spinecor

[Pooka1]

You know, between the first hand accounts of mis-measuring Cobb angles and then this, it should not be surprising why the rest of the orthopedic community seems to dismiss the Spinecor literature.

As a researcher albeit in a different field, I would stop reading the papers from this group if this were my field FULL STOP.

[hdugger]

On misreading Cobb angles.

My *previous* ortho doctor told us one year my son's curve was 47 degrees, then the next year told us it didn't look like his curve had increased, except this time he measured it as 59. When we asked him how that could be, he went back and looked at the first xray and said "Oh, I guess I picked a different vertebrae."

Just to say, sometimes people just don't seem to be so good at measuring

[Pooka1]

On misreading Cobb angles.

My *previous* ortho doctor told us one year my son's curve was 47 degrees, then the next year told us it didn't look like his curve had increased, except this time he measured it as 59. When we asked him how that could be, he went back and looked at the first xray and said "Oh, I guess I picked a different vertebrae."

Just to say, sometimes people just don't seem to be so good at measuring

Yeah but with some it probably always goes in one direction. The residuals are not random.

[mariaf]

Exactly.

I totally understand how, by using different vertebrae for example, measurements can vary depending on the person reading them and other factors (usually the variance is minor which is I guess why they came up with the 5 degree margin of error, instead of say, 10 degrees).

That said, there is a definite pattern here. It's seems to be the same story over and over - and sadly, it's the children who are paying the price.

[Pooka1]

When researchers are at the point of throwing 8 year olds under the bus, they have lost all objectivity. They should step back and reassess.

The papers from that group are, and will continue to be, GIGO in my opinion.

There is a reason why the bulk of orthopedic surgeons have not jumped on the Spinecor bandwagon and I'm willing to bet it is lack of positive results in the AIS crowd.

JIS an adult are the only hopes for Spinecor in my opinion.

[mariaf]

There is a reason why the bulk of orthopedic surgeons have not jumped on the Spinecor bandwagon and I'm willing to bet it is lack of positive results in the AIS crowd.

Yup, that's what Dr. Betz told a parent recently - that he hasn't seen anything that shows the brace's effectiveness so he doesn't prescribe it.

Also worth noting, we have compiled a list of doctors who perform VBS on the VBS website. These are names I think most folks here would recognize, and not just guys at Shriners (names like Oswald, Skaggs, Hresko, Lubicky, Vitale, Hanson, Durrani, etc.).

To my knowledge, not one of these guys prescribes Spinecor. That despite the fact that many of them, like Vitale for example, specialize in JIS so they obviously don't even feel it is worth using in these cases.

Makes you wonder..........

p.s. I agree that Spinecor's usefullness may come in the form of pain management for adults - a few folks seem to get relief from wearing the brace and if they can reduce their pain, that's a wonderful thing. Also, I'm wondering if Dr. Rivard's bedside manner (or lack thereof, based on how he spoke to this 8-year old) is better suited for adults anyway.

[txmarinemom]

There is a reason why the bulk of orthopedic surgeons have not jumped on the Spinecor bandwagon and I'm willing to bet it is lack of positive results in the AIS crowd.

Actually, quite a few orthos tried it ... but quickly jumped OFF the bandwagon. And you're exactly correct on the reason ...

[jillw]

MJB, I think you are taking the right first step in getting an out of brace xray to see what you are working with. I'm guessing that since there has been progression in brace (more than a few degrees), you will see progression out of brace as well - an xray is the only way to find out. Hopefully it won't be too bad. As you point out, with your daughter at or nearing her peak growth you have some decisions to make. Maybe you'll be surprised and her out of brace curve won't have progressed, but I would be surprised to hear that. If it has progressed more than a few degrees from where she started, it would make me think that the spinecor brace isn't going to hold her curve and its time to re-evaluate. I understand why you'd want to avoid a TLSO since she still has so many years of bracing ahead of her - but if she is wearing one and it is working, perhaps the time could be cut down to something more manageable, or maybe night bracing would do it which would vastly minimize your concerns about muscle atrophy since we don't use many muscles when sleeping anyway. Also, as Maria points out, VBS is an option. Unfortunately there are no guarantees. There are people who were progressing in hard braces and switched to spinecor - in some cases spinecor didn't do any better than the TLSO, in other cases its doing the trick so far, but the child isn't done growing so the jury is still out. Conversely, there have been children who have switched from spinecor when it wasn't working to a TLSO or they have had VBS and then continued to progress anyway. As others say, there are some curves that won't be held. I hope this isn't the case for your daughter.

