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Thread: Mixed results at 9 months post surgery

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    Kate Carey-Trull is on a distinguished road Kate Carey-Trull's Avatar
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    Default Mixed results at 9 months post surgery

    Just got back from Cam's 9-month post surgery check up with mixed results and mixed feelings. The back of his head looks great and the sides are continuing to pop out and change, but now there are concerns about the front.
    I'll put some photos in later, and Cam is grabbing at me, so I will write more later, but his forehead is still bossy and the words second surgery were brought up. Nothing definite, we are going to wait and see for at least three more months before any further decision is discussed, but oh this just kills me!! I don't know how you ladies who have gone through two surgeries (or more for other issues as well) do it. Just thinking about having to put him thru that again....
    So I am feeling sad and worried, which sucks. He turned 1 yesterday and part of me was hoping for better news today, altho I have my concerns as well.
    Kate
    Mom of Lexi, 10/9/03, no cranio
    and Cameron, 1/3/09, had pi procedure for sagittal cranio April 21, 2009 at CT Childrens Medical Center, Dr. Martin

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    Sophia's_mom is on a distinguished road Sophia's_mom's Avatar
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    I'm so sorry you are worried! Those stinkin' bossy foreheads are hard to fix. I know our PS was still concerned about Sophie's when her helmet came off a few weeks ago, he said he still wants to keep a close eye on it. They still have a lot of growing to do, so don't worry too much right now (yeah right, I know).
    Tessa - mom to Sophie and Ben
    Little Miss Sophie - 12/22/08 - Sagittal - Endo surgery 4/16/09 @ St. Louis Childrens
    Baby Boy Ben - 12/14/11 - No Cranio!

  3. #3
    is happy happy happy! Wyatt's Mom has a spectacular aura about Wyatt's Mom has a spectacular aura about Wyatt's Mom's Avatar
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    I'm sorry you got mixed results and are worried about a 2nd surgery. There is another sagital boy on here that had the same procedure for sagital and I believe they are watching his forhead as well.
    I sure hope a 2nd surgery doesn't have to happen!
    Sarah
    Proud mommy of:
    Logan - Jan '06 No Cranio
    Wyatt - April '07 Metopic & Sagittal - Surgery at BC Children's Hospital Feb 27th, 2008
    Cooper - Sept '09 currently have some concerns with his metopic suture, we've seen a neurosurgeon but are waiting and watching



    View Wyatt's Story: http://www.craniokids.org/support/showthread.php?t=2607

  4. #4
    Registered User Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet's Avatar
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    I hope that you get good news next time you go.
    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


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    joshmummy joshmummy's Avatar
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    ((((Hugs)))) chick, i know just how your feeling. Josh had a cvr in oct 2007 when he was 6 months old for sagittal. straight after his surgery his temples were so narrow and pinched. when we questioned this with the surgeons they just kept telling us it was normal!!!! in april 2009 i eventually posted pics here and the girls straight away knew what was happening (metopic, trigon). so i emailed dr fearon the photos and he said the same! we were and still are devestated, we pushed our surgeons who eventually listened and scanned him. his old ct scan showed the sagittal completely fused and the metopic partly. so they think it zipped up straight after his first surgery. we are now waiting for a2nd surgery date which should be anytime this month. we are struggling so much at the minute trying to get our heads round it all. Josh will be 3 yrs in may, a difficult age to put him thru another surgery. if u have any worries about your little cuties headshape changing, then pus, push, push. our mummy instincts are always right! im a true believer in that. xx long story but if you go onto my old profile joshuasmummy i have pics in the albums.
    Heidi-wife to Chris,
    mummy to
    Amara 12yrs- no cranio
    Romany 8 yrs- no cranio
    Joshua 4 yrs- sagittal-surgery at Birminghams childrens hospital in 2007
    2nd opinion with Oxford feb 2011, recommended no surgery but wait and see

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    Monica is just starting out Monica's Avatar
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    You poor thing. That's not what I would want to hear at my checkup and I know you must feel like you're starting all over again. Hopefully things will change and you won't have to go through all that again!
    Monica and Tony
    Charlie - 8/13/99
    Lucy - 2/27/02
    Alexander - 4/22/05
    Florence - 11/26/07 (metopic - surgery on April 9, 2008)
    www.metopicflorence.blogspot.com

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    Amy K will become famous soon enough
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    First I just wanna say wow he is SO cute!! As for the bossy forehead....I totally get your concern, I've been there! But as Cameron is only 9 months post-op, I would give him lots of time. My Cam is right around the corner from 2 yrs post-op and he still has a mildly bossy forehead...although he is narrow towards the front too, if that even makes sense. Our problem is an ever-elongating head! uggh. But the bossiness has gotten better over time, and I hope it will for you guys too!
    Hang in there.
    Mom to Camden Sagittal Cranio Kid
    Posterior CVR- Fearon/Swift
    Anterior CVR/FOA- Genecov/Weprin


  8. #8
    Kate Carey-Trull is on a distinguished road Kate Carey-Trull's Avatar
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    Thanks ladies for your replies. I actually asked about the metopic, but our surgeon isn't concerned about other sutures, just that the forehead is still prominent. Hopefully he will grow into it further. There are some pics in my album from this summer where you can see it, I will try and download some more later from this fall. Finger crossed it won't get any worse!
    Kate
    Mom of Lexi, 10/9/03, no cranio
    and Cameron, 1/3/09, had pi procedure for sagittal cranio April 21, 2009 at CT Childrens Medical Center, Dr. Martin

  9. #9
    Roll On Rollercoaster!Roll On! grayridge is just starting out grayridge's Avatar
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    I'm so sorry your appointment didnt bring you better information. Hopefully things will turn out okay and you can avoid another surgery.
    Darcy
    Mommy of
    Jesse - 21 years old ,Cody - 19 years old - CKD Right Nephrectomy , Chelsea - 17 years old ,and last but not least....Jimmy 2 years old - mild Metopic - watching and waiting; and severe sleep apnea, Asthma, and lesions on right frontal lobe and left occipital lobe from suspected shaken baby syndrome, and cyst in mastoid sinus.

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    joshmummy joshmummy's Avatar
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    oh thats good then that they are not worried about any other sutures. I hope i didnt frighten you. fingers crossed it will sort out with time, which as they sayi is the best healer! xxx
    Heidi-wife to Chris,
    mummy to
    Amara 12yrs- no cranio
    Romany 8 yrs- no cranio
    Joshua 4 yrs- sagittal-surgery at Birminghams childrens hospital in 2007
    2nd opinion with Oxford feb 2011, recommended no surgery but wait and see

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