Newly diagnosed twins; some questions

[mariaf]

Thanks for this information. I'll look forward to your site.

Best regards,
sharon

And we look forward to seeing you there, Sharon!

Let me know if you have any trouble loggin on or joining. There should not be any problems but just in case, I (or one of the other moderators) can always help you out.

Best regards,

Maria

[The Slice]

Sharon, let me give you some info that may help put things into perspective. First off, bracing is not a cure or will it correct the curve. The idea behind the brace is to slow down, or stop the curve's progression. There are many factors that affect the success of bracing such as when it's done, the person themselves, the skill of the orthotist, and more. Sometimes the brace may be needed to slow the curve even if surgery will be needed. The reason is that the severity of the curve pre-op can affect how much correction can be achieved with surgery. You say that at 13, your girls are still pre-pubescent. At this stage, they will probably need bracing, but an x-ray of the hand to determine the development of the growth plates will give the best indicator of what needs to happen. What they are looking for is the Risser scale. Surgery, if needed, will probably not happen until they hit a Risser 4 or 5. There is of course no guarantee that the bracing will eliminate the need for surgery. From what you have given so far, I would think that a follow-up soon is in order, and bracing should be considered until their bone growth is near completion. If at that time, their curves are on the borderline of surgery, surgery for them while they are in their teens or early 20's is probably a real good idea as while they are young, they will recover much quicker, and better results are more likely now as later as they are probably going to have much more flexible spines. Yes, surgery is a big step, and it does have it's risks, but the complications that can happen later can be worse. These can be a worsening curve, compromsed heart and or lungs, pain, etc.. Sorry, I can't tell you much about the VBS, but I personally would be a little skeptical about it only because it's still very new, and there isn't a lot of anecdotal info to indicate it's efficacy, or whether there may be other problems associated with it.

The bottom line here is that there's a good chance that they will need bracing now, if for no other reason than to increase the possibilities of a greater surgical correction. What ever happens, I wish you all the best.

[Pooka1]

This...

(snip)The reason is that the severity of the curve pre-op can affect how much correction can be achieved with surgery.

And this...

You say that at 13, your girls are still pre-pubescent. At this stage, they will probably need bracing, but an x-ray of the hand to determine the development of the growth plates will give the best indicator of what needs to happen. What they are looking for is the Risser scale. Surgery, if needed, will probably not happen until they hit a Risser 4 or 5.

It's a Catch-22 then because they are far from skeletal maturity yet if we wait, they will be (much) worse and achieve less correction.

Those are opposing considerations.

How do you decide whether to operate at a likely Risser of 0 but a rapidly progressing angle (presently at 48 and increased over 10 degrees in 4 months) versus waiting for it to (inevitably) get much worse and have available a much smaller correction with the surgery?

Based on my cursory review of the posts on this board, I am unconvinced that bracing will do anything, much less in the three years W will likely be in the brace to avoid surgery.

I was told S needs surgery now and W can try bracing though, given her identical twin's progression rate, she is looking at surgery also, brace or not.

Thanks so much for you input. I appreciate it. I wish hundreds more were on this board.

sharon

[HaleyMom]

Sharon
Just an FYI - if you decide to look into SpineCor, there are currently no providers in the triangle area. However, the Dr we see in New York is opening an office in Raleigh later this spring (I'm kind of bummed as I liked having a shopping trip to NY every 3 months).
If you want more info on the Drs we've seen in the triangle or if your daughter would like more info from my daughter on wearing a brace, feel free to email us off line - lms18808@yahoo.com

Hope everything works out for S and W.

[Pooka1]

Sharon
Just an FYI - if you decide to look into SpineCor, there are currently no providers in the triangle area. However, the Dr we see in New York is opening an office in Raleigh later this spring (I'm kind of bummed as I liked having a shopping trip to NY every 3 months).
If you want more info on the Drs we've seen in the triangle or if your daughter would like more info from my daughter on wearing a brace, feel free to email us off line - lms18808@yahoo.com

Hope everything works out for S and W.

Thank you for this! Amazing luck that they will be offering that in Raleigh though I'm from NYC, have most of my family still there, and would just stay with my mother in Flushing.

