My Battle with Chiari Malformation
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AMY
“Run for CHIARI AWARNESS for PHYSICIANS“
My best friend and soul mate Amy was diagnosed on November 14, 2014 with Chiari Malformation Type 1. She has a 9mm herniation of her cerebellum tonsils. ...
Chiari Malformation (Arnold-Chiari) - is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine causing many symptoms.
After 4 failed visits to different ER's and other doctors, we finally got a referral for an MRI. Amy was then diagnosed. In the past week Amy has had four (4) MRI and will be seen by the best neurosurgeons in the country for Chiari surgery at the end of February. With no insurance, and the bills sky rocketing I am asking for some relief. Please support Amy benefit, but also help in the education of physicians. It sounds sad, but Amy was lucky it only took her a couple of months and under 10 doctors to get diagnosed. Many Chiarians went years and suffered the worst fucking pain you could ever imagine.
During medical school doctors are given only 20 minutes of education for Chiari
1 out of 10 doctors know about Chiari.
Please help us fight for Chiari awareness and help Amy out in her battle.
Thanks in advance and MUCH LOVE & RESPECT,
Alan
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A NOTE FROM AMY:
GIVING YOU AN INSIGHT TO MY EVERY DAY
After a day of pain into a night with one of my worst headaches, neck aches and pinched nerve pain shooting down my arms to my hands I have decided to add what my days consist of. Each day is a different day for me. I never know which symptoms or pain i am going to experience. Lets start with my every day . . . i have knots and tight muscles in my back and shoulders that are so painful accompanied with neck pain. What makes each day different is all the other symptoms I experience, such as have a hard time walking and or balancing, think of things to say but have a hard time speaking and slur words, double eye vision, rapid eye movement and long eye blinks, headaches that are more than 5 time the pain of a migraine, memory loss, head rush/dizziness, nausea, no appetite for days, hard time swallowing, stiff body, ear aches, just to name a few. Every day I have a minimum of 4 symptoms. I have good days and bad days. Good days consist of NO HEADACHES and my brain is working with my body. Okay days consist of slight headache and brain and body dont want to communicated and work together. My bad days consist of a headache that you could never imagine. The pain so intense that you would rather die then live any longer with the pain. Thanks God for my loving husband who has fought for me and did not give up on me when the doctors kept telling him i was depresses and needed mental help. He knew something was wrong and that i didnt need mental help. He persisted to find a doctor who would refer me to get a MRI with contrast. With his persistance, i got the MRI with contrast and they realized i have chiari. My battle is still not over. Most doctors do not know anything about my disorder and either push me off to another doctor or prescribe medicines that could do more harm than good.
Well now i have giving you a little insight of my every day that i am alive until i get my brain surgery.
Love to all my friends and family,
Amy
“Run for CHIARI AWARNESS for PHYSICIANS“
My best friend and soul mate Amy was diagnosed on November 14, 2014 with Chiari Malformation Type 1. She has a 9mm herniation of her cerebellum tonsils. ...
Chiari Malformation (Arnold-Chiari) - is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine causing many symptoms.
After 4 failed visits to different ER's and other doctors, we finally got a referral for an MRI. Amy was then diagnosed. In the past week Amy has had four (4) MRI and will be seen by the best neurosurgeons in the country for Chiari surgery at the end of February. With no insurance, and the bills sky rocketing I am asking for some relief. Please support Amy benefit, but also help in the education of physicians. It sounds sad, but Amy was lucky it only took her a couple of months and under 10 doctors to get diagnosed. Many Chiarians went years and suffered the worst fucking pain you could ever imagine.
During medical school doctors are given only 20 minutes of education for Chiari
1 out of 10 doctors know about Chiari.
Please help us fight for Chiari awareness and help Amy out in her battle.
Thanks in advance and MUCH LOVE & RESPECT,
Alan
--------------------------------
A NOTE FROM AMY:
GIVING YOU AN INSIGHT TO MY EVERY DAY
After a day of pain into a night with one of my worst headaches, neck aches and pinched nerve pain shooting down my arms to my hands I have decided to add what my days consist of. Each day is a different day for me. I never know which symptoms or pain i am going to experience. Lets start with my every day . . . i have knots and tight muscles in my back and shoulders that are so painful accompanied with neck pain. What makes each day different is all the other symptoms I experience, such as have a hard time walking and or balancing, think of things to say but have a hard time speaking and slur words, double eye vision, rapid eye movement and long eye blinks, headaches that are more than 5 time the pain of a migraine, memory loss, head rush/dizziness, nausea, no appetite for days, hard time swallowing, stiff body, ear aches, just to name a few. Every day I have a minimum of 4 symptoms. I have good days and bad days. Good days consist of NO HEADACHES and my brain is working with my body. Okay days consist of slight headache and brain and body dont want to communicated and work together. My bad days consist of a headache that you could never imagine. The pain so intense that you would rather die then live any longer with the pain. Thanks God for my loving husband who has fought for me and did not give up on me when the doctors kept telling him i was depresses and needed mental help. He knew something was wrong and that i didnt need mental help. He persisted to find a doctor who would refer me to get a MRI with contrast. With his persistance, i got the MRI with contrast and they realized i have chiari. My battle is still not over. Most doctors do not know anything about my disorder and either push me off to another doctor or prescribe medicines that could do more harm than good.
Well now i have giving you a little insight of my every day that i am alive until i get my brain surgery.
Love to all my friends and family,
Amy
Organizer
SubZero Cold
Organizer
Eustis, FL