Spinecor or wait??

[michele27]

Hi,

We just found out last week that my 11 yr old daughter has an S curve( 27 degrees upper, 19 degrees lower), and her ortho recommended waiting 4 months and rechecking then. At the time, I was relieved that he didn't say she needed bracing now, but in researching this over the weekend, it seems like a gamble to wait. The doctor thinks she has about 6 to 8 more inches of growth and I am now not so comfortable with the wait and see approach. I am very interested in Spinecor for her as opposed to hard bracing and was wanting to go ahead with that. There is so much info out there and I have been feeling quite overwhelmed. The closest ortho listed on the spinecor site is Dr. Dewald in Chicago. Does anyone have any experience with him? Has anyone had a preteen not progress after diagnosis? It almost seems inevitable and I'm afraid we'll go back in May and she'll have progressed more than expected. Thanks!

[christine2]

Hi Michele

First thing you may want to do is see a scoliosis specialist for a 2nd opinion. Perhaps a Shriners hospital in your area? I agree with you about waiting. It is so hard saying what could happen, some curves progress and some don't, I gather there are even cases that spontaneously disappear. but you are off to a good start at this forum there is alot of info about all kinds of treatment options.

[macky]

spinecor

Hi Michele,
I wouldnt wait. I think you would find very interesting a large topic on spinecor on this forum that has been going for a long time. There is heaps of information on there,.

Regards Macky

[leokatmom]

I agree with others that you should not wait and seek a second opinion. My daughter's curve was 14 thoracic when diagnosed , the same 3 months later then at 6 months later it was 32 degree . What a shock!! I have no experience with Spinecor but we were told bracing usually is started when curves are over 20.

[michele27]

Thanks for your responses! We're scheduling a second opinion just to be certain of her numbers and will then start the Spinecor process! The only info I've been able to find on Dr. Dewald is regarding him as a surgeon(which he sounds like a good one), but can't find anyone whose has used him for Spinecor. I suppose there's a chance he no longer does it, so I guess I'll call his office to see. Thanks again!

[concerned dad]

I replied with a PM because I am feeling self conscious about all the posting I've been doing lately.
But I figure, perhaps there will be others later looking for similar info.
I said
................
You asked "Has anyone had a preteen not progress after diagnosis? "
I think you hit the nail on the head with that question. You might ask your orthopedist.

Also, the link below has some info on progression. Good Luck

link to decent summary article on progression
............................

This makes me think that perhaps a FAQ would be appropriate for this forum. Not to discourage people from asking questions, but I bet many use the site as a resource w/o posting. Perhaps a link to Linda Racines website would be good. I think it is well laid out and there is a ton of useful info there.

[macky]

Totally agree, concerned dad, and please keep posting. The forum I was talking about had about 3000 replies, so a FAQ would have been so much easier for Michele. Linda Racine is just wonderful too and has helped me heaps.


Regards
Macky

[jillw]

Michele,

I was in your shoes a little over a year ago and although I can't tell you what to do since everybody's circumstances are different, I can tell you how we arrived at our decision (see my signature below for some background info)

My daughter was just shy of 7 years old when diagnosed with a primary curve somewhere between 16-19 degrees depending on which doctor did the xray. One orthopedist said that for an older child he would brace when they hit 25 degrees but given my daughter's young age he would brace her when she hit 20. Then he would put her in a Milwaukee brace (the worst of them all in my opinion) for 23 hours a day.

He said the Milwaukee brace because she would potentially be braced for so many years that rib deformity from a corset brace such as a boston brace would be a higher risk. I had the following thoughts:
-fear that in 4-6 months or between any 2 checkups that her curve would jump not just a few degrees, but take a very large jump as I have seen anecdotally time and again on this website (offset by the assumption that there is a sort of "survivors bias" on these boards...those who follow the advice to watch and wait and don't have any progression are less likely to post here and I'm sure there are more of them out there than one would think from following these boards)
-I'd read there is a margin of error of +-5 degrees. Who is to say that her 17 degree Xray (the info I had at the time) wasn't really a 20 degree curve?
-I felt absolute anguish at what 8-9 years in a Milwaukee brace would do to my daughter's spirit and how hard it would be for her to do all the acitivities that she currently is engaged in.
-Spinecor looked like a more livable alternative because she can do all her activities (other than water related) while wearing her brace. Nonetheless I was hesitant because there seems to be some controvery...was it concerned dad who called it the "woo woo" factor or something like that? Additionally, the results published on the brace were for those with Adolescent scoliosis, not juvenile scoliosis and I wasn't sure that this flexible brace would be able to hold the curve during that period of rapid spine growth.

