spinecor

[mariaf]

Hi Mymollybt,

I just wanted to say that you will be in great hands at Shriners, Philly. We have been taking my son there since December, 2003. In fact, we went there to find an option to full time bracing for him.

As far as I know, none of the doctors there will prescribe the Spinecor brace.

(Who are you seeing by the way?)

That being said, they are TOPS in the field and it will be great to at least get their opinion on your daughter's case. In addition to bracing, if your daughter were to require surgery, they offer several non-fusion alternatives, such as VBS which my son had.

Best of luck to you - and feel free to ask me anything or e-mail me.

[mymollybt]

Thank you Maria,

We are seeing Dr. Cahill...who mostly works out of Erie.......from what we understand he is one of the dr's at Shriner's who will prescribe the SpineCor.....but we could be wrong - my husband is the one who did all the phone work as I was too much of a mess that day. I am very interested in learning more about VBS although to be honest that scares the hell out of me right now....but this whole situation pretty much scares me to death.......

Thanks for your support...I truly appreciate it.

Tracey

[mariaf]

Hi Tracey,

Nice to know your name!

Hmmm....I didn't know Dr. Cahill worked out of Erie. I actually know who he is and I thought he worked exclusively out of Philadelphia but I could certainly be wrong about that. In any event, I know a few VBS patients of his and the consensus among the parents is the Dr. Cahill is great. As I said I've seen the team in Philly in action for four and a half years and have talked to countless parents - and I can't stress enough what great hands your daughter will be in.

As an aside, IF you want to learn more about VBS, please check out this website:

www.vertebralstapling.com

Again, best of luck and keep me posted!

[jillw]

Hi Tracey, My daughter is also 7 1/2 and as you can see from my signature she was diagnosed last fall. I understand your feelings totally - the fear you articulated of "crushing her spirit" were the exact words I used with my husband. I'm guessing most mothers have this fear but it is probably even stronger for those who are diagnosed so young and face close to a decade of treatment.

Like you the philosophy of spinecor appeals to me because their daily life isn't compromised as much (in U10 soccer I'm sure she has many days with games and practices where a couple hours out of brace wouldln't be nearly enough time). Also, because my daughter is so young, I like the idea that she is still using her muscles and we don't have to worry about the side effect of muscle atrophy that can go with hard bracing. My daughter does EVERYTHING (but swim) in her brace. She has danced in dance competitions with it on (in the acts that the costume covers up the brace), she has played soccer, etc.

I will be interested to hear how your appointment in Philly goes because, like Maria, I didn't think Philly Shriners did Spinecor. I had heard a Dr. Sanders in Erie Shriners did (this was back in the Fall so things may have changed), so I guess it makes sense if Dr. Cahill works out of Erie also he might be able to prescribe spinecor? But also you can hear more about VBS and other options from Shriners. It would probably make sense to get Tracey in a brace ASAP while you weigh all your treatment options.

My feeling would be that if you were going to go with Spinecor, if you could make it to Montreal (where the brace was invented) that would be best. Nonetheless I am glad you are going to the Philly Shriners because they would be the people I would go to for any other treatment. I also realize that monetarily going to Montreal would likely be much more costly so you may prefer to get spinecor through shriners if you can. But if you can't, you might want to consider a visit to Dr. Rivard/ Dr. Coillard in Montreal. Or you can call Dr. Rivard and explain your situation and see what he thinks. I don't have his number handy right now but I'll post it later.

My only concern is this, Spinecor seems to work best for the smaller curves and your daughter's curve is on the larger side for spinecor (although if you read through this board you will see there have been some who had success so far even with curves starting in the 30s that have been reduced in brace. However, there are others with "bigger" curves who had good results initially, but over time the brace was unable to keep their curve from progressing and they did go on to require fusion surgery.) If you wanted to have your daughter braced for spinecor and she had a good correction, it could very well be part of the solution. But I would caution that it might not be a long term solution - for example as your daughter approaches that pre-adolescent growth spurt in the 9-12ish age range you might want to proactively decide if another treatment is called for. (but you still might have bought her a couple/few years)

In my opinion VBS (which I would go to Philly Shriners for) would be one of the other palatable options for someone in your daughter's shoes. I can understand that it seems overwhelming right now, but you would want to be careful about waiting too long because if she progresses she might not be a candidate for VBS alone (they might need to do VBS with a hybrid rod).

Who knows, maybe you can get her in spinecor which can halt progression for a while and as you further research options and speak to the folks in Philly. Then you can figure out if maybe VBS is worth it.

Decisions Decisions....they are overwhelming ! But it seems like you are off to a great start. Going to see the folks at Shriners Philly is a great start and obviously you are doing your research so your daughter is in good hands! Good luck.

p.s. I will send you a PM with my phone number - if you have any questions about spinecor or our experience with spinecor don't hesitate to call.

