Focused ultrasound changes 27 year-old uterine fibroid patient's life

On June 12, 2011, viewers of the CBS Evening News learned about Stephanie Small's gripping story. Suffering from a large uterine fibroid, the 27 year-old was treated last December as part of a MR-guided focused ultrasound clinical trial at the University of Virginia in Charlottesville.

Small says her focused ultrasound treatment changed her life. She experienced symptom relief within a few days and reports that her quality of life has steadily and significantly improved. "I think focused ultrasound surgery is amazing, and I believe that fears of incisions, scaring, complications and long painful recovery times are now concerns of the past with this new technology," she says.

Small's journey unfolded over many months, from the time she received her diagnosis and was advised to have a myomectomy. Fearful of the risks associated with that treatment, she began searching for other options. Surfing the web for information, she discovered the websites for the Focused Ultrasound Surgery Foundation and its patient support organization, Fibroid Relief. What she learned there proved to be invaluable and convinced her to opt for MR-guided focused ultrasound treatment. She made arrangements to undergo the noninvasive outpatient procedure at a center near her home in eastern Pennsylvania.

However, a major stumbling block quickly surfaced: Small's health insurer refused to cover her focused ultrasound treatment. Determined to proceed, she downloaded the Reimbursement Resource Toolkit from the Fibroid Relief website. A popular resource that has been downloaded 1350 times since its August 2010 debut, the toolkit contains sample letters and tips for appealing a health plan denial.

Faced with steadily increasing pain and disability, Small opted to participate in the UVA study rather than appeal her insurance company's decision. She received two treatments on consecutive days just before Christmas, the second of which was taped by CBS News.

As an expression of her gratitude, Small has become an advocate for both focused ultrasound and patient empowerment, especially among young women like herself. Six weeks after treatment, she returned to Charlottesville for a follow-up visit at UVA and to participate as a panelist at the Focused ultrasound Surgery Foundation's Fibroid Relief at Last event.

More recently, she posted an account of her illness, treatment and recovery on the Fibroid Relief website, which ends with a powerful personal message to others: "Knowledge is power. Educate yourself so you can play a more active role in your own healthcare."