spinecor

[MATJESNIC]

Spinecor

Hi Cheryl,
Welcome! I know how you feel. My 11-year old daughter was diagnosed with a 37 degree curve and given a prescription for a Boston Brace. We went against what the doctor prescribed and put her in a Spinecor Brace. Going against a top orthopedic surgeon and making a decision like that was extremely difficult. There was a lot of confusion, crying, and sadness during those first weeks. But once we made the decision and got the brace, we just accepted this as the path we chose. We couldn't put her in that Boston Brace. We just couldn't do it. We feel that she has just as much chance (based on all that we have read) to be successful in Spinecor as she would have in the hard brace. If she needs surgery in the future, she probably would have needed it in the future after hard bracing.
About the cost.....We go to New York City for our Spinecor. The brace cost $3,500. Our lovely insurance company has given us $200 for it. We are planning our appeal. Anyway, we did get a 2nd opinion at a Shriner's Hospital and the ortho. told us that no matter what happens with Nicole's spine, he doesn't want us to ever blame ourselves. Because we are doing what we feel is the best for her. His words have stuck with me. We, as Parents, are all doing the best we know how. Good luck and God bless.
Melissa

[pat]

Hi Cheryl, welcome aboard the spinecor train! We do indeed travel to Montreal to see Dr. Rivard/Dr. Colliard, our costs are $3,000.00 for brace, and $300 to the Radiology department for x-rays each time, and $80 for physicians' fees. I have an older daughter who had spinal fusion surgery a year ago, after faithfully wearing her brace (only at night), my husband and I just couldn't bring ourselves to put our daughter in a full-time hard brace. Surgery for my first daughter was very successful and I'm so happy we did it, my daughter now in the spinecor brace, has other health issues; the spinecor brace is the perfect brace for her. I've talked with various ortho surgeons, and my feeling is a brace will either work or it won't, ANY brace, due to a genetic marker with these kids (they're doing some research on that now). I agree w/Melissa once you've decided, that's it! If you look on the Spinecorporation website, you'll see there's other doctors/chiros in U.S offering the spinecor. I was encouraged to read that the demand for Spinecor braces is increasing, and also that Shriners' in (sorry, forgot which State) is now offering Spinecor also. p

[Celia]

Melissa,

Prior to getting the Spinecor brace, I phoned our insurance company to find out if they covered it and they said "NO, we don't cover elastic braces". At the time I didn't care whether or not they covered it because I believed in the product and I knew I didn't want my daughter in a rigid brace 23/7. So I went ahead and got the brace, filed a claim with the insurance company and they approved it !!! It was like winning a lottery because I really didn't expect to ever see that money again


Pat,

The Shriners hospital that prescribes the Spinecor brace is in Erie, Pennsylvania. As far as I know, any brace prescribed through a Shriners hospital is free of charge to families.

[cyprusmom]

[It is so hard to know what is the best thing for her , also. I am so afraid of making the wrong decisions. I feel so out there. No one here seems really familiar with the brace, and they regard this as a radical decision. I have enjoyed your posts and found much to emphathize with.[/QUOTE]

Hi Cheryl,
welcome from me too! I know exactly how you feel...The decision to put my daughter in the spinecor was also against what she was prescribed by the orthos here (a Boston) I flew with her out of this island (Cyprus, in the meditterenean) to get the spinecor in Greece after researching it myself online. So speaking of feeling alone and noone being familiar with the brace....I hear you! I spent many sleepless nights wondering what the right decision would be! Got as many opinions I could and also listened to my instincts...I now feel good about the decision though and although my daughters curve is quite advanced T40, L30 I know it was the best for her. I just could not put her in a hard brace. The spinecor was very easy to adopt to, she even forgets she has it on and continues with all activities.
Costwise it sounds like it is the same more or less around the world(?) in our case we paid 2,500 euros and covers all follow-up visits with orthotist. X-rays and ortopedics exams are on top.
Good luck with your decision, keep us posted.
Pola

[gerbo]

Also, you could be in a position where you would have chosen to go along with the boston and have very similar doubts about wether it would have been the best choice. There aren't that many good studies confirming its longterm effectiveness, and none of the studies i have seen seem as comprehensive as the spinecorstudies. Also, lots seems dependend on the shill of the orthotist applying it, correction achieved in the brace, and willingness of the patient to wear it 20-23 hours a day. Lots and lots of patients in Boston, at least the ones who post on forums, seem to progress regardless and end up with surgery. Now i come to think of it, i cannot remember coming across any post of anybody indicating longterm benefits.

