spinecor

[jillw]

YAY YAY YAY YAY YAY! That's great news and must be a relief for you. Did she have compensatory curves before wearing spinecor or did they only come once braced? Or if they were already there have stayed the same or grown since you were braced? Did they measure the size of those curves or do they appear very small? I have also been told the compensatory curves are not something to worry about, BUT I can't help but get concerned. When Katie was 1st put in the brace her primary curve went down but her compensatory curve grew a little bit (which made her compensatory curve bigger than her primary). I did worry about it-fortunately when we went for the 1st follow up a month later, her compensatory had come down too. We go for her next checkup (which will be after 6 months of spinecor) in a couple weeks and I'm already nervous.

[WNCmom]

Wonderful news!!!! I'm so happy to hear it.

[HaleyMom]

Great news Emily's Mom!!!

Are you doing anything in addition to the brace? ie specific exercises, yoga, chiro, foot orthodics, vestibular eye exercises.....

I want to make sure we don't miss out on anything that might help our daughter.

[emarismom]

Jillw,

Emily has had a small cervical compensatory curve since her initial diagnosis. It did increase at the December xray to 14 degrees, this time the doc did not measure it, as since Emily did move in the xray, that area was a little blurry.
He did not measure the lumbar either. I am a little worried, as these compensatory curves have been discussed many times here, but the improvement in the thoracic area is HUGE, so I'm going to try to focus on the positives for the time being.

Haley Mom,

We haven't been doing anything else except wearing the brace and doing the corrective movements that go with it. To be honest, we haven't been 100% consistent with the corrective movements either.

Good luck to you Jill at your upcoming xray. I have been nervous for weeks over this visit. Now I have to get through Friday as Emily has an MRI (with sedation) for the Chiari/Syrinx.

[jillw]

Emaris, Good luck with the MRI! Will she fully be put under (i.e. intubated and full anesthesia) or just given some sedation? I'm curious because the local ortho ordered an MRI when my daughter was 1st diagnosed but nobody seemed to think she needed sedation (there aren't pediatric orthos or pediatric radiology where we live as its not a large market so I don't think they have much experience). I couldn't imagine a fully conscious 7 year old remaining perfectly still for 1 1/2 hours in a tiny chamber so I ended up having her get an open MRI. She was a champ, but unfortunately the MRI didn't go high enough to rule out chiari and didn't go low enough to rule out tethered cord. We're going to have to do another MRI (and we will travel to a hospital that has a PEDIATRIC radiology dept), but I'm curious how they do the sedation (which would definitely be needed if my daughter was going to be in an enclosed MRI).

I'm glad to hear at least the one compensatory curve is still mild - hopefully the fact that he didn't measure the other curve means its mild also. Given that, along with her huge improvement in the thoracic curve, it doesn't sound troublesome. Hopefully, now that the thoracic is down, the compensatory curves will start to self correct in the upcoming months.

[HaleyMom]

Good luck with the MRI.

My daughter had an MRI when she was 9 - complete spine - fully enclosed machine - no sedation. The entire procedure took 1.5 hours. They strapped her head down to minimize movement and gave her head phones so that she could listen to a CD of her favorite music.

She did just fine - closed her eyes and listened to her music. She did not get scared or claustraphobic. I was able to sit beside her the entire time - very cold and very noisy

Hope everything goes well

[emarismom]

Emily has had 5 MRI's in the past. The first one was brain and full spine and she was five years old. The whole thing took around 4 hours. It was horrible for me. The sedation is usually given intra veniously, but she has never been intubated for an MRI, only for surgery.

The last four (post surgery), were only of the spine to check the status of the syrinx. They have taken anywhere from 1-2 hours. Last year we did try to have Emily do it without sedation, but she kept moving so the doctors had
to sedate her. I have been explaining to her all year that she is old enough to handle it without the meds, but she is very scared and says "I just want to sleep though it".

After Emily's diagnosis, I was terrrified that my son "could" have an asymptomatic Chiari, so I had an MRI done on him. He was 9 and was able to do it with no sedation. Every kid is very different with how they handle things.

[RugbyLaura]

Michelle,

YAY!! I'm thrilled with your news (as I'm sure you are). That's fantastic and also annoying - all that worrying for nothing! What a contrary beast Scoliosis is. In December you felt confident that Emily's back was looking better & the xray was bad news, now the worry & then good news. You just can't second guess can you? And she's grown an inch - Immy had only grown 1.5 cm in the same period. What do you consider to be the cause of the increase in December? (You've probably said before, but I have a hopeless memory!)

Immy also has a small compensatory cervical curve. This has not been measured but Mr Mills & Mr Cole are "keeping an eye in it" as cervical curves are apparently notoriously difficult to deal with. I know we are all worried about these cervical curves, having seen Lisanna's progress - but I will try to remain positive.

Immy had an mri in November last year (aged 10). She was very nervous but ended up actually enjoying the whole thing. She was not sedated, nor strapped down She had headphones & listened to a talking book. Unfortunately the CDs were an hour long & the 1st ran out before the scan was over. She was too shy to ask them to put the next one on but it didn't matter as she ended up falling asleep! Yes it was noisy & cold, but nowhere near as bad as I was expecting.

Laura

[jaymes10]

3 wisconsin daughters

It' been awhile since I've been on. We are going to see Dr.Rivard 4/18 with our 3 daughters Jacqueline 8 (leg length differential) Emma 6 (52 degree thoracic 39 lumbar) and Lexie (20 thoracic 18 lumbar slight leg length differential). Emma had been in Spinecor with Dr. Sanders from Shriner's in Erie with no improvement at 39 thoracic 32 lumbar. He said just to leave her out of brace because she is going to progress anyway and fusion is absolute just a question of when probably at 8 he said. Dr. Rivard thinks thats nonsense and feels he can help her. Has anyone else had this situation? Has anyone from Wisconsin gone there? I would welcome any info on what to expect etc.

