Curve too progressed for VBS

[smileyskl]

We just found out last week that VBS is not an option for us. I guess growing rods is the way we will have to go. My daughter is so dissapointed and is now having some panic attacks (I think brought on by the stress of all of this stuff). She is very upset about the repeated surguries involved with the growing rods. I have tried to be upfront with her without giveing TOO much information. Any suggestions to help her feel better. Anyone with positive outcomes from the growing rods? Long term results? Thanks.

Smileyskl

[txmarinemom]

We just found out last week that VBS is not an option for us. I guess growing rods is the way we will have to go. My daughter is so dissapointed and is now having some panic attacks (I think brought on by the stress of all of this stuff). She is very upset about the repeated surguries involved with the growing rods. I have tried to be upfront with her without giveing TOO much information. Any suggestions to help her feel better. Anyone with positive outcomes from the growing rods? Long term results? Thanks.

Smileyskl

Have you examined VEPTR or VBS+hybrid before growth rods? You do know growth rods cause almost guaranteed spontaneous fusion, right? (aside from the fact they're outdated)

What facility/surgeon recommended growth rods? Very curious.

There are other options.

Regards,
Pam

[smileyskl]

I have consulted with Dr. John Purvis (Her Pediatric orthepedic specialist) and also Dr. Haber (Pediatric orthepedist specialist at Blair Batson children hospital in Jackson, MS.) Dr. Haber is specially trained to do VBS and he says with the progression and nature of her curve he is very hesitant to try VBS. He said with her type of curve, there is a high failure rate. This consultation was over the phone but he was looking at all her charts. The last thing I would want to do is put her through something that doesn't work and be back where we are now or worse.

I have heard of VBS and hybrid rod on this forum but don't quite understand it. Maybe I should ask her doctor about it. When we were at our last appt. we talked mostly about growing rods or VBS. I didn't think to bring that up. Also, VEPTR didn't come up. I need to research that again. I don't remember what was said about that before. How is it different from growing rods? I feel very uneducated on all this, in spite of all my extensive research. When shes panicking, she feels like she can't breath and we have to take her brace off. She has worn her brace perfectly with no problems until all of this started happening and now I feel her curve is getting worse because she is not wearing her brace all the time like she should. I am so weary of all this not knowing and we still have such a long road. We are not supposed to go back to the doctor until december but I don't know if we should wait that long. Sorry about venting, but sometimes it seems like no one really knows what to do. Thanks for listening.

smileyskl

[Pooka1]

Sorry about venting, but sometimes it seems like no one really knows what to do. Thanks for listening.

Please don't apologize. Many/most people here can easily sympathize with the feeling that no one knows what to do.

It's easy to get lulled into thinking that since we can put a man on the moon, why can't we do (fill in the blank)?

Many areas of biology are just tougher nuts to crack than technology like rockets. Scoliosis research in particular, because of the time spans involved and the apparently huge variation (even my identical twin daughters have different trajectories for their scoliosis).

At some point, my husband and I had to cut off the conversation and admit to ourselves we had done enough research and there was still no obvious answer in re certain things except surgery for my one daughter because it was clearly her only hope. At other times, making decisions for a child really does feel like working without a net. And finally, some things really can only be known after the fact. Prediction is hard w.r.t. scoliosis in some cases.

At that point, not beating oneself up becomes a priority for all involved.

Good luck. To everyone.

[txmarinemom]

I have heard of VBS and hybrid rod on this forum but don't quite understand it. Maybe I should ask her doctor about it.

Hey, smileskl ...

As Sharon said, no apologies needed. It's scary stuff!

Unfortunately, your daughter's ortho probably will either not know of the hybrid at all, or only know about it conceptually. The hybrid was developed at Shriners Philly, and they've been placing them (in combination with staples) for larger thoracic curves (35-50°) since April of this year.

To my knowledge, they are the only hospital doing the procedure. Preliminary results are said to be very good. There are several kids who've had them placed on the vertebralstapling.com site, and if you're interested, you can learn more about them/ask questions in the site forum area.

BTW, the hybrid rod is more like VEPTR (explained below) than growth rods, but it doesn't have the titanium rib. Theoretically, the rod is simply to help the staples, and the force of correction is born by both the rod and the staples. The hybrid has a single upper and lower attachment point, and does not touch the spine.

From what I understand, the hybrid requires expansion ±every 4-6 months during growth, and is removed when growth is complete.

Yes, it's new, but it is an option. It would at least be worth a shot to get your daughter's x-rays to Betz or Janet Cerrone at Shriners Philly for an opinion.

When we were at our last appt. we talked mostly about growing rods or VBS. I didn't think to bring that up. Also, VEPTR didn't come up. I need to research that again. I don't remember what was said about that before. How is it different from growing rods? I feel very uneducated on all this, in spite of all my extensive research.

