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Kerrie
03-20-2010, 06:22 PM
Hi there ~ I would like to introduce myself to all of you living with Scoliosis or a parent of someone with Scoliosis. My name is Kerrie and my husband is Bill. We live in Grand Haven, Michigan and our daughter Libby was diagnosed with Scoliosis in October '09. She had been complaining of shoulder pain for about 4 months prior to her diagnosis which I thought was just growing pains and too much homework writing. Her curve was allready a 43/26 at that time. We were in shock that she had this condition we knew nothing about as they do not test for it in her school. She has always been healthy, so her pediatrician never looked for it either until she told him of her shoulder pain and he did the simple Adams forward bend test. Her shoulder/rib hump took my breath away and had she not been in the room, I would have cried. It was a scene I will never forget. Unfortunately Libbys curve grew aggressively and on February 8, 2010 she had surgery to correct a 62/48 curve. This happened 5 days after she turned 13. She is doing overall really well and has been such a champion considering she never had a broken bone or a hospitalization.
To honor Libby and her valiant spirit during her journey, I endeavor to raise awareness anyway that I can. I feel a great way to do this is thru a brochure that goes home with puberty information that is sent home with kids for parental permission at the end of 5th. grade. I also want to support research for Scoliosis and I am in the process of creating an awareness bracelet that will be available soon. It will strictly be non-profit.
And of course supporting others with the knowledge I have gained over the last 4 months will be one of the most helpful ways to give back. Libby has a carepage that I would be happy to share, pictures of her before/after correction, and her post-op recovery experience. So please do not hesistate. Forgive all the "I's" in this post as ultimately we are all in this together.

titaniumed
03-21-2010, 02:06 AM
Hi Kerry

I just wanted to say welcome to the forum and Im sorry this happened. Please remember that scoliosis sneaks up and can happen to anyone at anytime and its nobodys fault.

Glad to hear Libby is fine, the kids usually do great.

I will keep this short as Im going skiing tomorrow and its late.

Keep posting!
Ed

Snoopy
03-21-2010, 08:04 AM
Hi Kerry

Please remember that scoliosis sneaks up and can happen to anyone at anytime and its nobodys fault.

Ed

Hi Kerry,

I totally agree with Ed. Scoliosis can sneak up on anyone at anytime, even wtih regular Scoliosis checks. My daughter's doctor checked her back yearly and she was fine at her 11 y.o. check-up and at her 12 y.o. check-up we discovered a Scoliosis curve of 36* and a Kyphosis curve of 71*. Our schools do a Scoli check on our kids, but it wasn't until about two months after her diagnosis. Hang in there. You are not alone.

Keep sharing your story. We all need to do our part to bring awareness to Scoliosis.

Mary Lou

LindaRacine
03-21-2010, 12:38 PM
Hi Kerrie...

There are already at least two organizations that have scoliosis awareness bracelets (one being the National Scoliosis Foundation). Instead of creating yet another bracelet, you might want to just buy and resell them.

http://www.scoliosis.org/store/scoliband.php

--Linda

DadRich
03-24-2010, 10:21 AM
Hi. I'm also new to this. So new, that my daughter's first orthopedics appointment is today. I'm knowledgeable (have worked in healthcare for 15 years) about medicine but not trained clinically.

A couple of questions: are the degrees and therapies "carved in stone?" I've read varying indicators of what curve indicates what treatment. My daughter is just above the 45 degree thoracic. She's had no problems and this was detected during a normal exam. I've seen people posting two numbers -- I'm not sure what that means?

Has anyone had any experience with minimally invasive surgery and is it widely available?

LindaRacine
03-24-2010, 10:02 PM
Hi DadRich...

Those with two curve measurements have two curves (often described as an "S" curve). You may even see people with three curve measurements.

The degrees aren't carved in stone, but you'll generally find that the surgeons who do the most scoliosis treatment, don't do anything but watch curves under 25 degrees, not consider bracing on kids with curves <40 degrees, and rarely talk about surgery before curves reach at least 50 degrees. There are, however, all sorts of other mitigating factors that can be applied.

