed in the literature but maybe you have?

Last, the curve reduction and derotation you have achieved makes me think you are dealing with either JIS versus AIS or Chiari/SM versus straight AIS. Because of that, no reduction/derotation you achieve would shock me but I would be shocked if you achieved any reduction/derotation with straight AIS.

[TAMZTOM]

Do you think the lateral curve reduction drives the rotation reduction or the rotation reduction drove the lateral curve reduction?

Katerina Schroth (i.e., not the money grabbing modern clinics, e.g., Weiss) believe that lasting lateral curve reduction could not be achieved without firstly derotating. SpineCor principles agree. I KNOW that lateral curves can be reduced without derotation being achieved; I do NOT know whether such correction can be maintained.

Do you think rotation and lateral curve are in lock step?

Yes. I also believe that lateral curve correction without derotation can dangerously rigidify the rotation, even increase it.

Do you think the sequence of curve progression has to be exactly reversed in curve reduction or is there a better approach?

No. E.g., if rotation caused lateral curvature, fixing lateral curvature can worsen rotation (see above). Whatever the pathogenesis, I believe that 'unscrewing' the spine is necessary. Cf., surgical correction resulting, years later, in curves appearing in un-fused segments of the spine.

I haven't seen this stuff addressed in the literature but maybe you have?

Schroth....and Schroth discussed at SOSORT conferences, SEAS stuff, etc.

Last, the curve reduction and derotation you have achieved makes me think you are dealing with either JIS versus AIS or Chiari/SM versus straight AIS.

I agree...with a bit of what you suggest. Tamzin, categorically, is NOT AIS. Her curves were there before diagnosis, probably from at least 8 yrs old, possibly as early as 6 yrs. Nevertheless, I do not believe the distinction between AIS and JIS is much more than an almost arbitrary line in the sand; many classified AIS kids are JIS kids.
As for Chiari/SM, as I've said repeatedly, there is nothing but unfounded speculation from the medical and scientific community regarding whether Chiari/SM causes or is caused by AIS or JIS. My own opinion is that either scenario is possible, no one knows, and therefore science AND medicine classify scoliosis in kids with Chair/SM as AIS or JIS.

Because of that, no reduction/derotation you achieve would shock me but I would be shocked if you achieved any reduction/derotation with straight AIS.

The failure to diagnose concurrent conditions such as Chiari is, I believe, widespread. E.g., I posted peer-reviewed research links showing that 35% of AIS girls had ectopic cerrebelum tonsils. AIS is a condition with numerous likely causes...would you remove 35% of AIS girls from the AIS classification?

PS: good questions, especially on the rotation issue.

[Pooka1]

AIS is a condition with numerous likely causes...would you remove 35% of AIS girls from the AIS classification?

Yes if there is good evidence not to lump...

http://www.scoliosis.org/forum/showt...be-problematic

Lumping Marfan scolisois in with AIS leads to a logical fallacy.

Lumping Chiari/SM scoliosis leads to a logical fallacy.

W.R.T. the 35%, I want to ask if those cases behave like the other 65% of non Chiari cases or not. Syrinx behavior takes Chiari/SM out of the straight AIS category in terms of curve reduction behavior in my opinion.

I do not understand the need to lump these things. What is wrong with splitting when there is evidence to do so?

It may be technically true that Marfans and Chiari/SM and whatever still have no known cause but they do have KNOWN associations and KNOWN curve behaviors that set them apart from straight AIS. What is gained by ignoring that?

[TAMZTOM]

What is gained by ignoring that?

Sharon, you are arguing against prevailing medical and scientific opinion. THAT IS FANTASTIC. Glad to have you on-board! Objectivity and facts and cognizance of what a flawed scientific method discards. I want your brain focused on VERY SPECIFIC CORRECTIVE EXERCISE AND LETS SEE IF IT WORKS.

PS: I will PM or email you with very specific detail.

:-)

[Pooka1]

Nevertheless, I do not believe the distinction between AIS and JIS is much more than an almost arbitrary line in the sand; many classified AIS kids are JIS kids.

There is evidence JIS and AIS behave differently to bracing.

Bracing has been shown to reduce JIS curves but not AIS curves.

This reveals them to be extremely different animals in my opinion. Response to bracing is as much a difference as is age on diagnosis.

[AMom]

Structural Curve Stable 14 months

33T & 27L on 02-10-11
32T & 23L on 06-16-11
34T & 20L on 10-10-11
31T & 25L on 04-16-12
__T & __L on 10-15-12

UPDATE: My daughter's Structural curve has remained stable for 14 months. I am relieved the compensatory curve is better balanced.

ORTHO: Don't get your hopes up, this is good news, but her curve may progress to surgical levels very quickly. I've seen it happen as late as nine months before the growth spurt ends.

