Sarah and family

Sarah Ashley, center, sits with her family. Sarah story is a complex one.

Describing what’s happening to Sarah Ashley is complex. Her symptoms are so vast they’re syndromes. The paradox of her pain is her sunny disposition and optimistic attitude.

Ashley was diagnosed this year with Chiari 1 Malformation and POTS (Postural Orthostatic Tachycardia Syndrome) in January 2015. The lesser-know Chiari Malformation means Sarah’s brain is herniated out of her skull and jammed down the spinal canal.

Part of her skull is unusually small. It pushes against her brain, forcing it forward unnaturally.  

Those two lesser-known syndromes came on the heels of Ashley being diagnosed in 2013 with Ehlers-Danlos Syndrome and Raynauds. All of the mouthful-syndromes may have gone unnoticed had Ashley not gotten in a serious car accident in December 2012.

Ashley was a short distance from her Belgrade home when a large truck smashed into her Toyota Landcruiser. Ashley suffered whiplash and a concussion. A whole other roster of symptoms from her diseases reared up for the first time in her life. Some maladies affected her immediately. Others progressively got worse.

Her vision was instantly off. She could hear a swishing liquid in her ears. Ashley developed an aversion to light and loud noises. Her balance was tenuous at best. Her limbs tingled. She was constantly nauseous. Cognitively Ashley started slipping.

“That became very stressful in my home life,” Ashley said. “It was hard to keep the kids on track and doing what they needed to do. When my husband would ask me to do things, I would forget unless I wrote it down.”

As the days wore on after the accident, Ashley’s symptoms grew worse. Her back would constantly spasm.

Her primary care doctor recommended physical therapy, massage and chiropractic care. Each of those professionals noted that Ashley reacted completely opposite of most car crash victims. Instead of her muscles tightening, Ashley’s muscles were too loose.

“Everything is taking way, way longer to heal, too,” Ashley said.

Ashley routinely cuts and burns her hands and doesn’t feel it. Cooking is especially hazardous. The whole-body weakness makes it so she can’t pick up her children, make the beds or do her hair.

“That’s the bitter one for me because I’m a hairdresser,” Ashley said.

All day long, 38 joints in Ashley’s body are actively dislocating. The silver ring-looking instruments she wears on her hands keep her fingers from dislocating. She’s learned from her healthcare professionals how to put her body back into whack, at least temporarily.

Ashley’s health will only continue to deteriorate if she doesn’t have surgery.

“Before this, I was a normal mom,” Ashley said. “I maybe had a headache, that’s all.”

Now she’s got a roster of ailments a mile long. She finally has a doctor willing to perform a surgery that could eliminate those ailments. Since there are no Chiari doctors in Montana, Ashley looked far and wide for someone willing to take her on as a patient. She found a man in North Carolina.

In January, Ashley met with her neurosurgeon. The doctor recommended Ashley immediately have a surgery performed to remove part of the base of her skull, open the protective sack around her brain, cauterize and remove part of her cerebellum, put in a bovine patch, and take off part of two vertebrae.

“He said, ‘You don’t really have an option, you need to get this surgery,’” Ashley said. “I’m at high risk for a stroke or sudden death.”

All of that will help repair what was injured in the car wreck and exacerbated by Chiari, POTS and Ehlers-Danlos Syndrome.

Ashley has insurance to cover the surgery. A Go Fund Me webpage has been started to help offset the cost of travel to North Carolina. Ashley and her husband must take multiple trips for surgery and checkups.

While she understands the dangers of the surgery (being so weak she can no longer hold up her head), Ashley said she is excited and hopeful. A year after surgery, Ashley’s doctor said he believes her joint will tighten up and return to post-crash tautness.

If all goes well, she will be able to drive after her six-week checkup. She will be able to pick up her four children and play with them. She can fix her hair. Her vision will improve, the ringing in her ears will abate and she will hopefully return to the “normal mom” she was before the fateful December 2012 car accident.

“I just know I can’t stay like this,” Ashley said.

More information about Ashley’s story is available at