spinecor

[jillw]

Sharon, what research I had been able to find on the providence also indicated it was better for lower curves (it probably was the same studies). Also, although I haven't researched it since the fall, the research I found on the Providence Brace was published by the inventors of the brace also (D’Amato/McCoy – this is the same issue you brought up with spinecor). However, like spinecor, the brace is relatively new (compared to say the Milwaukee or boston). I’m wouldn’t be surprised if the initial clinical results on the boston brace (and others) were also published by the inventors. Then over time “independent” studies begin to be conducted.
The spinecor website indicates the need for independent results. It says
“Even though the effectiveness of the SpineCor brace is accepted world wide, we understand the necessity of collecting data from independent treatment centers to support the efficiency of the Dynamic SpineCor brace.
For this reason we are currently undertaking an International Multicenter Study, collecting results from independent SpineCor centers around the world, in order to reinforce those obtained at Sainte-Justine Hospital, upon which the effectiveness of the SpineCor brace is based.
If you are a SpineCor System prescriber or accredited professional and you are interested in taking part in this study, please contact us to receive the study protocol and detailed information about the project. “
Unfortunately I’m sure it will take years for these independent studies to be completed and be published (and I found it interesting that they used the words “in order to reinforce” the results found at St. Justines….instead of “expected” or “hypothesized” to reinforce).

Also, a big pet peeve of mine, Scoliosis Research Society protocol (which was followed in publishing spinecor clinical results) requires Juvenile scoliosis patients to be EXCLUDED from any of these publications. That leaves us parents of kids with JIS with ZERO research to base our decisions on, as Laura stated. I do believe that juvenile and adolescent are different animals to a certain extent (if only because of a higher risk of progression due to the extra years of growth). Therefore I understand that juvenile shouldn’t be pooled in with adolescent data; however, I believe that studies should publish 2 results – one for adolescent, one for juvenile instead of just throwing out the data related to JIS. This is NOT specific to spinecor – this was the protocol set forth by the scoliosis research society. I have been able to find just a few studies that ignored SRS protocol and addressed JIS specifically (or were published before the protocol were established). However those studies were usually VERY small. Oh well….

[Pooka1]

(snip)(and I found it interesting that they used the words “in order to reinforce” the results found at St. Justines….instead of “expected” or “hypothesized” to reinforce).

As skeptical as I am, I think this could easily be a bad translation. Scientists/doctors don't talk like that to my knowledge.

They probably should have used, "corroborate" or "further verify."

[jillw]

Sharon, good point

[Haleysmom]

New to the forum

Hi all.

I have finally got access! My daughter is 12 3/4 years old with a riser of 4. We patiently (stupidly) listened to various doctors to "wait and see" and that got us to t30 before we took control. We had Haley fitted for Spinecor two months ago and we are very comfortable with it. We chose Spinecor because it is giving her a chance to be the athelete that she is. She wears it for Basketball, and Volleyball, but takes it off for Softball (I don't want her sliding in it). I want to help design a swimming version because we do alot of boating! She is also in the new "adult" bottoms because she is already 5'6".

Since we braced her very late, I am looking for any others that are at the end of the recommended skelletal maturity. We are looking for stabilizaition only at this point, any correction would be a bonus. I see alot of younger kids and their results. I also joined so when I have my days that I worry constantly, I can talk to others that are in the same boat!

[MJB]

I was just talking about that the other day with family, they really need to develop a swim brace!!!!

Anyway, I can't help you with any advice but I am glad that you are here and that your daughter is doing well with the Spinecor brace!

Hi all.

I want to help design a swimming version because we do alot of boating! She is also in the new "adult" bottoms because she is already 5'6".

[emarismom]

Haleysmom,

Unfortunately most orthos do take the wait and see approach and this leads many children right to fusion. Most of them will say that since the research on bracing is not great, and bracing (with a hard brace) is such a diffficult treatment, they opt to just wait and see.

How does Haley like the adult bottoms? Those are like shorts right? We were offered those, but since my daughter was already adjusted to the brace, decided not to rock the boat.

[Haleysmom]

The shorts are tight like compression shorts. she has a bit of sorness where three of the straps are velcro'ed to the left hip, but that usually means it is time for a break in the day. But overall she likes them. She has been an amazing person thru this! She does take off all the straps to use the bathroom - she is not wearing a body suit and doesn't like to "pull the undies to the side". Because she is so active, the velcro straps were breaking free (which you don't want to happen in the middle of a Basketball game!). We adjusted by using the the 'belt' velcro to go over the straps to keep them attached.

Yes, it was the ortho's that had us wait.

[Pooka1]

I think it's the case that the majority of smaller curves like you daughter originally presented with don't progress. Someone correct me on that.

So in that sense, your daughter was saved from wearing a brace which, odds were at that time, she didn't need. Plus there is no guarantee the brace would have held the curve at a lower angle even if she was wearing one since diagnosis. Those two issues combined, when considered in light of the difficulty of wearing the hard shell braces and the general lack of data on all bracing, makes the watch and wait game viable in my opinion.

