Greetings all! Fall marks our yearly return to the medical world to monitor our beautiful girls and their development. Lily is now 5 and with a late birthday is waiting until next year for kindergarten. She is a bright girl- mostly motivated by the acquisition of barbie dolls and cinnamon waffles- just a typical little lady whom we adore. As far as her appearance, the metopic ridge appears to be lessening. It is still a prominent feature on her face however with bangs it is not an issue. Her orbits are a bit shallow - certainly not noticable if you didn't know what you were looking for...
We have been followed by the plastic surgeon at Cincinnati Childrens rather than Riley as Dr Havlik would only insist in CVR. We visited several plastic and neurosurgeons at four hospital systems in the midwest and Riley was the only one who felt that CVR was appropriate. AND they confessed that it has no positive impact on brain development or function. One interesting research article I read suggests that often Cranio kids do have unusual brain development however it is not influenced by surgery. Except in very unusual circumstances intercranial pressure is generally normal for metopic kiddos. I have stacks of these studies in the basement but honestly I have moved on... The girls are so much fun- they are healthy and happy and we spend our time enjoying each other-- I can't stand the thought that Lily will enter school next year. I am very pleased in our decision to wait and avoid the CVR. The only rationale Riley gave us was of course cosmetic and that she may have headaches later in life.... REALLY?!? When they told us that we knew that the wait and see was the right choice for us. We are still able to have the burr procedure to flatten the ridge later if the girls want to- which is why we return to Cincinnati childrens. For now, I am laying out christmas cards for two gorgeous little girls. I wouldn't change a thing.
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3 comments:
I haven't found many cases (only 2) on the internet where parents did not opt for surgery even in mild cases of metopic ridge for "cosmetic" reasons. I feel like I am missing something since I feel like the risks of surgery outweigh the benefits. Recently, I noticed my son's metopic ridge. None of his doctors ever noticed.
You did say that ICP is normal with metopic ridge. So would this affect his brain.
Did yours husbands and children's ridge get better with time? Are you still considering surgery? Just wanted some of your thoughts feel lost and depressed about this whole condition and only treatment being surgery.
I'm sorry, but I think you're doing your child a disservice by not giving her the surgery when she's younger and her bones aren't fully formed.
My son, born April 13th, 2011 was diagnosed with metopic synostosis and is scheduled for surgery on October 31st. His head is already malformed and veins from the pressure in his skull are already forming in his skull. I think you should reevaluate your position for the future benefit of your child.
Hi GMCJ and Keith.
In answer to your questions GMCJ My husbands Metopic ridge is completely gone- if you really push on the center of his forehead you can feel it a little but you certainly cant see it. His father did have a very mild ridge as seen in the photo. I am not surprised that the Drs haven't noticed it- there is some individual variation in when this ridge closes and if you look around at kiddos you often see a very mild ridge that resolves. For our family there has been a great deal of variability in severity. We are planning to have the burr cosmetic procedure when they are older if it is needed. It is just basically a grind down of the bone- usually covered by insurance as well. Honestly our unique situation with it being present in 5 people across 3 generations has given us alot of awareness of how the story ends- and courage to follow the path that we see fit. In my mind you are trading one disfigurement for another - I just visited my stepson at college and his head was shaved for a fraternity hazing... and his forehead is still not normal looking- not bad but not normal- the frontal bones on the lateral margins do not align well with the temporal bones and the appearance is a bit asymmetrical and "pinched".
Keith it sounds like surgery is the right decision for you. This is part of the problem with getting a straight answer from the medical community- every case is different and no one has a crystal ball. In the end you have to agonize, grieve, pray and finally move forward and DONT LOOK BACK. You are these kids' parents for a reason and you are making the decision that is right for them. Good luck guys - you will be in my prayers!
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