spinecor

[leahdragonfly]

Jill, Good luck Thursday

Hi Jill,

Good luck Thursday with Katie's appt, I know you have been worrying about this appt, so I hope everything turns out better than expected. I always worry so much for the weeks leading up to Leah's appointments, too. I saw a post a while back where someone had coined a term for this, but I can't remember it now.

Let us know how it goes when you get a chance.

[MJB]

Laura, I'm sorry you didn't get the best news. Hopefully the adjustments to the brace will help. When do you have the next xray? Funny - I hadn't thought to ask about the scoliometer reading and they hadn't proactively told me (at least after the initial appointment when she was about an 8). Interesting about Dr. Mill's explanation - but it does make sense. My understanding is that vertebral stapling is working to a certain extent under the same theory (pressure on one side of the growth plates could slow down growth on that side and as the vertebrae grow faster can help straighten a curve).

MJB, Katie isn't out of brace much so I don't get to see but sometimes she appears to curve the opposite way when out of brace also...but then when I really focus on her spine, it doesn't seem to be curving to the opposite side...it's almost like her body had adjusted to having a right side curve to if you partially straighten out the curve itself, the body seems to curve a little to the left? I don't ever know what to think of all this! I can't wait until we go thursday to get the waiting over with! When do you go?

We go on the 16th! Let me know when you schedule your next appointment for, it would be cool if we were on the same day, we could get the girls together!

[mariaf]

Hi Jill,

Good luck Thursday with Katie's appt, I know you have been worrying about this appt, so I hope everything turns out better than expected. I always worry so much for the weeks leading up to Leah's appointments, too. I saw a post a while back where someone had coined a term for this, but I can't remember it now.

Let us know how it goes when you get a chance.

Gayle,

I can't take the credit for it, but I believe the term is "the dreaded x-ray day feeling". As soon as I heard it I just "knew" what was meant. We all do.

Jill,

I'll be thinking of you on Thursday and hoping for some really good news!

[christine2]

Jill
Good Luck Thursday!!!

We are also heading up for a recheck. We will see Dr Rivard Tuesday 10/14. I am very nrvous, we had to miss our 5 month appt so it has been 8 months without a re check. My daughter has grown a ton.

We are going to make a vaca out of it. We are staying in Ticonderoga NY 1 night then in Old Montreal Spring hill suites for 2 nights. I can't remember who recommended the hotel but Thanks, it looks very nice. We are going to check out the Science Center and may visit the I MAx theater. Has anyone been to the I Max? Is the movie in french or English. The schedule appears to have both.

I have a feeling my daughter is going to need a new brace, hers is tattered. she has had the same one for over 2 years now. I am shuffling around bank accounts this morning just in case.

[jillw]

Thanks everybody - I'll let you all know how it goes and I look forward to hearing how it goes for the rest of you who are going in during the next couple weeks. Hopefully we will all have good news to share.

Christine, we're the ones who like to stay at the springhill suites - i hope you enjoy it there! This will be an in and out trip so we'll just stay at the Ruby Foos (if there is availability) to save time and money the night before. Speaking of which, I better go book a hotel!

Jill

[emarismom]

Hi Everyone,

Yesterday I took Emily to see Dr. O. We opted not to do an xray until March, as she recently had an out of brace with the ortho. Her brace was readjusted. She has grown an inch and her rotation was a little better from 7 to 5 now. I hope everyone is doing well.

[mthorburn]

Hi, I am considering a couple of alternatives to rigid bracing for my newly diagnosed 9 year old daughter. One of the alternatives is the SpineCor. Some studies (including those from the makers of the brace) certainly sound very positive. But, I have not seen any discussion of the following cite I found on Scoliosis.com.

This abstract seems to indicate that rather than being perhaps better than rigid bracing, the SpineCor was less effective with this study. I know all studies are subject to being interpreted and misinterpreted, however one wishes.

Nonetheless, while I am very enthused to read all of the positive press and person testimonials about the SpineCor, I am trying to sort it all out and was wondering if anyone else has seen this and has any comments on it. Not trying to cause any trouble pro or con on the SpineCor as I am genuinely hoping that it works since I am STRONGLY considering it for my very active daughter!

Lisa
Newly Diagnosed 9 year old daughter
Looking into alternatives to rigid bracing (VBS? SpineCor?)

