endoscopic vs. CVR for metopic craniosynostosis

[alohanancy]

My son is only one week old but we suspect he has metopic craniosynostosis and trigonocephaly--we are currently in the process of waiting for referrals to a pediatric neurologist and a craniofacial surgeon.

Because he is so young we understand that this would make him a good candidate for the endoscopic route. Is this always the preferred route of treatment if the child is a candidate? Why would it be better to do CVR instead? Do most insurances cover both treatments equally? Will it be considered a cosmetic surgery or medically necessary?

So many questions! Thank you in advance.

Nancy

[*jules*]

Nancy, I can't answer these questions for you. My son was diagnosed at close to 5mos and I don't believe he would have been a canidate for endoscopic.

I think it's a very personal decision and you should do your research and talk to as many parents as possible. I think that most of us on here with metopic kiddos have had the open procedure but I do know of at least one who went the endo route. I'll try to find her and send you a link to her profile.

[*jules*]

http://www.craniokids.org/support/showthread.php?t=9028

here's one thread and I'm pretty sure there's another metopic mom who choose the endo route. I'll keep looking.

[*jules*]

whew...found her :) http://craniokids.org/support/showthread.php?t=16487&highlight=endoscopic+for+metopic

[Nezzy]

Good job, Julie! I was going to recommend those mommies as well, but I for the life of me couldn't remember who they were. I agree with Julie also to do your own research. The method is up to you..not your surgeon. Best of luck to you. The good thing is that they caught it early so you have plenty of time to decide on which method of correction you want to go with and then to find the right surgeon to do it. And most insurances cover it as medicall necessary..no matter with surgical option you choose.

[Amanda3796]

I agree with the ladies here.

Do check with your insurance to be sure they cover an Orthotist and helmet therapy. Some insurances don't. However I know if you find a good Orthotist they may go to bat with an insurance company for you. This would be necessary if you choose Endoscopic.

Finding a good surgeon and getting several opinions is key. (along with your research). We were lucky enough to have a surgeon who gave us our options and their opinions on those options. So we made the decision that was best for us.


Best of luck! Let me know if you need anything!!

[Laurie the IW]

Each insurance company has its own medical policies, you will need to check with your insurer.

I am looking at a case right now where the insurer's medical policy statement for "craniosynostosis treatment" says that helmets for craniosynostosis patients post-surgery are considered "medically necessary."

However ... the parents' plan document states that helmets aren't a "covered benefit."

I would write an appeal based on the fact that -- when you add up the medical policy and the plan document -- they are both contradictory, and ambiguous.

When a provision of an insurance policy is ambiguous, contradictory, or subject to more than one interpretation -- that provision is not valid, and is to be decided in favor of the insured person.

*****
I wouldn't count on an orthotist to make an insurance company pay. Sadly, orthotists, doctors, and medical providers in general have very little power to persuade insurance companies to pay, when they are not inclined to do so.

You, the insured person, are the only one who has any traction with your insurance company.

Why not have the orthotist write his letter of medical necessity, then include it as one part of your own powerful appeal?

****

One can never say, "Insurers usually pay for this or that treatment or device." Each insurer has their own policies and positions. If you want to find out what your insurer's medical policy statement about helmets says, you can look it up online. In the case that I am studying, the name of the insurance company is United Healthcare. I simply googled the phrase "united healthcare medical policy cranial helmet." Their official policy statement on helmets popped right up. Now I know where they stand, and their reasons for their position.

Every insurance company has a body of medical policy statements. These documents describe all of the treatments which they consider to be "experimental" or "not medically necessary," and the rationale for their postion. Regardless of our coverage, they will deny these treatments/surgeries/devices.


The best way to find out what your coverage is is to check both your benefits booklet or plan document, and your insurer's medical policies.

The best way to persuade an insurer to pay is to prepare a powerful, fact-filled appeal document, and to deliver it to the highest-level decision-makers at the insurance company.


Cheers,

Laurie the IW

[Jennifer]

Nancy~
First off- Congrats on the birth of your son!!! I am sorry you are having to deal w/ cranio- but finding out so early gives you so many option and time to make decisions. :hugg
When Emily had her surgery, endo wasn't an option. Endo has become alot more widely used in the last few years, so I hope you find it easier to research. Do you all have a meeting with an NS yet? I would go in with questions and based on your feeling about the NS, continue to research your options from there. Talk with some moms on here- those that have been there/done that can definantly be helpful.


On a total side note, I just wanted to comment on my personal experience about the comment below:


I wouldn't count on an orthotist to make an insurance company pay. Sadly, orthotists, doctors, and medical providers in general have very little power to persuade insurance companies to pay, when they are not inclined to do so.



