spinecor

[pat]

Melissa, you got thru! Our appt's November 30th~ pat

[MATJESNIC]

Yes, they called me back. In fact is it possible that Dr. Coillard called me herself. It was kind of hard to understand, but I thought that's what she said. I asked if we could possibly go in Nov but she said they were totally booked. Our appt is in the afternoon, so we will stay over in N.Y. state, an hour from the border. Then we can cross over in the morning. Nicole will miss one day of school and one night of dance classes. As usual, no time for sightseeing. Gotta get back home. I am very anxious about the appt. We will know for sure whether she is having success. Five months will have passed since our last appt. and it will be very telling. I can't wait to find out what her risser is.

Melissa

[Christina_in_NC]

Someone asked who the ideal candidate for Spinecor is - now I can't find that post.
I had spoken with Dr Deutchman - he said ideally Risser 0 to 2, pre-menses, curve 30 degrees or less, and a lower curve is easier than an upper curve, and a single curve better than a double.
That is ideal and gets the best results, that is not to say anything else will not work. Our daughter fits all of that except that we found out that her upper curve is worse than the lower - 36 degrees.
We are still headed to Baltimore and really hope to get SpineCor as we agree with Melissa about lung capacity and muscle tone issues. Every physical therapist we have talked to says they would use no brace rather than TLSO because of lack of muscle tone that the TLSO may induce.
Still, our surgeon says if she is willing to commit to wearing a brace for 23 hours, he would go with the TLSO because it is the brace he is familiar with. He did not object to our using Spinecor, just said because he did not know anything about it he would put his daughter in TLSO. BUT - if she would not reallistically commit herself to wearing it consistently, he would say go without a brace. He sees too many families having other family issues because of friction caused between parents and child with non-compiance and because of the emotional toll that a TLSO brace can cause. To him, surgery is just not that scary and he would chance that rather than risk emotional pain for several years and then face the possibilty of surgery anyhow after all that.
Christina

[Celia]

Hi...

If Cheryl is correct, than there probably isn't any difference between the Spinecor brace and a TLSO (or, for that matter, other braces) if all were applied early enough.

That's a good point! I never thought of it that way. I wonder if there are any studies which show that rigid bracing actually corrects low curves because the consensus thinking appears to be that rigid bracing will not correct but just hold the curve. The study I've seen on the Spinecor appears to show that low curves can actually resolve over time and even after weaning, small curves will continue to improve. I don't know how many children fall into this category but it's very encouraging to say the least.

[Celia]

Christina,

We just posted at the same time! I can't believe the ortho stated that your daughter shouldn't wear any support if she can't tolerate the TLSO!!!!

[mrf]

Still, our surgeon says if she is willing to commit to wearing a brace for 23 hours, he would go with the TLSO because it is the brace he is familiar with.
Christina

Christina,

That's exactly what every orthopedic surgeon that I have spoken to said as well - even those that are on the Spinecor list of providers. I find it shocking that wearing the brace for less time (say 15 hours) is looked upon as non-compliant. It seems that the "it's better than nothing" argument does not work with TLSO bracing.

[Mom37]

Bracing-seems all 3 Orthopedics we saw agree.

