spinecor

[ohiomom]

Has everyone in here had their children fitted for spinecore with the aid of computer imaging? This was not done for my daughter. The orthotist took measurements of her w/ measuring tape and recorded them, since we weren't 100% sure about the brace at the time. Upon arrival of her appointment he basically started fitting her into the brace, I am kicking myself now for not being more vocal about him not having some more precise knowledge as how to custom fit her for her particular curves. Her orthopaedist is here in ohio, however, orthotist is in PA. I do believe I have some questioning to do here. She will see him again next month, does anyone have any suggestions for anything I should address him about. Perhaps if you can give me a breakdown of what your children went through pertaining to the fitting and follow ups of spinecor, so I know what is usually the protocol for spinecor. So very disgusted right now, hope to hear from any of u soon, thx.

[desheah]

hi marta,

maybe i'm a little confused, but that is pretty common! are you only seeing jonathan the orthotist in erie through presque isle orthotics (or some name like that)? did you go to the shriners in erie? if you didn't, then i would highly recommend going to dr. sanders (an orthopaedist) for a second or even a third opinion about your daughter especially considering the potential congenital nature of one of her curves. of course, this is just my opinion, but dr. sanders is a wonderful doctor, and he works closely with jonathan in making braces. considering they are down the street from one another, it is a much better situation than the ortho in ohio.

as for the spinecor fitting, drs. rivard and coillard did use a computer program to figure out the best configuration for the straps and such for my son. i believe that they based this on the x-ray that they took out of brace and mapped points on it to correspond to the placement of the spinecor. then handling lucas, they manipulated him with corrective movements and placed the bands accordingly.

did the orthotist have x-rays on hand of your daughter? perhaps then with the x-ray and the tape measurements, he put those numbers into the computer in between your appointments . . . you can always ask. she is getting correction in the brace from your initial post. perhaps at the one month follow-up (you will have one right?), they will be able to further correct her.

good luck!
deshea

[ohiomom]

Hi, deshea. We are in central/southern ohio and the only orthopaedist that I saw that deals with spinecor braces was in cincinnati. Jonathon makes trips to cincinnati @every two months which is how we got in touch with him. We went to Erie to get the brace sooner. Jonathon did not have alyssas xrays or even notes as to the degree of her curves. We went by my memory of her initial xrays of the orthopaedist we saw in columbus. He tried to have copies faxed and emailed but the images were blurred and small and he was only able to get two of the curves measurements on his own from them. I feel he should have obviously had this information in his file already especially since that would have saved us alot of time waiting around for everyones nurses to send out and compile information. Yes, we did see some correction with the brace her thoracic curve went fro 39 to 32 and the lumbar one from 31 to 21. I just wonder if we can get better correction if the fitting had been done utilizing the spinecor software? I am pleased with the spinecor brace and perhaps i am nitpicking about the technicalities, but that is what i do, i just wanna know that she is getting the best possible correction that she can.

[cherylplinder]

Marta,
I'm a bit confused. Does your daughter have a high thoracic curve that is 34 degrees, another 40 degree thoracic curve, and a 34 degree lumbar curve?
It sounds from your post like they are bracing the two "idiopathic" curves. What does the congenital curve measure when she is in brace?

I also would get a second opinion from Dr. Sanders in Erie. Jonathan has been fitting the brace for quite a while, I think, and it might give you comfort for him to look at her. Be sure you tell them that you want an appointment with the orthotist, too, not that he just be available. Let them know you definitely want to see him.

We also go to Montreal. Dr. Rivard and Coillard are wonderful. You couldn't go wrong there, but it is expensive.
We are having excellent results, though, and I haven't wanted to change anything, even with the expense.

Rachel started out with a 38 degree thoracic curve and a 27 degree lumbar curve. On her first fitting, she was 31/19 in brace. In April, she was 23/22 in brace. This time she was 20/18 in brace.

HUGS,
Cheryl

[cherylplinder]

I was typing as you were posting. I see that you have already seen Jonathan. I understand your reservations.
Dr. Coillard did not use a computer to fit Rachel's brace, either. Maybe it is not necessary if you have a lot of experience fitting the brace, which I think Jonathan also has. I hope that makes you feel better.

Again, you could always make one trip to Montreal and see how you feel. It really is not very far from you(8 or 9 hours?)
ALso, maybe you can have all your original x-rays with you on your followup appt. We tried e-mailing x-rays once, and it didn't work for us either.

