Woman With Rare Brain Disorder Voices Problems Seeking Treatment

Woman With Rare Brain Disorder Voices Problems Seeking Treatment

Anum Valliani

NewsWest 9

WEST TEXAS -  For a patient with a really rare condition, half the battle is trying to find a doctor who knows what it is. No one knows this better than Michelle Bradley.

"I had a headache for three months and I went to a neurologist and they did an MRI and that's how they discovered it," Bradley said.

It was just two years ago that Bradley was diagnosed with Chiari Malformation Disorder. If you're wondering what that is, you're most certainly not alone.

"I've had doctors Google it in front of me. I've had doctors, 'Well how do you fix that?' I don't know you went to medical school, shouldn't you be telling me that?" she said.

The disorder is when your skull is too large for your brain, and part of it extends into the spinal cord.

"Just because we don't look like we have a problem, we do have a real problem, and it's not easy to overcome that," she explained. She also mentioned the common symptoms; "burning, tingling pain in my arms my legs, my feet, my legs go numb. There's times I go to stand up and my legs give out on me."

And then there are other problems. Bradley said she gets turned away at the mention of her condition, because many doctors just don't know about Chiari Malformation. Then the few specialists that exist span the country and traveling to see them is it's own challenge..

It's estimated to happen every one in a thousand births. Most people typically find out through a hospital visit for something else, or whenever the symptoms start to kick in. The latter, can change a person's lifestyle.

"Like the other day I said I had a headache, my daughter says, 'Why don't you tell me when you don't have a headache, then we can be happy for you.'" Bradley said.

Currently there's no cure for Chiari Malformation, but there are different surgeries that can reduce the pain. The most common one involves removing part of the skull to create more space for the brain.

"They cut a piece of it out, take it off, and then they put a patch over it and then sow it up. They're known as "zipperheads" because when you get your staples down the back of your neck it looks like a zipper. So everyone calls us "zipperheads." I'm not one yet, but I'm looking to be one," Bradley mused.

But until she can get to that point, Bradley's just hoping the medical community and public starts to recognize the condition.

Currently Bradley has been urged to seek treatment from a specialist in Dallas. She has a Gofundme account set up if you would like to help.