VIDEO: 30 years of pain, a West Fargo mom opens up about her rare diagnosis that changed her life

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WEST FARGO — As a mother, the things you cherish above all others are your children.

For Sara Johnson, 30 years with a daily ache behind her right eye made time with her favorites hard to handle.

“Imagine the quality of life she had, daily headaches, loss of vision, not able to enjoy her life,” said Sanford Neurologist Dr. Drofa.

Sara had migraines almost every single day, but it only took the one she got at her daughter's dance competition two years ago to change everything.


“We came home on Sunday and I looked at my husband, I said you know what we gotta go in,” Sara said. “I know it's gonna hit again tonight and it's gonna get worse and I have no meds left."

Excruciating pain, a trip to the E.R and one Brain scan later Sara learned she had AVM ( a rteriovenous malformation).

“AVM, what the heck is that?” Sara explains, “The best way I described to people that ask me is, it's like a big ball of yarn that is your blood vessels and it's not supposed to be there."

“It's huge, it’s about four by six centimeters,” Dr. Drofa said, “It is very rare, if you believe in population studies we're looking at one in every 100,000."

The baseball-sized bunch of vessels in her head could've burst at any time.

So doctors operated on her three times.

“The Last MRI was done in October of this year and I think I'm good to go so yeah it was scary, it was so scary,” Sara said, “30 years of this and the thing is that if something would've happened where it would've ruptured or burst I may not be here today."

Now, Sara is doing better than ever.


"Life is great now, life is great," Sara said.

She gets to watch her two favorite people grow up, now without that ache behind her right eye.

Sara says if you experience any kind of headaches or migraines, get a brain scan.

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