Letter: I live with Chiari Malformation; please support the 3rd annual Walk for Chiari

The Editor:

My name is Amanda Williamson, and I live and work in Winchester. I suffer from a rare condition called Chiari (KEE-ar-ee) Malformation. September is Chiari Malformation Awareness Month, so I thought that I would share my story with you. I was diagnosed with Arnold Chiari Malformation Type 1 in January 1998. I had an MRI to further investigate a pituitary adenoma that had shown up on a CT scan a couple weeks before, and that’s when the Chiari Malformation (CM) was found.

Letter writer Amanda Lennox hopes to raise awareness about Chiari Malformation, a condition from which the Winchester resident suffers. Zandbergen photo, Nation Valley News

Letter writer Amanda Lennox hopes to raise awareness about Chiari Malformation, a condition from which the Winchester resident suffers. Zandbergen photo, Nation Valley News

Like most that are diagnosed later in life, CM is usually found by mistake. CM is a condition in which brain tissue extends into the spinal canal. It occurs when part of the skull is too small so the brain is pushed downward (herniated) and cuts off the CSF (brain fluid) flow. The type of CM that I have is the most commonly diagnosed one and is a birth defect. The skull doesn’t form properly during gestation. I had no symptoms that I was aware of at that time so the diagnosis came as a big surprise. As I learned later on, some of the physical issues that I had growing up are related to CM. I remained relatively symptom-free for a few years, even after giving birth to my daughter naturally.

When I was in labour for my son, I had an epidural and my spinal fluid was punctured. That made this delivery a lot harder than the previous one, and that’s when I really started to have some symptoms of CM. I had daily headaches that would start after I coughed, sneezed or bent over; lots of dizziness, ringing in my ears and back and neck pain, so I was constantly in bed and unable to take care of my young children. After having these daily symptoms a while, I made an appointment with my neurosurgeon and that’s when we decided that it would probably benefit me to go ahead with the decompression surgery.

During the decompression surgery, they removed part of my skull at the base and the back part of the first vertebrae. It was the most painful thing I have ever gone through, but after I was put on some proper pain medication I was released to go home. My hospital stay was quite short (Tuesday to Friday),, but I was happy to be going home as this was during the SARS epidemic, so I was not allowed any visitors during my stay. It was two months of recovery without being allowed to have my children because they were so young at the time and I had lifting restrictions. My parents would bring them to visit but that was all that was allowed at that time.

Over the next year or so I felt great. I thought I was cured. Little did I know at that time that there is no cure. All my symptoms came back with new ones, and I didn’t understand why. So I went back to my neurosurgeon and that’s when I found out that this was the way life was going to be for me. I had more tests and continue to be monitored but I’m told that all I can do is manage my symptoms. Each day is different and comes with different and sometimes new challenges. There are days when I wake up and I feel great. It’s like I don’t have CM. I love and cherish these days. Then there are days that I wake up and am immediately sick to my stomach. These are the challenging days and I never know what they will hold, so that’s when I know I need to rest as much as I can.

I have an incredible support system with my family. On the days that I can hardly move and need help with everything including showering and getting dressed, my amazing husband steps in does everything that I need. The days that I come home from work and can’t walk, my children do errands and get me anything I need. All of them work as a team to make sure that I eat and have taken my all my medications on those really tough days. Then there’s our newly adopted St. Bernard, Goliath. He has been learning how to help me if no one is around. He picks things up off the floor for me, gets my shoes, and helps me keep my balance when I’m walking. Don’t get me wrong, I do have a lot of good days that I’m able to go around and no one would know that I have this condition, but I am not able to work full-time hours so I’m a part-time server at a local restaurant with limited hours. I have no choice but to work as CM is not recognised as a disability.

I am thankful for each day that I wake up because I know that the reality of this condition could be so much worse. There are many people, including children, who live with this condition and are a lot worse off than I am. People die every day from complications of CM; we call them Chiari Angels. There is still so little known about CM that we need to raise as much awareness as possible. More research needs to be done so that there may be a cure one day for all of us who suffer with this and fewer Chiari Angels. I will be participating in the 3rd Annual Walk for Chiari September 24th in Ottawa. If you would like to sponsor me for this walk, it would be greatly appreciated (email amanda7917@gmail.com or Facebook me). All donations go to the continued and greatly needed research for CM. Thank you for taking the time and allowing me to share my story with you.

Amanda Lennox


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