Patient profile: Stephanie Small, Pennsylvania, USA
Stephanie Small and her UVA physician, Alan Matsumoto, MD, were panelists at a Fibroid Relief at Last event.
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’s journey had 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 viable options. Surfing the web for information, she discovered the websites for the FUS Foundation and our patient support organization, Fibroid Relief. What she learned there proved to be invaluable. Ultimately, she decided to seek treatment with MR-guided focused ultrasound at a center in New Jersey.
A major stumbling block quickly surfaced: Small’s medical insurer refused to pay for 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 abandoned her pursuit of reimbursement and instead opted to participate in the UVA study. She received two treatments on consecutive days just before Christmas, the second of which was taped by CBS News.
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.
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 with her UVA physician, Alan Matsumoto, MD, and to participate as a panelist at the 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.” Written by Ellen C., McKenna
Click here to read Stephanie Small’s personal account of her illness, treatment and recovery.
Click here to watch CBS Evening News report, “Ultrasound replaces scalpel for some tumor ops.”