Bluetree

Late nights for a Metopic Mommy

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How should I begin? This website and all that have contributed to it has given me such comfort from the very day that I discovered that my son suffered from Metopic Cranio and Trigon. I've spent many late nights reading these stories and trying to gather as much information as possible so I could figure out how to move forward in the best possible way for the sake of my son. After months of worry and anxiety, endless doctors appointments spanning from the East to the West Coast, extensive research, conference calls and a few heated arguments with my husband, I finally settled on CVR surgery with Frontal Orbital Advancement to be carried out in my hometown of Los Angeles. It was no easy decision. I had discovered that my son suffered from mild Metopic Cranio at 6.5 months, and I felt that perhaps we had missed the optimal window for endo and also agonized about the risk of a bleed out. At that time, I also fantasized about being "on the other side" and also had this great hope that after surgery I would leave cranio in the dust, in the past and most importantly far, far away from my son. Fast forward and more then a year has gone by, my son is 28 months old and here I am again, back at Craniokids. Vexed. Looking for more answers. Did I choose the right procedure? The right doctors? The bottom line is--I want to continue to do the right thing for my son, to stay smart, to stay informed and at the end of the day, I am willing to go the distance for him whatever that may be.....sooo....here it is.....
Judging from various other posts and my own concerns, I think that my son's head looks to be under corrected and I am not sure his forehead allows enough space for his growing brain. He has barely uttered more then a few words at 28 months and so outside of the cosmetic appearance, I am worried that it may be affecting his brain's growth. His forehead pinches in as it did pre-op and I am not even sure that I am getting a straight story from my son's surgical team as to what is really going on with his head and whether this is in fact an under correction..... Our cranio facial plastic surgeon actually told me that a second surgery is too risky and he wouldn't perform it anyway and later on in life, we can inject fat into his forehead to push it out? I might need a second opinion but where to go from here? I am hoping there are some other metopic parents that can give me some advice. Thankful for any thoughts at all
With love.xx

Updated 10-30-2013 at 02:17 AM by Bluetree

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  1. Tammy's Avatar
    Reading this really brings back some memories as I went through the same things with my son. He was under-corrected. The surgeon actually used that term. And my son had to have a 2nd surgery and I took him to Dr. Fearon for that one. He was 50% delayed in speech and language, but after that 2nd surgery his speech took off. The day after the 2nd surgery he started calling me mamma. Now, at almost 3 years of age, he is advanced in many areas. I really believe it is only because of that 2nd surgery. I have photos here in my albums and I have lots of info on my blog as well. http://jessescraniojourney.blogspot.com/ Please feel free to contact me if you like.