Mild Metopic 8 months old

[CJsMommy]

Hi everyone. About a week ago my son was diagnosed with Metopic Craniosynostosis (Trigonocephaly). I saw doctors Wisoff and Thorne at NYU. Both called it a mild case that falls into a "gray zone" but felt that ultimately, if it were their child, they would do surgery. They told me to come back in a month and take the time to do research, see an opthamologist, and watch how the ridge progresses. I should be getting an appointment to see Dr. David Staffenberg soon. From what I researched he is the very best and I am putting a lot of faith in meeting him and figuring out whether or not CJ needs surgery.

At this point I have done so much research I am basically rereading the same websites just to pass the time. It would be really helpful if I could see pictures of babies with Mild/Moderate Metopic before and after surgery. Also, Mild/Moderate Metopic babies who did not have surgery then and now.

I also haven't seen any pictures of the scarring which I am very concerned about. If the decision boils down to cosmetics I don't know which will be worse, a mild/moderate ridge with mild narrowing of the forehead or the scar from the surgery? Anyone willing to post pictures of their babies scar, especially after time has passed, would also be really helpful.


Thanks so much,
Cathy

[jjmc123]

Monkey'sMommy son is mild metopic and they ultimiately decided to have surgery last year. I'm sure she'll answer your questions.

My son is 5. He had surgery for unicoronal at 7.5 months and 4 yrs old. Feel free to look through my albums or the pictures in his caringbridge page (link in my signature) to view his scar. His scar was more of a worst case scenario situation. Its thinner after his last operation, but still considered wider than normal. He likes his hair short to show off the scar (he calls it his racetrack), but once his hair is @an inch or so long the scar is almost completely hidden.

[Mindy]

I'm on my cell now, but ill be back later. My son is mild metopic and did not have surgery. We did consult with Dr. Staffenberg too. He initially said surgery wasn't necessary, but at our follow up, he sort of left it up to.us, but was ok with waiting especially after his neurosurgeon felt it wasn't necessary. It's,a really tough place to be in especially when the drs. Don't say its necessary for neurological reasons. And I thought the same way you did about the scar being more of a cosmetic issue than the ridge and mild pinching. There are a few mild no surgery cases on here. Look through the pics and ask any questions you have.

[Monkey'sMommy]

Here I am! Hi and welcome to ck! Like Cindy said, my son was a mild metopic and we ultimately decided to go ahead with the corrective surgery. We asked ourselves the very same question you are asking: Which did we think Monkey would want when he was older, a somewhat triangular shaped head or a faint ear-to-ear scar?

You might want to read through Monkey's blog (link is below, in my signature). Hopefully there will be some info or thoughts in there that might help to clarify things for you. I am horribly overdue for an update to his blog...hopefully I'll get around to it as his third birthday is approaching. Oh, and here are some photos that kind of show his scar. It's really only visible when we cut his hair short. And it is so, so faint.

Please let me know if I can help with anything else!!!

[rhenagade]

Hi Cathy,

Our 18m daughter is having surgery tomorrow with Drs Staffenberg and Wisoff for mild left unicoronal. We also fell into the gray area, which is such a bad place for a parent. I researched a ton, spoke to numerous Dr's (in NY, CHOP, Fearon). Whiile definitiely a very mild case of assymetry, all but one NS recommended surgery. So, here we are, the day before surgery, still second guessing, but going ahead with it. I am sure there are a lot of parents who can put it aside and just go on with their lives, and their kids are probably no worse for it. They aren't part of these support groups because it doesn't consume their lives, they just get on with living. But for us, we want to give our daughter the best possible future, the best we are capable of. I know that tomorrow morning, when we take her to the hospital, still in her pj's, completely unaware of what is about to happen, I will still be second guessing this. But in my heart, I know it's the right thing for our beautiful little girl.

Rhena

[TraceyV]

WOW!!! You son is sooooo adorable. He looks so much like my son Reid. We are just in the diagnosis phase and are seeing our CFS June 25th. I would love to hear what you Dr. has to say after your appt. Best of luck for your little CJ

[Carmen77]

Lucas is 18 mths old. He is Mild Metopic, we are wait and see..


Current pic!!
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[CJsMommy]

Thanks for all the posts. I appreciate each one and found them all useful in different ways. We are seeing an opthamologist on the 7th and the Dr. Staffenberg (craniofacial surgeon @ NYU) on the 12th. From what I'm reading this is pretty quick progress but it feels like a lifetime away. I am praying that they will tell me NO surgery EVER. I am not good at the waiting game...

[KennysStory]

Kenny had metopic/trig and we got the surgery. I am sooo glad we did -- you can go to my profile and look at my albums, before and post-op. He is now 2 1/2 and looking and feeling great. Our surgeons said the same thing, if it were their child they would do the surgery, but it was considered cosmetic. My husband and I are both teachers and know that just a slight different head shape could be detrimental in middle school... sad, but true. If I had the chance to do it again I would.

[J's Mama]

My son is mild/moderate metopic, and our surgeons (Dr. Bristol - NS, and Dr. Beals - CFS) here in Phoenix initially took a "wait and see" approach. We saw them every 2 months from when J was 7 mos till 13 mos. At our last appointments, both doctors said they wouldn't do surgery on him if he was their son. He will always have a bit of a narrower forehead, but they also assured us as he grows, his sinus development along the brow will give the forehead more prominence and width. Our doctors would do surgery if we pushed for it--they told us that--but they're not recommending it at this point. We will go back to see them if we have any future concerns or anything changes with J's head (and I'll keep taking pictures of his head), but they aren't having us come back every two months now.

If you want to see pictures of little J, I posted a few in my profile. I plan to post a few more soon, if they can be a help to anyone.