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"The Effect of Rigid Versus Flexible Spinal Orthosis on the Clinical Efficacy and Acceptance of the Patients With Adolescent Idiopathic Scoliosis.
Deformity

Spine. 33(12):1360-1365, May 20, 2008.
Wong, Man Sang PhD *; Cheng, Jack C. Y. MD +; Lam, Tsz Ping FRCS(Ed) +; Ng, Bobby K. W. FRCS(Ed) +; Sin, Sai Wing MPhil ++; Lee-Shum, Sandra L. F. PD [S]; Chow, Daniel H. K. PhD *; Tam, Sandra Y. P. BSc(Hons) *
Abstract:
Study Design. A prospective study on the comparison of the clinical efficacy and patient's acceptance of the 2 orthotic management methods.
Objective. To compare the treatment effectiveness and patients' acceptance of the flexible spinal orthosis, SpineCor with that of the rigid spinal orthosis for the patients with moderate adolescent idiopathic scoliosis.
Summary of Background Data. The patients' acceptance to the rigid spinal orthoses is always a concern as it could greatly affect the clinical outcome. SpineCor is a relatively new design for tackling those inevitable drawbacks found in rigid orthosis. However, there was no study to compare this design with the conventional method regarding their treatment efficacy and the patient's acceptance.
Methods. Forty-three subjects with moderate adolescent idiopathic scoliosis were randomly assigned to the SpineCor group (S group, n = 22) and rigid orthosis group (R group, n = 21). Their survival rate in the first 45 months of intervention was studied. The subjects' acceptance to the orthoses was evaluated by a purpose-designed questionnaire, which was administered in the 3rd, 9th, and 18th months of intervention.
Results. In the study period, there were 68% of the subjects in the S group and 95% of the subjects in the R group did not show curve progression. Significant difference (P = 0.046, by Fisher exact test) in failure rate between the 2 subject groups was found although the 2 groups had similar responses to the questionnaire.

Conclusion. The current study showed that the failure rate of the SpineCor was significantly higher than that of the rigid spinal orthosis, and the patients' acceptance to the SpineCor was comparable to the conventional rigid spinal orthosis.

Hi There,

I am also trying to research the Spinecor as a possible alternative to rigid bracing. When I asked my Doctor about it his response was that in all studies where the authors of the study did not have a financial interest in it's success, the Spinecor failed. He was also involved in a trial in New York and reported that the kids hated it.

This has confused me, as it seems that there is a lot of positive stuff out there about the Spinecor as well. I wonder if there is anyone out there who has tried it and been unsuccessful?

Mark

[RugbyLaura]

Hi Mark,

I know of plenty of people who have tried Spinecor and been unsuccessful, but then again I know plenty of people who have tried rigid bracing and been unsuccessful too.

Of a group of 4 girls who met up last summer via a UK forum my daughter is the only one not on the surgery list; she was the only one wearing Spinecor - but she is also the youngest...

As for the kids hating it - I am stunned! Spinecor is really very wearable and soooooooo much easier than the alternative! We have both and Immy much prefers Spinecor - there really is no contest in terms of comfort.

As for those studies... Well, the ones that I've seen that have unfavourable results for Spinecor have either been discredited (as the above has been) or have their own vested interests.

Who knows?? Good luck with your decision, we have been very happy with ours.

Thinking of you tomorrow Jill. x

Great news Michelle! Totally envious of Emily's rotation figure.

Laura

[christine2]

Mark
We have all been where you are at right now. It is all very confusing and stressfull. There is no crystalball. What ever brace you choose, it's success will depend on compliance. Some of us have seen with with own eyes the benefits of Spinecor, some have seen the failures, you can only do your best, research then make a decision. Make sure you keep in mind that some docs and chiros are not fully trained on using Spinecor. Those are the ones that use it when contraindicted just for the $. So I feel that they are flooding the research with false results.

We are very happy with our choice and pray for continued success. Our goal is to keep my daughters curve below 20 so she can hopefully avoid surgery. If we can not avoid surgery then there are a tone of people living normal lives after surgery.

I would bet that if you compared the brace wearing population you would find that the Spinecor Brace is much more appealing.

It is a tough position to be in. We all feel for you!!!

[WNCmom]

Mark:

My 13 yo son has worn SpineCor for the past year, and is still wearing it, even though he is scheduled for surgery on Nov. 13. He first wore a Boston brace for 6 months (with great compliance), which did not work. By the time we switched to SpineCor as a last ditch effort, his curve was above 40. We know now that probably no brace would have worked, but we don't regret trying. I suspect we started too late for it to have any effect, in any case.

