spinecor

[mariaf]

Hi Michelle,

I figured you had heard of VBS so I didn't mention it as an option. I also didn't know whether or not you preferred to stay with a non-surgical approach (bracing).

But since you brought it up, just something to keep in mind in the future - recent studies at Shriners have shown VBS to be more effective for curves under 35 degrees. If one's curve was to progress over 35 (and hopefully that's never the case with Emily), then they would most likely recommend VBS plus a hybrid growing rod. They feel that a lot of the times (not always) the VBS alone is not enough to hold a larger curve (i.e., over 35 degrees).

So just keep an eye on her curve and you should be able to keep all of your options open

[emarismom]

If her curve ever measures 25 degrees, we are going for a visit to Shriner's. I'm not waiting for "significant" progression. Since she has remained relatively stable for so many years, anything higher than 23 is definitely a sign of progression.

Is the hybrid rod new? I don't remember reading about that. Since Emily will need MRI's regularly, up to now they have been yearly-at our last visit in April we were told we could wait 2 years , I have to be careful as to the type of metal that can used. As some metals interfere with MRI images. I think that titanium is okay. There are way too many things to be aware of.

I see that your son started off at 40 degrees, did he have the hybrid rod put in? Do you think that the VBS is all he will ever need?

[mariaf]

Hi Michelle,

Yes, the hybrid rod is relatively new. Earlier this year they re-evaluated the VBS data and while it has been largely successful overall, the highest success rate was with curves under 35 degrees.

So they decided that since VBS alone wasn't enough to stop CERTAIN 35+ curves from progressing, rather than put a child through VBS and then have them need another surgery later on, they would do VBS together with a hybrid growing rod for most curves over 35 degrees. My understanding is that the hybrid rod is not like a traditional growing rod, but rather more like the VEPTR in how and where it is attached, and therefore there is much less chance of spontaneous fusion than with a standard growth rod.

David did not have the hybrid rod because four years ago it wasn't used. I guess he was one of the lucky ones who started with a curve larger than 35 degrees but has remained stable. In answer to your question, of course we hope VBS is all he will ever need - and that certainly "may" be the case according to Dr. Betz - but unfortunately, as we all know, there are no guarantees with scoliosis. So we take it a day at a time - so far, so good.

Getting back to the hybrid rod, it's something to be considered when there is no other option that may prevent the need for fusion.

By the way, one of the spinal surgeons at Shriners (Dr. Samdani) is also a neurosurgeon, so Shriners might be a really good fit for you - even if you just wanted to go at some point to get an opinion - this way you'd already be in the system if the need for VBS or other intervention ever arose in the future - hopefully it won't, but there's absolutely nothing to lose.

You could even ask their opinion about whether or not Emily needs to remain braced, post-chiari surgery, at 23 degrees - or whether they feel she's not in danger of progression because the chiari has been addressed. Not saying you'd have to act on their advice right away or anything, but at least you'd have it to weigh in with all the other factors now or in the future (hope that makes sense).

Also, at Shriners (and I'm sure elsewhere) they are using "night-bracing" in CERTAIN instances as opposed to full-time Boston bracing. Again, just something to perhaps consider if Emily ever gets to the point, when she gets older, where she won't tolerate wearing a brace all day (to school, activities, etc.)

Best of luck to you. Feel free to e-mail me as well if you think that's easier

[MJB]

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,

Thank you for your response, I completely agree with you and I hope he reconsiders too! He is worried about her being out of the brace for more than 2 hours at a time.

[MJB]

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?

I am worried about when Halle starts puberty too... I hope her curve holds through that, I worry about how loose the brace has gotten since her visit in April and she still has to go until October.

[MJB]

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.

Thank you! your points are all very true for me too! I wish her dad would consider being more flexible sometimes with her out of brace time.

[MJB]

Pictures...

Does anyone ever post pictures on this site?

I was thinking that it might be nice for Halle to see pictures of other children that have to wear the brace too, right now she feels like the only person in the world that has to wear it.

