Chiari Malformation Stories

Ashley’s Daughter’s Fight Like a Girl Story (Chiari Malformation)

May
31
2013
Purple Ribbon

This is actually about my 8 year old daughter. Two and half years ago we found out that she had chiari malformation, along with other health problem's. On June 28, 2010, she had decompression surgery. Since then, we have had quite the struggle dealing with everything that has come from the surgery. She will have a long life ahead of her, but she is a very strong girl. She definitely fights like a girl and I love her very much. She is my hero. Ashley Indiana Submitted 10-10-2012 The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice. … [Read more...]

Lori’s Fight Like A Girl Story (Chiari Malformation type 1)

May
24
2013
Lori's Story (Chiari Malformation type 1)LR

I am a wife, mother, girl-scout leader, college student and I work part time. Shortly after my 29th birthday, I began having severe headaches. I have always had a high tolerance for pain. After gallbladder surgery and both of my C-sections, I rarely had to take the pain medicine. The pain got so bad that I was taking 800mg Ibuprofen like candy. The pain medications only slightly helped. On my way to class my chest began to hurt, and I became worried. My mom decided to check my blood pressure and it was unusually high. I had to take care of myself because my kids depended on me. I visited the Taylorville emergency room, where I was treated like an addict and told that it was all anxiety to visit Taylorville Mental Health. I know my body, and I knew that this was not the case. I tried to just ignore the symptoms, but my blood pressure remained high. I visited my primary care physician and was then put on blood pressure medicine. We all agreed that my weight could have triggered the blood … [Read more...]

Kaylie’s Fight Like A Girl Story, As Told By Her Mom, Amber (Chiari 1 Malformation)

May
17
2013
Hayley's story (Chiari 1 Malformation) LR

Hi, my name is Amber Barnes. My husband, Benjamin Barnes (Moore Police Officer), and I have a 5 year old daughter named Kaylie. My daughter was diagnosed with Chiari 1 Malformation. Short story of it all: her brain has run out of room, so it is now protruding down into her spinal column. This condition causes her to have severe headaches, eye & ear pain, and a whole list of other symptoms. There is no cure for Chiari, except to have Posterior Fossa Decompression surgery.. (brain surgery)… basically they remove a small part of the back of her skull to make room for the brain. This sometimes helps with symptoms… but each patient is different, and she could need another surgery in the future. She is scheduled to have surgery July 27th in New York by a neurosurgeon that specializes in this rare condition. His name is Dr. Harold Rekate of The Chiari Institute. If you have any questions… you can check out her website at www.kaylieschiari.com I was actually coming to the … [Read more...]

Kathy’s Fight Like A Girl Story (Chiari Malformations)

May
10
2013
Kathy's Story (CM)

I was a healthy person who, like many, took life for granted. Not anymore. Two years ago, I was confronted with a life-and-death decision. I agreed to undergo brain surgery in the hope it would stop the excruciating headaches I was suffering with every day. I'm sharing my story in the hope of encouraging others to see their primary care doctor when they experience symptoms that cause concern. My doctor helped save my life. When the doctor told me that my severe headaches, frequent dizziness, and numbness in my hands and feet were caused by a rare condition that could paralyze me for the rest of my life, I was stunned. Then he told me immediate surgery was required. It was my only option. I could not believe what I was hearing. I looked at the doctor in disbelief and slowly got the words out: 'But we are talking about my brain'. After enduring a battery of tests and being studied by four different neurologists, I was finally given a diagnosis. I was suffering from chiari … [Read more...]

Marcella’s Fight Like a Girl Story (Chiari Malformation)

May
01
2013
Marcella's Story (Chiari) LR

In 1996, I was in a car crash, I walked away with whiplash, or so I thought. After a year, my symptoms were still there. I went to see my general practitioner. He said these can go on for a long time. When the symptoms got worse, I asked to see someone private through my husband's work. I had a scan done. The doc I saw said he would send me to a neurologist. WOW, what came next was a BIG shock, to say the least! The feelings of pins and needles in my hands, legs, strange headaches, double vision, and loads of other stuff when I was a kid would be explained. The doc said he knew straight away when he was sent the scans. What he showed me and my husband, was a pic of my BRAIN SLIPPING INTO MY SPINE. It is called chiari malformation. It felt like my world had just fallen apart. He did some more tests and discussed what he was going to do. My husband asked how urgent action would need to be taken. The doc replied it should have been done when I was younger. But as it stands now, I … [Read more...]

Toni’s Fight Like a Girl Story (Chiari Malformation)

Mar
21
2012
Toni's Story (Chiari Malformation) LR

For me, the headaches started in my pre-teen years. They were attributed to stress, hormones, sinuses, and any other everyday cause you can imagine. I frequently felt tired for no reason and pain seemed to affect me in different ways than others my age. Over the years, I was put on many different medications to try and quell the pain. Though some would dull the pain a little, nothing ever helped with the stabbing pains I experienced in the back of my head when coughing or laughing. In 2008, on my honeymoon, I began experiencing neck pain, which persisted much longer than previous bouts. I was given shots of toridol and muscle relaxants. A couple of months down the road, I developed bronchitis. A month later, the cough was still lingering and the pain in my head was excruciating. I ended up visiting the doctor to try and get the pain under control. In the meantime, other symptoms began to emerge. I had electric-shock-type pains shooting down my arms, was frequently dizzy for no … [Read more...]