AUSTIN, Ark. (KTHV) - The lights are dimmed inside the home of 21-year-old Amber Tedford. It's her way of preventing the vicious migraines that have plagued her for years. The young mother lives in a world of darkness hoping to make her day-to-day life a little better.
Those migraines are caused by a rare genetic disorder that has made life almost unbearable for Tedford. But in the coming days, she will undergo a risky skull replacement procedure that she hopes will ease her pain and give her peace of mind.
"Every single day I wake up with a headache and just play it by ear on which medication I'm going to try, and I've tried just about all of them," Tedford said.
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In her teens, Tedford was diagnosed with fibrous dysplasia, a rare condition that can affect the skull, which develops a scar-like tissue where the bone should be.
"I'd say over the last few years, we've ended up in the ER probably 20 to 30 times," Tedford admitted.
Tedford, who once dreamed of being a teacher, now spends her days in and out of bed.
"It feels like the migraines have just completely taken my life away," she said. "Everything I've wanted to do, I can no longer do, because I'm in too much pain to do it."
In some places, her skull is currently three times thicker than it should be. When she was 16, Tedford had part of her skull removed and it was replace with a titanium mesh plate. She still has that piece of her skull that caused her so much pain.
"As this was growing, and pushing on all my nerves it was causing all of my pain," she recalled.
That original surgery wasn't a success and the pain remained. Tedford said that as soon as she had that surgery, she felt like it ruined her life.
After years of suffering, Tedford was directed to a world renowned neurosurgeon, right here in the Natural State. Doctor Ali Krisht at St. Vincent in Little Rock was able come up with a surgical plan to tackle Tedford's pain in a matter of minutes.
His course of action is to replace nearly 60 to 70 percent of Tedford's skull.
"A complete skull reconstruction from here all the way back to my brain stem,” Tedford said, tracing the path along the back of her heard.
Krisht will first try titanium mesh, the material used in Tedford's previous procedure.
"We lay down the mesh, which acts like the steel mesh and on top of it, there will be a bone paste that will harden and become bone,” he explained.
The doctor is confident that his team will be able to remove all the fibrous tissue, but if that doesn't work he will create a three-dimensional model to fit the back part of her skull.
For Tedford, she'll accept any procedure offered as long as it works in the long run.
"I'll be able to make new dreams and new aspirations, and actually be able to do them, instead of just wish I'd be able to,” she said, while holding her 3-year-old daughter.
While she wishes the pain can go away, Tedford and her husband are worried about how they will be able to pay for it.
"We can't. We just can't do it," she admitted. "We've prayed and we've prayed and we've prayed. We know God is here for us, and we know everything is going to be ok, it's just stressful not knowing how you're going to pay your bills each month.”
But her friend has set up a GoFundMe page to help her family pay for the procedure, that is expected to cost around $10,000.
Tedford is scheduled to have her skull replacement surgery on August 7.
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