A Waupun woman spent years questioning the cause of her migraines and tension headaches before discovering that she required brain surgery for Chiari 1 malformation.
Jennifer Edmundson-Zickert began experiencing the headaches following the birth of her first son in 2009.
“I expected it was coming from all the new stress in life,” Edmundson-Zickert said.
The headaches got worse when she had her second son in 2012.
“I went back to a doctor and he diagnosed me with fibromyalgia,” Edmundson-Zickert said. “I went back again shortly after because I wouldn’t settle for that very vague answer to my pains.”
It wasn’t until April 2014 that she found out she had Chiari 1 malformation.
Chiari malformation is a condition in which brain tissue extends into the spinal canal. It is classified traditionally in four types with Chiari 1 Malformation being the least severe and most common type.
An MRI is used to diagnose it.
Edmundson-Zickert was visiting with her primary doctor when she told him that the headaches had become more problematic while seeing a chiropractor.
“I remember a certain time during a visit when he corrected my neck, and I felt a surge of tingles shoot down the left side of my body,” Edmundson-Zickert said. “He told me that was the first time he heard that and continued correcting the other side. So upon visiting my doctor for dizziness, blurred vision, off balanced, handwriting issues, ringing in the ears and many more symptoms he asked if I ever had an MRI done and I said no.”
Edmundson-Zickert’s primary doctor ordered an MRI and she quickly got a call from a nurse with the results.
“I took my 10 minute break as I did every day, checked my voicemail and panic set in because I knew it was too soon to get good news,” Edmundson-Zickert said. “I called her back and fear built quickly when she began going over my results and she tried pronouncing my condition (it is pronounced key-AR-ee) . She told me to hold on as she researched the condition with me on the phone. When she said I had a herniation in my brain I nearly fell over with fear.”
“She said the worst case scenario was brain surgery and I was terrified,” Edmundson-Zickert said. “I remember calling my mom and could barely breath, then mom began crying and my sister who worked with me at the time came out for her break and she seen my face and just knew the MRI came back with something on it.
“None of us knew anything about Chiari and clearly the nurse didn’t either. I honestly thought I would die during surgery. I didn’t want to do anything like that. Either way the nurse said they already scheduled a neurologist appointment to discuss the situation and gave me the name and time.”
Edmundson-Zickert saw a specialist at St. Mary’s Hospital in Madison.
“I went to see the doctor after doing my own research and building my fear even more,” Edmundson-Zickert said. “The specialist assured me that they have heard of this condition and have helped many live a normal life with this condition. They went over my scans and showed me the herniation which was significantly large at 19 mm.”
Edmundson-Zickert said that they went over the number of symptoms she was having and the list was in the 100s.
“They all were not every day but off and on,” Edmundson-Zickert said. “Some were everyday; ringing in the ears, lack of balance, vision issues, poor handwriting, and month-long headaches.
The staff at St. Mary’s asked Edmundson-Zickert if she wanted to wait to see if other sources of care would help and they recommended she speak with a surgeon to learn all the options that are available.
“I call him ‘Bill Nye the Science Guy’ because he looked so much like Bill,” Edmundson-Zickert said. “He was smart and reassuring that I was a good candidate for surgery due to the fact that my symptoms were so persistent.”
That month she contemplated cancelling the surgery but also weighed the pros and cons.
“So on May 5, 2014, I went in to have decompression surgery done,” Edmundson-Zickert said.
The surgical team working cut into Edmundson-Zickert’s skull and shaved the bottom portion of the skull, known as the foramen magnum.
“They widened it to create more space and also shaved a portion of my C1 vertebrae. This would allow the herniation to have more room, so it would not cause pressure in the head or face like I’d been experiencing,” Edmundson-Zickert said. “Coming out of surgery I remember how much my head felt like cement was in it. It was so heavy and hurt so bad.”
Three months later, Edmundson-Zickert was getting stronger and her scar slowly faded.
“My muscles began working as they should and the pain began to disappear,” Edmundson-Zickert said. “My headaches started going away and things were looking good. Now I’m 1 year and 6 months out and I still have shaking in my hands, twitching in my neck muscles, headaches every morning until my body is no longer stiff. I still have to do therapy on my neck and I will always have headaches. They just are not as bad as they were.
“I have periods of stress in my life that lays me up in bed for a few days. Otherwise I live a normal life but with the fear of a flare up of my worst feared symptoms. But I live with Chiari and only people with Chiari will understand. You cannot see it, but we can feel it. Not everyone’s battles are on the surface. How do I feel about Chiari? Well I hate it. I hate it because I cannot make anyone understand my battles, because it changed my once steady hand into a shaking unrecognizable penmanship, I no longer can paint like I used to, and I slur my once clear words.”
There are days she curses Chiari, but she also she knows it could be worse.
“Without a great support system I would cry a lot more or feel sorry for myself,” Edmundson-Zickert said. “But instead I suck it up and walk as straight as I can, write as clear as I can, talk as steady as possible and do the best I can. It can change the inside of my body and cause exterior symptoms but it cannot change the person I am, the drive that I have and the passion to help others.”
Edmundson-Zickert is originally from Beaver Dam and is now a 911 dispatcher for Fond du Lac County. She said she also wants to help others to understand about Chiari.
“A lot of people with Chiari are first diagnosed with fibromyalgia and many never know they have Chiari,” Edmundson-Zickert said. “I want others to know if you have continued headaches do yourself a favor and ask a doctor about this condition. It also runs in the family. And there are more serious types of Chiari. Types that do take lives. If you have Chiari make sure you meet others with it so you have others to talk to. This is a very secluded condition. You are not alone.”