Mended Hearts Open Forum

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  • 1.  Surgeon Recommendation for a Sinus of Valsalva Aneurysm or Aortic Aneurysm/Valve Surgery

    Posted 01-27-2020 15:44

    I may need surgery soon for a sinus of Valsalva aneurysm.  I heard this is somewhat rare and I am looking for the best surgeon possible.  We are only given one life and the surgeon will have a great effect on how long I live and the quality of my life.  I do not mind traveling a distance to have the best possible surgeon.

    Is there a cardiologist and surgeon someone would recommend for this in the:

    1. Allentown, PA area in case I need emergency surgery
    2. Pennsylvania, Ohio, New Jersey, New York, Maryland and Surrounding Areas
    3. Anywhere in the US

    If you did not have sinus of Valsalva aneurysm surgery, then any recommendations on the best cardiologist and surgeon for aortic aneurysm and valve surgery may be close.

     Thank you greatly.

    John



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    John Walters
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  • 2.  RE: Surgeon Recommendation for a Sinus of Valsalva Aneurysm or Aortic Aneurysm/Valve Surgery

    Posted 01-27-2020 21:22
    I have had great results from my valve surgery in 1982 here in Houston, Texas!!!







  • 3.  RE: Surgeon Recommendation for a Sinus of Valsalva Aneurysm or Aortic Aneurysm/Valve Surgery

    Posted 01-28-2020 07:04
    John, aneurysms of the aortic root (the same as the Valsalva) and ascending aorta are fairly common, especially for those of us with a bicuspid valve. I have both and I'm meeting Tuesday with Lars Svensson at the Cleveland Clinic. (I live in San Diego.) There are quite a few good surgeons in your neck-of-the-woods, especially NY and I believe at U/Penn. Others here will have strong opinions. I would seek someone who focuses on aorta repair and has high volume; ditto for the facility.

    Best of luck!
    Herb

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    Herb Greenberg
    San Diego CA
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  • 4.  RE: Surgeon Recommendation for a Sinus of Valsalva Aneurysm or Aortic Aneurysm/Valve Surgery

    Posted 01-28-2020 08:42
    Herb, thank you for your reply.  It is greatly appreciated. 
    Are you meeting with to discuss an imminent surgery of the aorta?  Did you choose Cleveland Clinic as they are rated the best in heart surgeries?  How did you end up with Lars Svensson?  Would you have surgery in Cleveland and then travel back to San Diego when you feel well enough?  Hotel stay in Cleveland after the surgery?
    Sorry for all the questions but this has just been dumped on me and I am trying to learn.
    Thank you.
    Best regards,
    John

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    John Walters
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  • 5.  RE: Surgeon Recommendation for a Sinus of Valsalva Aneurysm or Aortic Aneurysm/Valve Surgery

    Posted 01-28-2020 08:53
    I'm going for a series of tests, a meeting with a cardiologist and then the surgeon - it's their protocol. And I'm now in the surgeon-shopping phase. I chose Dr. Svensson because one of my cardiologists here used to be there and personally knows and recommends him, as does another former CC executive, who is friends with my brother. And, yes, I'm seriously considering them because of their reputation. The more complex my situation gets, the more I will consider CC. I'm going there to get a thorough review. And yes, I would have surgery there and travel back here. They get a good deal of out-of-state/country business and plenty of folks have reported on their experiences. Bottom line is that it's a machine that apparently does what it does well with a very low mortality rate. There are a ton of videos and presentations on their website - actually, under each surgeon's profile. I've talked to people who have used various surgeons there, and they have all been pleased. It doesn't mean you will not have possible complications, etc etc. As for hotel - there are plenty nearby, based on my research. We will stay in one that is attached to the hospital. That's a huge attraction for my wife, who will likely be stressed and would prefer easy access. I'm also possibly considering Mayo, because of a family connection, but also a surgeon in San Francisco, because of the closer proximity. But with the rate of growth of my aortic root and AA, it's time to kick it up a notch. Cleveland operates at 5.0 cm, unless if there are other circumstances, such as related valve issues that need attention. You need to be your own advocate on this and it sounds as though you are taking the right approach and asking the right questions. Feel free to reach out anytime. I have had the luxury of researching this and being monitored for years. The folks here who have had the surgery will be a good resource, as well, likely better than I am but we are both on the same glide glidepath.

    Best,
    Herb

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    Herb Greenberg
    San Diego CA
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  • 6.  RE: Surgeon Recommendation for a Sinus of Valsalva Aneurysm or Aortic Aneurysm/Valve Surgery

    Posted 01-28-2020 10:54

    Herb, thank you greatly for your information and thoughts.  We think a lot alike and your email is extremely helpful. 

    This is your first heart surgery, correct?  What was your rate of growth? 

    Via Echo, my aortic root aneurysm grew in two years from 3.4 to 4.0.  My CAT scan with contrast is this afternoon.  I read on CC's website that family history also affects their surgery decision so I will be trying to determine what specifically my dad and maternal grandfather died suddenly of due to heart problems 35 years and 60 years ago.  I also have some of the symptoms of Marfan Syndrome which I just found out thru my research a few days ago.  This may also affect when to do surgery.

    When I was diagnosed with an aggressive cancer six years ago I did significant research, received great doctor recs through support groups, traveled to be examined by the top doctors I found, asked every doctor who they would have do the surgery if they had my cancer at both their hospital and anywhere in the world (really great question) and ended up with what I strongly believe is the best doctor for my specific cancer.  I thank God for him as I am five and a half years cancer free and the doctor preserved both my life and the quality of my life.

    I feel I am now starting all over again with this heart condition and greatly appreciate your thoughts and experiences as you go down this road.

    Best regards,

    John



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    John Walters
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  • 7.  RE: Surgeon Recommendation for a Sinus of Valsalva Aneurysm or Aortic Aneurysm/Valve Surgery

    Posted 01-28-2020 11:27
    My pleasure. This will be my first and hopefully last heart surgery. My rate of growth was from 4.6cm to 4.9cm in six months, after being stable for quite a long time. Surgeons often cut the radiology measurements differently than radiologists, so I will be intrigued to see what CC says. Based on what you say I would get multiple opinions, including as high-end as you can get.

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    Herb Greenberg
    San Diego CA
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