I'll ask W if she wants to talk to someone who has the Spinecor. Thank you very much for that offer.

I love this board.

sharon

[MATJESNIC]

If you do look into Spinecor and go the chiropractic route, may I suggest you continue follow-ups with an orthopedic doctor. I believe there is no substitute for that.

[Pooka1]

If you do look into Spinecor and go the chiropractic route, may I suggest you continue follow-ups with an orthopedic doctor. I believe there is no substitute for that.

You certainly MAY suggest that!

I have no intention of doing any chiropractic at any point. Is that a requirement with the Spinecor?

Scoliosis is serious stuff; This is no time for new age "treatments."

Chiro is included in the Amazing Randi's Million Dollar Paranormal Challenge for a reason. You prove it works... you get the million dollars.

sharon

[mariaf]

It's a Catch-22 then because they are far from skeletal maturity yet if we wait, they will be (much) worse and achieve less correction.

Those are opposing considerations.

sharon

Sharon,

With stapling it's actually BETTER if the patient has not reached skeletal maturity - the best results have been with kids who are Risser 0 or 1 and have significant growing left to do.

I'm not a doctor, but given the circumstance, the VBS may be an EXCELLENT option for one or both of your children.

Please let me know if there are any questions I can answer for you in this regard.

Best,

[The Slice]

Sharon, the reason for the bracing is to try and keep the curve(s) at bay until the person is near the end of their growth spurt. If you are considering the VBS, that's probably why the doctor wants to do it now. If not, then you'll have to talk to the surgeon to see why they want to do it now. From what I understand, most surgeons don't want to do the procedure until the child is near the end of the growth spurt so as to have a minimal effect on the child's final height. You need to understand that there is a sequence to the growth spurt. It starts with the upper arms and legs, then the lower, then the hands and feet, and then the spine. It's usually only when there is a serious indication for doing it sooner that they proceed such as it affecting their breathing or heart, or if there are indications of the nerves being affected. Now that's not absolute, and I don't want you to think that I'm saying that your doctor is wrong, but you may want to discuss it further, or go for a second opinion. Even if you stay with this surgeon, it would be a good idea to get all of this clarified, get a second opinion, and share with that surgeon what the other's intentions are. If the surgeon you have seen is upset or offended by your going for a second opinion, find another surgeon.

[Pooka1]

Sharon, the reason for the bracing is to try and keep the curve(s) at bay until the person is near the end of their growth spurt.

Yes that is my understanding of the use of bracing. I'm just saying my review of the literature and my review of the posts here on this board lead me to believe the success of bracing of any kind is quite low in the long run. That is, many folks wear the brace and still need surgery. So in those cases the brace did not keep the curve at bay. Now what?

If you are considering the VBS, that's probably why the doctor wants to do it now.

No I was unclear. I was told S needs spinal fusion surgery now based on her progression rate and present angle. I am investigating the lap surgery for her. I am investigating VBS at least for W who has a lower angle and possibly also for S in lieu of the spinal fusion if they are candidates.

If not, then you'll have to talk to the surgeon to see why they want to do it now. From what I understand, most surgeons don't want to do the procedure until the child is near the end of the growth spurt so as to have a minimal effect on the child's final height.

They are already quite tall at 13. They are about 5' 9" (tall husband) so I don't mind them not growing more if it doesn't compromise their health. If you double their height at 18 months to guess at the adult height,they are scheduled to be about 6 feet tall. If that can be avoided, all the better.

You need to understand that there is a sequence to the growth spurt. It starts with the upper arms and legs, then the lower, then the hands and feet, and then the spine. It's usually only when there is a serious indication for doing it sooner that they proceed such as it affecting their breathing or heart, or if there are indications of the nerves being affected.

I thought a major consideration was to do it before the angle gets much worse because the correction will be limited by the starting angle. Is that correct? What are the long term sequelae of doing spinal fusion at a low Risser? Does anyone know?

Now that's not absolute, and I don't want you to think that I'm saying that your doctor is wrong, but you may want to discuss it further, or go for a second opinion. Even if you stay with this surgeon, it would be a good idea to get all of this clarified, get a second opinion, and share with that surgeon what the other's intentions are. If the surgeon you have seen is upset or offended by your going for a second opinion, find another surgeon.

