Implants? Trigon w/o CVR

[JIC0930]

I just saw a neurosurgeon concerning my daughters metopic cranio. Although we never noticed it before she was 15 mo. now we (my family & I) see the trigonocephaly very clearly. I was expecting that surgery would be recommended but it was not. Instead the NS said if the trigon became an issue they could do a less invasive surgery using implants to round out her forehead. I'm waiting on an appt. with the plastic surgeon for more advice. Has anyone ever heard of this? Also I was under the assumption that trigon is always taken care of vs just a ridge. Does anyone else's child have trigon and been told no surgery? I have an album if anyone want to look and give an opinion. Thank you!

:saywa

[evergreenmom]

I am not a metopic momma so am not that well versed on the issues but I do think there have been cases of very mild trigon that were wait and see.

However, I certainly have not heard of anyone putting implants in to re-shape the brow or fore-head or get rid of the pinched look- the whole issue about pinching is not cosmetic- surgery is performed in these cases because the brain is may be constricted in that area! I definitely think you need another opinion even if the answer is still wait and see- I would not trust the advise you received just becuase it sounds a little off from what we usually hear around here iykwim.

You are in NY right? Why not head down to NYU and meet with Dr Staffenberg- he is very highly reputed and all of the families here who have used him have wonderful things to say about him- I know he specializes in mild metopics so just given that he should be your next step if you are going to seek another opinion.

Best of luck to you and please keep us posted as you move forward...

[JIC0930]

Thank you Kristin. I have already heard a lot about Dr. Staffenberg and I hope we can get in with him. I was told that one of the reasons for no surgery is that her orbits/ brow bone looks good and in his opinion she is not delayed. I agree about the eyes but not about the speech dev. For months (before cranio diagnosis) I have been concerned with my daughters speech and gross motor skills but technically she is on target. My mommy gut says otherwise. Everyone thinks I'm crazy but I just know my daughter should be doing more. Blah!

[Janet]

Fiona was moderate metopic, she had a CVR/FOA at 10.5 months old. She had some bone resorption and is having custom implants made to help contour her forehead. But this is only because of the bone resorption.
I would get a second opinion.

[Monkey'sMommy]

I've replied to your private message, but I just wanted to post here about the issue of speech delay. My husband and I always felt that Monkey's speech was delayed. I called Birth to Three three times when Monkey was 13 and 14 months old but each time they told me that he wouldn't be considered as having speech delay until he was 18 months old and had no words. They wouldn't even agree to come out and do an evaluation on him until then.

I wasn't satisfied, especially when Monkey saw our craniofacial team's pediatric developmentalist and she recommended a Birth to Three evaluation! I called BTT right back and politely demanded an eval. They finally agreed. And, as it turns out, Monkey does have a significant speech delay. I would call your state's Birth to Three, Early Intervention, or similar program and request an evaluation. Mommy knows best, so trust your instincts!!!

Oh, and to echo what the other Kristin said - please go get a second opinion!!!!!

[charliesmummy]

I agree a second opinion would be best, i have never heard of implants being used to get rid of the triangular shape before x

[joshmummy]

Not sure if this will help.. my little boy Joshua had surgery for sagittal in 2007. his forehead became very triangular/pinched temples shape after the surgery which at one point his surgeons thought he had developed metopic/trigon. We were down for surgery to correct but was cancelled 5 days before as they felt he wasnt metopic just that the sides of his head had come out too much and temples sunken. We have been told that when Joshua is alot older he can (if he wants to) have a procedure down to widen his forehead. I think they said it is like a putty that is put in and then it hardens to resemble bone. i wonder whether thats what your docs are saying to you.
if i was you and like the girls have said, a 2nd opinion is the best thing...been their and got the tshirt! xxxxx

[Nezzy]

You need to get a second opinion. Why would he reshap with implants...that does not take care of the problem of her brain potentially being squeezed? I personally would take that doc off your list and start over with a new opinion.

[AddiesGramma]

I am not a metopic momma so am not that well versed on the issues but I do think there have been cases of very mild trigon that were wait and see.

However, I certainly have not heard of anyone putting implants in to re-shape the brow or fore-head or get rid of the pinched look- the whole issue about pinching is not cosmetic- surgery is performed in these cases because the brain is may be constricted in that area! I definitely think you need another opinion even if the answer is still wait and see- I would not trust the advise you received just becuase it sounds a little off from what we usually hear around here iykwim.

that is what I was thinking when I read "implants" ... If it were me I would def get a 2nd opinion

[krause3]

Dr. Staffenberg also responds to e-mails. You could try that first if you can't get into see him soon. His e-mail is drstaffenberg@newyorkcraniofacialsurgery.com

We e-mailed him and then he called us. He's very friendly and knowledgeable and took the time to answer all our questions.

[JIC0930]

:heartbeat What would I do with out you guys! Thanks for the support. I will definitely be contacting Dr. Staffenberg. Basically I was told her orbits look great and she is meeting her milestones so a CVR would be complete overkill. What really put me off was when he said that if she was severe and it was noticed early and had surgery then they would think she looked great! I was thinking "really thats the best you do?!" The worst part is I was prepared to ask a ton of questions and be demanding but once we got there I just sat and listened. I dont even know how they check for ICP because when he said its unlikely (which I knew) I just left it at that.
Anyways, Thanks again!