Good luck with your daughter. Thirty degrees can be stable. My daughter is (was?) at ~33 degrees and was stable for several months. Lately, though, I suspect she has progressed and is looking more and more like her twin who was fused this last spring. But I question the AIS diagnosis for my daughters vice having the skeletal indicators of Marfan's Syndrome. If true, apparently no brace would work and I will regret every second she was in the Charleston bending brace if she is fused.

Just another perspective.

[emarismom]

"I will regret every second she was in the Charleston bending brace if she is fused."



Pooka,

Didn't your daughter choose the bracing option? You haven't forced this on her. Nor have your daughter's been diagnosed with Marfan's Syndrome it seems. Since your daughter is wearing her brace only at night, it seems to me you are doing a great job of balancing what you **KNOW** at this time, with the possibilities of what COULD or WILL or WON'T happen in the future.

Having chosen the option of placing my daughter in the Spinecor at age 8, against the recommendation of her ortho, imagine the guilt I will feel if she ends up progressing to surgery in the future. If I think about the "regret" I would feel, well you may as well get my straightjacket ready now!!

You are doing a great job and certainly have nothing to regret!

[Pooka1]

(delete duplicate)

[Pooka1]

Pooka,

Didn't your daughter choose the bracing option? You haven't forced this on her. Nor have your daughter's been diagnosed with Marfan's Syndrome it seems. Since your daughter is wearing her brace only at night, it seems to me you are doing a great job of balancing what you **KNOW** at this time, with the possibilities of what COULD or WILL or WON'T happen in the future.

Yes she is gung-ho on the brace and it is her choice to wear it. And in re Marfan's, we have an appt. with a ped. cardiologist on Thursday for some heart/aorta imaging. If that is negative, I think Marfan's is ruled out per my reading because my girls don't have any eye problems or skin problems, at least to date. But I believe Betz says the kids with just the skeletal indicators who don't have Marfan's are pretty much in the same boat as the kids with Marfan's in terms of lack of efficacy of any bracing. That grinds on me. I have told Willow of this and she still wants to wear the brace. I just feel like were are on notice that the brace will likely not work.

Having chosen the option of placing my daughter in the Spinecor at age 8, against the recommendation of her ortho, imagine the guilt I will feel if she ends up progressing to surgery in the future. If I think about the "regret" I would feel, well you may as well get my straightjacket ready now!!

You are doing a great job and certainly have nothing to regret!

I think you have made good choices for your daughter, too.

I don't understand the point about your ortho being against the Spincor brace. I can see where the ortho might be skeptical that it works but it certainly can't possibly hurt!

Maybe I'm missing something.

[emarismom]

When I initially braced her the ortho "didn't think it was necessary" and "would have waited until we were sure she was actually progressing". He has agreed to keep seeing her, which I am thrilled about. (There is another one I have seen who probably would have thrown me out of his office for not following protocol).

At her most recent appointment, he was more amenable to the brace. He thought that since we have the brace, and she's used to it, there is no reason to stop using it. However, he is still not convinced that she needs it.

He did tell me that he had to respect my efforts and he wished more parents were like me.

[mariaf]

Sharon,

I agree with Emarismom that you have nothing to regret. Unfortunately, none of us have that crystal ball, so we do our best.

By the way, what skeletal characteristics did they feel make Marfan's a possible diagnosis for your daughter(s)? I know about checking the heart. And I believe that a tall/thin build is characteristic (although my hubby is very tall and was VERY thin and lanky in adolescence and early adulthood, until he put on some weight at middle age -and he doesn't have Marfans) so I guess a lot of folks can have the skeletal characteristics but not the syndrome.

You also mention eye and skin problems.

Thanks - I just like to educate myself as much as possible.

[Pooka1]

Maria,

Both the pediatrician and the ortho said they don't think my girls have Marfan's. But (ETA: At my request) the ped still gave us the referral to the ped. cardiologist and a geneticist so we could rule it out once and for all.

As I understand it, to be diagnosed, they must have a certain number of skeletal characteristics plus involvement of another system, either eyes (lens dislocation), skin, or heart/aorta. They have no eye or skin issues so that leaves heart/aorta which we will know by Thursday if they have.

The characteristics that they have include:

- scoliosis
- tall/thin
- pronated ankles
- flat feet
- arm span exceeding height
- arched palate
- mild/moderate pectus excavatum as toddlers (since totally resolved)
- long/slender fingers
- blue sclera as infants

It's quite the laundry list. I sent this to our surgeon and he still said he didn't think they had Marfan's. I hope he's right.

It's interesting to note that I have some of these - flat feet and arched palate - unfortunately NOT the tall/thin one! I'm 5' 6" and wear size 9/10 jeans so not thin unfortunately.

[mariaf]

Thanks, Sharon.

I hope your pediatrician is right as well (fingers crossed).

In my limited experience, it seems that MORE people/kids seem to have "Marfanlike" skeletal features and characterisitcs, but not the actual syndrome. As I said, my husband can be counted as having some of these features (tall and lanky, long fingers, etc.)