Archive for Monday, September 24, 2007

Mother coping with rare brain disorder

Medical expenses complicate already difficult situation

September 24, 2007


Tonganoxie residents rally to help neighbor

The city of Tonganoxie rallied together to help a neighbor pay her medical expenses. Enlarge video

Donna Conrad, 27, shown with her son, Wesley, 4, underwent major surgery to correct a rare brain disorder known as Chiari malformation.

Donna Conrad, 27, shown with her son, Wesley, 4, underwent major surgery to correct a rare brain disorder known as Chiari malformation.

If you saw Donna Conrad a couple of years ago, you may not have ever known a genetic disorder in her brain was slowly killing her.

In fact, for most of her life, she didn't even know.

Conrad, now 27, had been living with discomfort on the left side of her body since she was a child. But not until she was 19 years old, when the pain and discomfort started affecting her personal and work lives, did she look into its cause.

The single mother of a 4-year-old boy named Wesley, Conrad had to bear the pain by herself, all to stay strong for her son and her family. It was a pain she hid from friends, family and even herself because she was afraid of what it could be. Her life took a turn when she was diagnosed with a rare brain disorder that normally affects small children or middle-aged adults.

The process in which Conrad was diagnosed with Arnold-Chiari Malformation - a disorder in which part of the brain hangs too low, cutting off the flow of spinal fluid to the rest of the body - was difficult. Twice, she was misdiagnosed.

Doctors first attributed her pain to carpal tunnel syndrome because Conrad had used the Internet since she was a teenager and because of the many repetitive movements in her job as a hairdresser. Doctors determined that certain movements that agitate carpal tunnel patients' nerves caused her pain. Doctors gave Conrad an arm brace to help relieve the pain.

"The brace made the pain go away," Conrad said. "I would wear it for a few months and the pain would completely disappear, so I wouldn't wear it at all. Then the pain would come back and I would put the brace back on."

Although the brace worked for a while, she started noticing strange feelings in her legs, similar to the initial pain she felt in her arm. And the pain in her arm was stronger each time she stopped wearing the brace.

So Conrad surmised that her symptoms could be more than just carpal tunnel.

A client told Conrad that all the symptoms she had described were symptoms of multiple sclerosis. A trip to the Internet for research horrified Conrad.

"I was like, 'Oh my god, what can I do for it?'" she said. "There is nothing you can do for MS at all. I just decided to ignore it because I didn't want to be diagnosed with MS."

But Conrad could not ignore the symptoms for long. She collapsed in April 2006 in a mall while taking her son to the bathroom.

"I lost complete control over my legs," she said. "I couldn't even explain the feeling. It was like my leg went completely numb and I lost complete control over it."

She knew she wouldn't just be able to live with the symptoms and the pain any longer. But to get treatment, she would need health insurance.

Shocking news

Conrad was a self-employed hairdresser in Tonganoxie. She decided she needed health insurance and went to work for a salon. In the few months it took for her health insurance to begin, Conrad worked in pain.

"My leg hurt so bad and my arm hurt so bad, I barely could make it through the work day," she said.

There was even a two-week period where she lost vision in her left eye.

When her insurance started in October, she visited a doctor in Overland Park who said she had a small lesion in her brain, common with MS patients.

"Honestly I don't know how I felt," she said. "It was like my worst nightmare was coming true because you can't do anything for it. It basically takes you over."

Although Conrad had many symptoms associated with MS, doctors couldn't determine why one 3-millimeter lesion was causing her so much pain. A radiologist noticed part of her cerebellum was hanging lower than it should. But Conrad did not meet the usual criteria of Chiari malformation.

And because she didn't meet that criteria, her insurance company, Coventry Health Care of Kansas, would not pay for a spinal fluid flow study she needed.

She appealed Coventry's decision for several months and she even enlisted the help of the radiologist and the neurologist.

'I looked dead'

Charlie Conrad knew his daughter had experienced discomfort in her limbs since she was a child, but he didn't realize how much pain she had been hiding.

"I knew she was having some leg problems, but she never complained," Charlie Conrad said. "The neurosurgeon couldn't believe how she was able to cover all of her symptoms."

By April 2007, the pain became too great and Conrad decided to pay for the test herself.

"At this point my head is hurting so bad and I can barley function," she said. "My grandma would say when I would come home from work I looked dead."

The $2,000 test showed Conrad was a good candidate for surgery. But as she faced a surgical success rate of 65 percent, Conrad had to weigh her decision carefully.

She had asked her doctors at Kansas University Hospital what would happen without surgery. The answer, basically, was she would die because her brain would continue putting pressure on her spine and her spine would put pressure on her throat.

"I was basically getting hung," Conrad said.

Awaiting surgery

The night before surgery the thought that she wasn't going to live through the procedure kept creeping into Conrad's mind.

"I thought I was going to die. I just didn't think I was going to make it," she said, holding back tears as she recalled that evening.

She couldn't sleep, so she got on her computer and wrote a letter to her son, in case she didn't survive.

Conrad wasn't the only one having a tough night.

Charlie Conrad said he was at home "bawling like a baby" in the hours before his daughter's surgery.

Since the eight-hour surgery - to remove Conrad's first vertebrae to make more room for spinal fluid to flow - Conrad has noted a marked improvement with the left side of her body, but the pain and headaches remain.

On a couple of occasions the headaches have gotten so bad that she has been taken to the emergency room.

"Right now I'm emotionally a wreck," she said. "Physically some days I feel amazing, but some days I can barely get out of bed."

She also said that it's hard for her when she has a bad day because her son depends on her so much.

Conrad also has many financial difficulties since surgery, as medical bills added up. She can't work for long periods of time and the doctors have told her to take it easy.

Conrad still cuts hair, but only by appointment. And on Saturdays, she helps out at Vintage Soap and Bath in downtown Tonganoxie.

Her family has also helped her put fundraisers together to help with medical expenses. In late August, a rummage sale at Leavenworth County Fairgrounds raised more than $1,500 for Conrad. Conrad's family is also selling tickets to raffle a homemade quilt. The raffle is expected to take place in mid-October.


carriebear31 10 years, 2 months ago

I also have Chiari and have had a article published.. I am so happy to see more awareness for Chiari. I wish you well and hope that you have more good days than bad. I am in the process of getting an appt to set up surgery. Feel free to contact me At

GretchenJP 10 years, 2 months ago

How horrible! I've never heard of Chiari. Carrie and Donna, I wish the best for you.

Sal 10 years, 2 months ago

So sorry that you and so many others have to experience this difficult time having chiari diagnosed... For more information on chiari, please visit....

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