[mariaf]

Thank you for your response, I completely agree with you and I hope he reconsiders too! He is worried about her being out of the brace for more than 2 hours at a time.

Hi MJB,

Please don't take this the wrong way, but as her mom, if you feel it is in your daughter's best interests to get an out-of-brace x-ray, then perhaps you need to consider going against her dad's wishes and put your daughter's best interest ahead of what HE wants. Isn't that (what's best for her) what should come first?

Again, I apologize - I am not trying to chastise you or give you a hard time - and I tried to find the words to say this as gently as possible - but I am thinking of your daughter here and what is best for her. If it were my child, I would do what I thought was best for HER and let the chips fall where they may.

Good luck and I truly hope you don't mind my candor.

[Pooka1]

Thank you for your response, I completely agree with you and I hope he reconsiders too! He is worried about her being out of the brace for more than 2 hours at a time.

I'm just curious about this... why is he worried about being out of brace more than two hours at a time versus more than one or three or five hours at a time? It seems arbitrary unless based on some data.

If there is some study out there showing this, could you point me towards it?

Thanks in advance.

[RugbyLaura]

Hi,

I know I'm going to regret this but...

I don't understand why everyone is so hung up on this out of brace xray issue. If the curve is progressing it will show up in an inbrace xray - read back over this thread & see. As I understand it the brace is supposed to prevent progression, not correct the curve. It doesn't always work and we won't know whether it has until we come out of the other side and maybe not even then.

Sorry Maria but can't we just leave this in the hands of the medical professionals? Should I start recomending that staples are removed periodically to see whether VBS patients are 'really' stable?

I don't want to start a huge argument again but I do feel that Marlowe could do with support & reassurance rather than incitement to marital disharmony!

x

[Pooka1]

I don't want to start a huge argument again but I do feel that Marlowe could do with support & reassurance rather than incitement to marital disharmony!

x

I guess that's a consideration for some folks but aren't there limits when a child is involved?

If my husband started laying down rules unsupported by anything resembling data I would quash that in no uncertain terms. Of course he doesn't do that and not because he knows I would quash it in no uncertain terms.

Maybe I'm off-base here but there is a child involved. It's not just a marriage.

[Pooka1]

How is staying out of the brace for 24-48 hours different from starting the bracing 24-48 hours after your started the bracing?

Is there a rational person who would claim that starting a bracing regime at:

Time = X hours

versus starting at

Time = X + 24 hours, or

Time = X + 48 hours

is going to affect the outcome? I think not!

[RugbyLaura]

I totally agree Sharon, if my hubby did anything that I felt was wrong for my children I would be down on him like a ton of bricks.

My point was that I really don't condsider the out of brace xray to be worth the argument. I don't think it will be a source of meaningful information & is just more exposure to radiation.

I would not be worried about the additional time out of brace, I just think it's a pointless excercise. I agree with you that the prescribed hours out of brace appear to be fairly arbitrary. There have not been enough (if any?) studies to pin it down, we therefore take them with a pinch of salt & make the brace fit our way of life rather than the other way around

[jillw]

MJB,

My daughter feels the same way (about being the only one...she knows there are others from seeing them at Dr. Rivard's office, but with the exception of one boy, they were usually much older than her so it didn't help her) I'm not comfortable posting my daughter's pics on the internet, but if you want to PM me your email I could email you some pictures of my daughter - she'll turn 8 next month so they are similar in age. Is Halle going into 3rd or 4th grade next year?

[RugbyLaura]

Oh and...

If my husband started laying down rules unsupported by anything resembling data I would quash that in no uncertain terms. Of course he doesn't do that and not because he knows I would quash it in no uncertain terms.

Too right BUT I don't think Marlowe's husband is doing this - he is actually wanting stick to the instructions of the medical professional that they have chosen to treat their daughter.

Edited to add, Marlowe - I would be more than happy to send photos of Immy if you pm me your email address. I also know that Celia (old member with daughter of similar age) is putting together a video for you tube. I'll keep you posted.

Laura