angeleka
11-06-2007, 03:28 PM
Hello all.
My name is Angi and I am from Michigan. My 11 week old son was just diagnosed with metopic stenosis. His CT and neurologist appt. are scheduled for 11/26. They tell me it is being done to get a road map for surgery not to confirm diagnosis. His surgery is scheduled for February 6, 2008. I am seriously considering canceling it. I know I want a second opinion, but the only hospital (U of M) we can go to for the second opinion has major issues with my insurance company. If they approve the second opinion, they most likely will not approve the surgery there.
To start from the beginning.... My son has looked the same to us since birth. The features that we said were perfect the first time we saw his face are the ones they want to change. (forehead, nose, and eyes) At his 2 month appt. our pedi. said that he did not like the look of my son's head and sen us for xray. The radiologist said his metopic suture did not appear fused on top, but the bottom of the suture was questionable and recommended a CT scan. Pedi pushed for us to see a plastic surgeon at Children's Hospital which we saw last week. She is the Chief of Plastics. She said it was obvious to her without looking at the xray that his metopic suture was fully fused. She said the xray just confirmed her thoughts. She set a surgery date for when he will be 5 1/2 months because she said this is the best time to do it and had us schedule a CT for a surgical road map.
My confusion began when she looked at me and said that I must have ha the same issue when I was a baby. She told me to look at my old baby pictures which I did. I also looked at my brothers' pictures. We all have the same head and eyes as my son. None of us look deformed in any way. We do not have any eye issues or brain issues. I am now quite uncomfortable with the thought of them operating on my child for what they tell me is a 1% chance of brain or eye problems. From what I have read, there is more of a chance that he will have problems from the surgery. I keep reading that 99% of metopic surgeries are done for purely cosmetic reasons yet the features that they want to change on my son do not appear to need to be changed. To tell you the truth, they are the only parts of him that resemble me. From the eyes down, he is his father's baby. If the CT shows pressure on his brain, the decision will be easy, but if it doesn't I will have a huge decision to make. If my whole family has this issue (all of us over 30) why should I assume my son will be different? Can I really take the chance that he won't be different? Do I or don't I? I don't know where to turn anymore.
I am trying to get as much info and as many answer as I can so I can do what is best for my little angel. I am turning now to all of you for personal stories, info, and advice. My wish is to talk to people who have had the surgery for there children and those who chose not to... or at least chose to wait.
Thank you!
Angi
My name is Angi and I am from Michigan. My 11 week old son was just diagnosed with metopic stenosis. His CT and neurologist appt. are scheduled for 11/26. They tell me it is being done to get a road map for surgery not to confirm diagnosis. His surgery is scheduled for February 6, 2008. I am seriously considering canceling it. I know I want a second opinion, but the only hospital (U of M) we can go to for the second opinion has major issues with my insurance company. If they approve the second opinion, they most likely will not approve the surgery there.
To start from the beginning.... My son has looked the same to us since birth. The features that we said were perfect the first time we saw his face are the ones they want to change. (forehead, nose, and eyes) At his 2 month appt. our pedi. said that he did not like the look of my son's head and sen us for xray. The radiologist said his metopic suture did not appear fused on top, but the bottom of the suture was questionable and recommended a CT scan. Pedi pushed for us to see a plastic surgeon at Children's Hospital which we saw last week. She is the Chief of Plastics. She said it was obvious to her without looking at the xray that his metopic suture was fully fused. She said the xray just confirmed her thoughts. She set a surgery date for when he will be 5 1/2 months because she said this is the best time to do it and had us schedule a CT for a surgical road map.
My confusion began when she looked at me and said that I must have ha the same issue when I was a baby. She told me to look at my old baby pictures which I did. I also looked at my brothers' pictures. We all have the same head and eyes as my son. None of us look deformed in any way. We do not have any eye issues or brain issues. I am now quite uncomfortable with the thought of them operating on my child for what they tell me is a 1% chance of brain or eye problems. From what I have read, there is more of a chance that he will have problems from the surgery. I keep reading that 99% of metopic surgeries are done for purely cosmetic reasons yet the features that they want to change on my son do not appear to need to be changed. To tell you the truth, they are the only parts of him that resemble me. From the eyes down, he is his father's baby. If the CT shows pressure on his brain, the decision will be easy, but if it doesn't I will have a huge decision to make. If my whole family has this issue (all of us over 30) why should I assume my son will be different? Can I really take the chance that he won't be different? Do I or don't I? I don't know where to turn anymore.
I am trying to get as much info and as many answer as I can so I can do what is best for my little angel. I am turning now to all of you for personal stories, info, and advice. My wish is to talk to people who have had the surgery for there children and those who chose not to... or at least chose to wait.
Thank you!
Angi