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Thread: South Carolina, 2.5 month old diagnosed with sagittal doc wants to do CVR ?

  1. #1

    Question South Carolina, 2.5 month old diagnosed with sagittal doc wants to do CVR ?

    South Carolina Resident... Sagittal Cranio
    Anyone else from South Carolina??

    I knew my daughters head appeared smaller in the back than in the front not long after she was born. Four weeks later she developed a ridge from temple to temple. At her two month check up her head was measuring at 98% we were sent for ultrasound then referred to neurosurgeon for benign external fluid.
    As soon as PA saw my daughter she said your baby does not have hydrocephalus and her head measurement is fine for her size, she weighs 13.4 lbs born 2-25-15. But she said I am concerned about the shape of her head and thought Jalaina had sagittal cranio. The neurosurgeon came in and said the same thing and sent us to get a ct to confirm before talking to us about what type of surgery she would be able to have.
    Ct confirmed sagittal suture is closed. Closed completely at back of head going up ohmost to soft spot but not quite. My daughters forehead is bossing some.
    The surgeon said she is not a candidate for minimally evasive surgery because her suture is closed at the base in the back.
    He wants to do CVR where he cuts about two inches out of sagittal area then put slits, then remove frontal bones to change them. I really do not feel comfortable with messing with the front area.
    Did anyone else have work done to the front area for sagittal? I would prefer to cut sagittal area with slits and have my daughter wear a helmet if needed. I am very worried.

    I am waiting for the plastic surgeons office to call me with an appointment.
    Last edited by jmondo; 05-14-2015 at 02:41 PM.

  2. #2

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    Hi jmondo,

    My son (4.5 months) was also recently diagnosed with sagittal craniosynostosis and will be having the endoscopic surgery up here in DC at Children's National. I'm originally from SC, though, which is why I wanted to respond :) If you feel uncomfortable with anything that any doc says, I would definitely get a second opinion. What I've learned is that there are different surgery approaches and different doctors prefer different methods. I'm obviously not a doctor and don't know the specifics of your daughter's case but since sagittal can often be corrected at her age by endoscopic surgery with follow-up helmet therapy, I would talk to another doctor to see how they would approach it. I read a blog of someone in Pawley's Island whose daughter had spring surgery with some doctors at MUSC and was happy with how everything turned out. I've also read good things about the doctors at Wake Forest and Duke. We love our doctor (Dr. Suresh Magge) here in DC at Children's National. Good luck!

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