MY PLAN: Continue PT 3x per week

ORTHO's PLAN: Continue to Watch & Wait, next appt in 6 months

DAUGHTER'S PLAN: Continue to bring ipad Touch & listen to favorite books on tape so as to drown out my Mom's boring conversation with the Ortho

[TAMZTOM]

MY PLAN: Continue PT 3x per week

ORTHO's PLAN: Continue to Watch & Wait, next appt in 6 months

DAUGHTER'S PLAN: Continue to bring ipad Touch & listen to favorite books on tape so as to drown out my Mom's boring conversation with the Ortho

Brilliant. My daughter has similar devices: "I can't be bothered when you start talking all that latin stuff," she explained.

[Pooka1]

33T & 27L on 02-10-11
32T & 23L on 06-16-11
34T & 20L on 10-10-11
31T & 25L on 04-16-12
__T & __L on 10-15-12

UPDATE: My daughter's Structural curve has remained stable for 14 months. I am relieved the compensatory curve is better balanced.

ORTHO: Don't get your hopes up, this is good news, but her curve may progress to surgical levels very quickly. I've seen it happen as late as nine months before the growth spurt ends.

MY PLAN: Continue PT 3x per week

ORTHO's PLAN: Continue to Watch & Wait, next appt in 6 months

DAUGHTER'S PLAN: Continue to bring ipad Touch & listen to favorite books on tape so as to drown out my Mom's boring conversation with the Ortho

Excellent work!!

I am perplexed by the ortho's comments. I don't know the figures offhand but it might be that a majority of kids with a ~30* even at a low Risser do not progress no matter what you do or don't do. It can't be most progress. I think the odds are in your favor on this but I don't know that. Yes any curve almost "may" progress but the question is what is the probability.

Your daughter's plan is sound (no pun intended). :-)

[rohrer01]

There is evidence JIS and AIS behave differently to bracing.

Bracing has been shown to reduce JIS curves but not AIS curves.

This reveals them to be extremely different animals in my opinion. Response to bracing is as much a difference as is age on diagnosis.

I may be jumping in here where I don't belong. But I have been saying what Tom is saying about AIS and JIS all along. The difference in bracing success may be as simple as when the diagnosis is made. It seems logical that the more growth is left, the more success you will have with a brace. If, for example, I had been diagnosed at 8 years old when I started having pain (meaning pathology had to have been going on BEFORE age 8), bracing may have been successful, IF they could invent a brace that would even touch a curve like that. BUT, since I was not diagnosed until age 16 when I had nearly reached skeletal maturity, there was no room left for correction. I believe that correction from a brace strictly comes from straightening a spine while it grows. Otherwise, what have you to work with? Bracing an already mature curve seems, in my opinion, to be more harmful than helpful because of muscle atrophy unless you have a dynamic brace that allows the muscles to continue working. All of these things MUST be considered, and unfortunately are not by the majority of the medical community. So are they really two different animals, or is it just a matter of when treatment begins? I think there ought to be more screening at younger ages. Some JIS cases do straighten out on their own, as in the case of my son. But some do not. They need to be followed while there is still sufficient growth left.

Another thing that I am wondering about Chiari 1 malformations and scoliosis is whether a true Chiari has to exist in scoliosis related Chiaris. The only reason that I mention this is because of "noticing" low lying cerebellar tonsils on my own MRI and then reading the criteria for a true Chiari. How many people (JIS, AIS) with scoliosis have low lying tonsils as compared to the general population? Of course, someone has to draw that line in the sand as to what criteria is needed to diagnose a true Chiari 1 malformation. But after observing what the medical community considers to be a "normal" brain within the skull, all of the information I have seen shows NO low lying tonsils. So, even if there isn't a true herniation, as in the case of Tamzin, is there enough correlation to show a relationship between low lying tonsils and scoliosis? I don't think they even look at that in most cases. In my opinion, I think that relationship should be invesigated.

In Tamzin's case, however, there seems to be a difference because she has such a large herniation. It makes me wonder which came first, though. Once the herniation is there, structures will grow around the altered anatomy, in essence keeping the herniation in place. On the other hand, I have heard of cases where there is straight Chiari 1 with NO scoliosis. So in that sense, are these two separate entities or are there cases where one causes the other? I think of the string of beads scenario. If you have a relatively neutral string tension (spinal cord) the beads (vertebra) are able to move in a normal fashion. If you tighten that string (perhaps by quick growth of the vertebral column), then the beads can start to buckle causing scoliosis AND Chiari or low lying tonsils. On the other hand, if a Chiari or low lying tonsils develop (perhaps by rapid brain growth at a very young age) that would loosen the string, also allowing the beads to buckle. In the cases where there is no scoliosis found, I would still wonder what kind of tension there is on the spinal cord and if there is a way to measure that. I'm just thinking out loud here. But I know for a fact that they don't check every scoli kid for cebellar tonsil placement. I'm doubting if there is even any literature on it, otherwise it would be routinely checked. Just thinking out loud so pardon me if I sound, well, ignorant.