Minimally invasive scoliosis surgery is not widely available, but there are several surgeons who are known for it. The names I hear most are George Picetti (Sacramento, CA), Barron Lonner (NYC), and Peter Newton (San Diego), Larry Lenke (St. Louis), Isadore Lieberman (Cleveland), and David Skaggs (LA). If that's of interest, be certain to find someone who has done a LOT of this type of surgery, as there's a very long learning curve.

Regards,
Linda

michael1960
03-24-2010, 11:47 PM
Hi DadRich

May I ask, how old is your daughter?

Please make sure you look into Vertebral Body Stapling (VBS). She is on the upper limit (45) of being a candidate for VBS/Hybrid Rod.

You can learn more about VBS by going to scoliosis101.com and click on (in the menu) Surgery and then VBS. You can also go to Surgery - Spinal Fusion and learn more about Spinal Fusion. It is a fairly new site but it does have some good VBS info on it and other Surgery info. You can also go to Scoliosis Forums and click on the VBS forum. You cannot get into the forum but it will take you to the site.

But based on her age there are multiple options: VBS/Hybrid Rod, Growing Rods, minimal invasive Spinal Fusion, and Spinal Fusion.

But based on her age she may be able to do some bracing to hold the curve until it can be done. This might be an immediate action based on surgical approach.

There are a lot of people on this forum that can provide some ideas and suggestions based on some additional information you are getting from orthopedic.

We have seen 4 orthopedic surgeons. It was not until the last 2 that we learned the most about our options. So, I would recommend getting a 2nd or 3rd opinion if possible. And based on her being 45, probably good idea to do it sooner than later.

As an FYI my daughter is 8 with a 36 degree curve currently wearing a Boston brace and SpineCor brace and considering VBS/Hybrid Rod.

Michael

DadRich
03-25-2010, 09:07 AM
Hi Michael,

Yes, she's 11 1/2. The orthopedist we just saw felt that she would definitely need surgery after she crossed the 50 degree range and he expected that to happen after she has her next growth spurt. He did not recommend bracing but he was willing to support us doing so if we wanted to. He said that he had not seen bracing be helpful for girls with this much curve (he was pretty negative about bracing in general). I've read that bracing may be effective up to 45 degrees but I certainly don't want to torture her with a brace if there's no chance it'll be productive.

We're getting a second opinion next Thursday.

-Rich


Hi DadRich

May I ask, how old is your daughter?

Please make sure you look into Vertebral Body Stapling (VBS). She is on the upper limit (45) of being a candidate for VBS/Hybrid Rod.

You can learn more about VBS by going to scoliosis101.com and click on (in the menu) Surgery and then VBS. You can also go to Surgery - Spinal Fusion and learn more about Spinal Fusion. It is a fairly new site but it does have some good VBS info on it and other Surgery info. You can also go to Scoliosis Forums and click on the VBS forum. You cannot get into the forum but it will take you to the site.

But based on her age there are multiple options: VBS/Hybrid Rod, Growing Rods, minimal invasive Spinal Fusion, and Spinal Fusion.

But based on her age she may be able to do some bracing to hold the curve until it can be done. This might be an immediate action based on surgical approach.

There are a lot of people on this forum that can provide some ideas and suggestions based on some additional information you are getting from orthopedic.

We have seen 4 orthopedic surgeons. It was not until the last 2 that we learned the most about our options. So, I would recommend getting a 2nd or 3rd opinion if possible. And based on her being 45, probably good idea to do it sooner than later.

As an FYI my daughter is 8 with a 36 degree curve currently wearing a Boston brace and SpineCor brace and considering VBS/Hybrid Rod.

Michael

DadRich
03-25-2010, 10:41 AM
Thanks Linda. The orthopedist thought that the minimally invasive (arthroscopic procedure) was no longer being done and it's outcomes turned out to not be promising. He's suggesting a "wait until >50 degrees then operate" approach.


Hi DadRich...

