Terminology – Diagnostics and Pathology Related to Scoliosis Causation

The following are some terms I’ve encountered in studies of potential causes for non-idiopathic scoliosis.  I will continue to expand this list over time.

  • Aetiology: A variant of etiology (see etiology, below)
  • Contracture: Muscle Tightening; a permanent tightening or shortening of a body part such as a muscle, tendon, or the skin, often affecting its shape.
  • Dystonia/Dystonic: a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movement or abnormal postures.
  • Etiology: Study of causation. The cause or set of causes
  • Osteopenia: reduced bone mass of lesser severity than osteoporosis.
  • Pes Valgus: “Bent foot” most often found on the side of the Thoracic concavity per page 67 of “Three Dimensional Treatment for Scoliosis”

Pes Valgus

  • Polyarthritis: Arthritis involving 5 or more joints simultaneously.  Some studies show a high incidence of scoliosis in polyarthritic patients, particularly where the hips, knees and ankles are involved.
  • Spina Bifida Occulta: A minor form of Spina Bifida, an open defect.  Some studies suggest a link as a causal factor for non-idiopathic scoliosis.Spina Bifida
  • Torticollis: also known as “wry neck” or “loxia”, is a dystonic condition defined by an abnormal, asymmetrical head or neck position, which may be due to a variety of causes.

Disclaimer:  I am not, in any way, medically trained and you should seek professional medical advice before making any decisions based on information found here.

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Our Trip to Spinal Dynamics – Part 1

A couple weeks ago, my family spent a week at Spinal Dynamics, in Milwaukee, WI doing primarily Schroth but also some SEAS physical therapy training for my daughters’ scoliosis.

For those who may not know, Schroth and SEAS (Scientific Exercise Approach to Scoliosis), as far as my research shows, are the preeminent physical therapy methodologies used, worldwide, for “conservative” treatment of scoliosis, used in conjunction with bracing, to help arrest scoliosis progression and avoid fusion surgery.

We worked with a physical therapist named Peter Arndt for 6 hours per day for 5 days. It’s what they call their immersion program.  There’s a lot to say about this, particularly for others who may be considering trying Scroth or SEAS physical therapy for scoliosis, so please bear with me as I expect to write multiple blog entries on this topic in the coming weeks.

About the intensity of the immersion program, I think they may typically only do 5 hours per day but I told them in advance I wanted to be aggressive and that my girls were well conditioned from both heavy and regular core exercises, that I already had them doing for the last few months, and cross-country running. I don’t say any of this to brag about our preparedness but only to give the reader a “heads up” that these exercises take a lot of strength and endurance if you do them right.  Normally, for people who live close to the therapy provider, they just do a couple to a few hours per week over a longer period of time.  These “crash courses” are for people who don’t have that luxury of convenient location.

Still, this was a tough week and the girls were definitely spent by the end of it. It helped a lot that we had planned to get new puppies on the way home, and also planned a mid-week celebration by going to Dave and Buster’s on Wednesday evening.

The girls' new puppies!

The girls’ new puppies!

It also helped that I read “Three Dimensional Treatment for Scoliosis” beforehand.  It’s not an easy (or pleasant) read, and you should really have Google handy to look up medical terms as you go, but it’s worth it.

3d treatment book

There are other locations where you can find Schroth therapists but Spinal Dynamics and Scoliosis Rehab, both located in Wisconsin, are the most highly reputed in the US. Both actually provide Schroth training to other therapists.  I chose Spinal Dynamics because they were the only one where the therapists had SEAS as well as Schroth certifications.  And, Peter, in particular, is a DPT.  After the fact, I’d say I didn’t find as much value in the SEAS aspect as I had hoped, so there’s less to distinguish one vs. the other provider.  If considering traveling to Wisconsin for therapy, I’d recommend checking out both Spinal Dynamics and Scoliosis Rehab, and considering their slightly different “immersion” programs, before making up your mind.  For our part, I can tell you we are extremely happy with the training we received from Peter at Spinal Dynamics and all they did to put the girls at ease and help us get through such an intense week.

If not wanting or able to make that trip, other Schroth certified therapists can be found here and here.

There’s much more to be said about Schroth, SEAS, and the idea of using physical therapy to combat progressive scoliosis. But, for now, I’m going to leave you with these thoughts on why we went.

The goals for the week were for my daughters to learn to perform the exercises and for me to learn to coach and correct them when they lapse into doing them incorrectly. If you’re a parent reading this, you need to know the immersion week is as much about you as your child.  You must learn how to coach the proper techniques to make sure the exercises are done consistently and correctly.

