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Thread: Bad News At Follow-up! :o(

  1. #1
    Cranio Mentor and Azia's Mommy Tawnia has a spectacular aura about Tawnia has a spectacular aura about Tawnia's Avatar
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    Default Bad News At Follow-up! :o(

    Ok the good news is that her incison is healing great and it seems like all the bone is already filling in great.

    The bad news???


    I WAS RIGHT!!! I wasn't being a paranoid mommy. I pointed out the eyebrow thing and he said that is NOT normal and that it looks like one of the sutures got loosened and the bone graft on one side twisted so the top of one eye socket ended up higher than the other then (as if to infuriate me) he said "I will take the credit on this one" ! He said it has never happened before and we will see what it looks like in 6 months but she may need another surgery down the road to fix it. I was crying when we left. I thought this was over. He said the "bumps" are normal and will go down over the next 6 months but that one eye is "definitely higher" and that he can even see that one of her eyes is more "pinched" at the corner as a result. I am fuming right now...I don't even know...I am devastated.

    Here is a close-up. See the bump abover her right eye? That should be even with the brow bone (bump at outside of left eyebrow) on the other side:


    Here are her eyes. See how the left eye looks more "pinched" at the outside corner than the right?



    I am so upset I don't even know what to say.

  2. #2
    Tamz Tamz has a spectacular aura about Tamz has a spectacular aura about Tamz's Avatar
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    I am sorry Tawnia, my prayers are with you and lil Azia kiss her for me please?

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    that is so unreal. what a bummer. Sorry that you received this kind of news. The good side is that it is fixable, the bad side though is the surgery. I guess it is hard to tell what the body will do once you are all stitched up.
    Big hugs, Dawn

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    mrs j has a spectacular aura about mrs j has a spectacular aura about mrs j's Avatar
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    oh no Tawnia, thats awful for you, you can see very clearly in those pics what has happened and as for the surgeon saying "ill take the credit for this one" well what can you say to that. I dont blame you for being angry you must feel absolutely livid, but like mommysbudbud said they can fix it, although thats no concelation to you, big kisses to Azia, will be thinking of you. xx




    Heather



    BRADLEY 5..... METOPIC CRANIO, cvr/foa performed on 14th February 2008, by Mr Wall at the John Radcliffe Hospital,Oxford.

    Kirsten 7 (kidney duplex,ureteroceole)
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  5. #5
    charliesmummy will become famous soon enough charliesmummy's Avatar
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    Oh Tawnia i just dont know what to say, im so sorry. You were right, mummy's are always right!! Im sending you big hugs from me & Charlie , i wish i could say something to make you feel better right now. Azia is still so beautiful and with all her hair it will cover it for a while. If they do need to operate again did they say if it would be as invasive or would it be a case of going in and correcting the twist?
    Jacqui - mummy to Charlie, Metopic cranio & Harry (no cranio)

    Surgery carried out on 6th Sep 2007
    CVR/FOA at John Radcliffe Hospital Oxford
    Surgeon - David Johnson

    Charlie's Metopic Journey - www.craniokids.org/support/showthread.php?t=16222

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    Registered User Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet's Avatar
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    I'm so sorry to hear that!!! I honestly thought it was because of the swelling. I pray that she doesn't need another surgery.
    Mom to Noah (no cranio)
    Fiona (Metopic):
    Surgery #1 CVR/FOA 9-26-07 (age 10 months) Sick kids in Toronto with Dr. Phillips (PS) Dr Kulkarni (NS)
    Surgery #2 Cyst removed over left eye 9/08 Dr. Phillips (PS)
    Surgery #3 Cranioplasty 10-18-11 (almost 5 years old) for soft spots filled in with titanium plates/peek implant from bone resorption and scar revision. Dr. Phillips


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    jenniferann75 is just starting out jenniferann75's Avatar
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    I'm so sorry Tawnia. What terrible news to hear. It seems that us moms always know when something is not quite right. How frustrating. (((hugs)))
    Jen ----> My Blog
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    Sagittal Craniosynostosis, modified strip craniectomy 7/6/07



  8. #8
    Cranio Mentor and Azia's Mommy Tawnia has a spectacular aura about Tawnia has a spectacular aura about Tawnia's Avatar
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    If they have to repait it he said it will just be a matter of putting a bit of bone on top of the brow bone to make it look even to the other one, it won't be a big surgery. I don't think they have any plans to fix the twist unless it becomes an issue.

  9. #9
    charliesmummy will become famous soon enough charliesmummy's Avatar
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    I just remembered when Charlie was 6 months old i met a little boy who had Metopic surgery and he had a visible bump on the left side of his forehead. His was due to over bone growth so slightly different to Azia but they were told to leave him until he was older and if it became an issue to him they could do a small procedure and go it and file it down. Is this something that Azia could have done? Sorry for all the questions im just thinking ahead for you. I cant see anything else visable other than the bump xx
    Jacqui - mummy to Charlie, Metopic cranio & Harry (no cranio)

    Surgery carried out on 6th Sep 2007
    CVR/FOA at John Radcliffe Hospital Oxford
    Surgeon - David Johnson

    Charlie's Metopic Journey - www.craniokids.org/support/showthread.php?t=16222

  10. #10
    Gavin's Mom sarahob is just starting out sarahob's Avatar
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    Hi Tawnia. I can't even imagine how frustrated and angry you must of felt when you got this news. I'm glad to hear that she is doing well otherwise.
    Mom to
    Gavin (4 years - total CVR for saggital cranio, October 24, 2007)
    Blake (6 - no cranio) and Mischa (2 - no cranio)

    Ontario, Canada

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