Okay thanks for all the advice. I have the one opinion from the orthopod that S to have spinal fusion now and W to be braced. I am getting a second opinion on both kids from the surgeon. Since he will likely be doing the surgery, I will need a third opinion from another surgeon who will not be doing the surgery. I am investigating VBS for at least W and possibly S and I am investigating the lap spinal fusion surgery for S.

Anything else I should do at this point?

Thanks for the advice. I appreciate it.

sharon

[The Slice]

Sharon, I guess I didn't explain myself well. The bracing may not prevent the need for surgery, but it may make a difference in the amount of correction that can be achieved in the end by limiting how far beyond that point the curve progresses. In going for other opinions, you might want to get their thoughts on the pros vs cons in doing the surgery now vs bracing them and waiting until they are closer to a risser 5. I'm well beyond my knowledge in this area, and there may in fact be no other issues other than the effects on their final height, but you might just want to make sure. Good luck, and I hope for the best for your girls.

[Pooka1]

Thanks for your input, Slice.

I am only at the very early stages of my research on this. I am a research scientist (not in a medical field, though) so I have some idea of the amount of time I'm going to be spending on this. I need to know the top peer-reviewed journals in this field and get all the relevant papers done on all possible treatment options, especially more recent ones as this field might move quickly. That's not my sense yet but I haven't really gotten into it in a meaningful way yet so we will see. I am making rearrangements in other areas to put this on the front burner this spring/summer.

sharon

[HaleyMom]

Some of the journals I regularly read are

Scoliosis http://www.scoliosisjournal.com/

Journal of Pediatric Orthopaedics

European Spine Journal

Spine http://www.spinejournal.org/pt/re/spine/home.htm;jsessionid=HhxGzDv3ldjJpWB2m545GG94txznJT dqLQC5GdyQmRyNvfjP0DJ2!-1383090724!181195629!8091!-1

A few articles to get you started are

Guille JT, D'Andrea LP, Betz RR.
Fusionless treatment of scoliosis.
Orthop Clin North Am. 2007 Oct;38(4):541-5, vii. Review.

Puttlitz CM, Masaru F, Barkley A, Diab M, Acaroglu E.
A biomechanical assessment of thoracic spine stapling.
Spine. 2007 Apr 1;32(7):766-71.

Day G, Frawley K, Phillips G, McPhee IB, Labrom R, Askin G, Mueller P.
The vertebral body growth plate in scoliosis: a primary disturbance of growth?
Scoliosis. 2008 Jan 26;3(1):3 [Epub ahead of print]

Ward WT, Rihn JA, Solic J, Lee JY.
A comparison of the lenke and king classification systems in the surgical treatment of idiopathic thoracic scoliosis.
Spine. 2008 Jan 1;33(1):52-60.

Wright JG, Donaldson S, Howard A, Stephens D, Alman B, Hedden D.
Are surgeons' preferences for instrumentation related to patient outcomes? A randomized clinical trial of two implants for idiopathic scoliosis.
J Bone Joint Surg Am. 2007 Dec;89(12):2684-93.

Coillard C, Vachon V, Circo AB, Beauséjour M, Rivard CH.
Effectiveness of the SpineCor brace based on the new standardized criteria proposed by the scoliosis research society for adolescent idiopathic scoliosis.
J Pediatr Orthop. 2007 Jun;27(4):375-9.

Wong MS, Cheng CY, Ng BK, Lam TP, Sin SW, Lee-Shum LF, Chow HK, Tam YP.
The effect of rigid versus flexible spinal orthosis on the gait pattern of patients with adolescent idiopathic scoliosis.
Gait Posture. 2008 Feb;27(2):189-95. Epub 2007 Apr 26.

[mariaf]

Thank you for this! Amazing luck that they will be offering that in Raleigh though I'm from NYC, have most of my family still there, and would just stay with my mother in Flushing.

Sharon,

I live 10 minutes from Flushing!

[Pooka1]

HaleyMom, thanks SO MUCH for you post. That looks like a great start for me. I appreciate it.

mariaf, cool! I grew up in Whitestone and Flushing. We go back every summer to see family. We live in Raleigh, NC now.

Best regards,
sharon