Mild Metopic Forum

[momoftwo]

I hear that most members here are also members of CAPPS. So, I hope that it is okay to post this here..

"MILD" Metopic families.
World Renowned Craniofacial Surgeon, Dr. David Staffenberg http://www.newyorkcraniofacialsurgery.com/media.html (http://www.newyorkcraniofacialsurgery.com/media.html) has volunteered to chat with us!
MONDAY 7/21/08 AT 9:00 PM EST
GET YOUR QUESTIONS READY!

I know that we have a lot of mild metopic kiddos on here and I was excited when I heard about it and wanted to share...just in case you didn't know or have checked in on that site in awhile. http://www.cappskids.org (http://www.cappskids.org/)

[Amyly2n]

Yay! I am excited. Hopefully my hubby will "watch" Alice so I can chat with this. Can someone copy the chat in case some of us miss it? That is so exciting!

Thanks Amy!

[grayridge]

I am sure I will miss the chat - just the way life is right now. Could someone pretty pretty please copy the chat? Thanks

[dannlark]

I'll be there!! So exciting! I have no idea how to "copy" it, but I'm sure it'll be available for us to see afterwords... Thanks Amy for posting this!!!

[mckennasmum]

yes, I'm going to miss it too due to the time difference, so any way to keep the info, or pass it on to me is greatly appreciated

[Amyly2n]

I've got to remember this... I thought it was last night, whew.

[Shar]

I am going to try and attend this as well!

[xl1200c]

Just bumping this to the top as a reminder.

[momoftwo]

Thanks Cathy..I almost forgot!!

[mckennasmum]

how did it go, just got home and wondering what everyone thought, dying to know all about it and hoping to read the text of it. Anyone?????

[momoftwo]

I don't think we were able to copy the text...I will check on it later. Overall it was good..we only had 30 min of his time. We asked what makes mild metopic no surgery turn into surgery and he could not give a specific answer.

I will say this, I told him about Logan, very prominent metopic ridge, slight pinching of temples and slight narrowing of forehead and he said it sounded more than mild. He admitted he is more aggressive with metopics .. he said that as medical advances are made to make surgery safer and as they are finding more and more metopics, even mild, with ICP, he is more aggressive. To him and his collegues, once you have more than a ridge (which to him is mild trigon) and you get any pinching or narrowing, surgery is a real possibility.

I, as well as some of the other moms, felt unsettled at the end. You know the second guessing the wait and see.

I have to go for now, but I will try to post more later. Several other moms from this site were on it as well, so ask any questions about it and we will try to post what was covered.

[dannlark]

Thanks for posting about it Amy. I missed it last night, I hope we can see a copy... Dr. Fearon is in the same thought on the "mild" treatment. He's more opt to act when it's "mild". Although he did say he would have waited a bit with Ian if his "mild" wasn't almost moderate. Did the Dr. think that once the pinching started, it only got worse?

[Amyly2n]

oh I knew I forgot something!

[mckennasmum]

thanks for the info, i guess he can't really commit to too much over the web, did he say when they are finding this increase in ICP is it while they are babies/toddlers, or is it when they are older and potential damage already done!

[Mindy]

No, he didn't say when they find increased ICP or that he sees it frequently with mild metopics. He said that he is trying to find a way to determine whether its possible to have increased pressure in one particular area of the brain (ie. the frontal lobe with metopic cranio) vs. having to have generalized increases in pressure, but that research hasn't shown that yet. He did not say anything about the trigono. worsening as the child ages.

He talked about having a minor procedure done to shave down the metopic ridge when the child is older. He said that he has become more aggressive in treating mild metopics b/c he feels that he has become more skilled and it makes the surgery more safe now.

The first question I asked is when would he consider surgical intervention in a baby with mild metopic cranio. He said that was a difficult question to answer.

I wish I had the script, but I couldn't copy it. If I think of anything else, I'll let you know.

