BICUSPID AORTIC FOUNDATION |
Contact Us Bicuspid Aortic Foundation 30100 Town Center Drive, SuiteO-299 Laguna Niguel, CA 92677 Telephone Toll free in the US (888) 310-HOPE (4673) or (949) 495-0027 Fax: (949) 606-0413 Email: contactus@bicuspidfoundation.com The Bicuspid Aortic Foundation recognizes the importance of maintaining the privacy
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Bicuspid Aortic Valve Disease |
All aortic aneurysm and dissection in the chest |
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Creating a climate of hope |
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Creating a climate of hope, an atmosphere of caring, and a source of information for
all who are touched by thoracic aortic disease and the medical professionals
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Bicuspid Aortic Foundation Scientific Advisory Board |
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Additional Resources |
Hope Through Knowledge from the BAF 2008 Conference Valvular Strands, Stroke, and TEE |
by Arlys Velebir, Chair of the Bicuspid Aortic Foundation Board of Directors At the BAF 2008 Conference, Dr. Sharo Raissi spoke about five of his patients who experienced strokes caused by valvular strands - fine, hair-like structures that formed on their prosthetic valves. One of those patients is my husband. My husband was the first of these five to be diagnosed with strands, but he was not the first of them to have a strand-related stroke. After the fact, we realized that another of Dr. Raissi's patients was actually the first "strand" stroke victim. Only a few hours after surgery to remove his ascending aortic aneurysm, in ICU this man had a stroke. He had also had a prior stroke, thought to be caused by a clot thrown from his mechanical valve due to inadequate anticoagulation. But this time, so soon after surgery, no one could explain why. I remember sitting in the hospital with his wife that night, wondering why. He had just had the same aneurysm surgery as my husband, and like my husband, his mechanical valve was left in place, apparently working well. It was much later, after my husband's stroke and valvular strands were found, that they pulled the TEE from this first man's aneurysm surgery. There they were - valvular strands - missed by the cardiologist who read his TEE during surgery. Finding the strands raised the question if perhaps his original stroke had also been caused by them. Knowing he too had strands, he elected to have the fourth surgery of his life to remove the prosthetic valve and the strands attached. A breathed a sigh of relief the day it was safely removed from his chest. |
Above is the TEE performed during my husband's surgery on 2/13/2006. The pointer
indicates the area on the intake side of the valve where strands are present. Invisible to the eye, only TEE detects valvular strands. Strands have typically been found when searching for an explanation following stroke. Strands have the potential to shower the brain with particles, damaging multiple areas. That is what happened to my husband. The information in the paper by Van den Brink sheds light on valvular strand detection, and gives hope that in the future patients with strands may be diagnosed before their brains are injured.. |
On February 13th, 2006, the mechanical aortic valve with its attached strands was
removed from my husband's chest. It was his third open heart surgery, high risk
because of his extensive stroke. Today he is much improved, but still so limited
by his stroke. |
My husband's mechanical valve, which had strands and pannus on the sewing ring.
Valvular strands are not visibile to the naked eye. Strands are only detected
by TEE. |
Above is a post-surgical image of one of the five patients, after replacement of
the prosthetic valve due to strands. The entire ascending aorta, up to the arch,
had been replaced previously. For some individuals, the course of BAVD may become a difficult one over their lifetime. Active, strong, vibrant and talented people find themselves undergoing multiple surgeries, experiencing life-changing injury. They share their lives and experience with their physicians and others, pioneering the way to a better future for those who will follow them. |
Evaluation of Prosthetic Heart Valves by Transesophageal Echocardiography: Problems, Pitfalls, and Timing of Echocardiography , R. Van den Brink, Seminars in Cardiothoracic and Vascular Anethesia, 2006. |