Surgery not recommended

[Alexandrasmom]

I am new to the group and so glad to have found it. My daughter was diagnosed on Monday with a metopic ridge. She has already seen a PNS and he did not recommend surgery. I was so thrilled about him saying "no surgery", I left the office without asking anything further. We are waiting to get a second opinion, but in the meantime I have so many questions? At what age should the metopic suture normally close? How will this affect her head growth?

Did anyone opt not to have surgery and seen any change in the ridge or in the head itself or developmentally or in the appearance of the face (sucha s position of the eyes), over time? Generally, what can I expect as she gets older if she does not have surgery?

I would really appreciate any input or personal experience, I am quite anxious about the diagnosis.

[Janet]

My daughter had metopic surgery, from what I was told it does not effect the brain, it's consider "cosmetic" but I seem to find it hard to believe that it doesn't effect their brain. My daughter was 10 months when she had the surgery but I know that there are other babies on here that have surgery at 14 months. Fiona's case was moderate, her eyes were close together and they would have stayed like the without the surgery, the doctor said that it would have been hard on her mentally growing up looking "different". I would do the surgery all over again if I had to, I know we made the best decision for our baby girl. Do you have a picture of your little one?

[mrs j]

Hi there, welcome to the group, you have found a great place, im sorry for the diagnosis, it is such a difficult and frightning time, as to regards with not having surgery, i dont know anyone personally that hasn't had it, so i can't really comment on that, but as far as leaving surgery, i can only speak from my own experience, also it really does depend how severe the head shape is, my Bradley is due for surgery next month, he will be 3 in a couple of days, now, when he was born he had a slight ridge, and a wee bit of pinching above the eyes, but as time has gone on, i have to say it has got worse, his head is very triangular in shape, the ridge he has is very thick, and over time his eyes seem to have got closer together, he does have eye sight problems that i was told by the ns was due to the cranio, developmentally, he was quite slow, but i think he is pretty much up to scratch now, i was also told that if he didn't have surgery that we could possibly see a regression in his behaviour and his development, but again this is due to how much the skull is pressing on stuff that it shouldn't be.
I'm glad you are getting a second opinion, i take it she has already had a 3d ct scan.
My personnal opinion, is that over time the metopic head def gets worse, with so many children who looked ok as babies, as they have grown to just under 1yr old, there has been a big change in the shape of the skull, like i said, its great that you are going for a second opinion, as different docs do have different opinions.
Good luck and there are plenty of metopic mums on here that can give you further advice.xx

[EmmaLacey]

How old is your little one? I think it is a good idea to get a second opinion. Seems like doctors all have a different outlook on cranio and depending on how much experience the doctor you saw has with this. I think you can see from some of the pictures on here (before and afters of metopic babies) that the surgery really does make a difference in their appearance. We all think that the babies were beautiful before - especially if its your own baby. But when you see the after pictures you are like - oh yeah.....it looks so much better - Fiona for example - You can really see the difference in her overall head shape and her face and eyes. Look at Sadie's son - Quintin - who is due to have surgery soon - in her signature she shows monthly pictures and you can really see how he has changed over the months and he is only 9 months old. So maybe your baby is still very young so you can't really see much, but who knows what it will be like 6 months from now or a year from now and I'm sure that it will be much more difficult to go through the surgery when the child is older.

[melsch]

My son was also metopic. He was diagnosed at 3 days post partum, his was very obvious. We knew we would have to have surgery. I have no experience with anyone that has not had the surgery so I can not really answer any of those questions for you. I can tell you that Logan had surgery 2 1/2 months ago and is doing so well, it was an amazing experience, and I know we too made the right decision.

[Alexandrasmom]

Thank you for your responses. The doctor, who is considered to be one of the best PNS in California did not even request xrays or cs. He said it should be less noticable with time and not to worry about it. Easy for him to say, but I am so confused and anxious. It seems that Alexandra's case is very mild, but common sense and instinct tell me that this condition can not be without future side effects. I will be seeing a pediatric plastic surgeon in a week, then scheduled with a neurologist in a little over a month. I would be happy to get yet another opinion, if anyone knows of any other specialist in Los Angeles. Her head is shaped normally, and her forehead (except for a small - barely noticeable- point from the ridge) does not come to a point, and you would not notice a ridge unless it was pointed out. In fact, thinking back, I did notice it when she was 3 months old, but kept forgetting to bring it up to the pediatrician, It was barely visable, only if you know what to look for. Her face was a bit askew when born, but the pediatrician recommended stretching excercises for the neck with a physical therapist, and everything has straightened out. This entire thing is such a shock to us, she acts and looks like any other typical infant. I am so concerned that this suture closing early will impact her in the near or far future, yet we are not candidates for surgery. So where does that put us and more importantly, her?

[Alexandrasmom]

She is 6.5 months old

[Alexandrasmom]

Does anyone know when the metopic suture should normally close?

[Janet]

I think it usually closes between 18 month to 2 years. I seem to remember thats what our doctor said. I know that our p/s said that sometimes if it's mild enough no surgery is required, hopefully that is your case

[Wyatt's Mom]

Wyatt has metopic cranio as well. On a scale of 1-10 we were told he is about a 6. That being said, his head shape has definately changed and he is only 9 months old. His forehead has gotten more pointy and his eyes are close together. We are having surgery done next month. Wyatt is considered a mild case and it was our choice. We are opting for surgery so that our son has a chance at a normal life. We don't want kids at school making fun of him for being slightly different.

I think you should get a 2nd opinion and request a 3d ct scan just to make sure.