The goal of the therapy is, of course to help halt the progression of the scoliosis, particularly through the growth years. In our case, our twin daughters are 12 and are in their peak growth time.  The next two years are critical.

More details to come…

Disclaimer:  I am not, in any way, medically trained and you should seek professional medical advice before making any decisions based on information found here.

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Scoliosis Measures to Track

As a parent or patient with AIS, you want to be able to answer questions like:

  1. Is a curve progressing?
  2. Is it progressing more during growth periods?… how much per inch of growth?
  3. How effective is a new brace?
  4. Is a brace effective for all components of the curve, or curves?
  5. Is the trunk rotation changing?
  6. Etc.

To be prepared to answer these, and more, I recommend keeping a spreadsheet with the following items.  I’ll provide some explanation of the less obvious items further below.

  1. Height, at least monthly (in and out of brace)
  2. Weight, at least monthly (out of brace)
  3. Cobb angles
  4. Cobb angle component parts
  5. Trunk rotations (Thoracic and Lumbar if applicable)
  6. Hip Height Discrepancy, if any
  7. Brace effectiveness percentage(s) for each curve

*Also capture important milestones such as getting a new brace, etc.

About Cobb Angles

At some point, I’ll do a post on how you can measure Cobb angles for yourself. Meanwhile, you should track every Cobb angle measure provided by your doctor.  And, of course, if you have an “S” curve, you’ll have two Cobbs per x-ray to track.  Be sure to always note whether they are in or out of brace.

Cobb Component Angles

Though everyone talks about Cobbs, few consider their component parts. A single cobb angle, for example, is comprised of two angles… the upper and lower.  An “S” curve has three angles.  These are the upper thoracic, transitional, and lower lumbar.

I measure these as relative to 90 degrees from a vertical line. In the below example, from one of my daughters’ x-rays, the upper thoracic is 101°. The transitional is 102°, and the lower lumbar is 99°.  The upper and transitional comprise a 23° thoracic Cobb ((101-90)+(102-90)) while the transitional plus lower lumbar make for a 21° lumbar Cobb ((102-90)+(99-90)).

Bella 3-18-14 Example2 Edited

(Note: I admit, with the above, that my confidence level is lowest on the upper thoracic angle due to the “blurring” effect caused by the spinal rotation in the area. It’s hard to get a clear alignment to the vertebra tops or bottoms)

Why care about the component angles? We recently got new braces.  When we first got in-brace x-rays for Bella (a pseudonym), it appeared we were getting very good correction of her thoracic Cobb.  But, upon closer inspection, I found that only her upper thoracic component angle was impacted because the brace was forcing her shoulder up.  Both her transitional and lower lumbar angles were completely unaffected by the brace.  Putting this another way, the lower part of her thoracic curve wasn’t being helped and her lumbar curve wasn’t helped at all.  Breaking this down into components really helped us understand what was happening.  The orthotist ended up making significant adjustments such that all component angles were, later, shown to be improved.

When I show how to do your own cobb angles, you’ll be able to capture the components for yourself. Otherwise, you’ll need to see if the doctor is willing to provide these.

Trunk Rotations

How to measure trunk rotations (e.g. with a scoliometer) is described in the post on screening. Just keep in mind that you may have a rotation in lumbar area as well as the thoracic area, so measure both regions.

An example of my notation for trunk rotation is 9°+L, which means the rotation angle is measured at 9° with the higher side being on the Left.

Hip Height Discrepancy

Also known as leg length discrepancy, because it appears as such though the problem may not be with the legs, scoliosis is often accompanied by an apparent imbalance of the legs or hips, resulting in an “uneven foundation” for the spine. One of my girls has a 1cm discrepancy which is fairly substantial.  It’s a material data point so I track it.

This is typically measured by comparing the tops of the left and right ilium (iliac crest).  My notation example: .8cm +L means the top of the left ilium is .8cm higher than the right.

Brace Effectiveness

Using measures from in-brace x-rays, I calculate the effectiveness of a brace on each curve relative to the last out of brace x-ray of that curve, as a percentage. I simply label the Thoracic and Lumbar correction columns as T% Correct and L% Correct, respectively.

Example Tracking Sheet

Slightly modified for illustration, the below is an example excerpt of the spreadsheets I’m keeping for my daughters. I’ve chopped this into two tables to fit below and maintain readability.

History Table2

Of course, you can track whatever you want however you want. This is just how I choose to do it.

Best Regards

Disclaimer:  I am not, in any way, medically trained and you should seek professional medical advice before making any decisions based on information found here.

