spinecor

[emarismom]

Just an update-

Emily now 11 1/2 had an oob yesterday. She is currnetly at 29 degrees, so she is inching upwards. Over the three years in Spinecor she has increased a total of 8 degrees. Obviously during that time there has been considerable growth- approximately 6 inches.

While I am not happy, it could be worse considering. Got a new brace as she has outgrown the old one and with this number at this age I have to do something.

[beauvais]

I can't possibly read all these responses, but in reply to your initial question, my daughter used Spinecor for a year and progressed quite a bit, but may have progressed anyway. She's now in a Cheneau and improving. As with all things, Spinecor has its pros and cons (one pro is definitely the "soft, flexible" aspect). Although, at 8 years old, it took my daughter a total of 2 weeks to adjust to her Cheneau and now she forgets to take it off for her allotted 2 hours a day and just wears it around the clock. I've had some slightly negative interactions with the Spinecor folks, but I still think what they have going on has great potential, especially for the very mild curves.

[michael1960]

My daughter has been in the SpineCor since Nov 2009. She was at 36 degrees (oob). She has consistently been at about 30 degrees (Jan 2010 and Mar 2010 measurements).

Dr. Betz recommended a Boston brace to reduce her curve below 30 degrees so she can be considered for VBS (staples only) vs VBS with Hybrid Rod. He approved her wearing the SpineCor to school and sporting activities and the Boston brace at home and at night. She is about 18 degrees in the SpineCor brace and about 13 degrees in the Boston brace. She may be a bit more in the Boston brace now as we have started to tighten it beyond where it was when she was first fitted.

Prior to considering VBS I had already considered a Cheneau brace (instead of the Boston brace). I was planning on having her wear the Cheneau brace part-time like she is doing with the Boston brace.

The reason for considering the Cheneau brace was my concern on whether the SpineCor brace could hold an aggressive curve or hold the curve during the significant growing years (beginning around 11). I had planned on switching to the Cheneau brace full-time.

But for now we are trying the SpineCor and Boston braces and I look forward to see how she is doing at our next checkup in May.

Tina - I would be interested in the main reason you chose the Cheneau brace over any other brace. Was it due to the design of it or that it seems to be highly recommended with Schroth exercises? I had thought about it because I had seen some great correction with it and it seems to allow for some space for breathing. The Boston brace is very tight in the front against the chest.

Michael

[jillw]

Hi Emarismom! Sorry that she has crept up, but am glad that for the past three years it has stayed under 30...just curious, how had her in brace xrays been during the time frame? in other words was her in brace xray consistent, or did her in brace xray also creep up from whatever the low measurement she's gotten in brace?

When you say a new brace, do you mean a new spinecor brace because of all her growth? or do you mean another type of brace altogether? Either way, good luck!

This is a scary age, isn't it?...of Emily's 6 inches of growth has it been spread out or have you noticed faster growth more recently? My daughter will be 10 this summer so could start to grow faster soon (or not- i suspect she may end up hitting that growth spurt late)

[emarismom]

Emily's in brace rays have ranged from about 16 to 21 over the years. The most recent one being Nov. 09 at 17 degrees. I have been alternating in and out of brace xrays every 5 to 6 months.

We did get a new Spinecor brace. When I go to see her ortho I will see what he suggests at this point and go from there. Her old Spinecor brace was getting too small.

Emily's growth has been spread out, which I think is a good thing. I am very nervous at what the next year holds as she does seem to be getting taller lately. She is 4'9 now and maybe just at a Risser one. Alot of growth is left.

[CAmomof2]

Well, as you can see from the signature, our daughter's curve is increasing despite wearing the Spine Cor brace. She grew 8 cm last yr., so I think the brace is just not "strong" enough to hold her anymore. She is due for a new brace, as current one is getting too small, but we are proabably going with something else - considering VBS. Hope everyone is doing well.

[michael1960]

CAmomof2

My daughter is 8 1/2 and has been in the SpineCor brace since Nov 2009. She was 36 deg Oct 2009. We met with Dr. Betz Feb 2010 to discuss VBS. He suggested a Boston brace to try and hold/reduce the curve. She started Boston brace Mar 2010. She is wearing the SpineCor to school and sports and the Boston brace at home/night.

My plans were to switch her to a hard brace (if still bracing) when she started her growth spurt (around 11). It looks like your daughter has already started her growth spurt. While the SpineCor brace has been good for us I have very little confident in it being able to hold a curve during the growth spurt years (i.e. 11-13).