Sometimes it seems that boston is so established and accepted, that any evidence of it not working so well gets accepted as just one of those things, whilst other systems would not get away with similar failings

and as i have said before, if everything else fails, there are many succesful and happy surgery stories, so if that is the worse what can happen to our daughters, they'll be alright

gerbo

[MATJESNIC]

Celia,
I called our insurance company and gave them the code for the Spinecor and asked if they covered it. I was just making sure the brace was something legitimate because I had only heard of it from the Internet. They looked up the code and found it and said they covered it. They didn't give me specifics and I didn't ask as that point. I totally agree with you. I would have gotten it anyway. But our Drs. office thinks they are confusing this with a simple kind of brace because they both have the same code. But after they wrote a letter, we are still being denied anything beyond $200. I am so angry I feel like wringing somebody's neck over there. Our Dr. works with Blue Cross Blue Shield all the time and has never had this problem. Ours is a PPO. Blue Cross Blue Shield of Texas. We live in Pa, but only offered this PPO. We are definitely going to appeal.
Melissa

Melissa,

Prior to getting the Spinecor brace, I phoned our insurance company to find out if they covered it and they said "NO, we don't cover elastic braces". At the time I didn't care whether or not they covered it because I believed in the product and I knew I didn't want my daughter in a rigid brace 23/7. So I went ahead and got the brace, filed a claim with the insurance company and they approved it !!! It was like winning a lottery because I really didn't expect to ever see that money again


Pat,

The Shriners hospital that prescribes the Spinecor brace is in Erie, Pennsylvania. As far as I know, any brace prescribed through a Shriners hospital is free of charge to families.

[cherylplinder]

Thank you for all your input! Y'all are so supportive and encouraging. I don't think I could have made it throught the past few weeks without reading your posts. (Catch the "y'all"? You can tell even from what I type that I'm from the South! )

We don't have any sleds or alpha dogs, but I have a doberman that's up for grabs. You could teach her to pull a sled, Celia. She's strong, but you'd have to get her a coat. She gets cold easy. I'd be happy to bring her to you!
We're coming to Montreal to see Dr. Rivard January 24th! He will evaluate Rachel then and let me know if she is a good candidate for Spinecor. It would be a big bonus to get rid of this dog!!!!!!!!

Pat, where do you travel from? The US? Did insurance pay any in Canada? I don't expect mine to pay. If this helps Rachel though, it will be priceless to me.

I am a stay at home mom for the past 15 years. (I homeschool! Yes, I am a few marbles short!) I am a pharmacist, but told my husband I'd rather do without things than leave my kids. Sometimes I am certain I should have let someone else ruin them. At least I would have had some money! Not sure I had a choice anyway, as many health issues as we have dealt with! I'm not complaining though. The tapestry of life, its ups and downs, I love. ( I wouldn't mind fewer downs. I think I could still appreciate my blessings!)

I keep my license current, though. This brace may put me back to work! My middle child, William, 12, is an insulin dependent diabetic since age 4. I don't know if our new insurance will pay for pumps, pump supplies, insulin, and strips like our old policy. Insurance is 1300 a month, but they like to make money.

Gee, I'm rambling! Pray for us!

Catch you later!

[Celia]

Cheryl,

I can soooo relate to the ups and downs, I think of them as jolts to the system that forever keeps us on our toes - maybe ages us a little ? I'm so glad Dr. Rivard was able to fit you in within such a short period of time and hopefully things will work out.

We don't have any sleds or alpha dogs, but I have a doberman that's up for grabs. You could teach her to pull a sled, Celia. She's strong, but you'd have to get her a coat. She gets cold easy. I'd be happy to bring her to you!

Thanks for the offer I already have my hands full with a neurotic border collie named Molly.

[cyprusmom]

Hello everyone,
Just had our doctors appointment today here in Greece. This was an important one since it was the first time the orthopedic saw Anastasia since she was fitted the Spinecor. He found her "stable" but still with a high risk of progression because of her young age and possibility to grow. She grew another 2 cm she is now 1.60m. He said that it was good that she is growing tall without the curve getting bigger. He only examined her with the scoliometer her thoracic rotation is stable 11-12 and did not request an x-ray at this point not important he said. May 3rd will be the decicive visit and will get an x-ray. If she stays stable we continue with the Spinecor and will see her every 6 months, if she gets worse he will plan surgery.....(Well, you know ALL orthopedics are surgeons so surgery IS part of their treatment). Did not argue or ask anythink about surgery at that point. In my mind I only think positive results with Spinecor but I know as May will be approaching I will be a nervous wreck.
Did you all get instructions to do the exercises with the brace on? My daughter has been doing them without it but the doctor emphasized that the brace should be on.
Pola