[cherylplinder]

Would Dr. Sanders not consider casting? She is so young. Anne has had good luck holding her daughter alternating casting and Spinecor with Dr. Rivard.
Best of luck.
Dr. Koury(sp?) at UAB in Birmingham, Alabama moved from Erie and casts children.
I am confused as to why Dr. Sanders did no casting for her.
Hugs
Cheryl

P.S. Do a search for posts by arairdon. Her daughter is Lauren.
Well.......... I did the search and she has only post on Spinecor thread. I doesn't break it down. But you could send her a PM.

[mariaf]

Hi Jaymes10,

Have you considered vertebral body stapling?

I was about to ask if you had - and then Cheryl mentioned Ann Rairdon. Ann's daughter has an appt. for a consult at Shriners in Philadelphia on 4/24 to see if her daughter is a candidate for the stapling. (My son had it as well four years ago and is doing well). I'm not exactly sure of the circumstances for Ann's daughter, but between the casts and the Spinecor I guess there wasn't much improvement AND as her daughter is getting older (she's 8 or 9) I think they have pretty much had it with both and are seeking a better alternative.

If you are interested in stapling, please visit this website (that's where I saw about Ann's daughter's appt.)

www.vertebralstapling.com

Also, you can check out the VBS Awareness (the link is in my signature). If I read your post correctly, they are considering fusion for your daughter when she is 8?? PLEASE look into the stapling or other alternatives - at her age, even at 52 degrees, she might be a candidate for stapling if she is flexible. Even if she isn't, there are other alternatives to fusing a child so young.

Please feel free to e-mail me and also to contact Janet Cerrone at Shriners in Philadelphia - her contact info is janetcerrone@comcast.net or call 1-800-281-4050 and ask for her. Please do some research here and on the other site I just posted and you'll see that everyone speaks VERY highly of the team in Philadelphia which is led by Dr. Betz. I'm hopeful they can come up with a better alternative for your daughter.

I also have Ann's e-mail address if you'd like it please send me and e-mail or a PM.

Best of luck to you!

[christine2]

To Jaymes10

My daughter was diognosed at 6yrs old with a 33 degree curve. The ortho was very negative about any kind of brace helping her. Then we found Dr. Rivard and Spinecor. Dr. R and Dr C are amazingly compassionate and are truley looking out for the kids. He will tell you how it is. If he thinks he can help, he will tell you, if not he will tell you that as well.

My familiy decided to give it a try with the attitude that we had nothing to loose. As you can see in my signature we have had excellent results.

As far as what to expect perhaps we should PM that so we can get specific. We drive to Montreal it takes us about 7 1/2 hours one way. I try to plan mini vacations each time we go.

[shaes mom]

New to forum

Hi everyone,

I've been reading these forums for some time. My daughter was diagnosed at age 9 with two 20° curves. She's been being seen by Dr. Braun at NEMC. It's the old "wait and see" game. In December we were told that she was at 16° lumbar and 11° thoracic. Now (last week) she went to 18° lumbar and 18° thoracic. We're considering the Spinecor brace. We've been in touch with Dr. Pappas and Dr. Siq and they have been wonderful!!!! However, we're having problems with the insurance because we have a PPO and they're out of network. Of couse, there's no one (that we know of) in-network. We have Harvard Pilgrim. I'm so mentally exhausted from all of this and time is of the essence.

Does anyone have any advice?

Thanks.

Theresa (Shae's Mom)

[WNCmom]

We also had to go out of network for the SpineCor 6 months ago, but our insurance (Assurant Health) did cover it. Dr. Ouellette in Atlanta fitted the brace, and said his office would help us appeal with the insurance company if there was any problem--but there wasn't. Do you have the code for it? The code we submitted is L1005. Before I submitted it I called the insurance company, told them the code, and asked if they would cover it. They said yes. Are your doctors orthos or chiros? I don't know if docs talk to each other about this, but Dr. Ouellette is very nice and perhaps the folks in his office could offer some advice...contact numbers are at www.scoliosisspecialist.com.

Good luck (and don't forget to breath--this is all exhausting, I know)!

Mary Ellen

[shaes mom]

Thanks WNC Mom

I believe Dr. Oulette is affiliated with Dr. Pappas and Dr. Siq. My daughter is currently seeing and Ortho in Boston but we are looking into Spinecor. We have Harvard Pilgrim and I was told today that that's the way it is. If it's in-network we're covered up to $2,500 but out of network there's a $500 deductible and then it's covered 80%. The total cost is $4,725 so it's going to be a fairly large chunk of change for us. Thanks for the info on the code. Actually, Dr. Siq did provide me with all of the codes and the insurance company is going to research to see if there's anyone in-network who can provide the brace. I believe I already know that answer - NO. I can't believe we live in BOSTON - with some of the best medical/teaching hospitals and no one here will even think about using Spinecor. Dr. Braun (the Ortho at Tufts/NEMC) didn't even attend the symposium last year that was held right here in BOSTON!!! I'm sick to my stomach.

I heard today though that there are lawyers in Georgia who are now filing a class action suit (I believe) against some doctor's for not allowing patients to use Spinecor. Again, just hearsay. I don't know the specifics. I'm actually going to do some research on it.

Thanks for your support.

Shaes Mom
18T/18L