new and seeking info.

[stephanieC]

Hi all, I am new to the forum but have been reading for a few weeks. You are all so wonderful and informative to each other. It's heart warming to read all the posts. My daughter has recently been diagnosed with scoliosis. She is 9 years old and has a 26 degree cobb angle. I think it is where her thoracic and lumbar areas meet. First Ortho said wait and see. Second ortho said rigid brace. I have read so much about spine cor and the vertebral stapling. My husband and I have decided to pursue the spine cor brace right now. Has anyone heard of Dr. Haralabatos out on Long Island, NY? I live in NJ. If anyone knows a good Dr. near me who uses this brace I would love to know what you think of them. I am getting my passport ready in case I need to fly to Montreal. My second daughter, age 7, also looks to have a curve. We will be getting her x rayed soon. Has anyone had great success with this spine cor brace long term? I have many questions but don't want to get out of control here :)

[Celia]

Hi Stephanie,

I don't know if you're aware but there is a very long Spinecor thread in the "Bracing" section and you'll find many parents with children your daughter's age who are getting remarkable results with the Spinecor brace. I think it's success has to do with corrective movement and the idea put forward by a few orthopaedic surgeons that scoliosis progression (pathogenesis) is based on postural disorganization and it really is a bio-mechanical deformity regardless of "cause" Balance and symmetry is important in resolution of this deformity. Of course this is all theory and my experience is a work in progress.

[gerbo]

the long term outcomes on paper are certainly very good, but nobody who has posted on this forum has had enough and long enough experience to be able to confirm this. Certainly initial results in younger people seem very promising, but whehter that will be maintained in the longterm is not known. However, and this is a big however, neither is there anybody who can tell you great things about hard braces, with regards to effectiveness and acceptibility so on balance, i would still choose the spinecor for my daughter, as at least it is a kind of brace she can physically and emotionally cope with, even though currently we feel a bit insecure as to whether it is doing her any good.

hope that helps

gerbo

[flowerpower]

I am in the same boat as Stephanie. My 9 y.o. was evaluated last Tues. by our ortho dr. He measured 20T. There is family history but when my son was seen by him last Dec. it was noted there was a teeny bit of leg length discrepancy. This time dr. said the pelvis looks more even so dr. wants to wait and evaluate again in 6 mos. I inquired about the spinecor ( i had asked before with other son) but this time asked why he doesn't recommend it. He said that they did use it when it first came out but stopped about 5 years ago because they weren't seeing the results they thought they would. He felt it wasn't doing any better (and maybe a little worse) then hard bracing. He also said that many of the drs./hospitals that were previously using it in the US had also stopped, very few places in US use it now. I was hesitant to post this but I just don't know what to think, many people seem happy with it. but like Gerbo said, the long term outcomes on paper sound good, but haven't seen anyone with long term good outcome experience to confirm. He wasn't trying to talk me out of it, I just asked for his opinion/experience and he gave it to me. I'm still up in the air about what to do if/when something needs to be done, I'm glad I have time to research and see others' outcomes/experiences. This forum is invaluable to me, I appreciate the input of each and everyone here.

Renee

[stephanieC]

Thanks all for your responses.
I will read through "bracing" section again for information I may have missed. I guess we must all place our faith in what "feels" right for our children and keep that faith. Some days harder than others.
We are choosing the spine cor brace because I believe I will get the most compliance from my daughter. I also like that she can wear this brace throughout her daily activities.
How do your children feel about wearing their brace? How long have your children been wearing their brace?
Gerbo... why are you feeling a bit unsure of the spine cor brace right now? I hope it is ok to ask.

[jillw]

Stephanie, My 7 year old daughter has only been wearing the spinecor brace for a couple of days now so I can't provide any meaningful information about her personal results. The first two nights in the brace were a nightmare and she just couldn't sleep. The days were tough too. But last night she slept relatively peacefully and tonight she was actually singing in her room as she was in her room going to sleep (it made me so happy). She moves differently, a bit of a John Wayne cowboy walk because all of the crotch and thigh straps. I don't know if this will go away with time. Today she chose not to take the allowed out of brace time because she thought it was too much trouble to have it put back on. So I guess she must be getting used to it and hopefully its not that bad (and of course I know its much better than the alternatives)

However, I will say that I was relieved to hear Renee's doctor's reasons for not recommending spinecor (and thank you for sharing that info Renee, I like to hear all I can about it both good and bad)...I was afraid that he was going to say he found it to make things worse or something. However, to hear that the results were no better and maybe not quite as good as hard bracing is something I can live with....If we can get somewhat comparable results to a hard brace for my daughter in a much less draconian manner than it is worth it. And since my daughters curves aren't very big yet I am hoping she can be one of the "homeruns" who actually gets and maintains a correction from the brace while keeping her muscle tone. Of course I don't know what type of results we will get yet.

