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Thread: Extra bone growth?? What is it??

  1. #1
    QueenB's Avatar
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    Cool Extra bone growth?? What is it??

    Ok, so here goes yet another question. Zane is 7 months post-op and all is going pretty good. I have yet to call either of his surgeons. I feel he has looked better every day with no concerns until now.....It's not a huge deal but I'm wondering if this is what is considered extra bone growth. About a month ago I noticed that his forehead looked a bit larger. Almost like a lump right between his eyes and above, about 1.5 inches in diameter if I was to measure it but it's not in a circle. It's like a bulge. Not huge but it is noticeable to us. I say "us" because I didn't even mention it to anyone, thought I was being a paranoid cranio mom.. until my husband said today, "is he getting that lump back on his forehead". I was like, I'm glad you said something, I thought I was going crazy and being picky. But he said he has noticed it too but was afraid to say anything to me. What does it mean. I'm fine if it stays right how it is, but will it continue to get bigger? What is extra bone growth? Is this just lumpiness from the surgery that will smooth out. He has lumpiness on top of his head but it's been there since surgery and does seem to get smoother over time. I honestly can't even take a pic of it cause it would be hard to show up, but something is there that wasn't even a month ago. I don't want his head getting bigger again in front. WHAT'S GOING ON?????Does anyone have any idea?? THANKS!!
    Beth
    mom to:
    Brad 08/95
    Alli 10/99
    Brent 05/05
    Zane 05/09--Metopic Cranio. Surgery June 21, 2010 at Joe DiMaggio Childrens Hosp.---S.FL
    http://www.carepages.com/carepages/ZaneThomas
    http://www.youtube.com/watch?v=JEMRvSjSaFM

  2. #2
    Registered User Janet's Avatar
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    Fiona has that, she has a lump between her eyes...it's just bone that has grown too thick, they are going to fix it when she has her next surgery.....I call it her speedbump.
    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


  3. #3
    AJ's Mommy AJ's Mommy's Avatar
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    AJ lately has been feeling like he has coronal ridges. I don't know what's normal and what's not. Let me know if you find out. Thinking of you! I hate all the worrying we do. Hugs!
    ~~Shelby~~

    AJ~Sagittal Craniosynostosis
    ~Surgery 10-6-2009 At Seattle Children's Hospital
    ~Dr. Ojemann and Dr. Gruss~

    Cranio Care Bears
    www.craniocarebears.org

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    Nay's Avatar
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    Quote Originally Posted by AJ's Mommy View Post
    I hate all the worrying we do. Hugs!
    I feel like Aaden's cranio has aged me 10 years or more Not a day goes by that I don't look and/or feel his head and wonder/worry about something.

  5. #5
    QueenB's Avatar
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    Thanks you guys.
    Janet--how long after surgery did Fiona start to get the "speedbump"? Did it keep growing? I guess that's my concern. Will it get any bigger? Is it something that will require surgery if it gets bigger? If so, is there a less invasive surgery, like a burring down type thing? I know I'm thinking ahead but just want to know what is possible. Maybe it will stay how it is and then his head will grow into it?..Ok, I'm rambling now.....
    Shelby & Renee-so true about all the worries. I'm normally pretty laid back with everything but I do find myself a little obsessive over his head. I wonder if anyone else would even notice the things that I see!!
    Beth
    mom to:
    Brad 08/95
    Alli 10/99
    Brent 05/05
    Zane 05/09--Metopic Cranio. Surgery June 21, 2010 at Joe DiMaggio Childrens Hosp.---S.FL
    http://www.carepages.com/carepages/ZaneThomas
    http://www.youtube.com/watch?v=JEMRvSjSaFM

  6. #6
    Registered User Janet's Avatar
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    Quote Originally Posted by QueenB View Post
    Thanks you guys.
    Janet--how long after surgery did Fiona start to get the "speedbump"? Did it keep growing? I guess that's my concern. Will it get any bigger? Is it something that will require surgery if it gets bigger? If so, is there a less invasive surgery, like a burring down type thing? I know I'm thinking ahead but just want to know what is possible. Maybe it will stay how it is and then his head will grow into it?..Ok, I'm rambling now.....
    She had a CT done at 9 months post op and it was not there, I think I started noticing it around 18 months post op. It maybe because she has bone resorption on the one side that it looks worse then it is. They are going to shave it down when they fix the rest of her forehead...it's not getting any bigger.
    PM me your email address and I'll send you the clear, big pic of her CT...you can totally see the extra bone.
    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


  7. #7
    QueenB's Avatar
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    Ok thanks Janet I'll send you a PM. We were told prior to surgery that he has "very think bone" in the forehead area. I just figure of course he did cause he had a big ol' lump on it!!! Not sure if that has anything to do with it.
    Beth
    mom to:
    Brad 08/95
    Alli 10/99
    Brent 05/05
    Zane 05/09--Metopic Cranio. Surgery June 21, 2010 at Joe DiMaggio Childrens Hosp.---S.FL
    http://www.carepages.com/carepages/ZaneThomas
    http://www.youtube.com/watch?v=JEMRvSjSaFM

  8. #8
    Mommy to my "Little Tonka" Carmen77's Avatar
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    Quote Originally Posted by Nay View Post
    I feel like Aaden's cranio has aged me 10 years or more Not a day goes by that I don't look and/or feel his head and wonder/worry about something.
    I have a sad feeling this is going to be never ending

    I'm sorry your worried, please let us know what you find out..
    Carmen
    Mother of 2 Girls, 4 Boys!
    Mateo Tolentino 10/21/09
    Dx - 07/08/10 Sagittal Synostosis Surgery Date: 08/23/10
    Dr Singh (CFS) Dr Shafron (NS)
    We are on the other side
    Lucas Jeremiah 11/25/10
    Dx - 03/31/11 Plagio/TorticollisHelmet Therapy 06/03/11
    Dx - 07/20/11 Mild Metopic W/Trig (wait and see)

  9. #9
    Corrected mild metopic Monkey'sMommy's Avatar
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    Can I ask if your kids had the procedure where the forehead bone was cut in half and the plates were flipped to the other sides, or the procedure where a piece of skull from the top of the head was used as the new forehead and then the existing forehead replaced that piece on the top of the head (still don't know what that is called, lol). Just wondering if your kids' new foreheads are one piece or two with the seam down the middle.
    Kristin, Chronic Lyme Disease
    Big Sister Bear 9/2005
    Little Brother Monkey 6/2009, Metopic Cranio dx at 12 mos, CVR/FOA at 20 mos.Drs. Martin and Castiglione, Connecticut Children's Medical Center (Autism Spectrum Disorder)
    Monkey's Blog: http://www.MetopicMonkey.blogspot.com

  10. #10
    Nay's Avatar
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    Quote Originally Posted by Monkey'sMommy View Post
    Can I ask if your kids had the procedure where the forehead bone was cut in half and the plates were flipped to the other sides, or the procedure where a piece of skull from the top of the head was used as the new forehead and then the existing forehead replaced that piece on the top of the head (still don't know what that is called, lol). Just wondering if your kids' new foreheads are one piece or two with the seam down the middle.
    They removed Aaden's forehead (ACH! HATE thinking about that!) shaved off the top part, shaped it & attached it right above his brow. So it's one piece.

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