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Thread: Cranio shape returing after surgery...

  1. #1

    Default Cranio shape returing after surgery...

    Ya know how surgeons say that the pre-surgery headshape wants to come back, even after it's corrected? In these pics, look at Camden's scar and you can see how much his head has grown back out in the back. The first pic was only 5wks after surgery, the second pic is 2yrs later. Any other sagittal go back this much? I know this is to be expected, but I wonder to what extent..

    Mom to Camden Sagittal Cranio Kid
    Posterior CVR- Fearon/Swift
    Anterior CVR/FOA- Genecov/Weprin


  2. #2
    On the other side again! jjmc123's Avatar
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    I am having a similar problem except my son had surgery for his left coronal suture. Good luck! We're seeing our pns & ps in 2 weeks for a checkup so we're hoping to get some answers.

  3. #3

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    Thanks :) and welcome to CK! We see our surgeons in a few weeks too, actually our appt. just got pushed back a bit....but I hope we both get some reassurance!
    Mom to Camden Sagittal Cranio Kid
    Posterior CVR- Fearon/Swift
    Anterior CVR/FOA- Genecov/Weprin


  4. #4
    Registered User Janet's Avatar
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    No advice honey, just a big to my friend. I hope you get some answers soon, this cranio journey is such a roller coaster.
    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


  5. #5

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    Thanks Janet! Rollercoaster for sure.....
    Mom to Camden Sagittal Cranio Kid
    Posterior CVR- Fearon/Swift
    Anterior CVR/FOA- Genecov/Weprin


  6. #6
    Alex's mama *jules*'s Avatar
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    hugs Amy. I really see what you're talking about in the pics, but being a metopic mom, I have no answers for you. I hope Dr. F can shed some light on what's going on.
    Julie
    mom of two boys
    Zachary Joseph Marquez 9/4/02 - no cranio
    Alexander Michael Marquez 9/2/08 - metopic cranio
    surgery 5/15/09 with Dr. Fearon & Dr. Sacco

    http://www.caringbridge.org/visit/alexmarquez

  7. #7
    We're on the other side!! dannlark's Avatar
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    ((HUGS)) Momma! It's so hard to tell what is "normal" toddler head growth and what might be something to be concerned about. You can see the difference, for sure, but it doesn't look "odd". They take a LOT of bone out when they do the CVR to bring the head back to within a normal range, so some regrowth wouldn't be totally abnormal, right? WHEN do you go see Dr. F again??? Hang in there and keep us posted. How is his therapy going??
    Larkin
    Mom to 3 boys: Aidan 9/8/2000 Camden 7/29/2003 Ian 7/29/2007 - Upper end "Mild" metopic. Surgery 8/27/08, Dr. Fearon, Medical City Dallas. We're on the other side!!!
    http://www.caringbridge.org/visit/ianrodriguez


  8. #8
    lovin' my lambdoid cutie boy! evergreenmom's Avatar
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    Amy-

    I think Cam is adorable and not being a saggi momma I guess I am not that sensitive to it, but I think he looks like a normal little boy... How are his head measurements?

    I have concerns over how X is looking- we are almost one year out and some of his lambdoidness definitely returned after surgery. Dr F told me it could happen, but he said it would most likely be cosmetic...in other words not significant enough to cause ICP and therefore require additional surgery.

    I totally understand how you feel about this. It's hard to feel ok about any return to the shape we went through surgery to get rid of. I guess it's just part of this ole cranio ride....

    We go see Dr Fearon in March. I'll keep you posted.
    Kristin, Momma of two rambunctious cuties:
    Lucy born 3/05 "failure to thrive"- negative percentile on growth chart for weight 3/06 to 3/08
    Xander born 3/08 Left Lambdoid Synostosis and Chiari Malformation- Posterior CVR Surgery 2/09 w/ Dr Fearon and Dr Sacco at Medical City Hospital Dallas, TX (fought insurance and won in network gap exception) rant rant rant....

  9. #9

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    Yeh, the back doesn't really look odd to me either. I just didn't realize how much it had changed until comparing these two pics together. (Been comparing alot...we'll be 2yrs post op this Friday!) I guess that's why they over-correct, huh?! I just wish that the growth in the back of his head would've happened on the sides instead! I'm still hoping to see better measurements than we had last year though...we'll see. We will be in Dallas in about 4wks!!

    Larkin, therapy is going well...although we've taken a bit of a break around the holidays.

    Thanks, Jules and Lark :)
    Mom to Camden Sagittal Cranio Kid
    Posterior CVR- Fearon/Swift
    Anterior CVR/FOA- Genecov/Weprin


  10. #10

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    Quote Originally Posted by evergreenmom View Post
    Amy-

    I think Cam is adorable and not being a saggi momma I guess I am not that sensitive to it, but I think he looks like a normal little boy... How are his head measurements?

    I have concerns over how X is looking- we are almost one year out and some of his lambdoidness definitely returned after surgery. Dr F told me it could happen, but he said it would most likely be cosmetic...in other words not significant enough to cause ICP and therefore require additional surgery.

    I totally understand how you feel about this. It's hard to feel ok about any return to the shape we went through surgery to get rid of. I guess it's just part of this ole cranio ride....

    We go see Dr Fearon in March. I'll keep you posted.
    Oops, Kristin...I didn't see your post! Thanks girl! Well, Cam's head has continued to have sagittal (elongated) growth since his surgery, so we're kinda wondering what the future holds. Hoping to hear GOOD news though! Yes, if we choose, with Dr. Fearon, to have a second surgery on the front of Cam's head, it too would be "cosmetic". Although, with his recent MRI, we do have some questions which will be addressed by Dr. Fearon and Dr. Swift. Cam has lump on the very top of his head (we sagittal momma's call it the saggy "bump") and his brain is growing up into the lump. I know the brain will grow where it has room and this just concerns me about the narrowness at the front of his head and there not being enough room there. Anyway, we'll check that out too....
    Mom to Camden Sagittal Cranio Kid
    Posterior CVR- Fearon/Swift
    Anterior CVR/FOA- Genecov/Weprin


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