Metopic: Cosmetic vs. Surgery

[xl1200c]

Does anyone know what factors are taken into account when determining if a closed Metopic requires surgery or is cosmetic/recontructive? I would like to have some knowledge of this prior to visiting our neurosurgeon.

Thanks,
Cathy

[marisajo]

Metopic seems to be a tough one, with the opinions varying widely. Typically I think if there is trigonocephaly (the top down view with a very pointed headshape) surgery is usually done. That was the case for us. Milder cases where the headshape is rounder but there's a ridge can go either way depending on symptoms. If there are any exisiting developmental concerns, it becomes an easy decision. For us, even with a severe headshape (9 out of 10 according to our ns - not the worst he'd seen, but pretty close) we had no developmental concerns until the month before surgery when we had random vomiting episodes that stopped post-op. I was almost happy that he was so severe so that the decision was "easy" to make.

When is your appt? I know the waiting is excruiciating...I remember just sobbing in the days leading up to our official diagnosis. I already knew in my heart, but it wasn't real until our ns said that if it was his kid, he'd do the surgery.

[amommy22]

I wish i could tell ya! I am right there with ya, uncertian of what makes a case cosmetic or not. My sons case (metopic) is supposidly considered mild, he has a pretty significant ridge and a lump ... the NS we already saw said that it would be cosmetic surgery when he is a little older, if they get bigger. Otherwise he says to just leave it alone. He said that although his eyes are closer together then they should be for his age, his orbitals are not compromised ... that they are not "too" close together. He also said that metopic rarely causes pressure on the brain or developemental delays, but i think this varies from dr. to dr.

I had sent Treys pictures to another NS and PS and they think his ridge is significant and that i should strongly consider a second opinion. So i think the last post hit the nail on the head, opinions vary widely... and unfortunatly i dont think we will all ever get the same exact definition. And depending on the doctor we see will make a difference on the diagnoses and treatment plan.

I would love to know how your childs appointment goes though ... keep us posted please.

[adamo]

I have 2 boys who have metopic craniosynostosis. The older had surgery about a year ago and the second will have his in the next couple of months. They are both completely normal, healthy and wonderful. I'm so happy we elected surgey on our first and have afforded the opportunity to live a normal life. The surgeries are considered "reconstructive" not cosmetic. Obviously, everything varies by case but I highly recommend surgery if there is any concern this will affect them later in life. A few months of anxiety for you is well worth the opportunity for a life of normalcy for your child. Best of luck in your decisions.

[craziekellie]

well, my daughter just had her surgery on july 9th for metopic. and yes it was elective - so the surgery was for cosmetic reasons. however, it is a birth defect and was simply told that we can choose to do or not do the surgery - that she might skate by undetected by classmates and such as she gets older.

up until we went to the second opinion, i wasnt going to go through the surgery. then when i saw the plastic surgeon who ultimately did the surgery, he just told me flat out that its my choice, but her head *will* continue to get more "triangular" if we dont correct it.

i didnt look at it like cosmetic surgery - i tell everyone and was told inthe hosp that she had reconstructive surgery. the doc told me that cosmetic surgery is for people who are just fine but are adding something extra to their bodies to make them look better. reconstructive surgery is to fix something not quite right to make a person look better...or just making them look like everyone else.

since i wasnt able to get an idea of what my daughter would look like at age 16 without the surgery, and since our insurance covered it (birth defect) and since i had a top notch doc telling me that its more than a mild case and it would only be more pronounced and harder to do the older she gets - i walked out of the room and went right to surgery scheduling. its almost 2 months post op and im so happy we did.

[amommy22]

I dont look at it as cosmetic, even though i know it is technically classified as such when there is no ICP, but when i hear that word i think of like a nose job because you dont like your nose or something like that. I dont like when its called that because I feel that it minimizes the gravity of it and at times then people look at you like "why are you even considering it if its JUST cosmetic?!"

[Janet]

I was told by our p/s and n/s that it's a cosmetic surgery, Fiona has had test done and there is no ICP...we are doing the surgery for Fiona...we don't want her to grow up and look different when there is an operation to fix her forehead. She has a moderate case and you can tell when you look at her, it's a tough decision, but one that we know is the best for her.
We also don't know if she would get ICP in the future if she doesn't have the operation. It sucks....but at least it can be fixed!!! :hugg :hugg

[amommy22]

Hey Janet,

Was it the ns who told you Fiona could develop ICP if you didnt have the surgery performed soon? Did you happen to ask him how often that happens?

Alison

[Janet]

Alison....nobody told me that she may develop ICP it we didn't have the surgery...I'm just assuming that because her forehead will never grow, and always be in the triangle shape but the sides and back of her head will...that must do something to the brain over time. I hear so many different stories from different parents and it seems like different Doctor give different advice. All I know is I would never take that chance on Fiona mentally or physically.

[xl1200c]

Thanks everyone for the responses. I'd like to clarify that I didn't mean to be insensitive when using words "just cosmetic".

At our first consultation this week the doctor said no ICP but she recommends surgery because she feels that if his head continues pinch in the triangular way in the front it will damage his eyes. We are going for a second opinion in a bigger city on Tuesday.

[amommy22]

Janet,

o i c ... i totally understand what you mean about every ns having a different opinion. I just was wondering if a doctor told you that or not because i thought the same thing ... i dont understand how if the front of your head never growns and the back and your brain do that if you leave it alone it wont cause any damage or discomfort/pressure later on. I think you are totally right for not taking a chance, you have to follow your gut and do what you believe to be best for your child.