I hope it is some comfort that the original correction Rachel recieved in Montreal is close to what you acheived with Jonathan on first fitting.

I know how stressful this all is! You are in good company.

A big cyberhug!
CHeryl

[Celia]

Cheryl,

What wonderful improvement in such a short period of time for Rachel! I'm really surprised that Dr. Coillard didn't refer to the software program for the initial fitting - are you sure We had a similar experience to Deshea and Lucas. Deirdre had three x-rays prior to the fitting - P/A, lateral and prone. After having the x-rays done, measurements were taken and these numbers were jotted down on the computer. Deidre was then fitted with the brace and we were sent off for the final inbrace x-ray. The first followup was 5 weeks later and the following one 5 months thereafter. Each time we go, measurements are taken and plotted on the computer and again adjustments are made and we're sent off for the inbrace x-ray.

I don't blame Marta for being concerned! Granted she is getting some correction but maybe she can be getting *better* results?!

[ohiomom]

Thanks so much, it is so nice to get some feedback and see how everyone else deals. I'm glad to hear your daughter is getting such positive results, that's really great. My husband is trying to calm me down and wait until the appt. in cincy next month to see what's goin on before i make plans to start leaving the country! Plus I don't know how that would work with the insurance seeing as how they've already covered their share for her current brace, surely i wouldn't get approval for the same thing? I don't know, I'm trying to relax and be open-minded.

Does anyone have any suggestions as to the undergarments the girls wear with their braces and how long it took them to get that no/2 strap buttoned? i'm sure everyones varies but my daughter is having a heck of a time trying to button one that is behind her, i'm sure it will take time but she gets soooo easily frustrated and discourged. She doens't like the bodysuits and she also doesnt like regular undershirts, she complains alot about the sleeve she has and how tight it is. Sure this is common in the kids adjustment period? Well, this is the first nights she's sleeping in it so we'll see how it goes. Oh yeah, how does everyone wash it? She wants me to wash it hoping that is becomes less rigid. Thx for all your replies. Hope I can be as helpful sometime!

[christine2]

ohiomom

Please feel free to e mail me or perhaps we can speak on the phone. I did that with Melissa and it helped me tremendously!! My husband and I researched alot both different doctors as well as research papers.

firstcmd@sbcglobal.net

Christine

[MATJESNIC]

I agree that it is easier to email or talk on the phone about all of these specifics. I would be happy to help. My address is matjesnic@comcast.net.

Sept. 4 will be one year that my daughter is wearing her spinecor so I could really give you some of our experiences.

Melissa

[cherylplinder]

They did put Rachel's numbers in the computer. I didn't realize it was a program for fitting the brace. Sorry!

Be happy to talk to any of you buddies any time! My e-mail is cherylplinder@hotmail.com.

Hugs!
Cheryl

[Celia]

I'm almost certain that Marta would get better results if Jonathan had at the "very least" an x-ray to work with

[ohiomom]

I'm wondering what the girls preferences for bodysuits are in here? I went to bodysuit.com and ordered a couple and now I've just been browsing through the specialclothes.com website. They seem to take quite awhile to ship out, is it worth it? Are they just as nice and/or better than bodysuit.com?

[MATJESNIC]

We tried Special Clothes and Nicole didn't like the way they fit. But you may have better luck. They are very nice and will work with you. Nicole was happy with bodysuits.com. Pat recommended them to us.

Melissa

[gerbo]

re clothing; lisanna prefers not to use any bodysuits at all, the underwear currently in fashion (in the UK at least) have a bit of a "hotpants" appearance, with slightly longer legs, they suit her her fine. Toppart of the body doesn't need anything

re software; main reason to use this is, is that with four straps and different ways to attach these, there are many different configurations. Level of apex and direction, and also number of curves are variable and all have their own configuration of straps, hence need software, just to remember. I suppose if the montreal drs come across a curve they see a lot of, they will not need to use the software, as they remember

cheryl; isn't your rachel doing fantastic!!

gerbo

[cherylplinder]

Thanks, Gerbo! Yes, She is doing fantastic!
I know you are encouraged with Lisanna's results. Like you, I keep hoping that Rachel will curves will continue to improve, but will be relieved if she even holds where she is.
I keep reminding myself that the literature on juvenile scoliosis is probably primarily based on traditional braces and not the Spinecor.
I am hopeful now that she may avoid surgery.
Thanks for cheering us on!
Hugs!
Cheryl