Those with two curve measurements have two curves (often described as an "S" curve). You may even see people with three curve measurements.

The degrees aren't carved in stone, but you'll generally find that the surgeons who do the most scoliosis treatment, don't do anything but watch curves under 25 degrees, not consider bracing on kids with curves <40 degrees, and rarely talk about surgery before curves reach at least 50 degrees. There are, however, all sorts of other mitigating factors that can be applied.

Minimally invasive scoliosis surgery is not widely available, but there are several surgeons who are known for it. The names I hear most are George Picetti (Sacramento, CA), Barron Lonner (NYC), and Peter Newton (San Diego), Larry Lenke (St. Louis), Isadore Lieberman (Cleveland), and David Skaggs (LA). If that's of interest, be certain to find someone who has done a LOT of this type of surgery, as there's a very long learning curve.

Regards,
Linda

mariaf
03-25-2010, 11:05 AM
Hi Kerrie,

I applaud both your spirit and your daughter's - I think the awareness bracelets are a great idea, as is anything that raises awareness.

And it does happen - I just got a call from a mom who learned about VBS from her pediatrician. This pediatrician learned about VBS from another one of her patients who had the procedure done a year or two ago - so you're telling even one person can help!

Continued good luck in your endeavors!

mariaf
03-25-2010, 11:09 AM
Hi DadRich,

To add to what Michael said, VBS (or more likely VBS/hybrid rod since your daughter's curve is at 45 degrees) might be a non-fusion option that you'd want to consider. The best place to seek a consult on these procedures is Shriners Hospital in Philadelphia. They are the only ones doing the VBS/hybrid rod combination and one of several sites around the country doing VBS.

Just possibly something you might want to look into. And getting additional opinions is always a good idea - at least 2 or 3 - and you can't do much better than hearing what Dr. Betz (in Philly) has to say. And like I always tell folks, since there is no charge for the care at Shriners, you have nothing to lose.

Best of luck to you.

DadRich
03-25-2010, 12:13 PM
Thank you! I faxed the "application for care" to Shriners about two hours ago. We'll see how fast we can get in...


Hi DadRich,

To add to what Michael said, VBS (or more likely VBS/hybrid rod since your daughter's curve is at 45 degrees) might be a non-fusion option that you'd want to consider. The best place to seek a consult on these procedures is Shriners Hospital in Philadelphia. They are the only ones doing the VBS/hybrid rod combination and one of several sites around the country doing VBS.

Just possibly something you might want to look into. And getting additional opinions is always a good idea - at least 2 or 3 - and you can't do much better than hearing what Dr. Betz (in Philly) has to say. And like I always tell folks, since there is no charge for the care at Shriners, you have nothing to lose.

Best of luck to you.

mariaf
03-25-2010, 12:39 PM
It shouldn't take too long to get in for a consult. But you might want to follow up in a couple of days with an e-mail or phone call to Janet Cerrone, PA to the spine team there - her contact info is in my signature.

DadRich
03-25-2010, 12:48 PM
It shouldn't take too long to get in for a consult. But you might want to follow up in a couple of days with an e-mail or phone call to Janet Cerrone, PA to the spine team there - her contact info is in my signature.

Thanks. I've already left a message for Janet (and thanks to you, I now know how to spell her name!). Since my daughter is on the edge of treatable with this method, I'm eager to have her seen.

mariaf
03-25-2010, 05:22 PM
Hi DadRich,

I'm sure you'll hear from Janet within a few days.

By the way, while I realize that you may want to wait and see if your daughter is a candidate first, there are several parents on the VBS forum whose children have had the VBS/hybrid combination. If you are interested in chatting with them, you can go to www.vertebralstapling.com and request membership. (I happen to be one of the moderators of the site and can tell you the parents there, like here, are eager to share their experiences and offer support!)

mariaf
03-25-2010, 05:31 PM
p.s. I just heard that Janet took a (rare) few days off, so while she normally responds to parents within about 48 hours, it may take her until next week to get back to you. Although knowing her, it is not unusual for her to check e-mails and phone messages from home.