[mckennasmum]

oh i wish i could have seen it, I'm so frustrated right now!!! Any other suture is basically (& correct me if I'm wrong!) surgery off the bat, no 'wait and see,' how come metopic is so different, is it still not a fused suture, is it still not altering the head shape, could it still not effect the child long term. How come there isn't some standard or norm for when surgery is required. So basically it all depnds on who you see???? I just don't find that good enough! Sorry I'm just at the peak of frustration right now, especially with McKenna's NS appt on Monday, boy is she is for a lot of questioning! (btw I do trust her judgement just interested to see what she will say about McKenna's head changes!)

[grayridge]

Susan I completely agree with you. I wish there were some better answers for us mild metopics. Let me know if you get any answers on Monday.

[Max's Mommy]

Hey all - I really wish I booked more time with Dr S. Im sorry that some of you feel unsettled but it is one of the reasons that we have these chats - a sort of informal informational. PLEASE if you feel unsettled and you need help finding another opinion - email me syddesi2@aol.com I will do what I can to point you in the right direction.

I am working on another doctor chat with another more aggressive mild metopic surgeon. If he can find time for us (he has before) he will be on CAPPSKIDS soon.

I know how you feel. It is not always cut and dry especially with a mild or partial case of any suture. And, I know this isnt cranio but lets not forget about the untreated plagio babies that get worse and worse and end up needing a full cvr as well.
There are a lot of families that are in the same boat as mild metopic families and that's why we need DEFINATE answers. We need to work with surgeons to have a standard of practice published when it comes to Metopics. Parents SHOULD know what to expect. This shouldn't be a wait and see. As Dr S said, if the mother is concerned, the doctor needs to be concerned.

There should be guidelines that ALL doctors adhere to - unfortunately there aren't. As Dr Staffenberg said, if you go to the busier centers and the more experienced surgeons, they are more liklely to operate because they have that experience that makes it a safer surgery - they have also had the experience of seeing the ICP on the mild metopics. If you use a doctor that only treats 10 or 20 cranio cases a year, they may not believe because they have never seen.

This is a hard subject - one that requires some attention. I am working on it. I promise.

(((HUGS))) to you all!

[momoftwo]

No, he didn't say when they find increased ICP or that he sees it frequently with mild metopics. He said that he is trying to find a way to determine whether its possible to have increased pressure in one particular area of the brain (ie. the frontal lobe with metopic cranio) vs. having to have generalized increases in pressure, but that research hasn't shown that yet. He did not say anything about the trigono. worsening

Sorry for the confusion on that, I was in a hurry when I typed that up. After Dr. Staffenberg left, Amy (see above post) indicated that one the reasons he was more aggressive was because of they have seen ICP on mild metopics.

[Mindy]

No, he didn't say when they find increased ICP or that he sees it frequently with mild metopics. He said that he is trying to find a way to determine whether its possible to have increased pressure in one particular area of the brain (ie. the frontal lobe with metopic cranio) vs. having to have generalized increases in pressure, but that research hasn't shown that yet. He did not say anything about the trigono. worsening

Sorry for the confusion on that, I was in a hurry when I typed that up. After Dr. Staffenberg left, Amy (see above post) indicated that one the reasons he was more aggressive was because of they have seen ICP on mild metopics.


Amy,
I was answering the question that Mckennasmum asked. Sorry if it looked like I was disagreeing with what you typed, I wasn't! :o)

[Max's Mommy]

Ok all - I really want to make sure the next doctor chat is at a good time of evening. The surgeon I have lined up is on Mountain time. Can I have some insight as to what would be a good time for all - obviously 9 EST was not too convenient but I was accomodating the doctor. I really want you all to be able to make it and get some more of your questions answered.

Let me know.

Email me if you can and I will get a general idea.
syddesi2@aol.com

[momoftwo]

The 9 EST worked great for me, but I know it was not so good for others. For me, anytime after 7:30 pm EST is best..the kids are in bed then :) ! Thanks Amy!!

[mckennasmum]

doesn't matter for me, so much of a time difference to here, generally anything afternoon or night in the US means morning to lunchtime here!

[Amy K]

I just read the archived chat over at cappskids with Dr. Fearon... that was so cool!