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July 2013 Moms
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Wondering about surgery

Muffin379Muffin379 member
in July 2013 Moms
Hey ladies! It's been awhile since I've been on. Every time I try something comes up. Just went back to work full time last month and thank goodness the SO is off work right now or else I'd be going crazy from lack of sleep (I only get 4-5 hours right now broken up)
Ok here's my problem right now. We took our DS to the neurosurgeon yesterday to talk about the back of his head (flat) and the need for a helmet. While there I asked about the pointiness of his forehead. Well now that's a whole other issue. They diagnosed him with metopic craniosynostosis and have left it up to us on wether to do surgery or not since he has a moderate case. I'm currently looking for a second opinion but in the meantime have any July moms heard of this or had babies with craniosynostosis? I don't know what to do because it seems like there is great risk either way.
Thanks for reading and hope I can get back to bumpin soon!
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Re: Wondering about surgery

  • MrsAJohnsonToBeMrsAJohnsonToBe member
    I'm a lurker but, I know a case of this irl. A local baby that I donate milk to just had surgery for this, he was in the hospital a few days and his surgery was endoscopic which is the least invasive approach. He is recovering amazingly well and just got his helmet last week and surgery was about 3-4 weeks ago. Surgery was definitely needed in his case, one of his main sutures was fully fused. I definitely would get a second opinion, and I would have the procedure done only by a team who has done many of them. Good luck!
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  • [Deleted User][Deleted User] member
    I'm sorry :(  I'm unfamiliar with what you've posted but I do hope it's something that can be easily fixed if necessary. I'd get a second opinion and go from there.  Good luck to you all :)
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  • Muffin379Muffin379 member
    Thanks ladies I have been researching online all morning and have a call into their pediatrician for a second opinion. The first team of doctors are with the University of Chicago. It's just a scary situation to be in. Thanks for the reply it is truly appreciated.
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  • kt012885kt012885 member
    I don't have any advice but just wanted to say good luck.  I agree with the second opinion as well!

     

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  • KikiCohenKikiCohen member
    I'm so sorry you're dealing with this!  My son has mild plagiocephaly and has weekly PT to work on it.  He doesn't have craniosyntosis, but another child that our PT treats does.  Apparently this child's case was pretty severe and required him to wear a helmet 6 months to year post surgery.  He ended up with a pretty easy recovery (other than wearing the helmet).  

    It never hurts to seek a second opinion!
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  • mdlorenzmdlorenz member
    edited February 2014
    MrsAJohnsonToBe said:

    ... I definitely would get a second opinion, and I would have the procedure done only by a team who has done many of them. Good luck!

    This! Experience is key in surgery, especially a niche like pediatric neurosurgery. Hugs, mama. Your kiddo will be in good hands.

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  • EagleWifeEagleWife member
    No experience, but good luck. Hope you can get a second opinion that is helpful.
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  • Kitten80Kitten80 member
    No personal experience, but good luck. That is a great facility and there are many other good places to get another opinion. I hope all is resolved pretty easily.

     

     

     

     

     

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