The hybrid/staples, growth rods and VEPTR all need remaining growth to be effective.

A lot of doctors don't mention VEPTR (Vertical Expandable Prosthetic Titanium Rib) simply because they aren't trained to do VEPTR (and the newer version, VEPTR II) surgery. Aside from extensive training to do the surgery, surgeons must go though an Institutional Board Review (IRB dictates research at any institution). If a surgeons request is denied by the IRB, it can be a year or more before they can reapply. It's a huge commitment for both the surgeon and the facility.

Because of the that, some hospitals never did (or no longer do) VEPTR. Sadly, some surgeons/hospitals don't do VEPTR because they receive funding for growth rod studies.

To try and answer your question (without confusing you more), the main difference in growth rods and VEPTR is growth rods touch the spine (across intervertebral bodies), and are almost guaranteed to cause spontaneous fusion.

VEPTR does NOT cause fusion. The rod has an upper and lower attachment point (ON a vertebral body ... never covering 2 adjacent bodies - which can result in fusion). The force of holding the correction, however, isnt all born on the rod: It's dissapated out to the titanium rib. Expansion is done via a system of sleeves and locking clips. It's possible the child can outgrow a set of expansion sleeves and need to have longer ones placed. I believe this is seen mainly in children who have the VEPTR placed very early.

Dr. Flynn is running a study (out of CHOP, but other facilities are participating), "VEPTR Implantation to Treat Children With Early Onset Scoliosis Without Rib Abnormalities" http://clinicaltrials.gov/ct2/show/record/NCT00689533 (250 patients, ending in 2016). The study is still recruiting.

Read on before you hesitate at either "clinical trial" or study ...

From what I've read (and what my friends who have kids with VEPTR have told me), VEPTR docs *know* VEPTR can help children with idiopathic and non-chestwall issues, but nothing has been documented.

This is where Flynn's study comes in: Although it's been underway for a couple of years, is just now "official", and the orthopedic community won't even consider listening to a presentation about this without long term documentation.

Just a note, you'll definitely want to talk to Carmell. Braydon has a VEPTR, and has an expansion surgery scheduled for Monday. He's had excellent success with the system. Also, lots of good info on veptr.com.

Some kids aren't suited for this surgery (i.e., those with bone density issues).

VEPTR was originally developed by Dr. Bob Campbell (formerly in San Antonio, now at CHOP) for use in children with chestwall isuues (thoracic insufficiency sydrome, specifically), but they're finding it's a very good alternative to growth rods in cases without TIS.

My surgeon recently started doing VEPTR surgery and is covering a lot of the patients who would have been seen by Campbell. I can tell you, we've discussed it at length, and he believes the device is VERY promising.

VEPTR/VEPTR II *can* be removed at growth completion, but I understand some tolerate them so well the are left in place. Some have them removed and then a traditional fusion is done.

It's only designed to work while growth is occurring. Unlike growth rods, however (because it doesn't touch the spine except at attachment points), it lets the spine expand and grow as separate bodies.

Hope this helps and hasn't just muddied the waters!

Best regards,
Pam

[mariaf]

Pam's post pretty much covered everything. I just want to reiterate that only a handful of doctors are trained to do the newer procedures such as the VEPTR II, hybrid rod, etc. So, even some very good orthos can only suggest what they are trained to do (i.e., traditional growth rods).

I strongly suggest you contact Janet Cerrone and try to set up a consultation in Philadelphia. Your daughter may very well be a candidate for the VBS/hybrid rod combination. The advantages of this over a traditional growing rod are: (a) a traditional growing rod, as Pam stated, will almost always cause spontaneous fusion over time; and (b) by having the staples AND the hybrid rod there should be a better chance for a good outcome (better correction).

I can personally vouch for Dr. Betz and his team at Shriners. My son has been under their care for almost five years, and during that time I've seen those doctors help countless children, many of whom were not offered the options that are available in Philly by their former orthos. In fact, I know one mom who was seeing another well-known ortho and after going for a consult with Betz, she decided to switch her son's care. They are coming from Florida for treatment in Philly.

For that matter, my own son had been seeing a supposedly very good doctor in NY, but again I was not offered the options that were available to me in Philly and now, despite having good insurance and access to all the doctors in NY, we choose to continue to travel to see the team at Shriners.

Best of luck to you,

[smileyskl]

Thanks everyone, I have e-mailed shriners to at least talk to someone.

smileyskl

[Carmell]

Big hugs to you, smileskl.

Being a parent is hard! Medical technology has made our decisions even harder (when it comes to our kids) because there ARE options - more than just fusion of a relentless spine. Knowing which procedure our child needs requires extensive research and talking with surgeons and other parents with kids in similar situations. You are off to a good start.

Just to clarify some things...