It is so hard making these decisions, isn't it?

[momw/scoli]

I don't know this for a fact, but I think the spinecor isn't readily availible in the US is because most insurance companies won't pay for it. Do places like Shriners and Scottish Rite offer it as an alternative to hard bracing? If they don't, why don't they? These are just things I've wondered about. If I was still in the beginning of this whole process with my daughter, (I think) I'd be on a plane flying to Montreal to get a spinecor.

Becky

Married to Scott, Mom to Brandon 15, Emily 12 curves are 32 and 36, and Callie 9
Emily is currently wearing a Boston Brace and hates it! She named it Lucifer. I wore one in 1981-1982 and hated it too!

[jillw]

Becky, you bring up a good point. Since there isn't insurance coverage it would make sense that it wouldn't be as widely available in the US; especially when coupled with the fact that it is so customized. You don't hear as much about the Providence brace either which is a brace also not generally covered by insurance.

The Shriners Hospital in Erie, PA does offer Spinecor. I believe Johns Hopkins does also.

[stephanieC]

Thanks Jill. I'm glad to hear your daughter is adjusting to wearing the brace. How does she feel at school? My 9 year old seems ok with the idea of this brace but, actually putting it on may make her feel differently. I have a 7 year old daughter who we will be having x rayed to see about her curve. My appointment is in NY with Dr Haralabatos. We go Oct 29th. Dr. Haralabatos and Dr Carrion out in Stony Brook, Long Island use the spine cor brace. I have spoken with the office manager at the orthotists office who will fit the brace, and they seem to say that the brace requires a lot of adjustments to get it just right. The insurance companys do reimburse for this brace but not at a high enough rate to make all the "work" worth it. As of right now that office has put in a request with the insurance company that I happen to have, blue cross blue shield, to receive a higher reimbursement rate. Hopefully, I will feel good about these Drs. and this orthotist, if not, I will probably go to Montreal or Shriners in Erie, PA. The Dr. at Shriners trained with the Drs. in Montreal.

[jillw]

Stephanie, it's all very new to her wearing it to school but so far its not too bad....she was fitted for it Tuesday afternoon. On wednesday I kept her home from school most of the day because we were all exhausted from the trip to MOntreal and she slept terribly that night. (and I hadn't figured out the bathroom thing yet) However, at the end of the day on Wednesday, I brought her in and I spoke to her classroom about scoliosis and what Katie was wearing and then the kids had a chance to ask Katie questions. I think that made her feel important and she enjoyed the attention. So for now its OK. She isn't yet tuned into the appearance thing, though. If she was, she'd probably have a harder adjustment because the top of the brace does show a little around the neckline and it adds some bulk to her frame (she's too young to think to ask "does this make me look fat"? :) ) Especially in the pelvic girdle area...the crotch straps pull her bottom up high and make it stick out...bubble butt! When she is 9, that may be a bigger issue (then again, an older and longer body can better camoflage the pelvic girdle I'd imagine?)

Katie was OK with the idea of the brace, but putting it on was a different story. I was told that after 2 days, things tend to get easier and it was the case with Katie. She was fine at school on Thurs and Fri. As long as nobody makes fun of her....

Good luck with the appointment! And I hope your 7 year old's curves turn out to be nearly non-existent at this stage.....

[stephanieC]

Jill, thanks for your replys. I hope your daughter does really well!! I hope my daughter adjusts as well as yours has, at least so far. We'll see. I feel so nervous about all of this I could throw up at any moment. I will keep you posted on my girls. I hope to hear of your daughters progress as well. I wish her and you the best!! Stephanie

[anwmom]

Stephanie,

My daughter is in the SpineCor brace and we went to Presque Island Ortho Lab and Shriner's in Erie, PA. The orthotist at Presque Isle has been working with the SpineCor for a long time and is very good. His name is Jonathon. For adjustments, he comes to Cincinnati every few months so we don't have to make the 6-hour trip each time.

As far as insurance reimbursement, our insurance company initially denied the claim, but we appealed and won. Her orthopedic dr. did a a peer-to-peer review with the Medical Director at the insurance company and the insurance company then approved the brace.

Good luck and if I can be of any help, please let me know.