They all agree in trying bracing, but when reaching above 40, not sure it is worth the effort, as child must suffer bracing with high chance of progression and surgery. My daughter had no medical conditions in past, but now does causing Scoliosis, but will get back to that. I have been to 3 pediatric orthopedic surgeons and 1st said to brace in Boston and come back in 2 years. He was not familiar with Spinecor and recommended no other brace. My daughter was at 30 then. Braced with Spinecor by Dr. D (chiro in NYC.) Correction less than 5 degrees. Spinecor Orthotist and Spinecor rep Andrew Mills did one month and agreed with bracing by Dr. D. At 3 months in Spinecor, second Orthopedic surgeon (Shriners in Erie, PA) braces both Spinecor and Boston, and said my daughters curves progressing quickly and felt no brace would hold her curve. He said Spinecor as good as any and it wouldn't hurt to continue, but he said surgery was eventual. Third Opinion Scottish Rite in Dallas, TX doesn't endorse Spinecor, but both Orthotist and Doctor was interested as hadn't seen one, but hospital had looked at and study didn't have enough data for them to yet support. Opinion that curve, now in upper 40's may not hold with Boston, and eventual surgery. Since she had a high curve MRI was ordered for the first time, and medical conditions caused Scoliosis, so we have to attend to that first. She will have Chiari I surgery Dec 4th after 2 pediatric neurosurgeon opinions. Upon reviewing first Orthopedic notes when sending to othe doctors, he added in notes high progression likely, so he was just trying, but didn't seem convinced either on paper. We are still using Spinecor, as won't hurt, and still believe that Spinecor was best option for compliance and worry with hard braces on muscle atrophy. With her Scoliosis not being being ideopathic, (Chiari I, Syrinx, Syringomyelia, Hydromylia)both Neurosurgeons believe that that is the cause for high progression and she may still need fusion eventually, but advised to continue to see Orthopedic Surgeon, and use brace. Don't know if this helps anyone, but thought it may help in the discussion.

[Celia]

Melissa,

It's quite possible you spoke with Dr. Coillard directly. The few times I've phoned, I either get Dr. Coillard or sometimes even Dr. Rivard. I love the fact that they are so approachable and you can ask questions and have peace of mind. They are so down to earth. I just love them *wipes a tear*


Mom37,

Good luck with the surgery in December! I know a few parents whose children have had the procedure however their children were much younger and the curves corrected somewhat after the decompression.

[Mom37]

D

Mom37,

Good luck with the surgery in December! I know a few parents whose children have had the procedure however their children were much younger and the curves corrected somewhat after the decompression.

Thank you for your note! The two pediatric neurosurgeons we went to both are concerned her curve is going to still continue to progress, yet they said it could stop progressing. They did not seem optimistic, but did say that was really something the Orthopedic surgeon would need to give his opinion on. We won't see the orthopedic again until after the Chiari surgery. He was concerned her curve is borderline of being past bracing, but said she is not a fusion surgical candidate yet. We will continue with Spinecor.

[sas1126]

SpineCor - Scoliosis Specialists

Hi!

I know everyone has questions about the SpineCor brace and I just wanted to lead you to a group of wonderful Chiropractors called Scoliosis Specialists who can answer all your questions and see if the soft brace is appropriate for you/your child.

They have offices in New York, Chicago, LA and Altanta and really take the time with you to discuss if and how the soft brace can benefit your specific case.

Check out their site at www.scoliosisspecialists.com

You can email or call the doctor closest to you. Also there will be an 800 number going up on the site in the very near future!

Best,

Sara

[gerbo]

it's a bit spammy, isn't it???

[christine2]

Has anyone heard from Gallathea (Caroline)

Caroline how was your follow up in Montreal!!!!

Christine

[bizzleber]

spinecor and gym class

How do the spinecor kids deal with gym class at school? Do they change the undershirt after gym? Do they take everything off and shower? Or do they just go on with the day in the brace and same undershirt? (I have a son and am assuming he would wear an undershirt underneath the brace.)

[gallathea]

follow-up in Montreal

Hi everyone:

We had our follow-up in Montreal last week and all seems to be going smoothly. We didn't have any out-of-brace x-rays, but her in-brace ones showed that Annabel's upper curve was holding at 20 degrees in-brace (same as the initial correction) and that her lower curve had gone down even further from the initial correction (from 12 to 9). All of this is within the margin of error, of course, so nothing may have really changed, but we're just happy that the brace seems to be doing it's job for now. Overall, we're so relieved that it's such a live-able brace. Annabel rarely complains about it, and it seems to be like a second skin. Incredible.

We're going down to see Dr. Betz next week just to learn more about his vertebral stapling in case she starts to get a lot worse. It's hard to imagine the alternative of trying the TLSO.She started with 28 upper and 18 lower, and she's only six years old, so we're trying to be as aggressive in our research as possible.

I'll keep you posted!
Caroline

[gallathea]

mri

I forgot to add that we also had an MRI done, and all is fine. What a relief.

C