MAJOR Chiari Malformation Advancement!!

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This topic contains 14 replies, has 13 voices, and was last updated by Profile photo of KYKAT 12 23 KYKAT 12 23 4 years, 9 months ago.

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    Profile photo of mollycat71

    This is so EXCITING, I could pop! For those of you who don’t know I have a rare disorder called Chiari malformation. My cerebellum “herniated” into my spinal column and I have had two major brain surgeries amongst other problems. There has been little advancement in the knowledge of this disease. I found this article tonight about a new surgery in which surgeons repair the “hindbrain herniation” in the uterus before the baby is born!” What a fantastic idea, fix the problem before the baby is born and help the baby from suffering horrible symptoms like I have had!

    Profile photo of AZDEBRA 5/27 & crew
    AZDEBRA 5/27 & crew


    Profile photo of ladysky61

    oh cool. I did not know this disorder was related to Spina bifada. From what I’ve read and seen on documentaries, babies who have this surgery seem to have much better quality of life and fewer complications. I hope it becomes standard practice in the future (covered by insurance, more surgeons, etc)

    Profile photo of paulajeanne

    way cool!

    Profile photo of

    Very, very encouraging, MC. Maybe someday Chiari Malformation will be one of those “long time ago” disorders. Also interesting at the end of the article was this:

    “The exact cause of spina bifida is unknown, but experts agree women of childbearing age can reduce the risk of their child getting this disease by getting enough folic acid (at least 400 micrograms) from leafy green vegetables, fruits, beans or supplements and vitamin B12 (2.8 micrograms), found in meat and eggs.”

    Profile photo of mollycat71

    Yes its considered a “high level” type of spina bifida. Or a “complete” spina bifida. It develops as the neural tube is developing. In SB the tube generally doesn’t close entirely. In CM it closes but not correctly. I think they are onto something!!!

    Profile photo of duchessmom

    Oh I’m so happy for you, to hear about this. I really hope they can start doing this it would be such an advancment and would be great for other babies not to deal with this. I’m sorry that you do MC, you’re such a trooper and great person. :)

    Profile photo of nawlins-catmom
    nawlins catmom

    MC, What fantastic news for the future!

    Profile photo of cricketsmama

    That is wonderful news! I am so happy for the babies who are diagnosed with CM and can be helped in utero but sorry MC that you have to suffer with it.


    That IS wonderful news, MC! I’m so happy to see this advancement. :-)


    Great news, MC. I hope many more discoveries are made to improve the lives of those who have CM. You are one of my heroes!

    Profile photo of mollycat71


    Profile photo of Jeankit

    Wow…amazing news with encouraging results.

    Profile photo of katthays

    That is such great news, MC!!!!

    Profile photo of KYKAT 12 23
    KYKAT 12 23

    Awesome! The more doctor’s can correct before birth the healthier those affected will be!

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