When you receive a diagnosis that is urging you to consider open-heart surgery, making the decision for surgery and selecting a highly experienced surgeon suddenly becomes your number one priority. Short of an emergency, no matter how little time you have, please get a second opinion, even a third. You will be putting your life in this professional's hands. You owe it to yourself to investigate all the risks and benefits, to take it all in, to discuss the decision-making with several close allies, then - most of all -- to check in with yourself and to honor your own gut feeling. Two years ago, to weigh the options for a valve repair or replacement, I pursued three opinions. After deliberating with internationally known experts at the Mayo Clinic about my particular congenital heart defect's progression, I sought referrals from other health professional friends. I went online and found a support group for my rare congenital tricuspid valve irregularity, Ebstein's Anomaly, which provided me with firsthand patient reports on the well-known surgeon at the Mayo Clinic plus several more. Through professional colleagues I was referred to a surgeon to talk to at the Cleveland Clinic, another institution highly revered for its cardiac surgery. And last, after faxing the Mayo Clinic's 15-page test results yet again, I spoke with a noted cardiac surgeon at Boston's Brigham & Women's Hospital. The result? Mayo Clinic in Rochester, MN, had been offering the recommended surgery route for Ebstein's Anomaly, based on a now-retired brilliant surgeon's technique, for twenty-five years. The current Mayo surgeon had studied at this man's side for ten years before his mentor retired. Now he was the experienced surgeon for this particular operation. Together they have completed 500 tricuspid valve repairs or replacements for rare Ebstein's. My conversation with the surgeon at the Cleveland Clinic confirmed that he would take a similar approach. The Brigham & Women's Hospital surgeon talked about an entirely new, experimental approach. I was jarred and confused by this view. When I reported the Boston approach back to the Mayo surgeon and adult congenital cardiologist, they replied: "Yes, we know of this procedure but it is still considered in the experimental stage and we would not recommend it. We stick by our original proposal for you." While it might be upsetting to become temporarily confused while pursuing second opinions, you owe yourself a broad perspective from which to make such an important decision. Tips about second opinions: 1. Get over being shy. Doctors are used to this. 2. Be prepared. Have copies of all test results ready to fax or to show to the second opinion surgeon, even though they may want to run their own tests. 3. If you are in a managed care health insurance situation, go beyond the approved list to get an out-of-network second opinion. It will be worth the money even if your insurance won't pay for the visit. 4. Ask the surgeon how many procedures he or she, and their team, perform each day. Check if the answer compares favorably with national statistics at www.healthgrades.com. When a team works together often they are in sync, and smoothly speed along the operation's progress. 5. Ask the surgeon if he or she prefers to have patients on a heart-lung machine during surgery or "off-pump," then weigh the reasons for their preference. 6. Write up your list of questions and ask permission to tape record the meeting. Ask your caregiver, a good friend or a family member, to accompany you to the consultation. Most physicians will agree to being taped, but for those who won't, remember also to bring a notebook and pen. This article is excerpted from the forthcoming book, OPEN HEART COACH: The Heart Surgery Home Recovery Planner For Patients and Caregivers by open-heart surgery thriver Maggie Lichtenberg, PCC. Foreword by Kathleen Blake, MD. Copyright 2005 by Maggie Lichtenberg. All Rights Reserved. |