[mariaf]

My only concern is this, Spinecor seems to work best for the smaller curves and your daughter's curve is on the larger side for spinecor (although if you read through this board you will see there have been some who had success so far even with curves starting in the 30s that have been reduced in brace. However, there are others with "bigger" curves who had good results initially, but over time the brace was unable to keep their curve from progressing and they did go on to require fusion surgery.) If you wanted to have your daughter braced for spinecor and she had a good correction, it could very well be part of the solution. But I would caution that it might not be a long term solution - for example as your daughter approaches that pre-adolescent growth spurt in the 9-12ish age range you might want to proactively decide if another treatment is called for. (but you still might have bought her a couple/few years)

In my opinion VBS (which I would go to Philly Shriners for) would be one of the other palatable options for someone in your daughter's shoes. I can understand that it seems overwhelming right now, but you would want to be careful about waiting too long because if she progresses she might not be a candidate for VBS alone (they might need to do VBS with a hybrid rod).

Very well said, Jill. Looks like you've covered all the issues that need to be taken into consideration.

At 33 degrees, there is practically NO window for VBS alone. The newly-revised criteria are to "generally" use VBS and the hybrid rod, I believe, starting at about 35 degrees - and to use VBS alone only for curves under 35 degrees.

(Of course, no two cases are the same and there are always many factors to consider. No worries, though, they will look at the entire picture in Philly and advise accordingly.)

If it were my child, I think I would be leaning towards VBS now, not only to avoid the need for the hybrid rod, or to try to avoid fusion later on, but also in light of the instances you mentioned, that I was aware of as well, where Spinecor did not work in the LONG TERM on the larger curves.

Another important thing to note - with Spinecor all of the x-rays seem to be taken "in brace". However, I have heard some parents say that they go to an ortho as well for "out-of-brace" x-rays intermittently to be sure they are measuring the "true" curve. Dr. Betz, whose reputation speaks for itself, once told me that the only way to get an accurate measurement of a child's curve is for the child to be WITHOUT the brace for at least 24 hours. He insists on that for all his patients prior to all x-rays.

Tracey - please feel free to e-mail me as well. I am happy to chat by phone too if you like regarding my experiences with VBS or Shriners or anything.

[christine2]

Hi Tracey

As you can see from my signature we are having good results with Spinecor. We go to Montreal. In my opinion that is the best place for Spinecor treatment. It is a huge commitment to travel there but we are happy and willing to spend ALL OF OUR VACATIONS up north.

Unfortunatly scoliosis is unpredictable. We can only make the best informed decisions we can. Dr Rivard is very confident that we can avoid surgery. He said about 80%!!!

As far as wearing it it is very easy to do activitys in. My daughter only takes off the brace for swimming or when it is very, very hot. I would be happy to discuss this more if you would like.

[MJB]

I am really curious to know what Halle's "true" curve is now. I would like to have an out of brace xray around the end of the year to see how this brace is helping but that would require her to be out of the brace for 24 hours or more and her dad will not agree to that. Dr. Rivard will not give her an out of brace until she's been in it for 2 years, which is so far away because she only got it at the end of March.

[MJB]

during the time between visits (5-6 months) when the brace loosens a bit, does that cause a great risk for the curve to progress? It's too bad that when we go to Dr. Rivard they don't take the xray before adjusting the brace again.

I find that Halle's brace is loose in many parts, the Dr's. are not worried about it though.

[emarismom]

My ortho here was very concerned that the Spinecor protocol only called for inbrace xrays. He wanted me to take an out of brace xray 6 months ago, but I didn't. After the first full year, I figured I had to do what he asked.

The reason they don't take an out of brace xray before they readjust the brace is that in order to get a "true" measurement, the patient needs to be out of the brace for 24 hours. They need to see what the spine will do on its own.

Now, I feel even more worried than I did before, because now I wonder if the brace is actually doing anything for Emily, or if her curve has stayed stable because she has not entered a rapid growth phase, or if her curve will never progress because of the Chiari surgery halted the progression. I hate the idea of keeping her in the brace, if she is not progressing. If only I knew when she was going to start puberty?

[mariaf]

I am really curious to know what Halle's "true" curve is now. I would like to have an out of brace xray around the end of the year to see how this brace is helping but that would require her to be out of the brace for 24 hours or more and her dad will not agree to that. Dr. Rivard will not give her an out of brace until she's been in it for 2 years, which is so far away because she only got it at the end of March.

Hi MJB,

You say Halle's dad will not agree to her being out of the brace for 24 hours - I assume he thinks that will be detrimental to her treatment? (I can figure out no other reason).

Please tell him that one 24 hour period out of ANY brace is not going change the ultimate outcome. If you think of all the hours someone wears a brace - say 22 hours per day - and you consider this over MONTHS and YEARS, one 24-hour period is a VERY small percentage of time.

That is why most, if not all, orthos will allow a child out of their brace for a day or more for illness (fever, stomach bug, etc.), or sometimes for skin conditions/rashes, etc. (I'm not speaking of spinecor here because I don't know what those docs allow, but speaking of all other braces).

Our former ortho once explained it to me the way I did above that in the "grand scheme" of things a day here or there out of brace isn't going to change the ultimate outcome of what the curve will do.

I hope her dad will reconsider as it is really important IMHO to occasionally get an out-of-brace x-ray to know what the true curve is.

