Has anyone been diagnosed with SubAortic Stenosis

Posted by kjlang64 @kjlang64, Sep 12 6:15pm

I was diagnosed in 2010 with Sub Aortic Stenosis and had open heart surgery to repair it. In 2019 I had to have a 2nd open heart surgery because I was one of the lucky ones where it grew back. I always dread going for my yearly cardio appointments because I worry what the outcome will be.

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Janell, Volunteer Mentor | @jlharsh | Sep 28 8:00pm

Hi, @kjlang64. I am just seeing your question and notice you recently joined Mayo Clinic Connect. Welcome!

I am tagging @colleen00 and @lynnkay1956 because they have mentioned subaortic stenosis and may have information.

My understanding is that subaortic stenosis is left ventricular outflow obstruction in the area of the heart under the aortic valve. Surgery doesn’t cure it but improves symptoms. “ Up to 65% of people who have surgery do not have problems at 10 years” which is about the time yours grew back. Here is the article where I found this information if you are interested:
- Subaortic Stenosis Overview: https://www.achaheart.org/your-heart/educational-qas/types-of-heart-defects/subaortic-stenosis/
- Dr. Ammash, article author: https://www.mayoclinic.org/biographies/ammash-naser-m-m-d/bio-20053052

Mayo Clinic has a clinic trial having to do with comparing the extent of what is removed with long term recurrence https://www.mayo.edu/research/clinical-trials/cls-20209010#participating

Here is information to contact Mayo Clinic if you have questions or are interested in an appointment for treatment or second opinion. http://mayocl.in/1mtmR63

When is your next appointment? It is understandable that you would worry about what you will find out every year when you see your cardiologist. Is there a thought, or something specific that causes the most apprehension?

kjlang64 | @kjlang64 | Sep 29 6:05am

In reply to @jlharsh "Hi, @kjlang64. I am just seeing your question and notice you recently joined Mayo Clinic Connect...." + (show)

@jlharsh Hi Janell, thank you for all of the information, I just had my appointment on the 18th at the Mayo. Echo looked good but my ecg which usually just shows a left bundle block now shows Sinus bradycardia with 1st degree A-V block, Premature atrial complexes, left bundle block with secondary ST-T abnormalities. When compared to my last ecg which was taken on 08/22/2024 there are now premature complexes now present and PR interval has increased. My cardiologist has me on a heart monitor for 14 days.

Janell, Volunteer Mentor | @jlharsh | 6 days ago

In reply to @kjlang64 "@jlharsh Hi Janell, thank you for all of the information, I just had my appointment on..." + (show)

@kjlang64. Good to get your testing and appointment here. I didn’t realize you are a Mayo Cardiology patient. You may already be in their research study.

I am interested to hear how you are doing through this process. I hope you come back and update.

I know you were worried. Where is your head with all of this? What Mayo location are you at?

kjlang64 | @kjlang64 | 6 days ago

In reply to @jlharsh "@kjlang64. Good to get your testing and appointment here. I didn’t realize you are a Mayo..." + (show)

@jlharsh
I am at Rochester Mayo, I go there for cardiology and also for my eyes since I also have retinopathy. When I first went to the Mayo back in 2010 my cardiologist was with Dr Ammash and Dr Dearani was my surgeon both times. Now that Dr Ammash is no longer at Rochester my Cardiologist is now Dr Burchill. I will definitely let you know when I hear my results from doing the 14 day heart monitor. I know that I will eventually have to have the third open heart surgery but we are trying to hold off as long as possible because it will be a lot harder on me. I would most likely getting the Konno procedure done and also a pacemaker. K

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