[MATJESNIC]

Hi Pola,
I am glad that Anastasia's curve is stable. I assume he confirmed everything the spinecor doctor said. I agree with you that surgeons are going to prepare for surgery because that is what they are trained to do. I have said a prayer for Anastasia that this brace continues to hold her curve. We both know our girls are at "high risk." That is not news at all. Did the Dr. have anything positive to say about Spinecor?
As far as exercises are concerned, they are to be done in the brace. Every movement that is made is supposed to be conditioning the body to be made correctly. That is why our girls should have their 2-hour break when they are just sitting around watching t.v. or doing homework. When they are active in dance, or running around, or playing a sport, they need to wear their brace. Did your surgeon say this to you today or did your Spinecor Doctor say it? Because I thought the surgeons didn't believe in exercises for scoli.
Anastasia mentioned something about possibly coming to the United States this summer? We would love to meet you somewhere if you come. Let me know. Take care. My thoughts are with you. If our girls need surgery, we will all get through it like all the other children have. We are in the same boat even though we live so far away!
Melissa

[pat]

Pat, where do you travel from? The US? Did insurance pay any in Canada? I don't expect mine to pay. If this helps Rachel though, it will be priceless to me.

Hey Cheryl, we travel from Connecticut, it's really not that far. No, insurance didn't cover any of it, it falls under durable medical equipment, and we max out on that every year w/other equipment. I think you'll learn alot from these postings; I know I have! Pat

[cloggerx3]

Re: insurance payments

I appealed to our insurance company (Aetna) on paying for the spinecor. The key point I used to get them to pay was that the spinecor is FDA approved, and that it was the brace that we wanted to have our daughter in. I also challenged them to check prices elsewhere to prove that the charges were legitimate. Then I requested to know how much they would pay for a Boston brace...I never got an answer but then we received more payment. (They initially only paid $100.) I also fought the "out of network" provider payment by insisting that there was no other doctor "in network" who was trained in the spinecor. I have been approved to have the doc treated as an "in network" provider. Total charges submitted for her fitting and tests were about $5300. So far, I have gotten the insurance to pay just shy of $3000. I am still bugging them though! DON'T GIVE UP! Keep fighting, it is ridiculous how much we pay in premiums and copays and then they don't want to pay anything. Remember the squeaky wheel gets the grease!

Clogger's mom- Lori

[MATJESNIC]

Lori,
Good for you. Thank you for your input. I would like to know the code number for a hard brace so that I could find out how much they would pay for it. They can't tell me without a code. This is all so frustrating. I have paid around 6 thousand dollars, too. It is so difficult that we have to deal with this, on top of all the worrying about scoli. Good to hear from you. Hope you and Lauren are doing well.
Melissa

[cherylplinder]

Orthopedic VIsit

HI guys!

We had a visit with our regular orhto Monday. First one since I started researching Spinecor. He had never heard of it, but was supportive of trying new things. I was afraid from what his nurse had said in earlier conversations that I would encounter a lot of resistance. She indicated that they didn't use soft braces, (which is true!).

But he had never heard of Spinecor and was very interested in information on it. I know he would love to have something to offer parents of children with curves lower than 25 degrees. I know I would have jumped on anything he could have offered me two years ago. Since the hard braces weaken the back muscles, he does not use them in lower curves.

I can't tell y'all how much your posts give me encouragement and strength!

Gerbo, you are right, the stats on the Boston are no better than Spinecor, and the studies are not as extensive. Things just get accepted as the status quo! ANd I have had a really hard time getting any correction in Rachels. Her x-ray on Monday show an in brace correction of only 2 degrees. We went to get the brace modified, but I don't know whether the modifications are correct. They don't appear so. The pads do not appear to be where the ortho indicated they should be. And I may have to wait a while for them to work us in to check. I get so frustrated!
Cheryl

[Alison]

I just wanted to say this thread's quite interesting....whilst I'm well past bracing and surgery, it still quite interests me to read this thread. The SpineCor brace kind of fascinates me, and kind of has my curiosity (in a way :-). I do wonder how all your kids in their Spinecor's will go. Just wanted to say....quite an interesting thread, makes for good reading :-)

Regards

Alison