Woman with rare brain disease finally able to see UW Health doctor

Iron Mountain woman living with Moya Moya receives potentially good news
Wisconsin woman with rare brain disease finally able to see UW Health doctor in Madison
Wisconsin woman with rare brain disease finally able to see UW Health doctor in Madison(Emily Houser | Emily Houser)
Published: Jan. 15, 2022 at 7:32 PM CST
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MADISON, Wis. (WMTV) - Emily Houser suffered 10 strokes and waited over two weeks to schedule an initial checkup with a neurosurgeon at UW Health.

Intensive care unit beds are still sparse in Dane County as several people dealing with extreme COVID-19 symptoms need them.

The Wisconsin Hospital Association listed that 21 out of 260 beds were available on Saturday.

The low number of bed impacts people like 25-year-old Houser who was waiting for life saving health care.

UW Health is a four hour drive from her Iron Mountain home and it’s the closest facility that employs the type of neurosurgeon specialist needed to diagnose her Moya Moya brain disorder.

“People don’t realize that when you need a surgery like I do, it is very scary trying to get to a hospital and then you wait,” Houser said. “I was rushed to the hospital and then we waited three and-a-half hours before we even saw a nurse.”

After receiving the Moya Moya diagnosis, she learned the rare brain and blood disease is typically found in people very young or very old.

“The only thing that’s actually keeping me going and ticking is that I have all of these tiny little helper vessels around it [one of two of main brain arteries] trying to compensate and help,” she said. “Otherwise it would be catastrophically bad.”

The strokes she suffered also impacted her family’s health.

“Unfortunately I’ve dropped my one year old during a stroke,” she shared. “He’s okay, but for safety reasons I’m not driving and I’m not alone with my kids.”>

UW Health Chief Quality Officer and Emergency Physician Dr. Jeff Pothoff said people not vaccinated against COVID-19 fill up hospitals and prevent doctors from seeing patients like Houser.

“It’s difficult to hear these stories of patients who need medical care who cannot get it knowing that the simple act of those who are unvaccinated getting vaccinated would then create capacity in our health systems so that we could take care of everyone,” Dr. Pothoff said.

He said he never imagined he would have to turn patients away.

”None of us ever thought that we’d be making these kind of decisions or having to say no to patients,” Dr. Pothoff said. “We don’t know where they’re going to get that care from or if they’ll be able to make it until we have a bed that can open up.”

Houser felt lucky that she eventually received care and thankful for her Iron Mountain community for helping her pay for some of the high medical costs.

“I feel for anybody else out there who would need to get into any hospital,” she said. “It’s tough because there are no beds and there’s nothing they can do about it except sit there and make you wait.”

After her initial checkup, she learned that her brain began healing itself. Temporarily she will continue to rest and drink plenty of water at home while she waits for her doctor’s final decision scheduled for Monday.

She might still need immediate surgery or she could learn that UW Health doctors will wait longer and see how or if her brain continues to heal itself.

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