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Kathy’s Story (Chiari Malformation)

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 malformations (CM).

The doctor told me that the compression in the brain cuts off the spinal fluid flow, which often results in paralysis. The doctor gave me an analogy to help me understand me condition. In most people, the spinal fluid flows like a river; mine was more like a slow stream.

I really thought I was going to die. I thought to myself, ‘Okay, I have my life insurance in order. I’ve talked to my children and husband and told them how much I love them’. I really thought it was over for me.
I went to work on May 24 and had surgery the very next day. I don’t even remember leaving work and I only remember bits and pieces of my life especially from May through August. It’s like those months never happened.

Even some past memories no longer exist.

The brain surgery procedure I endured on May 25, 2010, was extremely scary. When it was over, I had 23 staples from the top of my head down to the top part of my spine as well as some of my skull removed. After the surgery, I lost my memory of everything that happened in the following three months. I don’t remember much of anything during that time…except for the pain. The pain was unbearable.

Even after the initial surgery, I still had complications and continued to seek help from medical experts. Blisters on the back of my neck indicated the healing process was not taking place as it should and I had to go back into the hospital several times with severe headaches. Only after undergoing another surgery, did I start on the long road to recovery.

For a long time after my surgery, I continued to suffer from numbness and one of my knees remained weak. The doctor told me it would take at least 18 months to regain some strength and motor skills. When I first returned to work, I would be exhausted by the end of the day. As the weeks passed, I slowly built up my endurance level to where I could make it to Thursday or Friday before feeling exhausted.

There are still many things I cannot do. I can’t get up or sit down quickly, or open and close my eyes quickly. I have trouble opening cans or anything that requires strength, but my headaches are much better. I don’t have excruciating headaches for 30 days straight like I had before.

Doctor advised me to take a Pilates class because it stretches the spine and the muscles surrounding the spine. Although I am unable to lift weights more than seven pounds, I walk as much as I can and I eagerly participate in my Pilates class. Pilates class was been the only exercise class that I can take due to my condition, but it has been a huge help to me.

Just when everything seemed to be a little more normal, my life changed again on April 1, 2011. I was involved in an auto accident; someone came slamming into me from behind. This accident has put pressure on my brain stem and pushed parts of my spine together. This has set me back for several months and possible years. After a year, I still continue to struggle and seek medical assistance but now I am starting to slowly recovery. The doctor says I will fight with this the rest of my life and will have to watch all activities. They have also advised me to stay away from stairs, which is hard to do when I have a mid-entry home. So we are selling our home and moving to one with fewer steps. I still have headaches, severe back and neck pain as well as the pain/pressure that is in my eyes and head. Things are starting to get better but I honestly feel that the way I am today is the way I will live for the rest of my life. Few days are great, some days are good and the others are challenging.

I owe so much to my family for helping me through this. My husband was like a rock, providing stability and reassurance. I hope that by sharing my ordeal, I can have an impact on others. Don’t ignore symptoms. Always trust your instincts and seek the advice of your doctor.

I credit my primary care doctor with guiding me to the necessary tests and specialists who eventually diagnosed my condition correctly.
Awareness of any illness is so important, especially to a woman since a lot of doctors have a tendency to blame the female anatomy. Every day is a challenge, but I will fight the battle and win the war.

Kathy
West Virginia
Submitted 5-27-2012

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.

This story 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.

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4 comments

  1. Proud call you ‘Chiari Family” Fight like a girl.. I’d say you FIGHT LIKE A WINNER. You are one strong person Kathy! God Bless

  2. Kathy, you are living proof that God has a plan for all of us. To go thru all that you have, and still have a positive outlook is AMAZING. I can’t imagine having brain surgery, but to have multiple brain surgeries, WOW! I know you don’t know it, but you inspire me. When I complain about a headache, I think about you, and then I don’t hurt as bad. When I get down, I think that we aren’t guaranteed tomorrow. I’m proud to call you my SISTER. Keep fighting Kathy!!!

  3. We love you, Kathy!!!

  4. Kathy, will you please post update to your story! It’s now 2014 and we’re wondering how are you doing!
    All the best!

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