Just wanted to share this to bring awareness to the invisible condition that afflicts 6 members of my family including myself. Even though one cant see the monster called Chiari Malformation Type 1, it isnt hard to visualize what it is doing to this beautiful little girl. Unfortunately, similar scenarios play themselves out at my house as well- CM I is thought to be present in 1 of every 1000 births yet very few people including those in the medical community know much about it. More research needs to be done- the only viable treatment option is surgery involving removal of bone form the skull and spine as well as opening of the dura mater( the covering of the brain and spine), resection and cauterization of the portion of the brain that has herniated out of the skull and a patch placed to hopefully create room for cerebrospinal fluid to flow. Unfortunately it is not a cure and there are only a small number of doctors in the US who do this really well and who understand the suffering of CM patients- I am sharing because no ones baby should have to feel this way and I pray that a voice for CM and related conditions can be heard in the public arena.
Posted on: Wed, 22 Oct 2014 14:07:09 +0000
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