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Help me figure out his MRI results

cooperme2871cooperme2871 member
in Special Needs
I'm waiting on the doctor to call and go over them with me, but in the meanwhile googling everything. :/ Can anyone help?

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Re: Help me figure out his MRI results

  • ToastieSimonsToastieSimons member
    Myelination is the white matter of the brain, it is developing until about 3 years old.  Delayed myelination is common for a child with delays especially in gross motor.  

    according the report he has a chiari malformation which is where the brain is compressed in the lower area, it's kind of right where the back of the neck meets the skull.  A lot of people have this and it never causes problems, and some people have it and have major issues.  If it's severe enough it can cause hydrocephalus by occluding the ability for CSF to flow back out of the brain.  

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • realisticdreamsrealisticdreams member
    He has a chiari 1 malformation and the myelination issue like toastie mentioned above. 
    The neurosurgeon who treats our daughters tethered cord is a very big chiari expert. 

    here is a FB support group for chiari 
    https://www.facebook.com/groups/200576390027503/?ref=br_tf

    here is our surgeons youtube link with indepth explanation of chiari, etc.
    You are lucky it was caught on MRI I know tons of people whose MRIs are read as normal but clearly have a malformation, Good luck. 
    https://www.youtube.com/watch?v=iNxIO_kYm0Y

    PS-What state are you in?

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • cooperme2871cooperme2871 member
    realisticdreams said:

    He has a chiari 1 malformation and the myelination issue like toastie mentioned above. 
    The neurosurgeon who treats our daughters tethered cord is a very big chiari expert. 

    here is a FB support group for chiari 
    https://www.facebook.com/groups/200576390027503/?ref=br_tf

    here is our surgeons youtube link with indepth explanation of chiari, etc.
    You are lucky it was caught on MRI I know tons of people whose MRIs are read as normal but clearly have a malformation, Good luck. 
    https://www.youtube.com/watch?v=iNxIO_kYm0Y

    PS-What state are you in?

    Thank you so much for the info. I'm in Kentucky near Cincinnati.
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