Having said that, I realized we had nothing to lose (but $) by trying spinecor. Spinecor may or may not work as well as a milwaukee brace, but at this time we were being told to wait anyway. If we wanted to try spinecor I felt like we should do it immediately. My hopes are that it will hold her curve for at least a while...I still am not convinced it will hold her curve through her peak growth velocity that will probably begin in another couple years but still would consider it a WIN if we got her through a few years in the flexible brace - because that would be fewer years in a "Hard" brace. If we can get her until she is 10 years with spinecor, then the issues of rib deformity aren't quite as strong. Even if she has to switch to a hard brace because she ultimately does progress, then she'd have fewer years in a brace that causes muscle atrophy.

In the meantime other procedures such as VBS are becoming even better and more refined and any time I can buy for my daughter is a positive.

I'd also looked into immediately putting her into a Providence brace (night time brace) instead of spinecor. The doc thought her curve was too high to be likely to be effective.

I don't think it's the worse thing to take action now - but something a little easier than full time bracing with a hard brace ...i.e. try spinecor and see if it reduces her curve or a nighttime brace.

Unfortunately I don't know anything about the doctor you refer to. We decided to go to Montreal for her treatment since we figured they have by far the most experience and it would hopefully give my daughter the best chance (we live in the northeast so we can do a driving/overnight trip which makes it easier than having to fly)

Good luck with your decision making process. For me, that was the hardest part.

p.s. I forgot to add that part of my thought process was that spinecor seems to work best on the smaller curves. If I waited and my daughter's curve progressed 10 degrees or so, she would no longer be an ideal candidate for spinecor and I'd be more hesitant to try it.

[bscoli]

Why wait?

Hi Michelle,
I commend you for exploring options for your daughter. Waiting would be challenging for me if I were in your shoes. You mention that Chicago is close. You may want to see this article that published earlier this month a Chicago area paper:

European method helps Darien girl avoid surgery
http://www.pioneerlocal.com/burrridg...709-s1.article

Here's another article about a neighbor of mine who was also in your situation. Like you, she did not want to "WAIT AND SEE."
http://www.wauwatosanow.com/story/index.aspx?id=765591.

The girls in these stories used a Rigo Cheneau brace and were treated at Spinal Dynamics of Wisconsin (www.sdwpt.com) which is run by a friend of mine, Cindy Marti. Three of the clinic's physical therapists are certified in Schroth, an exercise approach used in Europe for many years. Cindy's told me that, until she learned about Schroth, she fell ill-equipped as a physical therapist to have significant impact on the lives of those with scoliosis. She also told me that, since working with many scoliosis patients, she's developed new perspectives about the myriad of factors that can be influenced by and/or influence each person's scoliosis. She and her colleagues blend decades of spine specialization with Schroth principles when developing treatment plans.

As with any medical condition, scoliosis is complex. Schroth is not a magic answer for every person. Yet people should be aware of Schroth and other options. Research is valuable in helping each person or family decide what's best for them. This forum is a rich source of information for research. I am pleased to learn from and participate in it, and I wish you the best with your scoliosis journey

[concerned dad]

Jillw, very good point about survivor bias. Something we should not forget about

Michele,

...was it concerned dad who called it the "woo woo" factor or something like that?

"Woo Woo Factor?" No, I dont think I said that.

I'm off to Montreal......

[Pooka1]

Good luck in Montreal

I use the term "woo woo" for paranormal treatment modalities.

But I can't claim credit. I got it from someone else who uses it to mean counterfactual or anti-science claims.

