So I don’t tell people. Why? Lots of reasons I guess. I found early on that Doctors, nurses, friends and family reacted as if I had something contagious. Or worse. Made up. Dreamt up. An excuse. Sure it took 7 years of Doctors and emergency rooms with seizures, and migraines and the oddest possible symptoms on the planet to finally figure out what was wrong. No Doctor did. In May 2009, I was told by a neurologist to go home, sit on my couch and wait. Wait to hear from a Brain surgeon, or wait for the next round of symptoms. They didn’t even tell me the name. They simply said, your brain has herniated. It’s been years since that day, and it’s been miles emotionally. I found out who can and can’t deal with this, who it pains to be informed so much that I tell them it’s all better, and who are just simply put, total fucking idiots who you couldn’t educate with a brain transplant.
I’ve met the ” best Doctors and Surgeons ” in our area ( that includes the states on both sides of us) and Most can’t even pronounce Chiari. What’s even more sad as that NONE of them seem to have ever read. picked up, or even googled the word, some have, right in front of me. It used to scare me to watch the horror on their oh so smart faces as their eyes scanned down the googled page in front of them and they realized that this talking ( sometimes stuttering) walking ( sometimes falling ) human in front of them is indeed what they are reading on the internet. Now it’s either funny or my test, if I am sent to a gastro and bring up the Chairi and they say something as stupid as, ” your brain has nothing to do with this”. I know that basically that doctor is worth their weight in dog hair. Because after several years of personal research, and sending my medical records and results both around this country and to others where they actually STUDY Chiari, I found out from one of the smartest Brain Surgeons on the planet. That the BRAIN CONTROLS EVERYTHING. Sounds simple I know, but try telling some shitard with a God Complex that it’s quite possible they may NOT know EVERYTHING. It’s best to just smile and then add them to the list of people you will NEVER entrust your body and life to again.
Sadly I personally know of so many who have been told it’s nothing, and passed. Even the “procedures” are not always a cure, and yes they are drastic, no it’s not pretty, and yes it’s very risky. If you want to know more google “zipperheads”. Even after this almost everyone I know still suffers with the pain and the symptoms that just can’t be fixed. But nothing breaks your heart like hearing about the kids.
I’m not active in any Chiari Community. From what I can tell there are 3 groups, warriors, survivors and angels. You can pretty much figure out who is who and why. In addition to this absolutely wonderful Diagnosis there is an entire CIRCUS TRAIN of freaking co- Diagnosis that go with this that basically will explain everything in your life from dropping an egg to the awesome ability to always be the cheerleading captain because you can do the splits with no issue.
Here is my big ass oh so sexy brain – prepare to be stunned and impressed.
So that’s the story that’s the deal, no more hiding it. There are online support groups out there for friends and families. In the larger cities there are actual groups, then there are organized walks for awareness and research and fundraiser and all that stuff that really helps so many. So if you are up for it, and feel like taking a stroll. September is Chiari Awareness Month. Walk for someone who can’t anymore, or wont one day. There are walks everywhere this month, CA, PA, FL, NY, TN, and a ton of other places. Check it out if you are up to it. I’m not an expert, I’m not a guru, I’m not a leader. In fact very few in the internet world even know I have it. Few in my real world know. Because it seems as if people treat me different, or expect less. Except those that roll there eyes, or sigh, or cringe or simply walk away. So for self preservation I don’t bring it up, especially to the people who think they already know everything, and honestly there’s a shitton of those kind of people out there. But now you know. Consider yourself WAY more educated than 90% Doctors and 75% of Surgeons. It didn’t cost you a thing and took way less than 8 years. You are welcome.