Home » Posts tagged "chiari type 0"

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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I am Free!

I am finally released from bed rest and strict limitations on my activity. I can even drive. Today is a glorious day. I saw my doctor on Monday, and am healing slowly but surely. They are still concerned that my wound has not fully closed, and about the possibility of infection, but I am careful, and they will continue to monitor that. However, I have reached the glorious mark of six-weeks, and my doctor officially declared that I can start to resume normal activity and even drive my car as long as I don’t feel impaired. He’s even insisting that I taper off of medications. Hurray! Mostly I am a fan of being able to drive again. Driving is so linked to independence. I couldn’t go to the doctor without a ride, and I couldn’t do a lot of the things I normally do to help my family, like grocery...
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So I had Brain Surgery

I believe in miracles. I went to my endocrinologist, and he had a new Physicians Assistant. She had worked for a brilliant neurosurgeon who happens to practice in Las Vegas and treats a condition called Chiari Malformations. She looked at my history, and thought it would be worth a call to her old boss to see if my set of odd symptoms fit into this chiari pattern, which they do. Two days later, I was in front of the neurosurgeon. Two days after that I had the advanced and very technical MRI that showed significant pressure increases in my brain and a congenital brain defect called hypoplastic posterior fossa that put pressure on many parts of my brain and may have had a key role in my pituitary gland failing. At this point, the surgeon, Dr. Seiff, decided that I was a candidate for this surgery. His first question was...
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