DENVER, Colo. (Ivanhoe Newswire) – Headache, balance issues, dizziness, vomiting, muscle weakness – sounds like a bad hangover, but for thousands of people, these are the signs of a neurological disorder called Chiari malformation. Many people suffer for years without a diagnosis. One woman is on a mission to help others get the help they need.
From a sketch, to a designer dress – this is Hannah Jane’s lifelong passion.
“I’m an artist and designer. I own a brand, it’s called Art of Hannah Jane. That is who I am,” Hannah Jane tells Ivanhoe.
But who Hannah Jane was changed dramatically without warning.
“I woke up with the spins. I had never experienced anything like that before,” Hannah Jane remembers.
Doctors first told her she had vertigo, but the symptoms got worse.
Hannah Jane painfully recalls, “I threw up for two years straight, every day, if not, multiple times a day. I couldn’t feel my arms and legs most days.”
It took two years until she was diagnosed with a Chiari malformation — part of her brain extends out of the skull and into the spinal cord.
“It tends to block the flow of spinal fluid, up and down, between the compartment of the head and the spinal column,” explains Neurosurgeon at the Colorado Chiari Institute, Colin Buchanan, MD.
When medications didn’t help, doctors at the Colorado Chiari Institute performed decompression surgery.
Dr. Buchanan adds, “We go into the back of the head and create more room for the spinal fluid to circulate around.”
Hannah Jane did find relief from most of her symptoms. She still suffers from vertigo, but now, it’s manageable – allowing her to turn her passion into purpose.
“Creating has been a lifesaver to me, absolutely. It has been the only connection to myself amidst not feeling like myself,” Hannah Jane exclaims.
Hannah Jane’s Instagram account is @chiarimalformation. She’s designed coloring books and t-shirts to help spread awareness on this disorder. Doctors don’t know what causes Chiari malformation but believe it does have a genetic component and it tends to impact women more than men.
Contributors to this news report include: Marsha Lewis, Producer; Matt Goldschmit, Videographer; Roque Correa, Editor.
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Sources:
https://www.artofhannahjane.com
https://www.artofhannahjane.com/collections/the-chiari-community
MEDICAL BREAKTHROUGHS
RESEARCH SUMMARY
TOPIC: SAVING HANNAH’S BRAIN: CORRECTING CHIARI MALFORMATION
REPORT: MB #5283
BACKGROUND: Chiari malformation is a painful condition where part of the brain extends into the spinal canal. There are four types of Chiari malformation: type 1, type 2, type 3, and type 4. About one million people in the United States will develop the condition. Chiari malformation is more prevalent in women than men. The condition can show up at any point in someone’s lifetime.
(Sources: https://www.mayoclinic.org/diseases-conditions/chiari-malformation/symptoms-causes/syc-20354010
DIAGNOSING: People with Chiari malformation oftentimes are asymptomatic, but depending on the severity of the condition, symptoms can worsen. For people with type 1 of the disease, symptoms can include: neck pain, dizziness, numbness in limbs, ringing in the ears, and/or speech problems. For type 2, symptoms can include: changes in breathing, quick downward eye movements, and/or weakness. Type 3 and type 4 are the most severe cases of the disease. In type 3, there is actually a defect that pushes in the back of the head or neck. Type 4 is the rarest and deadliest. This level of severity occurs in gestation and most infants don’t survive after birth. Most doctors can diagnose this condition with an MRI or a CT scan.
(Sources: https://www.mayoclinic.org/diseases-conditions/chiari-malformation/symptoms-causes/syc-20354010)
NEW TECHNOLOGY: Decompression surgery is one of the ways that Chiari malformation is treated. According to a Duke chair of neurosurgery, the surgery involves “removing bone to create more space around the cerebellum and cervical spine, which helps restore the normal flow of spinal fluid and relieve pressure on the spinal cord, halting further damage.” Soon after surgery, patients can feel relief.
FOR MORE INFORMATION ON THIS REPORT, PLEASE CONTACT:
Stephanie Sullivan
Stephanie.sullivan@HealthONEcares.com
If this story or any other Ivanhoe story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Marjorie Bekaert Thomas at mthomas@ivanhoe.com
