Results 1 to 4 of 4

Thread: Total Cranial vault reconstruction

  1. #1
    Distinguished Community Member Ging's Avatar
    Join Date
    Mar 2007
    Posts
    288

    Default 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. #2
    Community Member dagaz's Avatar
    Join Date
    Oct 2006
    Location
    Alberta Canada, with a Beatiful view of the Rockies
    Posts
    46

    Default

    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 at 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!

  3. #3
    Distinguished Community Member Ging's Avatar
    Join Date
    Mar 2007
    Posts
    288

    Default

    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

  4. #4
    Community Member dagaz's Avatar
    Join Date
    Oct 2006
    Location
    Alberta Canada, with a Beatiful view of the Rockies
    Posts
    46

    Default

    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


    www.youtube.com/watch?v=46Kx4dD6Vh4‎
    Last edited by dagaz; 06-12-2013 at 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!

Similar Threads

  1. TOTAL PML CASES in MS PATIENTS ON TYSABRI
    By agate in forum Multiple Sclerosis
    Replies: 178
    Last Post: 10-11-2017, 01:08 PM
  2. 5 new Tysabri-related PML cases--total now 150
    By agate in forum Multiple Sclerosis
    Replies: 17
    Last Post: 08-22-2011, 08:10 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.