<<BTW, the hybrid rod is more like VEPTR (explained below) than growth rods, but it doesn't have the titanium rib.>>

The VEPTRs original name was Titanium Rib, because it was an artificial rod used to support the child's chest space who was missing or had malformed chest wall. Because of the success of the original "titanium rib" they realized the rod could be used to support a curved spine (when you manipulate the ribs, the spine goes along for the ride - they are attached!). They developed a second rod - the hybrid rod - used to support the spine. The rods (aka titanium ribs) are attached to an upper rib and to either a single vertebral body or another rib or the pelvis. Multiple uses for these VEPTR rods. I think Pam was referring to the rib-to-rib device, which was the original VEPTR rod. Clear as mud? My Braydon as the traditional rib-to-rib AND a rib-to-spine rod.

There are many variables involved in making a decision that will be the RIGHT one for your daughter. Her age, her amount of growth remaining, her overall health, the severity of her curve, timing, etc. I know hearing that she will need repeated surgeries until she's skeletally mature is frightening, overwhelming, frustrating, etc. These are normal feelings. I would worry about you and her if you didn't feel this way. However, knowing that her quality of life may become affected by her scoliosis may play a big part in this decision. Braydon's quality of life has been better than we could ever have hoped for in the beginning. He is an active, healthy, energetic, handsome (if I do say so myself) 13 yr old boy. I've rambled plenty here, but if you'd like, I'd be happy to share more of our experience with VEPTR, fusion, etc., or clarify any of my comments. Many things to think about, I know. Take care and let us know how you are doing. BTW, I hope you've contacted Shriners in Philly, not just your local Shriners. Philly will have the most options for you to choose from, and they'll be able to explain WHY they are making specific recommendations. There are a handful of VEPTR surgeons in the USA that I would trust my child's life to. You're doing great.

[txmarinemom]

Just to clarify some things...

<<BTW, the hybrid rod is more like VEPTR (explained below) than growth rods, but it doesn't have the titanium rib.>>

The VEPTRs original name was Titanium Rib, because it was an artificial rod used to support the child's chest space who was missing or had malformed chest wall. Because of the success of the original "titanium rib" they realized the rod could be used to support a curved spine (when you manipulate the ribs, the spine goes along for the ride - they are attached!). They developed a second rod - the hybrid rod - used to support the spine. The rods (aka titanium ribs) are attached to an upper rib and to either a single vertebral body or another rib or the pelvis. Multiple uses for these VEPTR rods. I think Pam was referring to the rib-to-rib device, which was the original VEPTR rod. Clear as mud? My Braydon as the traditional rib-to-rib AND a rib-to-spine rod.

Indeed I was, Carmell ... I knew you'd come through . Glad to see you stepped in to clarify that, and looking forward to hearing great news about Braydon Monday!

Hugs,
Pam

[smileyskl]

Thanks for the encouragement everyone. I used the contact info at the bottom of Marias post. I think that is the Shriners in Philly. If not, then I will send another e-mail. Yes, Brayden is a handsome boy. You have a beautiful family. This is so far the hardest descision I have ever had to make in my life. I hope and pray I make the right one.


smileyskl

[mariaf]

I used the contact info at the bottom of Marias post. I think that is the Shriners in Philly.
smileyskl

Yes, Janet Cerrone is the contact person for appointments at Shriners in Philadelphia.

[smileyskl]

I have received an e-mail from Janet. She is supposed to call me tomorrow. Thanks for the information everyone. I will give an update soon.

Smileyskl

[mariaf]

Great news - Janet is a wealth of information on all things related to scoliosis!

Please keep us posted.

[smileyskl]

I did speak with Janet on the phone. She says both of the doctors I am working with here in Jackson are very knowledgable. They are both with the research society and both know Dr. Betz. I guess I should have asked them. Anyway, the only thing different that would benefit my daughter would be the hybrid rod plus stapeling and after talking again with her doctor here we may send her x-rays for an opinion. However, she said that a child has to be emotionally able to handle this in case it doesn't work and with my daughters panic attacks and such, she doesn't know if its worth it to go through all of the other tests and that what her doctor is suggesting may be the right thing for her. She did help me a lot by helping me to understand some things that I didn't fully understand. Also, it made me feel much better knowing that both specialists that we are seeing are knowledgable of all the new technology and I feel like if they thought she would benefit from those services then they would send us their. Thanks for the contact information and the encouragement. I will update when our definite date of whatever surgery we decide is confirmed. I am sure I will be completely crazy by then. Best wishes to all.

smileyskl

[mariaf]

I'm glad to hear that Janet put your mind at ease. That's what I love about everyone at Shriners - there are no big egos on that staff - they are the first to tell you if they feel your current doctor may very well have come up with a good plan for your daughter.

As a parent, it's always good to do your homework, look at ALL the options available, get several opinions and then make an informed decision. You are doing all of the above for your daughter. That's all you can do - the rest is out of our hands.

Please do keep us posted and best of luck!