Home » Posts tagged "Chiari"

I Don’t Know How To Do This – My Son Needs Brain Surgery

I have written this post in my head for weeks. This is so much harder than I can describe, but I am going to try, because we need help, and people need to know what this is like. I need to be able to find others who have had this experience. I need other mom’s who have walked this path and can help me walk it. I need to know that you can survive this as a parent. That my heart won’t break, and that if the worst happens, we can endure. Maybe I can be that person for someone else in the future. Please follow the link below to donate to my son’s GoFundMe Account if you can! Click to Donate Now! My son, Ben, is sick. He has autism, ADHD, anxiety, depression and asthma since he was born. This was hard enough. This was enough to make me...
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Star Wars – The Last Jedi & Chiari for Christmas

  This week, Damon and Ben got to preview Star Wars – The Last Jedi, and they loved it. A few months ago, Ben was diagnosed with Arnold Chiari Malformation with a 4mm tonsillar dissension. This means his brain is being pushed into his spinal cord by 4mm.  At 5mm you are considered surgical by almost all neurosurgeons, especially if you are symptomatic. I have/had Chiari and had brain surgery or decompression surgery in 2013. Technically I had no tonsillar dissension because my Chiari was caused by a skull malformation called hypoplastic posterior fossa. It is genetic, and several family members have it, including my son. Surgery saved my life, but so much damage had been done, that I will never be healthy, and am considered to have traumatic brain injury from high pressure in my brain. My pituitary failed, and several nerves were damaged, including my vagus nerve, which...
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I’m Back – I Think – Life is Hard and then you Die.

My blog has been the target of multiple issues, attacks and locked down for months. I finally figured out how to use it again! Hurray! It is an outlet for me. I need to write. I need to do weird giveaways, review movies and books and generally engage in life in a different way. I try to keep this blog positive, but I am struggling to find the positive in my life or to be a positive type of person. I have also been really sick all year. If I don’t have bronchitis, it is something else. In May I had a routine (for me) procedure on my neck that resulted in severe migraines, and unbearable pain. I tried everything, my doctors tried everything, and I ended up in the hospital for four days. The first night I was admitted I fell in the bathroom. I hit my head and...
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