I’m on my 2nd neurologist and 1st neurosurgeon…when I was told I had Chiari, I knew I would have a long road a head of me…
I was in a car accident June 3, 2012, had my 1st MRI on the 17th, diagnoised on the 21st…
I’ve been to 2 neurologist and 1 nurosurgeon so far. I am currently going to UNC in NC. I drove 1 1/2 hours for a 15 mins consultation. He came in shook my hand as he introduced himself and proceeded to tell me I have always had chiari, I have a 10mm herniation, post concussive syndrome and possible tbi. He scheduled me for a cine flow and complete neck & spine MRI. I didn’t get one word in and he walked out. I spent hours researching and asked for him personally. Prior to my accident, the only issue I had was hypertension.
Leaves me wondering is it possible to get the herniation from a car accident and if its hereditary be made worse?
By the time all is said and done I will be an expert in all things chiari / brain related.
I am not afraid of a challenge and I am my biggest advocated.
Some back ground on me. I dropped out of med school to get married and become a chef. My 2nd husband was severely wounded in 2005 and has TBI. I have been his advocate since and became a patient advocate here in NC. I am extremely proud of this. I have been to washington DC , spoken to all branches of the military for patient rights and so on. I can not even begin to express my outrage , my heartache, frustration, anger and so on for the treatment of these brave men and woman.
Now here I am, here we are. Fighting our own battles in a system that doesn’t understand our medical condition. I don’t know about all of you but I am feeling lost in this maze. I feel like I am bumping along until I find the right specialist.
I personally believe your mind is one of your most powerful tools. Having a great support group helps conquer more then the chiari.
This is a warm, loving, healing place.
I have to say before this I learned about the human spirit, how big the human heart is and how much a person can endure. Now I have learned all these things about myself… I have been blessed to have some really amazing people in my life. My circle has been doublly blessed by all of you.
This message really resonated with me. I completely understand you. I was 13 when I first came down with severe chronic head pain and chronic fatigue, etc. It wasn't caused by a car accident or anything noticeable - it just "suddenly" happened. My poor Mom raised us to be straight-A students (by herself) and go through life with good morals. She's also very sick. I just can't imagine the disappointment of working so hard on a child to have this happen. 14 years later and I am not any better - only worse.
I've recently read another comment about the outrage towards the government over how our military men have been treated. It reminds me of the stories about the soldiers returning from Vietnam. The crap needs to stop repeating itself. These are lives we are talking about. There are some great things about America, but our politicians are money-hungry, greedy, and very evil individuals. NO one should be left behind.
And what you said about bumping from specialist to specialist - this also happens to me all of the time. My PCP just recently decided to abandon all of her patients because she "felt" like managing a weight loss center. Now I have referrals that I need and can't get. I need a new PCP, which will take a month to get into.
This place is great I have to say. I don't even know if I have Chiari or not, but I have had several Chiari patients tell me that they definitely see "something" in my MRI's. So I am going to see a Neurologist about it sometime soon. And I have had every thread responded to - I wasn't expecting it to be this active and supportive.
Anyway, good post and good night (finally)! :)