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[rushtonfamily]

I have a few questions? I need some opinions from ppl that are going through what we are. Our duaghter who is 9 has Idiopathic Scoliosis and we visited the Shriners Hospital yesterday and these are the options they gave us.

. Wear the brace until time for the fusion surgery - probably at age 12 or 13.
2. Have a "VBS" surgery that will "staple" the spine giving temporary
stabilization. The brace would not be needed and in 50% of the cases, this
corrects the curvature enough that spinal fusion is not needed. However, this
surgey would be performed in Pennsylvania and she would need to have it as soon as
possible, since the maximum curvature for it to be effective is 30% (and she's at
29% now). The Shriner's hospital apparently wants a decision as soon as possible
(within the next day or so) whether they want to consider this option and go to
Pennsylvania for a consultation immediately with surgery to follow very quickly


What would you do???

[mariaf]

Hi,

Believe it or not, we too were at Shriners in Philadelphia yesterday!! My son was there for a checkup.

Long story, my son had VBS in March of 2004. As my signature states he was at 40 degrees prior to VBS and had been holding around 30 degrees for the longest time. Well, yesterday his curve measured 24 degrees! So, it was a very good visit for us.

That said, nobody can make this decision for you. For us, it was easier because our son was only 5 at the time of surgery - and the thought of so many years of full-time bracing was not how we wanted him to spend his childhood. But, as I said, everyone must make the decision that is right for THEM based on their own particular circumstances, etc.

If you want to get some different perspectives from folks who have been there, you may want to check out the VBS website if you haven't already - it is:

www.vertebralstapling.com

Best of luck with whatever you decide!!

By the way, the results for kids with curves around your daughter's size have been EXCELLENT. It's the curves above 35 that are more unpredictable in terms of outcome. My son has been fortunate. As I mentioned, his curve was 40 prior to VBS and is now 24

[Pooka1]

[...]had been holding around 30 degrees for the longest time. Well, yesterday his curve measured 24 degrees! So, it was a very good visit for us.

Wow Maria! That's excellent news! Did he have a growth spurt between visits? Is that the hypothesis?

sharon

[rushtonfamily]

Thank you so much Maria. We are leaning to the VBS surgery but have so many unanswered question. We were actaully seen in Greenville, SC and they want us to go to Philly. I'm going to list a few of our question you may know the answers. I actually called Janet today and now waiting for a response.



What are the risks of the surgery?
Have you encountered any of these?
What are the concerns of nerve damage/paralasis since
the surgery is dealing with the spine?

Would he go through the chest or under the arm?

What is the post op progression- how long in the hospital, how long for the
chest tubes, what do you do for pain control? Is there any
type of Physical Therapy involoved post op or after you go
home? When can you go back to school?

How many of these surgeries has Dr Betz performed?

With Ainsley's history of asthma, would he expect any other
complications? Would she need to see a pulmonologist to clear her for
surgery?

As the spine grows what happens to the staples- do they expand to
encompass growth, will the growth cause the staples to "fall out"?
If the stapes do fall out, what are the risks ? Would they need to be
removed?
Has anyone been allergic to the staples?

Is it true that it seems most successful if the curve is <35degrees and
that rate of success is 79 %?

How are they measuring success rate: >10degress less preop and/or no change within
10 degrees preop (does that mean if it gets 10degrees worse they have still
classified that as a success and how many of these cases fall into that category? -
because that means hers could continue to curve to 39degrees and they would still
say it was a success.

[txmarinemom]

rushtonfamily ...

While there are quite a few of the same families on here, there are still many on this board unfamiliar with vertebral stapling (VBS).

You might want to check out the forums on www.vertebralstapling.com for some more in depth info.

Also, while Shriners Philly (specifically Dr. Betz) developed the VBS technique, they aren't the only ones who do it. There's a list of facilities and surgeons who do it on the VBS site (the link above): I believe when my surgeon started doing it this June (he's the only one doing it in Texas), it brought the surgeons to 10. That's certainly not to say Philly isn't top-rated. In addition, the services are free to those who need assistance - and that includes costs for the child plus 1 accompanying parent.

While I'm not a parent making this choice (nor am I taking the risks of any surgery lightly), here are my thoughts ...

I was a braced child, and was diagnosed Juvenile Idiopathic close to your daughter's age. I was 10, with a ±35° thoracic curve (which obviously was curving before age 10).

VBS is a very promising alternative to bracing. Yes, some kids require night-time bracing if they don't correct to under 20° (it's an option ... insurance of sorts). Growth is a plus for these kids, and can even derotate a curve as a bonus to lateral correction.

Bracing? The best you can hope for is it will hold a curve. It certainly *won't* correct one that's going to move.

And holding one, or letting one progress even IN a brace, until fusion? A MUCH more major surgery? Given the chance with MY curve or my child's curve ... if VBS were an option vs. trying to hold until fusion, I'd not bat an eye at my choices.

Regards,
Pam

[txmarinemom]

Hah ...

I see this initial post earlier ... no answers yet.

Get on the phone while I'm typing my post, and am delayed. Ends up, by the time I hit "submit", I'm #5. I knew Maria would get to you ... just wasn't sure when, rushton.

And YAY on David's correction!!!

Pam

[mariaf]

Thanks Sharon and Pam for the congrats on David's good news!

In answer to your question, Sharon - he really didn't have a big growth spurt or anything (which is the same thing the resident asked us because growth IS something that can cause correction).