I base this opinion on many things, including speaking to parents whose kids wore the spinecor (some of whom progressed but that's not my point here) - the point is those parents felt it was necessary to get and out-of-brace x-ray occasionally, and often it was quite DIFFERENT than the in-brace numbers. Some of these kids, whose out-of-brace x-rays indicated a larger curve, did end up progressing, some needing fusion and so the point being that the in-brace x-rays "can" catch progression earlier before the curve is "out of control".

Also, Dr. Betz explained to me at length recently why a child MUST be out of any brace at least 24 hours before he will x-ray them. He said doing it any other way can "mask" progression that may be taking place. With his reputation, years of experience and number of kids he's treated, that opinion holds a lot of weight for me.

Again, I really hope her dad will reconsider and I wish her all the best!

Regards,

[mariaf]

Now, I feel even more worried than I did before, because now I wonder if the brace is actually doing anything for Emily, or if her curve has stayed stable because she has not entered a rapid growth phase, or if her curve will never progress because of the Chiari surgery halted the progression.

Hi Emarismom,

Funny you should mention that - I recall being told once that curves with underlying conditions (such as chiari) may never progress once the underlying condition is addressed - so that "could" be the case with your daughter.

Of course, whether or not that really IS the case is the $64,000 question I suppose.

I'm trying to follow in your signature what has happened so far - you stated that after one year you felt you had to listen to your ortho who recommended an out-of-brace x-ray. Has that x-ray been taken yet? If so, what did they measure her curve at?

You have a tough call to make about whether or not under these particular circumstances it is necessary to keep her in the Spinecor. You sound like a great mom who is weighing all the factors, and I wish you all the best!

[emarismom]

Maria,

Emily was diagnosed at age 5 with 28 degree scoli. First MRI showed Chiari and Sryingomyelia. (Syringo is a fluid filled cyst that is inside the spinal cord and is presumably the "cause" of the scoli). She had a brain decompression surgery which dealt with the Chiari and reduced the Syringo. The cysts are still there but are MUCH smaller than when she was diagnosed.

The thought is that because the "presumable" cause of the scoli has been treated, the scoli may not progress. However, all studies are not in agreement on this. Some say there is initial stabilization of the scoli, while others indicate that 4-7 years after decompression "scoli progression is the norm". Scoli progression in kids with Chiari/Syringo is harder to control and progresses very rapidly, more rapidly than in kids with AIS.

She has been stable since the surgery. She has stayed in the 18-23 degree range for the past 4 years. I opted to put her in the brace because I did not want her to begin to progress rapidly and not have the benefit of bracing her before she reached the 30 degree point.

So in my situation, the question of bracing is even more daunting. The ortho is now leaning more towards caution, telling me to keep her in it as long as she tolerates it. Of course this is since he knows I am obsessive (just a little). He also knows that I will not put her into a hard brace. Her current out of brace xray (June 28) was 23 degrees. So she is still in the stable range. She has never since the surgery, been near the 28 degrees we started at.

I'm hoping that once school starts, Emily will tolerate the brace better. It has been so hot and uncomfortable here lately, that I really feel bad for her. The meltdowns have been frequent and I am having a hard time enforcing the brace, when I'm not sure it is helping.

[emarismom]

MJB,

I have to agree with Maria on the need for out of brace xrays. After a year with no out of brace xrays, I think parents can get a real "false sense of security". Not me per se, as you can see from my signature, that Emily's numbers have been all over the place, even with the brace.

If there is no OOB xray for two complete years, then when you finally get one, if the results are not the what you had hoped, it could feel devastating and misleading.

While I do believe at this point, that the Spinecor offers my daughter a better chance of staying stable, I also realize now that
a) it is not a guarantee.
b) every doctor who sees her will offer different opinions
c) every time I get an xray done, it is only a view of a certain moment in time. That image may not be the case tomorrow
d) I cannot be so rigid with her wearing the brace the alloted time, that I make my daughter completely miserable. She has already gone through too much. I do make her wear it as prescribed. However, for special occasions, days at the beach or pool- I have to be a little flexible. In the grand scheme of things, these few extra moments won't have a major effect on the progression of the scoli. But these moments may have a lasting impact on my daughter.
e) Most importantly, all that I am trying to do to prevent a fusion surgery may not work. If that is the case, then it is not a reflection of me as a parent.

[mariaf]

Hi Emarismom,

Thanks for explaining Emily's history. Sounds like you've done your homework and have come up with a good plan. So long as she's having the occasion out-of-brace x-ray then presumably the Spinecor can't harm her, so I guess you have nothing to lose by having her wear it - except of course for the fact that she doesn't seemed to be thrilled with it right about now -but I think your "flexibility" of allowing her a little extra time out here and there should go a long way in helping with that issue - at least that is my hope :-)

Keep up the good work.

[emarismom]

Maria,

I have also looked into the VBS and found that Emily is a candidate. I was pretty surprised by that one. As of now, with no definite progression, I am not pursuing that option. Should there be a change, then I may have to look more closely at that option.

Michelle