spinecor

[Celia]

Actually, he's turning out to be quite a nice doc From everything I've heard about him, he's quite brilliant. He'll never be the same as Dr. Hedden but hey.... can't complain I don't know if we'll continue seeing him or just switch to St. Justine now that Deirdre is being followed by Drs Rivard and Coillard...only time will tell.


How about you ? Will you still continue to see the old ortho or switch to Mr Mills ?

[gerbo]

Actually, he's turning out to be quite a nice doc From everything I've heard about him, he's quite brilliant. He'll never be the same as Dr. Hedden but hey.... can't complain I don't know if we'll continue seeing him or just switch to St. Justine now that Deirdre is being followed by Drs Rivard and Coillard...only time will tell.


How about you ? Will you still continue to see the old ortho or switch to Mr Mills ?

he's quite brilliant and he is ok with the Spinecor? Good sign! (for me as well)

old ortho consultant is rude, arrogant, not interested and i don't think he likes me either, so shall we stay with him?? at least he is local, so it depends i think

mr mills is an orthotist, i.e. not an orthopedic consultant. If the spinecor works out well *pray, pray* we are likely to switch to a consultant who knows about it and is happy to prescribe it

[cyprusmom]

I'll ask these questions to mr mills, the manufacturer of spinecor, when i meet him in december for lisanna's assesment

now i've come to think of it, any other questions anybody wants me to put to him??

Yes, please ask him, since he takes forever to reply to any e-mails, if any spinecor specialist around the world could do the follow up on a patient. I was told that all the initial information and progress goes to the headquarters in Canada? Do they all have access to that?

[pat]

No luck at the dance store, he looked thru all his catalogs for bodysuits w/snaps, I'm thinking I might just get the bodysuits, and have a tailor create a bodysuit w/snaps! Ta dum! pat

[cyprusmom]

Has anyone been to the shriners after having the spinecor fitted? What is their approach to it?
We are scheduled to see them in April when they come to Cyprus and offer free assements and where needed treatement in the US. They are very highly regarded here but I am afraid they are very much pro-surgery and probably pro rigid bracing. Am I correct?

[MATJESNIC]

Pat,
I'm so glad your daughter's doing well with the Spinecor. It is really not a huge adjustment for them because they wear all of their same clothes, do all of their activities in it and it doesn't seem to be uncomfortable, for the most part. If it works for Nicole, I will be spreading the word. We asked Dr. Deutchman whether we should keep Nicole out of the brace for 24 hours. He seemed to indicate that there was no definite answer as of yet. We told him we would prefer to do it that way. So in Dec. she will get x-rayed without the brace after 24 hours of brace-free. Then we will put the brace on her and get another x-ray. All of the dance bodysuits in our area are long-sleeve only. I don't know why. Meanwhile, I am having 4 more bodysuits from Spinecor shipped to me. Nicole really likes them. How is your 14-year old doing after her surgery. What has the recovery been like? Any restrictions? Are your girls posting on SpineKids? The kids are so wonderful and supportive of one another. Take care, Melissa

Hi Melissa! My oldest daughter is almost 14, she had fusion surgery a year ago, my 9 year old's spine is straight as can be; believe me we check often!!

Hello everyone else! Trying to keep up with all the new posts! I'm heading down to a dance store tommorrow, maybe I'll be able to find dance bodysuits with the snaps on them. And no, my daughter's not wearing anything under her bodysuit either, otherwise she wouldn't be able to go the bathroom w/o removing EVERYTHING! Thanks for all the great tips/postings!

Today, almost a week later, she's wearing it 22 hours a day, without a single complaint!

I'm curious, when you all go back for your re-checks, are you getting x-rayed (again) in brace, or out of brace, and if it's out of brace, how many hours out before the x-ray is taken? Pat

[gerbo]

if you look on the spinecorporation website, you'll see that the recommendation is for x ray assesment in and and out of brace before starting treatment followed by PA xray in brace at 1,3 and 6 months, followed by 6 monthly xray in brace (PA), lateral xrays in brace only once a year.