Anyway, last time we were there Janet measured his "in-brace" correction at 11 degrees. He's been wearing a Charleston at night for a while as added "insurance" along with the staples. And he wears it faithfully - but as I said that's been the case for a while - maybe now it's finally paying off?

In any event, I'LL TAKE IT!!!!!

Rushtonfamily,

I will work on compiling some answers to your questions as best I can and post them separately. Although, many of them would be better answered by Janet or a medical professional, I'll be happy to share my/David's experiences with you as well as anything I have learned along the way. Also, feel free to visit the VBS site as Pam and I suggested and/or e-mail me if you like.

[mariaf]

Dear Rushtonfamily,

I have copied your questions below and tried to answer as best I can. For anyone reading this, I am NOT a medical professional, but rather a parent sharing what I experienced as well as what I recall about my son's surgery. David's surgery was over four years ago and certain things may have even changed since then, which is why I strongly recommend that you speak with Janet Cerrone or someone else at Shriners.

But, in the meantime, I know you are (understandably) anxious for some sort of info, so here goes:

What are the risks of the surgery?

Again, better to ask the medical people, but I do know that there have been NO major complications from VBS.

Have you encountered any of these?

No, David's surgery and recovery went exactly as planned.

What are the concerns of nerve damage/paralysis since the surgery is dealing with the spine?

Of course, this is ALWAYS a concern with any spinal surgery but that is one of the main things they focus on during surgery. There is an entire team of doctors there and the kids are monitored constantly. No cases of paralysis or nerve damage have ever occurred with VBS to my knowledge (I'm quite sure of this).

Would he go through the chest or under the arm?

David's incision's were under the arm. May depend on location of the curve(s) though.

What is the post op progression - how long in the hospital, how long for the
chest tubes, what do you do for pain control?

In David's case, he was discharged from the hospital six days after surgery. His surgery was on a Wed. and the chest tube came out on Fri. He was on IV medicine at first in the hospital and then switched to oral meds. His pain was well controlled in the hospital. Once we got home he only took Tylenol and only for a few days – then he didn't want or need it anymore. (Some people also feel that the younger kids bounce back more quickly).

Is there any type of Physical Therapy involved post op or after you go home?

Not in our case and I think the norm is no.

When can you go back to school?

Again, it varies from patient to patient. David was cleared to return to school after his 3 week visit. But it happened to be Easter break so by the time he returned he was nearly a month post-op. There was one boy from the VBS site who returned to school in a week! (Again, it varies quite a bit).

How many of these surgeries has Dr Betz performed?

I honestly don't have that number (again, Janet would be able to answer this). I just know that VBS started at Shriners in Philly by Dr. Betz and his team a few years before David had the procedure in 2004. Dr. Betz and his team have performed the vast majority of VBS surgeries that have been done to date.

With Ainsley's history of asthma, would he expect any other complications?

Again, better to ask the medical people - but I do believe there have been some kids who have asthma who have undergone VBS (and other surgeries such as fusion for that matter).

Would she need to see a pulmonologist to clear her for surgery?

I'm guessing that would likely be part of the pre-op clearance. Who does she see normally for her asthma – a pulmonologist or a pediatrician? Whomever she is seeing now could probably clear her.

As the spine grows what happens to the staples - do they expand to encompass growth, will the growth cause the staples to "fall out"?

Sorry to keep repeating myself, but better to ask Janet. I do recall hearing or reading recently that out of the thousands of staples that have been inserted only a couple either broke or became loose – maybe two or three.

If the stapes do fall out, what are the risks ? Would they need to be removed?

None have ever fallen out to my knowledge. As stated above, a few have either become loose or broken. If they became loose, then they'd need to be removed but I THINK there was one case where a staple broke BUT was solidly lodged on both ends so it did not need to be removed (hope that makes sense).

Has anyone been allergic to the staples?

Not sure – I've never heard of this happening. Does your daughter have many allergies?

Is it true that it seems most successful if the curve is < 35 degrees and that rate of success is 79%?

That sounds right. Curves under 35 have been VERY successful when treated with VBS. You could ask Janet for clarification though.

How are they measuring success rate: > 10 degress less preop and/or no change within 10 degrees preop (does that mean if it gets 10 degrees worse they have still classified that as a success and how many of these cases fall into that category?) - because that means hers could continue to curve to 39degrees and they would still say it was a success.

This question also came up recently but I can't recall what Janet's response was because I was not the one asking. I "think" that the criteria for considering VBS a success may have also changed along the way, as they are always learning more. For instance, they can predict far better now who would be a good candidate (i.e., success) than was the case 4 or 5 years ago when we were considering it for David. This is due to the fact that they have been able to gather at least some data now that the procedure has been being performed for I guess about 7 or 8 years.

Again, please ask Janet or one of the doctors at Shriners about all of your concerns. Much of the above was just to the best of my memory (which, quite frankly at 48, could be better – LOL!). I just wanted to give you a general idea, in the meantime, about David's experience and that of the other parents I've spoken to.

Best of luck and I hope to hear from you after you've been contacted by Janet!

[rushtonfamily]

Thank you so much! Your answers have helped me alot. I have e-mailed Janet now just waiting to hear back. Which I pray is soon. We have pretty much decided to have the surgery done.

[txmarinemom]

... We have pretty much decided to have the surgery done.

Rushton,

The decision to have surgery is a terribly tough one, but (again, speaking as a formerly braced child - and now a fused adult) I honestly believe you'll look back at your choice with no regrets.

I really wish I'd had the option of VBS.

Best regards,
Pam