The metopic suture shouldn't close until around 18-24 months. Your daughter's head still has a lot of growing to do and if it doesn't grow in the right direction her brain could be effected. I know some doctors say metopic doesn't cause brain damage but I find that hard to believe. Someone on here said a round brain doesn't belong in a triangle head.

Anyway, good luck. Let us know what the next doctor says. We'll support you either way, surgery or not so WELCOME to cranio kids!!!

[mrs j]

Sarah, yes your right about the round brain fitting into a triangle space, my ns said that to me and also that the brain is not happy and cannot function to its ultimate capability if its being squeezed into a space that it wasn't made for.

I believe the suture fuses just before the age of 2, and if your daughter is very mild, i think generally surgeons wouldn't recommend surgery, but thats of no real comfort to you obviously, as you will always be wondering about it, but like i said before its good you are getting another opinion.xx

[three.little.boys]

I would get a 2nd opinion. Quintin is 9 mos old and is metopic, too. He looks pretty mild when you look at the shape of his head...he is not as "pointy" on the forehead as some of the other metopic children here...yet, he was still considered 5-6 on a scale of 1-10. Or surgeon believes that the "metabloic functions" of the brain can possible be interrupted with any closure of a suture resulting an even a slightly abnormal skull shape. For example, perhaps some of the blood vessels are slightly compressed, so a certain section of the brain may not be getting all the oxygen it needs. So, intracranial pressure is not the only thing to look at. I really don't mean to scare you, and there are some metopic cases that do not need surgery!

Our surgeon, Dr. Fearon, allows anyone to e-mail photos and CT Scans of your child to him for a second opinion. He has done this for many of the parents on this site...and does not expect you to use him. Here is his link with e-mail address:
http://www.thecraniofacialcenter.org/contact.html

It never hurts to get a 2nd opinion!

Sadie

[Nicholas' Mom]

I have heard of cases where surgery wasn't recommended because the cranio was considered mild. Our NS said that he wouldn't have recommended surgery if Nicholas had a mild case of metopic cranio, but he considered Nicholas' case to be severe (he didn't give us a number on the 1-10 scale, but he said it was without a doubt a severe case, and the PS agreed. After the surgery, the NS said Nicholas' ridge down his forehead was even more pronounced than they originally thought so it was good we decided to have the surgery). I would definitely get a second opinion if I were you as this is too important to have any doubts. Best of luck to you.

[xl1200c]

I have certainly heard of children who have not required surgery for metopic. I believe if the head is not mis-shapen, (squeezed or pinched) in the front, then surgery is not necessary - because in theory, the brain is allowed to grow in a normal shape. Our craniofacial team says this suture can close anytime between 6-24 months. I can PM you some ids of people who did not have surgery. I hope this will be the case for you.

[ellanoah]

I can completely sympathize with you. My daughter has coronal cranio. and it is apparently mild. She is 3 years old though and just now diagnosed. I can tell you, that between the age of 2 1/2 and now, her head has gotten worse. I felt the same way you do when I was first told about how serious the surgery is. I thought...There's no way I am putting her through that. I still may not have the surgery. My Pedi. NS said that only 1 in 4-5 kids with a mild case have developmental delays and depending on the age of the child....surgery is considered to have more risks associated with it than just leaving it alone. Again though, My daughter has coronal and not metopic. I won't put my daughter through a 5-7 hour ordeal, blood transfusion and all the other risks if it is just to fix a small cosmetic issue. After all, non of us look perfect. However, I am where you are in that I want to know about ALL of the possible health risks of the condition, present and future, before deciding against the surgery. Not to scare you, but remember that if you wait until she is a toddler or preschooler, the surgery is much more complicated.
Prayers for your decision! I know it is overwhelming!!

[charliesmummy]

Charlies Metopic deffinately got worse as time went on. He was born with a round head but wilth a ridge from the soft spot right down to the bridge of his nose, it was very mild and barely noticeable but as the months went by his head became more turangular in shape and i knew from research it wouldnt get any better. As some peple have already said, very mild cases can be left especially if it doesnt change the shape of the head so you are right to go for a second opinion. Good luck & please keep us updated x

[Mindy]

Hi,
I have a 6 1/2 month old son who also has a metopic ridge. I was told by a highly recommended craniofacial surgeon at Children's Hospital of Philadelphia that he does not need surgery. He said that some children's suture begins to close around 6 months, but Shane's started closing a little early. I, too, noticed it at 3 months. It becomes a problem with the brain when it is closed at or near birth and when the head takes on the triangular shape (trigonocephaly). A ridge by itself does not require surgery (unless cosmetically it bothers the child). Please email me for more info. and I'll send you some pics of my son.

mjlevpt@comcast.net

Mindy

[Ally]

Hi, I am aslo new to the group. I have already been through the surgery with my child. She aslo had metopic cranio. They operated on her at 7 months. But we seen a plastic surgeon, a neurosurgeon, and an opthamologist. She looked very cross eyed. She wasn't, it was just because of the shape of her nose. Anyway, long story short, please stay on top of it; and demand answers and attention to anything you question. I had a wonderful team of specialist taking care of my doctor. I had appts. 2-3x a week every month. They kept telling me that there was no pressure build up on the brain and she was doing well. But when they operated, there was quite a bit of pressure. On the plus side, she recovered so well. We left the hospital earlier than expected. They told me to expect developmental delays, but she has not had any. She is a very spicy and smart 3 1/2 year old. Even the doctors have been suprised by her recovery. I had another child that had RSV so bad they life flighted him (he was 3 wks old), I didn't push for the test with the doctor. I should have, maybe he wouldn't have been life flighted. My point is stand your ground if you question anything. I hope all goes well, and if your little does need surgery I hope my positive results will give hope.