At 35 deg (if that is thoracic) your daughter is at the upper level for VBS (without the hybrid rod). I don't know if you have already been working with a VBS doctor but I would assume he/she might recommend a hard brace ASAP to stop any additional curve progression (to keep her at or below 35).

Since my daughter has already reached 36 Dr. Betz suggested VBS/Hybrid Rod. However, if she could get back down below 30 for a period of time he would consider VBS (without the hybrid rod).

Right now her 36 deg curve T4-T12 is about 24 but within the T4-T12, the largest curve is now about 28-30 at T5-T10. I think the Boston brace is really going to help her. She gets much better correction in the Boston brace than the SpineCor brace. We get our next set of measurements in June. We have also considered a Rigo-Cheneau brace, especially if we plan on bracing for a longer period of time.

Please let me know if you have any questions.

Michael

[mariaf]

CAmomof2,

As you can see from my signature, my son had VBS over six years ago - and I would be happy to answer any questions you may have. I think now is a good time to seek an opinion if you are interested in VBS. As Michael pointed out, 35 degrees is generally the cutoff for VBS alone, although each case is evaluated individually in all respects.

The contact information for the team at Shriners in Philly (where the vast majority of VBS surgeries have been performed) can be found in my signature.

Best of luck to you and please keep us posted!

[Back-out]

I was looking into a Spinecor brace for myself (c/o Dr. Deutschman and partner), and although this is the adolescent thread I have a comment about the mechanics of presenting the posts.

I was (AM, though to a lesser extent) interested in the Spinecor though I decided against for now. Its pain relief wasn't as great as I'd hoped and not being able to get even a rough idea of insurance coverage through my out of state plan, I couldn't make the needed cost:benefit calculation So I was out $450 (!)

But I was interested enough to read about it. Delving into the adolescent thread was just a whim, but I was overwhelmed by the impossibility of taking advantage of it. A thread hundreds of pages long, is impossible to read. Mightn't such out of control threads be broken into useful bites to benefit someone interested in a Spinecor (~$5K, plus transportation), or any special product or treatment,?

I can easily imagine how such threads evolve over time, but perhaps they could be modified for access of information. The search function can help, but only to a limited degree.

Perhaps they could be divided into "chapters" according to chronology or sub-topics? After X numbers of pages or months, they could be stopped and resumed. Or maybe there are logical breaks by contents here and there (?).

Most useful for the reader (and practicable for the site), perhaps each respondent could fill out a short rating summarizing their experience with Spinecor (or whatever treatment or product is under discussion as Amazon and other online review sites do.

Then the user's overall comments could be headlined and grouped by that short scoring system so we know whether their experience was mostly a) positive, negative, mixed (or neutral). There are better groupings too, such as specifics of level of pain reduction, (net) curve response (curves were reduced, stabilized, grew worse) and so on.

Then readers could see overall response categories and sample from group responses, reading as much of their stories as we wanted to. It is very hard to make use of this compendium of information on any topic - in this format. This is a shame since it's potentially the most useful available, being both unbiased and empirical.

[cherylplinder]

Hello Spinecor users
I haven't been on the board in a couple of years but tuned in today and saw some of MJB's confusion.
My daughter had surgery in Feb of 2009. The last year, she wore the Cheneau brace.
Dr. Rivard told me he measures the same 2 vertebrae every time he measures a curve from diagnosis to end of treatment.
Other orthopedics measure the Worst 2 angles to access the curve.
That is one reason Dr. Rivard gets such different readings on his measurement of the curve.

Best Wishes

Cheryl

[Pooka1]

Hello Spinecor users
I haven't been on the board in a couple of years but tuned in today and saw some of MJB's confusion.
My daughter had surgery in Feb of 2009. The last year, she wore the Cheneau brace.
Dr. Rivard told me he measures the same 2 vertebrae every time he measures a curve from diagnosis to end of treatment.
Other orthopedics measure the Worst 2 angles to access the curve.
That is one reason Dr. Rivard gets such different readings on his measurement of the curve.

Best Wishes

Cheryl

Wow thanks for typing that. That perhaps exonerates him from outright malfeasance for now. There are now enough testimonials of apparently misread radiographs, one very recently from another group, that there had to be something going on.

But if he is doing that, he needs to state that in the journal articles. I don't recall if he mentions he is doing that. And if he doesn't mention it then there is a reason. I'm guessing that reason is that this is NOT the norm. Maybe other surgeons became wise to this and that is why the dismiss the Spinecor literature.

On the other hand, I have to wonder how much the two most tilted vertebrae change in the course of brace treatment. I question whether it changes much. That said, the Hawes article stated that some readers felt her end vertebrae changed but I think that is an unusual case for several reasons and was a longer time period.