I wonder how many orthopedists (regardless of which brace they prescribe) who had children whose curves were progressing in TLSOs recommended alternative treatment - a different brace or something. Anecdotally it seems like many just hope for the best. The thing that I like about VBS as an option, is that if it isn't working, you can try bracing in addition to the VBS. Maybe a brace alone wouldn't work and VBS alone wouldn't work, but the double whammy can do the trick. There have been cases where kids who had VBS had curves that were progressing despite the VBS who started wearing a brace again. In many of these cases the combination treatment was able to reduce the curve thus far. And often these children only need to wear the brace at night which is much more manageable. Good luck with your appointment today. Let us know what you find out. I do think that even if her curve hasn't progressed much out of brace, that your gut instinct is probably on target. Her large growth spurt is upon her and the brace wasn't holding it....I'd try for something else.

I have wondered in the past if a hard brace at night along with spinecor by day might be an option for those in the adolescent growth spurt who have shown some progression (assuming that her curves have only increased a minimal amount. ) There's actually a parent i heard of who is trying it - it will be interesting to see how it works out.

Good Luck.

As Maria said, a visit to Dr. Betz could be very helpful since he is one of the only doctors who don't think that a rigid brace is the only way to go (other than the folks in MOntreal). He understands your concerns about quality of life and tries to customize a treatment plan that might involve VBS or VBS with rods or VBS with bracing or bracing without VBS, etc. Also, as Maria said, Dr. Betz had told a parent that he hadn't seen results with spinecor - however, in fairness, he also said that hadn't seen that many patients who had used spinecor. I forget the number, but it was only in the mid-teens. And there is a bias of sorts...those who had success with spinecor are less likely to have visited him. Just like to read these boards one gets the impression that many of the children who were fused end up as adults requiring revision surgery or are living with chronic pain and other side effects. I really hope that isn't the case, I'm guessing, but not assuming, there are a multitude of adults who were fused as children who are doing fine decades later...they just are much less likely to have sought out these boards and to be posting here since they don't have problems. Another sort of bias.

[jillw]

MJB, a follow up thought...like VBS, spinecor sees the best results with smaller curves. Given that your daughters curve started at 32 degrees, even if she has only progressed a few degrees out of brace, her curve will be beyond the size that spinecor seems to have more success controling. That might be another reason to consider alternate treatment - again, i'm assuming that an in brace curve increase has to mean an out of brace curve increase also, but you will know for sure today.

[mariaf]

Also, as Maria said, Dr. Betz had told a parent that he hadn't seen results with spinecor - however, in fairness, he also said that hadn't seen that many patients who had used spinecor. I forget the number, but it was only in the mid-teens. And there is a bias of sorts...those who had success with spinecor are less likely to have visited him.

Hi Jill,

I agree with you that sometimes we see a bias because, for instance, folks seeking support here or seeking additional opinions from specialists, are often the ones for whom their current treatment method is not working.

That said, I get the impression (I could be wrong) that Dr. Betz came to this conclusion not only from the patients he has seen personally, but also from general information out there. I know for instance that he keeps current and shares facts and patient experiences with a whole network of doctors. For example, he is - as he put it - "a good friend" of Dr. Vitale. He also works closely with others (like Dr. Luhmann and Dr. Durrani just to name a few) in this respect.

So, my guess (and that's all it is) is that Dr. Betz's conclusion is not only the product of his experience, but more likely the consensus among this whole network of doctors.

Again, I could be wrong and it is of course just my two cents

[Pooka1]

So, my guess (and that's all it is) is that Dr. Betz's conclusion is not only the product of his experience, but more likely the consensus among this whole network of doctors.

This is precisely the sense I got from our surgeon about the consensus of the pediatric orthopedic community.

[mariaf]

Hey Sharon,

I noticed in your signature it says "now 50". I think we've had this conversation before, that we were very close in age - and I guess you just beat me - I turn the big 5-0 in two days!

Happy Belated Birthday

[Pooka1]

Thanks Maria. I turned 50 in January.

I remembered that we are very close in age.

Have a great birthday! I hope you do something fun.

[mariaf]

Thanks, Sharon. I knew you were only a month or two ahead of me

[jillw]

Sharon and Maria, congrats on the 1/2 century club ( a couple days early for you maria)

Maria, I hear what you are saying and that is a valid point. However, I would be curious how much experience the other doctors in Dr. Betz's network have had with spinecor.

Also, I feel terrible for MJB's experience - but I am surprised to hear it. We have found Dr. Rivard to be very compassionate and willing to answer detailed questions. Very kind to Katie. Quick to respond personally to emails or phone calls between visits. They are also very tuned in to how a child with scoliosis feels - this is what lead to the invention of spinecor (and numerous parents I have been in contact have told me of similar positive experiences)...much like Dr. Betz realized how hard it can be for some of these young kids to be in a TLSO for so many years. I would say maybe he was having a bad day, although MJB has felt like she hasn't had much of his time on previous visits also- and that is really a bummer. He does ask every visit how much she has been wearing her brace...i think that's a standard question he asks.
MJB, because the written word can be misinterpreted, I want to explicitly say that I'm not questioning your experience and I would feel like you did if I had a similar experience- I just wanted to point out that this is not how it always is for everyone in case anyone is wondering. I've been thinking of you today and wondering how it went...hopefully not too bad.