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Unlikely Unicorn

Our beautiful baby girl was born with what may be a dermoid cyst on her nasal bridge, right between her eyes.

From Webmd: A dermoid cyst is a saclike growth that is present at birth. It contains structures such as hair, fluid, teeth, or skin glands that can be found on or in the skin.

So far, the only diagnosis has been from her pediatrician (and so far, I am doing my best to not think about teeth being present in her forehead).

Dr. Pediatrician told us that, in his opinion, due to the location of said possible cyst, we need to see a Pediatric Neurosurgeon. This doctor will have a CT or MRI done to determine if there is a nerve ending into the brain and then will decide on the best course of action but that either way (nerve ending present or not), it will need to be removed because it will grow and eventually wear down the nasal bone.

Since it is unlikely our baby girl is really a unicorn, we decided to pursue having it removed (and I am also, so far, doing my best to not think about facial/possible brain surgery on my 8 month old).

But the well-renowned Pediatric Neurosurgeon he referred us to a) does not look like McDreamy and b) is not in either of our insurance networks.

After mucho research, several phone calls to both our insurance groups (we are covered through my work and hubbys) and speaking to several doctor offices, it turns out that there is no board-certified pediatric neurosurgeon in Orange County in either of our networks.

Which leaves me stumped…we are lucky enough to have double insurance (with great plans) so you’d think we’d be able to find someone.

One option, we were told, is to petition to have our insurance grant us coverage for the not-in-our-network well-renowned but doesn’t look like McDreamy Pediatric Neurosurgeon. This is still on the table. Another is to pay the higher cost of using an out-of-network doctor.

So before we opt to appeal to our providers sensibilities or tap into our kids college fund, we expanded our doctor search to Los Angeles and after several more phone calls and research, found a board-certified Pediatric Neurosurgeon (who really really doesn’t look like McDreamy) in our network.

His assistant was actually very helpful. After explaining all of the above (but leaving out the not looking like McDreamy part), she made the observation that because of the location of the cyst, Dr. in LA might refer us to a plastic surgeon instead.

To save us the drive, she wanted to know if I could have the MRI or CT scans sent.

Yeah, don’t have those. So now we are in a holding pattern, waiting to hear what Dr. in LA might want to do.


Scenario #1, he asks us to have our pediatrician order the tests done here in OC and then send them to him. Scenerio #2, we have to make the trip to LA to have the tests done. All doable but I have been waiting to hear back now for two hours and I am getting ancy.


I do not beleive in creating problems where they don’t exisit or worrying about something that has not yet happened but the more I delve into trying to find my baby the right doctor and can’t, the more the knot in my stomach grows.


We have several options and for that I am thankful, but it would be nice if we could get a very good doctor who knows what he/she is doing and have it covered by insurance.


A friend of mine told me that she had surgery when she was in the first grade and is still terrified by it, so getting this done while baby girl is too young to remember is a priority.


I hope to hear something soon.

gingerbreadmama

gingerbreadmama

Comments

  1. A couple of things:

    1. Doc Hollywood could be just the right guy, McDreamy or not. :)

    2. A friend in England had a similar case, and was able to get right in because, oh yeah, they have health care that makes sense.

    3. How cool would it be if your daughter WAS a unicorn! You could join the circus! :)

  2. My husband's youngest son was born with something pretty much the same, at least it sounds the same. And I just want to reassure you he went through the surgery before his first birthday and came through it all with flying colors, and you would never know. They did a beautiful job and next to no scarring at all. Fingers crossed that you will get this taken care of sooner than later and will be a past memory and you can tell her when she is older that she was and is a beautiful unicorn.

  3. Kara, you are such a smarty pants but you make me laugh.

    Medifast, thank you for the nice, comforting comments.

    My cup runneth over…we got two calls back! One from the LA Ped Neurosurgeon and one from an OC Ped Neuro with a referral to an Otolaryngology doctor, which is a fancy way of saying Ears, Nose, Throat but he is also a "facial" surgeon…which means he does plastic surgery and botox so that could go either way. Anyway, we've got an appointment with the ENT and are trying to get one with Dr. LA and then we will know/decide the best course of action.

    I'll keep you posted.

  4. Here's hoping you find the answers you seek. Until then, hugs. xoxo

  5. I know this is a very old post… but I’d love to know what happened here as our boy has a very similar lump in the same place.

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