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The Great Scoliosis Conundrum

One of the most frustrating things about scoliosis is the uncertainty.  As a parent of children with scoliosis, it can be maddening.  The root of the problem is that there is no way of knowing if a curve will progress aggressively… or not all.  You could do nothing, and it could never progress a single degree, or you can do everything and it can progress to the point of requiring fusion surgery.

Yet, this does not mean the curve is beyond influence.  There’s ample evidence that various treatments, including bracing, therapy, and even some surgical techniques short of fusion, can slow or halt curve progression … and even some evidence that diligent therapy may help reduce some curves, as can VBS and VBT surgeries (more on these another day).

There is a genetic test, called ScoliScore, that claims to predict the risk of progression but there’s insufficient evidence, in my view, and the view of several doctors with whom I’ve discussed it (or read their analysis), to rely on this, yet.

So, meanwhile, the best we have to go by are imprecise tables, like the below, that make broad generalizations about the percentage risk of progression based on age and present cobb angle.

progression risk chart ais

Having curves in the upper 20s, and being 12 years old, that probably puts my daughters at about a 70% or 80% chance of progression, if untreated… and I would say, “if not effectively treated”.

Clearly, there are no guarantees, either way.  We can treat and progress or we can do nothing and still have a 20% chance that they will stabilize.

My approach is to err on the side of aggressively doing everything we possibly can to reduce the chances of our daughters ever having fusion surgery. While that may seem obvious, this is not without a cost… and I’m not referring, here, to the substantial financial costs of braces and physical therapy that are inadequately covered by insurance, when covered at all.

I’m referring to the emotional costs to children and parents alike.  Our daughters must suffer through 21 hours per day of bracing and lose over a half hour a day of their leisure time to monotonous therapy exercises and stretching.  We spend our vacation time traveling to orthotists and scoliosis therapy specialists where, there again, we must subject the girls to activities which we’ll just call “unpleasant” for them.

All this for… who knows?  No one will ever be able to look at us and say, “Your daughters would have required fusion surgery if you hadn’t done all that and put them through all that.”  We must accept that we’ll simply never know.  All I know is that I’d rather see them avoid fusion surgery and never know if what we did made the difference, than see them have that surgery and be left to wonder if we could have avoided it if we had tried everything we could.

Disclaimer:  I am not, in any way, medically trained and you should seek professional medical advice before making any decisions based on information found here.

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Scoliosis Screening – What Parent’s Need to Know

Parents should screen their children for scoliosis at least a couple times a year.  I recommend putting it on your phone and/or wall calendar (maybe in January and July?). Do it now…. Seriously, right now… mark your calendar now then come back and read about how and why to do it… I’ll wait………………

Don’t just rely on schools or pediatricians to do this screening and, even when they do, don’t rely on them to interpret the results.  That’s not a slam but this is important and, as you’ll see, there’s plenty of room for confusion on the subject.

(Before going further, see ATR and Cobb Angle in my post on Scoliosis Terminology)

There are various things to look for, like uneven shoulder height, holding the head to one side, etc, but screening for scoliosis is typically done by schools or pediatricians with the “Adam’s forward bend test” with an ATR Tool (dominant brand is the Scoliometer).  A common misconception is that this test is looking for a spinal curve when, in fact, it’s looking for the trunk rotation that accompanies the scoliotic curve.  As the spine curves to one side, the vertebrae also rotate in that same direction.

Rotation is most noticeable in the thoracic region because those vertebrae are connected to the ribs which are pushed backward on one side, creating a “rib hump” and also pushing the scapula outward, causing one scapula to be more prominent.  If, when bent over, you see that the upper back is higher on the right side, for example, the patient almost certainly has a right convex thoracic scoliotic curve.

The distinction of rotation vs. curve is critical for determining when to just observe vs. when to take further action.  There are different guidelines for further treatment based on the degree of rotation (i.e. >7 degrees) vs. the degree of curve (i.e. >20 degrees).  Given this, it’s easy to see a potential for confusion if a person thinks an 11 degree Scoliometer reading, for example, means they are well under the 20 degree guideline for a curve requiring treatment… Apples and Oranges.

Say it with me, “trunk rotation is different than curve.”  Further, the trunk rotation measure is typically (maybe always?) much lower than the degree of the associated curve.  Consider the example of one of my daughters.  When her curve (cobb angle) progressed to 29 degrees, her ATR as measured by a Scoliometer (verified by myself and a doctor) was only at 7 to 9 degrees!!

You read that right…  If you have a son or daughter with a 7 degree rotation measured by a Scoliometer, they could already have a 29 degree curvature of their spine!  See a doctor and get an x-ray!