States that x ray out of brace should not be necessary until weaning.

does make sense to me

gerbo

[pat]

I'm puzzled, don't we all already know the correction we're getting w/the brace, why continue to x-ray w/brace on - - - isn't the big question whether the brace is truly correcting/stopping the curve when it comes off . . . Someone help, I feel very dim Unless, of course, they continue to readjust/manipulate brace . . . I guess that might be it ?? With hard brace, we always took it off 24 hours before x-rays to see truly what spine was doing.

Yes, Dr. Rivard also told us laterals only once a year.

Melissa, my post fusion kid is really doing great, recovery was nowhere as bad as we anticipated. Spinekids is a great site, I'm totally in awe of those girls, they are so supportive. Thanks again, continuing to learn so much w/you guys! Pat

[gerbo]

the claim is that the level of adjustment you achieve (in brace) in about 6 months is more or less the level you end up with once the brace comes off so many years later, so correction is much more permanent as with hard brace (where you kind of get back to where you started with)

I do not think that a picture out of brace will tell you a lot, because I doubt whether the spine/muscles/ligaments have had time enough to permanently adjust themselves.

so contrary to the hard brace, it is the correction you achieve in the brace what needs to give you your hope(?) and confidence(?) (you know what i mean)

Frequent adjustments must be a feature of the brace, with recommended checkups at 1 month and then every 3 months.

best wishes

gerbo

[cyprusmom]

Speaking of frequent adjustments to the brace I wonder about the strength of the straps. I just received two of them in the mail to replace because the snap would come lose. Meausuring the old number 4 with the new one....it is already 3-5 centimeters longer and that only in 3 weeks of wearing it!!

[Celia]

Oh geez....I never even thought of stretching of the bands !! The bands can be adjusted up on the shoulders, right ??? I wonder how much stretching is reasonable ? Another worry to ponder......

[MATJESNIC]

Ladies,
This is all so interesting to me. I, too was under the impression that we should care more about the spine without the brace than with the brace. I have to say that when we went for our 1-month check-up, they took one x-ray in the brace and it was up 2 degrees. Dr. Deutchman said it meant nothing and was not at all concerned. I wasn't concerned because it was still a great correction in the brace and I didn't think it really "counted" when you had it done in the brace.
It really is confusing to me. I know the philosophy with Spinecor is not at all like the philosophy behind hard bracing. The Spinecor is not squeezing the spine straight. But for some reason it still doesn't make sense. When I had spoken to people whose curves were being reduced with Spinecor, I am now wondering if they were talking about in-brace degrees. I know I am rambling!!!
I am also constantly thinking about the bands and whether they are functioning as well now as they did when we were last in New York. All I know is, I keep touching Nicole's left shoulder blade to see if it is still sticking out, and it is. Anyway, let's continue to keep in touch! Melissa

[MATJESNIC]

We took Nicole to the Shriners in Phila, Pa. for a 2nd opinion. Our first opinion was with an ortho from Temple who prescribed the boston brace. The ortho basically said that the hard brace has been around for a long time and didn't really know enough about Spinecor to recommend it. But he said that he respected our decision and that we should stick with one thing and not go from doctor to doctor to ask everyone's opinion. He said that if it didn't work and Nicole needed surgery that we should not feel guilty or beat ourselves up over it.
I believe there is a Shriner's in Erie who is involved with Spinecor.
Melissa

[MATJESNIC]

Pat,
Does your daughter like the Spinecor bodysuits? Nicole loves them. When I tried different ones, she was even upset that the tree was missing. She said, "I always know where to put the belt by looking at the tree." Having snaps put into a bodysuit is a great idea. Melissa

[Celia]

Melissa,

I'm under the impression that it's the inbrace correction that's important and I'm happy to learn from all of you, that there will only be one inbrace x-ray at the next followup ! As Gerbo said, the inbrace correction after three to six months (in general) is the correction that can be expected at the end of treatment after weaning from the brace. So.... Nicole's inbrace correction is somewhere around 25 degrees ?




Celia