But I want you to know that although he would have of course preferred to wear no brace at all, he was so grateful we made the switch, because compared to the Boston, it was easy to wear. It allowed him to go to summer camp for a month, participate in school phys ed and sports with a minimum of hassle, and eat full meals without discomfort. And he will arrive at surgery with his muscle tone intact.

I have read on this forum of many children who started with SpineCor at a younger age and/or lower curve, and often they get great results with both curve reduction and rotation. Of course they have much growing to do, but they are delaying the advance of the curve at a young age. My son is still a Risser 0, but his curve is such that surgery cannot be delayed. I wonder what would have happened if we had started with a SpineCor. We'll never know.

[emarismom]

Mark,

I have been reading this forum, and specifically the Spinecor thread, for well over two years now. In that time I have seen several children who wore the Spinecor brace, and still ended up needing surgery. There are many different reasons for this that have been discussed, most often it seems the brace has not been successful with children who have larger curves to begin with.

Many of the kids who seem to be having success with the brace are younger, with smaller curves. It may be that these youger children, including my daughter, will eventually progress to surgery. It may also be that these girls may never need surgery. I even know of one young girl who was braced for 1year, had significant improvement, and is now brace free at 10 or 11 years old.

We really don't "know" if the brace will work. No matter how many people we talk to, nor studies we read, or any other factor at this point in time will give us as parents the answer we all want, that our child will be able to avoid furture surgery.

At this point my daughter has been in a Spinecor brace for about 1 1/2 years. Overall, it has been very easy to live with this brace. Are there moments when she *HATES* her brace? Of Course! There are even more moments when I HATE her brace, because I feel like I am making her suffer through wearing it and I don't even KNOW that it will work.

I have kept her in it, regardless of all of this because at this point in time, I feel it is my best option, as opposed to a rigid brace (not an option in my mind) or a wait and watch option (which I also have issues with).

My ortho is also not thrilled with the fact that all of the studies on the brace have been conducted by the makers of the brace. Unfortunately, this is what we have to work with at this time. I can also flip that same coin and say "my daughter is a potential money maker for the ortho", so he to has an interest in her especially if she progresses to surgery". If the Spinecor brace were to be proven successful, where would that leave scoliosis surgeons. (I really do like my daughter's ortho, he is great, just to show that there are many ways to look at it)

We can only take all the information out there and try to decide which option best fits into each of our particular situations. What is right for me, may not be right for somone else.

[CAmomof2]

Mark,

I feel for you as we were recently in your shoes so to speak as to what to do. Our daughter is 9, has a 26 degree curve and her ortho's advice was to wait and watch her for a bit as she is so young and has alot of growing to do so she will probably progress to surgery anyway. Ok, this is where Mommy mode set in - I just could not "wait" for progression - if I did this, I would feel bad the rest of my life for not trying anything (be it boston bracing, spinecor etc.) This is not saying that she may never progress, but at least we have tried something.

Anyway, she is in the Spinecor brace now for about 2 weeks. The 1st week was very hard - she had to get used to going to the bathroom etc. with it on. This week is sooooo much better. She is very good about not going over her "time out" of brace, and doesn't seem to mind it that much. Yay!

We go back to Dr. Rivard later this month for a check-up, so hopefully it is doing its thing. I guess I should tell you that her curve went down 9 degrees from 26 to 17 when she 1st put on the brace. And her scoliometer reading went from 7 to 4. This was encouraging to us as we went to the appointment not even sure that we would even bother getting this brace.

I wish you and your family all the best no matter what decision you make. It sure is a stressful time.
Take care, Stacy (another newbie)

[jillw]

Hi all, We had katie's appt yesterday - she's pretty much stable which is a relief...her curves actually flipped...what had been 6/3 is now 3/6. Dr. Rivard said it's basically the same curve...a slight deviation in the way one stands while being xrayed could account for it. Anyway, we can finally exhale...she grew about 1 1/2 inches since the last xray also (this is our first experience with her having growth while wearing the brace...she didn't really grow much the first 6 months she wore it)

gotta go but wanted to update you

[RugbyLaura]

That's great news Jill!

Thanks for the update.

Laura

[RugbyLaura]

Trying to find the post about the brace moving but can't. Am probably being a bit dense but am in a hurry so will post my answer here -

Immy's brace base did move and I posted about it on this thread (about a year ago). I was reassured by the good folks here that this is pretty normal. When Immy puts her brace on she tends to put it a little off center to allow for the movement. If in doubt though, speak to your brace guy.

Regards,

Laura