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Thread: Possible second surgery needed after CVR/FOA for metopic

  1. #1

    Default Possible second surgery needed after CVR/FOA for metopic

    I have not been here for quite some time. My son had his initial surgery 6 years ago for a fairly severe metopic case. We were never 100% thrilled with the result and his surgeon gave him a B+. We continue to see his surgeon every 6 months and for the last 2 years or so my son has had very minimal growth of his head circumference (so from ages 4-6). He is dropping on the growth chart. We are all concerned about ICP but he has not had any symptoms at all. We are also concerned about his cosmetic appearance (although personally we would not have a second CVR just for cosmetic reasons).

    My son's lower forehead is flat and he doesn't really have a defined browbone. Plus the pinching is back. He also has a tall forehead. His surgeon is concerned that it is going to get worse and he will be teased/self-conscious.

    Anyway, I would love to hear from anyone who has had an older child who had surgery or is considering surgery. We're going to be doing more testing (CT scan to see if the bone has thinned), eye exam, etc. and then will have to make a decision.

  2. #2
    Shonamay shonamay's Avatar
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    Feb 2009
    Location
    Bideford, Devon, UK
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    54

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    Hi Janda, we don't know much more yet but your post could have been mine at the start! Our son 6 years post op for metopic with trig has developed a bulge on top of his head. He has also had alot of behavioural and sensory issues in the last 18m and his CFS wants him to have an xray to check for icp. I hope all goes ok for you...Xx
    Metopic Mummy to
    Charles - 17.06.08 - my metopic baby awaiting ct scan - 27th July and surgery 30th July 2009 by Mr Wall at John Radcliffe Hospital, Oxford, UK
    Maisie - 09.05.06
    Tommy - 10.12.04

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