So I am still somewhat skeptical that Rivard's explanation is really why there are any misread radiographs. And I still think there is a cloud over their literature.

[jillw]

CAmomof2,

It does sound like your daughter has entered a period of faster growth. I"m sorry to hear that her curve isn't holding. Good luck as you decide what to do next. Please keep us updated!

Cheryl, good to see you. How is Rachel, post surgery, doing these days?

[michael1960]

Cheryl

I am not sure what post you are referencing regarding MJB's confusion but you raise a point that I have asked on other forums: What is most common when measuring the cobb angle?

1. measure using the same vertebrae each time

2. measure the worst angle

3. or both

For my daughter I have worked with 4 orthopedic surgeons, 3 chirporactors, and 2 orthotists and it has not been consistent.

For example, OCT 2009 my daughter (8) was 36 degrees from T4-T12. By Jan 2010 it was 30 degrees (from wearing SpineCor brace). We did a two week PT treatment in January that reduced the T4-T12 from 30 degrees to about 24 degrees. But the T5-T10 increased from about 28 to 30. So, the original T4-T12 curve continued to decrease but there was an increase in the T5-T10. It is so important to know which vertebrae are being used.

And in March (after continued SpineCor brace and home exercises) the T4-T12 remained at 24 (we were able to maintain what we gained in Jan) and the T5-T10 was back down to around 28.

So, I have often asked others, when they say in their profiles the curve has reduced from 30 to 25 or 30 to 20, which curve is being measured (original curve or worse curve). Surprisingly, many do not know.

I guess I would conclude, for my daughter who was at 36 T4-T12 and is now at 24, that we are moving in the right direction and the treatment has been effective. However, when measuring the worse curve, we have gone down from 36 to about 28, still moving in the right direction, but not as low as 24.

When it comes to treatment decisions, like VBS, I assume that worse curve measurement T5-T10 would be used, regardless of the T4-T12 measurement.

When I evaluate a scoliosis treatment (PT, brace, etc.) I focus on both measurements. Largest curve we are trying to manage (36 deg at T4-T12 now at 24) and current worst curve (28 deg T5-T10) before and after treatment.

I have no perspective or comments on how this relates to Dr. Rivard other than Dr. Rivard seems to be consistent with some of the orthopedic and chiropractors that have been part of our treatment, and inconsistent with others.

I would be interested to hear the experience of others regarding how the cobb angle measurement is taken regarding original vertebrae or worse curve. For many, it may be the same. Maybe only during certain intensive treatments is there a chance that the original vertebraes no longer represent the worse curve.

Thanks
Michael

[LindaRacine]

The Spinal Deformity Study Group Radiographic Measurement Manual is the bible on curve measurement. In that manual it states:

The end vertebrae (EV) are the most tilted vertebrae on the cephalad and caudal ends of a curve. The neutral vertebra (NV) is the most cephalad vertebra below the apex of the major curve whose pedicles are symmetrically located within the radiographic silhouette of the vertebral body. To identify "the stable vertebra", first, a vertical reference line (CSVL) is erected from the mid-portion of S1. The most cephalad vertebra immediately below the end vertebra of the major curve which is most closely bisected by the CSVL is the stable vertebra (SV). Typically, the end, neutral, and stable vertebrae are different vertebral segments. However, the end, neutral and/or stable vertebrae may occasionally overlap in the same vertebra.

That's going to be next to impossible for a layperson to understand, especially without the diagram that goes along with it. However, it does tell us that curve measurements should be based on the specific films as opposed to using the same vertebrae for all films.

--Linda

[Pooka1]

The Spinal Deformity Study Group Radiographic Measurement Manual is the bible on curve measurement. In that manual it states:

The end vertebrae (EV) are the most tilted vertebrae on the cephalad and caudal ends of a curve. (snip)

(snip) However, it does tell us that curve measurements should be based on the specific films as opposed to using the same vertebrae for all films.

Okay this is as I suspected although I doubt the end vertebrae (most tilted) change in many cases except in unusual cases like Hawes where we are dealing with long periods of time and inordinate amounts of PT/massage.

Therefore there is ONE Cobb angle for any curve and any professional stating any more angles besides those measured in-between the two most tilted vertebrae is just obscurantism or misdirection or subterfuge something.

This alone and all by itself could explain why the Spinecor literature is dismissed by surgeons... non-standard method of measuring angles over time.

Now the quesiton is WHY do Rivard/Coillard use this non-standard method? I have a guess...

Also, do they state CLEARLY they are using a non-standard method? There may be blame in the article review stage for papers getting through with this issue.