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    Total Cranial vault reconstruction

    Hi , I am GING from another forum,
    my grand niece ( 8months) is to have this surgery on June 18th, I as wondering if anyone in this forum has any information on this . I do know she has a special helmet that she will have to wear for a LoNG while. The surgeon explained some of the things that could go wrong, but they down play it so much.
    I do know they have to remove her entire forehead and cut away quite a bit of bone...if any of you can tell me the best way to give support to my little sweet family, please do...I don't live where they are but would try and go if I could. I just want to gather information in the real world and not just from google. I wasn't even sure where to post this., thanks in advance for any help .
    GING

    #2
    I know that often there is a lot of blood loss during this surgery however I have no personal experience with it. Have you and your family been asked to donate blood if you are indeed a match? If not ask if you can. Most people feel better having direct relatives be the blood donor if at all possible. I have had 2 craniofacial craniotomies and in those surgeries my forehead was removed. I have a mesh in it's place or with it, and because I'm an adult one can see the outline of the screws and the grid of the mesh. Because your grand niece is a baby the fat under her skin should hide the screws. I don't recommend viewing the surgery on you tube or on line because it is quite graphic. I am a nursing student and have looked at videos of surgeries that were like mine and I found it a little disturbing. Good luck and I hope for a safe uneventful surgery for your niece...

    Connie
    Last edited by dagaz; 05-30-2013, 11:23 PM.
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

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      #3
      Thanks Connie. Yes they did ask for a lot of blood donations from family, I did look up and read about this surgery but so much of the medical speak escaped my intelligence . I just want to be as supportive and optimistic for them as I can.
      I just read your bio, and you are an amazing woman to have gone through so much . Thank you for replying to my post , I wasn't sure where to ask this .
      You will be a wonderful nurse...your compassion for others shows through in your writing.
      Best to you always....GING

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        #4
        Hi, I'm glad you found this place.. unfortunately the posting on the forums has declined greatly since the move/update... I wonder if the old site is still going.. Thank you for your kind words, I hope I am able to do the physical job of nursing, however I am extremely stubborn and if anything that will get me through. I too have hydrocephalus but your niece's situation is very different. I will look for a forum that is aimed at children. If you go to google scholar you may find more information. If you really want to see the surgery (VERY GRAPHIC) you can find it in you tube... Good luck... Connie
        This is a place you can find more information... it's not too graphic... it is on you tube, you will find much more there as well.

        LactoSorb Cranial Vault Reconstruction with Dr. Barry Eppley


        Only registered and activated users can see links., Click Here To Register...
        Last edited by dagaz; 06-12-2013, 11:55 PM.
        Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

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