While what was said is probably very true, I was lucky enough to have a team that really worked for their patients. Laura (I'm not sure of her official title, but she made all appointments and contacts with insurance)- was extremely helpful in knowing all the insurance companies that they accepted and informing us what was commonly covered and what was a bit more tricky. Things that were 'more tricky' to get covered she made sure we timed appointments, how we made them and what we made them for to ensure they would be covered.
I guess what I really wanted to say is there are doctors/specialists out there that will go the extra step to make sure that not only your childs best interest is being covered, but they will also ensure the ease/comfort of the family with the surgery/procedure and that they don't need to go through additional hassles/stress of insurance if handled appropriatly.

[Laurie the IW]

In most cases, all insurance problems can be handled by the doctor's office, and we need not get involved.

Not always.

I have written appeals for doctors who couldn't get their insurers to pay for their own lifesaving treatments.

People don't usually find me unless their doctor's office has already done everything they can (letters of medical necessity, peer-to-peer review), and the insurer still denies the treatment.

I'm just here to tell people that it is possible to take charge of the insurance piece ... if need be. And that it is very possible to get insurers to fund your treatment by our own efforts -- even when doctors, insurance agents, and case managers have not been able to do so.


It's a message of empowerment. If the insurance part goes smoothly for you, hopefully you will never need to think about it.


Cheers,

Laurie the IW

[Max's Mommy]

Most importantly in the endo vs traditional debate is not the surgery......in my opinion it is trhe expertise of the orthotist - so ask a lot of questions, visit the orthotist and find out which helmet they use and their success rate
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[G2sMama]

We chose the endoscopic version for our daughter's metopic cranio. She had moderate to severe cranio and moderate to severe trigonocephaly. Our pediatrician told us her suspicions of it before we ever left the hospital after birth, and the pediatric plastic surgeon we saw immediately made the same comments at first introduction. The plastic surgeon had only done a few endoscopic metopic surgeries, preferring to do the open procedures, but had had major success with the ones he had done. In his words, he was slowly becoming a convert to endoscopic. The neurosurgeon at the hospital was one of the biggest advocates for endoscopic, and really new his stuff. There are never any risk-less procedures, so you kind of have to weigh what is most important to you. For us, it was avoiding the blood transfusions typically associated with the open procedure. We are currently in helmet therapy, getting ready for the second helmet. And the others are right in telling you to check with your insurance specifically on these things. Ours normally considers helmet therapy to be cosmetic & won't cover it, but because of the way our doctors wrote the orders for surgery to INCLUDE helmet therapy following, they cover all but $400 per helmet.

Please feel free to message me with any questions or concerns. Our daughter was born in May and surgery was in August, so we're not that far removed from it all.

[Mason's Mommy]

Hi there! My little guy, Mason, was born in May with severe metopic cranio and trig. We agonized over which surgery but ultimately went with endo. We are on our 3rd helmet and are extremely pleased with the results so far. Mason's head measurements at his last orthotist visit 4 months post-op were those of a normal kid. You can't even tell he had cranio, and he was one of the worst cases we'd seen in doing our research. The kicker for me in choosing endo (in addition to finding brilliant cranio facial and neurosurgeons in Utah) was talking with a couple moms who each had two cranio children and did CVR for their first child and endo for their second. The moms both said their endo child looked better than their CVR child and had a far less painful/traumatic experience. Our insurance did not cover helmets, but we appealed all the way to their officers and directors and ultimately won our battle. I worried about the helmets, but they have not been a problem at all. My little guy is the cutest thing ever with those helmets, and he doesn't even know he has them on! He was 6 weeks when the surgery was done (optimal age for endo) and is now 6 months old. He looks like a totally normal kid and is right on track developmentally. We were devastated when we first found out, but every step of this process has been such a blessing and Mason continues to amaze the doctors and orthotist with how well he is doing. I could go on about this for hours, so please let me know if you have any further questions and I'd be happy to help! ;o)

[kelly565]

Hello,
my son is 4 months old now. He was diagnosed with metopic cranio at birth. I thru internet came across university health systems website where a Dr. Jeminez and Br. barone, a husband wife team do the endoscopic procedure for infants younger than six months of age in San Antonio, Texas. Since, I reside outside of USA my coming there for treatment requires not only effort but a lot of money since we donot have insurance cover. However, that apart, i want advise which method is better. His surgery has been scheduled for may 12th. But i am having second thoughts. What if a repeat surgery is required???
and why would he not have a perfect head shape even after the surgery??
Please help..
a very worried mother.

[alohanancy]

I sent you a message!