About Measuring Trunk Rotation…

Degree of Trunk Rotation is typically used for scoliosis screening because it is more easily spotted than the actual curve and can be measured without an x-ray.

web pic

Clicking on the above Scoliometer, will take you to the official guidelines for it’s use.  As you can see, they say you should seek further evaluation if the scoliometer reading is >7°.  I, personally, disagree with waiting that long, particularly for girls (more likely to progress) and particularly for anyone with a family history of scoliosis.  Remember my daughter’s Scoliometer reading was still only 7° with a 29° curve.  If you consider that many doctors start bracing at >=20° curve, waiting for a 7° rotation could be 9° too late with regard to the actual curvature.

I really don’t know what Scoliometer reading level to recommend as the litmus, but I’d certainly recommend an x-ray to check cobb angle at something less than 7 degrees rotation.

Where to get a scoliometer…

You can buy the physical device at various websites.  Expect to pay $45 to $50.  I’ve seen some with outrageous prices.

Also, you can find various apps for smartphones that do the same thing (some are free).  Two tips regarding using a smart phone app as an ATR.  1) It doesn’t have to be a scoliometer/scoliosis app.  Any app that works as a level and gives the variance in degrees of slope would do.  2) a physical ATR, like a Scoliometer, has a gap in the center of the bottom to make room for the areas of the spine where the vertebrae protrude.  When using your phone, you need to position your thumbs under the corners in a consistent manner to avoid the protrusions.

See it done…

The Texas Scottish Rite Hospital has an excellent screening summary with a video showing the use of an ATR tool, found here.

Disclaimer:  I am not, in any way, medically trained and you should seek professional medical advice before making any decisions based on information found here.

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Terminology – Positional and Directional

Whether describing the condition itself, or positions or movements required for therapy, many important anatomical terms come into play for scoliosis, making it easy to get baffled and confused.  Hopefully, this reference will help.

To avoid redundancy (referencing many of the terms with “see illustration for Planes”, just note that many of these terms are illustrated there.

  • Antero/Anterior – Frontal or toward the head (opposite of Posterior)
  • Caudal/Caudally: Caudal, essentially, means “the tail”. In practice, this means toward the feet, in humans.
  • Coronal Plane: (aka Frontal Plane) Side to side.  The scoliotic curve is in this plane
  • Cranial/Cranially: Toward the head. Opposite of Caudally.
  • Planes Illustration

Planes

  • Posterior: behind or toward the back or bottom (opposite from Anterior)
  • Prone: Laying on stomach
  • Sagittal plane: Vertical Front to back.
  • Supine: Laying on back
  • Transverse plane: A horizontal plane.  While coronal and sagittal planes are typically referenced relative to center, the transverse plane may be relative to a specific horizontal “slice”, such as the plane at the T4 Thoracic vertebra or possibly at the knees… wherever.

Disclaimer:  I am not, in any way, medically trained and you should seek professional medical advice before making any decisions based on information found here.

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Terminology – Growth Potential

Remaining growth potential is a critical factor for scoliosis patients.  The more growth remains, the more potential there is for the curves to progress (get worse)… but also the more opportunity there may be, with treatment, to help correct curves while still growing.

(click illustrations to see their source)

  • Bone Age Study: Less commonly used than RISSER and TRC, an x-ray of a hand can be used to do a bone age study to determine the skeletal maturity of the patient.  You can read more on this here or otherwise search on “bone age.”
  • Lonstein and Carlson model : Model for predicting curve progression using RISSER sign, Cobb angle, and age, but has not been replicated by others to show accuracy.
  • Peak Height Velocity: Way of measuring remaining growth, e.g. those in study ceased growing 3.6 years after reaching peak height velocity (http://jbjs.org/content/82/5/685)
  • Risser Sign (or score): The Risser sign is the most commonly accepted and referenced method for determining how much growth remains.  Per wikipedia, it refers to the amount of calcification of the human pelvis.  On a scale of 5, it gives a measure of progression of ossification; Risser sign is based on the observation of an X-ray image. Grade 1 is when the ilium (bone) is calcified 25%; it corresponds to prepuberty or early puberty.  Grade 2 is 50% and corresponds to the stage before or during growth spurt.  Grade 3 is 75% and corresponds to the slowing of growth. Grade 4 is 100%; it corresponds to an almost cessation of growth. Grade 5 corresponds to the end of growth.

risser

TRC

 

Disclaimer:  I am not, in any way, medically trained and you should seek professional medical advice before making any decisions based on information found here.

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