Single mother struggles to overcome rare disorder
If you saw Donna Conrad a couple of years ago, you may not have 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 life, did she look into what could be causing it.
The single mother of a 4-year-old boy named Wesley, Conrad had to bear the pain by herself to stay strong for her son and her family. It was a pain she hid from her 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 of the flow of spinal fluid to the rest of the body -- was a difficult one. Twice she was misdiagnosed before doctors realized what she had.
Doctors first attributed her pain to carpal tunnel syndrome because Conrad had been using the Internet since she was a teenager and because she did a lot of repetitive motions with her hands as a hairdresser. When doctors tested her, they saw that certain movements that agitate the nerves of carpal tunnel patients caused her pain, so they diagnosed her with the condition.
Doctors gave Conrad a brace she could wear on her arm 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 Conrad for a while, she started noticing strange feelings in her legs similar to the initial pain she felt in her arm. On top of that, when the pain started returning from Conrad not wearing her brace, it would be stronger.
It was then that Conrad surmised from a long-time client the symptoms could be more than just carpal tunnel.
The client had told Conrad that all of the symptoms she had been describing were symptoms of multiple sclerosis. Having been diagnosed with MS herself in the mid '90s, the client recognized some of the symptoms and told Conrad about them.
Conrad researched the disease on the Internet, only to horrify herself when MS became a real possibility.
"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 very long, and soon the pain became too much for her to bear. 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 that 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.
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 had to work as the pain and symptoms got worse.
"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.
Conrad told the doctors her symptoms, and they were pretty sure that she had MS. They had her get an MRI to make sure. A few days later the doctors called with news that she had a small lesion in her brain that was 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."
The news that Conrad had MS also was shocking to the rest of her family.
Conrad's grandmother Shirley Conrad said her heart broke when she heard the news. Conrad's father, Charlie Conrad, also could not believe his daughter could have the disease when there wasn't a history of MS in their family.
"My heart went to my heels when I found out," he said.
Although Conrad had many of the symptoms associated with MS, doctors couldn't determine why one 3-millimeter lesion was causing her so much pain. After more MRIs later, Conrad's radiologist noticed that part of her cerebellum was hanging lower than it should be and they suspected it might be Chiari malformation. Her neurologist was not sure of that diagnosis because the disease was so rare and Conrad did not meet the usual criteria.
Because she did not meet the criteria for Chiari malformation, her insurance company, Coventry Health Care of Kansas, was not willing to pay for her to get the 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 to write detailed reports indicating why she needed the flow study.
'I looked dead'
It was around that time that Conrad began going to her appointments with her father. She specifically wanted him to come to the appointments because he would always be honest with her, no matter how bad things got.
Her father knew Conrad had experienced discomfort in her limbs since she was a child, but he never knew how much pain Conrad was hiding until he began going to the doctor visits with her.
"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, 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 there was such a low flow of spinal fluid circulating in her body that Conrad was a good candidate for surgery. But there were risks involved with the surgery that Conrad had to weigh with her family before she made her decision.
Conrad said the surgeons at University of Kansas Hospital gave the surgery a 65 percent chance of success.
Conrad thought about the possibility that the surgery wouldn't accomplish anything.
"I was thinking there is still a really good chance this isn't going to do anything," she said. "I'm really nervous of someone messing with my spine and my brain."
She had asked her doctors what would happen if she chose not to proceed with the surgery, but in so many words the doctors told her 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.
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 wasn't able to sleep, so she got on her computer and wrote a letter to her son in case she didn't survive.
This was part of that letter:
"I love you so much, words cannot describe. You have taught me more in four years about life than anyone else could in a lifetime. I know everyone tells you that you can be anything you want to be, well it is the truth and you had better do it. Life is too short to fall for anything less. Just remember to 'keep your head in the game.' No matter what in life I am always right beside you."
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.
"I would have done anything to trade places and I would do it today, too," he said.
He said he regretted not paying more attention to some of the signs and symptoms that Conrad had through the years including when she was a child rubbing his daughter's leg so she could go to sleep because it was hurting her.
Improved, not cured
The surgery, which involved removing Conrad's first vertebrae to make more room for spinal fluid to flow, took eight hours and it took Conrad several days and an adjustment to her pain medication before she felt an improvement.
Since the surgery, Conrad has noted a marked improvement with the left side of her body, but the pain and her headaches have remained.
But all of Conrad's problems have not disappeared. 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 has also had a lot of financial difficulties since the surgery, as all of the hospital bills and the bills the insurance didn't pay, added up. She can't work for long periods of time and the doctors have told her she needs to take it easy.
Conrad still cuts hair, but only by appointment. And on Saturdays, she helps out at Vintage Soap and Bath.
Her family has also helped her put fundraisers together to help raise money for medical expenses. In late August, a rummage sale raised more than $1,500 for Conrad. Conrad's family is also selling tickets to raffle of a homemade quilt. The raffle is expected to take place in mid-October.