Brian's Journal

Rob Sparling  Brian, welcome. You are in the right place. We are here to help and we all have been where you are now. Be patient, be confident, take your time. Get smarter. Get the most experienced team possible and balance the timing. “Like having a flat tire on the highway, you can roll on it for awhile before damaging the rim.”

Surgeon reviews are above. (Upper right across the top.). We all have journal entries to read.

Start up now. I suggest no evening reading (get plenty of sleep and rest) and no youtube videos (no need to see things you can’t unsee).

You are going to be just fine! Long life ahead of you.

I had bicuspid aortic valve and regurgitation. Many of us do/had.

Buckle up! You can do this (when the time is right).

Steve Farthing  Brian, One place to check surgeon outcome stats is https://www.checkbook.org/surgeonratings/ . Good health to you!

Nicole DuPont  Hi Brian - to address one part of your question from my perspective (not a doctor’s), I saw a cardiologist regularly through my life with the focus being the force of the regurgitation (mild, moderate, severe) and the measurement of the ascending aorta/root dilation to determine when to replace the bicuspid aortic valve and repair the aneurysm. Now, my regurgitation is severe and the dilation measures 4.5cm so I’m heading to surgery next month. I would recommend knowing where you stand with those measurements as you talk to doctors or get a second opinion.

Rob Sparling  Steve, thanks for posting that! Wasn’t aware of that resource! Learning something new every day. Brian, I started with rankings by US News and World Report where hospitals are ranked and drilled into docs from that side of things. Statistics are published by STS as well. (Search for Society of Thoracic Surgeons database.). It is worth mentioning your cardiologist is the person to get to know well first because they will be instrumental in getting you to the right specialist at the right time. My ongoing relationship is and will be with my cardiologist (though my surgeon is a rock star, too).

Herb Greenberg  Brian, I've been living with a bicuspid valve for 40+ years and I'm 67. I have had it monitored annually since then. More recently, I'm on the every-three-month schedule, because of some left ventricle expansion and the expanding aneurysm in my ascending aorta. If I had any advice it would be to make sure your doctor recommends a baseline CT or MRA of your for a baseline for the size, in addition to what they find in the echo. Key to that is the way it is measured. Busy radiologists sometimes measure differently than surgeons. Multiple opinions doesn't hurt. Over the years I've been told by different cardiologists in different cities (I've moved a few times) that I have nothing to worry about to I'm surgical. Thankfully, I'm not...YET. Everybody has different opinions; some of us here prefer to go to places where they do hundreds if not thousands of these surgeries a year. When your numbers look "close" a good cardiologist will refer you to a surgeon. The more you research, the more you will learn. The good news is, you have been diagnosed. Some people never are, until they wake up one day and find out they need surgery. PS: Many many years ago I had a doc - head of cardiology at NYU, if I recall - who told me to stop exercising. Needless to say, I didn't. I'm still alive and in fact over the past year have stepped up my exercising, knowing that surgery is likely at some point. That's why you need multiple opinions. Last point: If you find an arrogant and/or rushed cardiologist who seems preoccupied and uninterested in your situation, run the other way.

Steve Farthing  My experience is that the cardiologist typically refers you to a surgeon affiliated with the same hospital. There is a strong bias to 'keep it in the family' due to the huge $$$ involved. If you want to see a surgeon at a different hospital, there could be delays getting your records transferred.