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  1. #1
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    Default Ridge in Forehead, Possible Metopic Craniosyntosis

    Hi All

    At a recent MCHN visit the nurse identified a ridge in my 8MO babys forehead, which is a raised line running from the bridge of his nose up to the fontenelle on the top of the head. I didn't think much of it at the time but when I got home I looked it up on google and found it might be quite serious, in fact, I'm thinking it could be mild metopic craniosyntosis, which is basically when the sutures in the skull begin to fuse too early. Without wanting to self-diagnose (we all know the internet can be dangerous for information overload and unncessary frightening!) but I feel that this is what he has and we're desperately worried and scared. The worst case scenerio for this condtion is having to have surgery.

    We are seeing a paedetrician tomorrow and suspect we'll probably get a referal to a paedatric nuerologist or something but since we're so worried I thought I'd put the call out there to see if anyone else has gone through this, or had a diagnosis. Or if anyone has also found a ridge in their babies head - and maybe it turned out to be something else?

    Your comments would be much welcomed as the anticipation and anxiety of not knowing, and not knowing where to turn are really wearing me down

  2. #2
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    big hugs to you, my mchn picked up at around 12 weeks my DD had a very elongated head that came out into a cone at the back and considering I had a c-sect her head was not quite right - sagital cranial synostis was suspected. We saw our pead and first thing she did was send our DD for an x-ray of her head - a decission that was not taken lightly due to the levels of radiation. From there we were referred to to a pediatric neuosurgeon but happily we were given the all clear her head shape was from the way she sat in my rib cage in the womb and is quite a common thing for a breech baby. Happy outcome for us but man the stress was horrible, I lost my milk supply I could barely function I was just so worried about the whole thing as like you I googled it and its frightening.

    Good luck tommorrow I hope it all goes well

  3. #3
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    Default Any update to "Ridge in forehead...."

    Hi Artnouveau

    I am new to this forum- so just learning the ropes :-) We saw a cranio facial plastic surgeon today as my daughter ( 5 1/2 months) has been diagnosed with moderate metopic craniostenosis. The next step is to have an xray, and see a neurosurgeon and an eye specialist to check for pressure to the brain. Then to make a decision for corrective surgery?@!. The surgeon today thought surgery would be likely. Just wondering how you got on? or if anyone out there has any experience with this

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    Default cranio Mum here to help!

    I just replied in the other cranio thread this morning. I have LOADS of experience with this as my son was diagnosed with sagital craniosynostosis in Feb last year and had his surgery to release the fused sutures in June. Fire away with Q's... I know all too well how scary this is for you, but trust me - it will get better!

  5. #5
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    Subscribing, my son is 2 and a half and has a slight ridge at the top of his head, it's hidden by his hair but you can feel it but not see it.

    DS 2 years + DD 1 year + bellybean = the reason my heart keeps on beating <3

  6. #6
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    Hi Craniobub
    Thanks for the reply....still learning how this works and didnt realise anyone had replied..... so since my last post...we have been to opathamologist- no pressure on the optic nerve, we meet with the neurosurgeon next week.. and we are planning for surgery between July and September... I have done lots of reading, crying , denying, talking about it.. and am holding it together..for now...how is your son now? How was his recovery? I guess I am wondering what I will do for the hours while she is in surgery...

  7. #7
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    Hi!

    Sounds like you're just hanging in there, as I was this time last year. Great news about their being no pressure on the optic nerve.

    A bit of info from me:

    My son is 14 months now and is fantastic. He had his surgery at 5 months of age last June at the Mater Children's Hospital. He had a team of surgeons working on him. His recovery was unbelievable, he bounced back so quickly it was just amazing. He was in ICU for 2 nights and then another 6 nights back on the ward. I think I can say he was back to his usually happy self about 3 weeks after surgery, which is pretty quick really considering he had his entire skull taken apart, remoulded and then put back together. He has a huge ear to ear zig zag scar across his head which can't be seen anymore as his hair has really thickened up. People that don't know what he has been through say that you wouldn't even know. His head shape is now nice and rounded and wider than it was before. The surgeon did a great job! The surgeons also said that because we got to it so early and there was no pressure on his growing brain yet, that his development would not be delayed. I didn't really believe them at the time, but now I know it's true. He is on track with everything (crawled at 8 months, walked at 13 months) and is an absolute champ!!!
    You asked what you would do while she is in surgery.... well, to be honest, I just cried and cried until I saw him again. He went to theatre at 8am and I didn't see him until 3 pm. So it was a loooooooooong day! My hubby was fantastic support and my Mum was with is too. I was so relieved when the neurosurgeon came out and said it was all over, no complications and the reconstructive surgeon was just stitching his head back up. I think I nearly colapsed on the spot with relief, and then started bawling again! So, make sure you have some people with you to support you on the day, because it is very traumatic.

    I really hope all this has helped you and not made it worse. I know you are in so much pain now, but trust me, after surgery things will get better. You can do this, and you just have to think to yourself that it's best your daughter have this surgery now, rather than later and risk more complications.

  8. #8
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    Quote Originally Posted by Madmummymoo View Post
    Hi Craniobub
    Thanks for the reply....still learning how this works and didnt realise anyone had replied..... so since my last post...we have been to opathamologist- no pressure on the optic nerve, we meet with the neurosurgeon next week.. and we are planning for surgery between July and September... I have done lots of reading, crying , denying, talking about it.. and am holding it together..for now...how is your son now? How was his recovery? I guess I am wondering what I will do for the hours while she is in surgery...
    Glad to hear the optic nerves are ok, wishing you all the best for the upcoming surgeory xx


 

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