One day at a timeEvansville woman lives with chronic pain caused by brain disorder
By: Jo Colvin, Alexandria Echo Press
In the scope of eternity, Stephanie Anderson thinks life seems like a pretty small chunk of time. Reminding herself of that is how she makes it through each day.
“I’ve learned that I have to take it one day at a time,” said the Evansville resident. “I can’t look into the future. Our life here is short compared to eternity. It’s a much more promising picture.”
And if Stephanie only thinks of today, she doesn’t have to think of the pain she will endure tomorrow – pain that is part of her life every single day.
About two years ago, Stephanie’s arms were tingling and going numb. She had terrible headaches, pressure behind her eyes and a constant ringing in her ears.
“Weird things were happening,” she recalled. “I kept thinking, I’m young, why am I feeling so cruddy all the time? It made no sense.”
Fearing multiple sclerosis, she went to the doctor. She and her husband, Mitch, were relieved to hear there was no sign of that disease. But an MRI revealed something even more disturbing.
“The doctor saw that I had a very large chiari malformation, and a large syrinx,” Stephanie said. “It was significant.”
“The hole in the bottom of her skull was too small, and basically, her brain settled into the hole and plugged up fluid that was supposed to flow into the brain cavity,” Mitch explained. “It causes backup and fluid pressure in her head and spinal cavity.” (See related sidebar.)
In hindsight, Stephanie realized that the diagnosis explained several symptoms she had as a teen, including scoliosis, double vision and migraines. She thought it was just a phase that she had outgrown, but now the symptoms were nearly debilitating.
The Andersons were informed that the only treatment was surgery – or she would be paralyzed “within a short amount of time.”
Within a week, November 2007, Stephanie underwent surgery at the University of Minnesota, where they removed a “chunk” at the base of her skull the size of a 50-cent piece, part of her top vertebrae, and put a patch around the opening. They were told the surgery had an 80 percent success rate.
But the post-surgery pain was excruciating.
“My head was so severely hurting I couldn’t open my eyes,” Stephanie recalled. “The headaches were so severe, just from moving my head off the pillow it felt like I was going to pass out from the pain.”
When she got home, things did not improve – in fact, it got worse. Besides the intense pain, Stephanie’s legs and arms were numb. She couldn’t feel hot and cold.
Concerned about the amount of painkillers she had to take, Mitch kept calling the doctors, but they said to give it time. Then he noticed fluid leaking from the patch at the base of her skull.
“I saw the seepage. She couldn’t get out of bed.” Mitch said. “I said, ‘That’s enough of that.’ ”
He brought her to the U of M, and on December 29, 2007 Stephanie went through another surgery, in which they repaired the leaking patch and inserted a drain tube to keep the pressure off it.
“I think the second surgery was the worst for me, the outcome of it,” she said. “After the surgery I lost my function to walk. I had terrible headaches. I left the hospital with a catheter.”
“They had her on heavy duty drugs,” Mitch concurred, as he filled in the details that his wife can’t remember. “She was just out if it. I wondered if she was mentally OK.”
In addition to her physical ailments, guilt was eating away at the young mother of three boys, ages 13, 9 and 4.
“When you are a stay-at-home mom, you think your job is to take care of your family and your house,” she grieved. “He [Mitch] was having to work all day, take care of the kids, cook. He was doing the job it took two of us to do.”
By the end of February, Stephanie made it out of the house for the first time. But just when she thought things were looking up, the symptoms got much worse again. Because there was still too much pressure on the seal, and the syrinx (cyst) was not shrinking, another surgery was needed.
For the third time in five months, in April 2008, Stephanie was on the operating table. This time a shunt was placed into the syrinx so it could drain into her spinal column.
“It scared me, but when you are in so much pain you finally think this is going to do something,” Stephanie said of the concerns about another surgery. Doctors said that this was the last they would do, regardless of the outcome.
“I was confident it was going to help,” Mitch agreed.
But it was another long, arduous recovery. And almost a year later, Stephanie is still on pain medication.
“It’s better of course, but I have suffered with chronic pain ever since,” she said, pointing out the scars on her neck and skull. “From the middle of my back all the way into my head, it’s a constant pain that’s always there.”
Because of the ongoing pain, simple daily chores become nearly insurmountable tasks.
“I clean the bathroom and I’ll be done for the day. Everybody else has to take over,” Stephanie said, proud of the willingness of her boys to help. “I sit back and feel terrible. The kids should be kids and they are having to help Mom.”
Stephanie is now working with a pain physician, who is trying to get her off medication. Although she has improved slightly with this new treatment, each day is a struggle.
“We just do what we have to do,” Mitch said.
“If I look into the future it’s very depressing,” Stephanie added. “That’s where your faith in God comes in. There’s nothing else that’s going to help you.”
“One day might be better than the rest and thank goodness it is,” she concluded.
And with the promise of eternity, one more day doesn’t seem all that bad.
Chiari malformation is a serious neurological disorder in which brain tissue protrudes into the spinal column. It occurs when part of the skull is abnormally small or misshapen, pressing on the brain and forcing it downward. The bottom part of the brain, called the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine, and disrupting the flow of spinal fluid.
• Neck pain.
• Unsteady gait, problems with balance.
• Poor hand coordination and fine motor skills.
• Numbness and tingling of hands and feet.
• Difficulty swallowing.
• Vision problems.
• Slurred speech.
• Severe headaches.
Treatment includes surgery to make more room around the cerebellum by removing part of the skull and vertebral column.
Syringomyelia is a disorder in which a fluid-filled cyst, known as a syrinx, develops inside the spinal cord, stretching the cord and damaging nerve tissue. It is usually progressive and can cause neurological deterioration over time.
The chiari malformation is one of the leading causes of syringomyelia.