[michele27]

Boy, I've spent this whole past week with my backside glued to my computer chair, exploring all the different scoliosis treatments, but I do keep circling back to Spinecor for the same reasons Jill and others have mentioned. My daughter dances competitively and I worry about possible muscle atrophy with a hard brace as well as the comfort and self-image issues. Spinecor seems to be the best option for us and we are not waiting. It has already been a month since her x-ray, so she could be progressing as we speak and I just can't figure why the orthopedist didn't think she could progress much in 4 months. She has not had a major growth spurt yet and is likely to grow another 7 to 10 inches before she's done(we are all on the tall side) so I feel now is the time to be proactive with this.

The doctor I mentioned is not the right one. I found his name on one of the many scoliosis/spinecor sites I've been looking through, but it is actually a Dr. Akeson in Peoria that is listed on spinecorporation.com. However, we are now wanting to go to Montreal for an initial assessment and fitting, but we are in Alabama, so that can get pricey after a while. We definitely have to fly. Do you think they would refer us to someone closer that we could see for the 3 month check ups? I just don't think we'll be able to go to Montreal every 3 months for the next few years. I don't know if anyone out there does this or if it is something the doctors would be willing to do for us.

Is it better to call or email the doctors for an appointment? Does it take long to get an appointment and do they tell you the cost upfront? Even if our insurance would reimburse us(doubtful, but worth a shot) we'd have to pay out of pocket first. Sorry so many questions!

I cannot tell you all how much I appreciate your responses. This can be so overwhelming and frustrating at times and I am thankful that you all share your experiences with newbies like me!

Thanks again,
Michele

BTW, an FAQ is a great idea!

[concerned dad]

I can only help with a few of your questions.

I emailed Dr. Rivard and he called me back the same day.
We had to wait 6 weeks for an appointment. A long wait for me.

He explained the costs on the phone, and I had the impression it was a little cheaper than seeing some of the other SpineCor providers. ($3300 US for the brace and $400 CN for hospital and xrays).

I dont think the protocol is to visit every 3 months although I could be wrong. You can find the treatment protocol on the spinecorporation website. But, since your child is young you would be looking at several years of treatment I think.

I was pleasantly suprised to find my insurance covers some of the costs although YMMV.

good luck

[christine2]

The cost of the spinecor is as Concerned dad said but I want to point out that my daughter has had the same brace for over 2 years. The brace grows with the kid and can be altered by the velcro. So the brace cost is cheaper than other braces that need to be changed more frequently. There are some docs that are changing the brace more often but Dr Colliard does not. We have visits every 5 months but will start going longer inbetween until the growth spurt I am thinking every 8 months. Then back to every 5.

The cost in Canada is considerably less than quoted by another doc.

We have also been able to recover all but our $850 durable medical dedutable from insurance. Unfortunatly our ins. just changed to a $1000 deductable per person so we will have to pay out of pocket for now on for x rays and O.V. But thats OK with us.

Concerned Dad how is the traveling? Snowing? But beautiful I suspect.

[jillw]

Michele,

My daughter also dances competitively and other than the competitions or recitals themselves where her brace would show, she wears her brace while dancing (in fact she even wears her brace in competition for one of the dances where the costume covers more skin)

I think how long it takes to get into Dr. Rivard depends on whether he is traveling or not - he attends many of the scoliosis related conferences and many are out of the country. For our first appointment I emailed him and he called back within a couple/few days (only because at the time Canada wasn't included in our unlimited phone service and I was hoping to avoid an expensive "international" call). He was able to schedule us for an appointment in less than 3 weeks. You'll need passports if you are considering a trip (currently for the adults, the kids require birth certificates).

Dr. Rivard's general protocol is generally : visit 1 for fitting, visit 2 one month later to see how its going and make any fine tuning adjustments, visit 3 is 5 months after visit 2 (and generally every 5 months thereafter). I think that I would definitely want to go to Dr Rivard for the 1st 3 visits....then maybe you could alternate 5month visits thereafter? If that was the case, after the initial 6 month flurry you'd only be going up to Montreal approx once a year. I think some of the chiros may have more of a 3 month visit cycle although I'm not sure they do xrays every time????