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Thread: Strip Craniectomy + Barrel Staving Approach

  1. #1

    Default Strip Craniectomy + Barrel Staving Approach

    My daughter (7weeks) was recently diagnosed with Sagittal Craniosynostosis. A CT scan confirmed it and also verified that there is only one closed suture (Sagittal).

    One of the doctors we met with uses an approach that is endoscopic strip craniectomy + barrel staving. It is done with a larger incision than the typical endo procedure (but much smaller than CVS) so as to be able to see and avoid cutting into the sinus veins towards the back of the skull (and for the barrel stave cuts I'm assuming - will ask more questions in the next appt). She also does not use helmets post op. Have any of you used a doctor with this type of approach?

    Thanks in advance!

  2. #2
    audra15's Avatar
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    My daughter had a strip craniectomy with barrel staves but she had the typical large incision instead of endo. No helmet after either. She was 4.5 months at the time and it worked great for her. She's 5+ years post-op and has had no issues since surgery. Let me know if you have any more specific questions.
    Beth
    Kyra Rose - born 5/25/09
    sagittal surgery -10/14/09 at CHOP

  3. #3

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    Thank you for the quick reply! Did your daughter need a transfusion? Our doctor has said there is a 50% chance with this approach. That is probably the biggest concern I have at this point given that she will only be 2.5 months old at the time of surgery.

    I am also trying to understand why more doctors are not using this approach - it seems to be either endo (if 2-3 months old) or CVR from what I have found. To me it makes sense to be able to avoid helmet therapy, lessen the possibility of future CVR and being able to see and avoid the sinus veins.

  4. #4
    Administrator Lauren's Avatar
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    My sagittal kid had the Pi procedure with barrel staves 13 years ago. Nothing was removed, everything was just cut so his head was able to pop into its intended shape. I'm not up on current procedures though as I'm way too busy dealing with a teenager.

    No problems here and wouldn't hesitate recommending it.

    Oh, and he did have transfusions. They took one pint of my husbands blood and split it into three baby pints. They felt that he needed two and was borderline for the third. Since they would destroy it and having it would only make him feel better they gave him the third. He likely would have been ok without the last one.
    Lauren
    Mom to Matthew (sagittal, surgery 11/9/01 at NEMC in Boston) and Danny

  5. #5

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    Hello! My son was diagnosed with partial sagittal craniosynostosis at 4 months old and had surgery at 7 months old. He had a strip craniectomy with barrel staving but it was not endoscopic. He is now almost 4 years post op and we have had no problems. We haven't seen the neurosurgeon in 3 years but we are supposed to make an appointment before he starts kindergarten (this year) to make sure everything has filled in properly. I wish we could fast forward so I could share what we found out! He does have a slight hump on the top of his skull which previously I was told was just the bone filling in and would even out over time, but I am going to ask about it again. I read something after the fact that said the strip craniectomy may lead to more second surgeries than a full CVR but I don't remember where I read it or if it was from a reputable source - it may be something to ask the surgeon about though. Honestly we weren't given a choice of procedures and I didn't know enough at the time to ask if there was a different way. I don't question it though. I don't anticipate any further procedures for us but will feel better after our appt! My son did not wear a helmet and did not need a blood transfusion.
    Last edited by CranioMama; 01-19-2015 at 05:06 AM.

  6. #6
    Amanda3796's Avatar
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    Hi! My son was diagnosed with sagittal craniosynostosis at 4 months of age and had surgery at 7 months of age. He had a posterior cranial vault reconstruction (CVR) and had barrel staves done on his forehead. He is just now completing his close to 5 year post op visits and he saw his neurosurgeon today. No complications here - lots of bumps and lumps along the way but they have evened out over time (which they told us they would). He still has a little hump on the top front of his head - but it's not bad - even if it doesn't even out - it's not an issue. He doesn't have any holes and his skull is filled in nicely. My son DID need a blood transfusion but no complications from that. He is now in preschool and doing great!!
    Last edited by Amanda3796; 03-23-2015 at 09:36 PM.
    Amanda
    Proud Mommy to Gabriel 5.17.10

    Confirmed Sagittal Synostosis Diagnosis 09.15.10

    Surgery 10.21.10 with Dr. Johnson (NS) and Dr. Ruiz (CFS)

    WE ARE ON THE OTHER SIDE!!

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