Severe stenosis

I am freaking out. My cardiologist told me the results of my echocardiogram. He told me that I have severe hardening of my aortic valve. And because I have a bicuspid valve I will have to have open heart surgery to replace or repair the valve instead of catherization. I am so scared. I am afraid of the horrible pain and or dying. What are the odds that this will go well? Any information or help would be greatly appreciated. I am just 65 this year. Barely a senior and physically healthy other than this faulty heart.
Does Dr. Natale do aortic valve surgery?



Edited 2 time(s). Last edit at 09/09/2019 06:35PM by amyorca.

Can't imagine how scary that is. All i can say that a friend had 4 valves replaced in one operation about 10 years ago (in his 60s). It was very successful and recovery was speedy. His life since has been fine as far as his heart valves go.
Best wishes!

Hi amyorca, the first thing you need to do is relax and know that you're not going to die from a creaky aortic valve or the surgery to fix it. :-) I know, I know, that's easy for me to say, but the truth is thousands of people undergo successful aortic valve replacement surgery every year all around the world. The five-year survival rate is an overwhelming 95%, with almost all those people resuming normal lives and not enduring any sort of horrible pain in the process. The other 5% who don't fare as well tend to be sicker and older than you with multiple other problems.

Yes, it's open heart surgery, so there's going to be a few days of definite discomfort, a few weeks of general discomfort, and probably a few months before you're back to 100%, but it's not the end of the world you're imagining right now.

Natale isn't a cardiac surgeon so he doesn't do aortic valve surgery. So the immediate tasks ahead of you should be 1) get a second opinion before doing anything, and 2) find the best cardiac surgeon you can. Just as with ablations, that means the surgeon who lives, eats and breaths valve replacement surgery. Where do you live? Maybe we can help you find that person.

Don't know if what you have can be done with a catheter, but Mick Jagger just had a valve replacement - transcatheter aortic valve replacement (TAVR). If you can do it this way, recovery would be a lot faster.

I believe she would have to get into a clinical trial to do TAVR since she has a bicuspid valve. Transcatheter would be a no-brainer if she had a normal tricuspid valve but she's one of the (un)lucky 1%.

The Dr. said that I couldn't have catherization because of the bicuspid heart valve. He said that it isn't indicated in my situation. I could probably deal with it better emotionally if it wasn't such a traumatic operation. I wonder how I am going to survive this. I am thinking I should get a second opinion. Does anyone know of a good heart surgeon in the Seattle area?



Edited 1 time(s). Last edit at 09/10/2019 02:11AM by amyorca.

Consumer Reports ranked the Swedish Medical Center as among the top 15 hospitals in the country for cardiac surgery. It's the only hospital in Washington to make that list, so I would have a look at these guys. I would find the most experienced one of the group.

Thank you Carey. I hope my Dr. will refer me to them. I will research this. Woke up in the middle of the night with a panic attack.

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amyorca
I hope my Dr. will refer me to them.

Does your insurance require a referral? If not, just pick one and call to make an appointment yourself.

Thanks Carey, I made an appointment with Dr. Samuel Youssef at Swedish today. Thankfully they accept my insurance and are in network.

Excellent! At least now you'll get a good second opinion and have a plan for moving forward. Keep us posted, okay?

Amyorca, I was in Swedish for my first attack of afib along with a broken back (long story) in March of 2017.
I didn't have any of the doctors listed. I believe that I received excellent care. The nursing staff was very knowledgeable and compassionate.
I didn't like the beds because they used an air-filled mattress to keep them moving in order to prevent bed sores.
They took Medicare and AARP for insurance--I didn't have to pay a cent! I'm sure my stay wasn't cheap.



Edited 1 time(s). Last edit at 09/10/2019 09:52PM by Jim Benton.

I just read an article [www.cathlabdigest.com] . study at LOS ANGELES (June 20, 2019) - A new analysis conducted by investigators at the Cedars-Sinai Smidt Heart Institute shows for the first time that patients with a common heart defect who undergo catheter-based valve replacement procedures have the same survival and complication rates as patients without the defect who undergo the same procedure. This is good news, however not sure whether cadiac surgeons are performing this procedure yet. Would be much less invasive and the recovery much easier.

That's what George was talking about earlier... TAVR and all. But you have a bicuspid valve, which eliminates you as a candidate for that procedure, at least for now. He pointed to a trial where they were doing TAVR on people like you with bicuspid valves and had good results. But it's only in trials so you would have to either get into a trial now or wait for the procedure to be approved. I have no idea when that approval might happen.

Maybe the discussion you need to be having with your doc is: Can I wait to decide, and if so, how long?

Not sure if I have time to wait for the procedure to be approved. I am feeling pretty worn out and have felt pretty awful all summer. They said severe stenosis because of the bicuspid valve. If it was tricuspid it wouldn't be labeled severe. Not sure what that means. The cardiologist literally spent 5 minutes telling me this news.



Edited 1 time(s). Last edit at 09/11/2019 04:32PM by amyorca.

I went to Dr. Alfredo Trento at Cedars Sinai when I was faced with mitral valve surgery. I was impressed. Cedars Sinai is rated third in the country for valve surgery from my research. My situation was less complicated and he recommended a transcatheter procedure rather than open heart. Yours is more complicated but if you want to consider traveling for a second opinion, that is a place to consider.

Thanks Daisy, That is the hospital that was doing the study apparently. I'm not sure if they are in my network for my insurance. I will look into it.

Now I am confused. I called my cardiologist's office yesterday to find out details of my echocardiogram. My husband is a retired nurse and he kept asking me what my ejection and regurgitation percentage was on the test. I talked with the nurse and she told me that my ejection percentage is 58% which is good. Normal being between 50 -70%. Also my heart is not enlarged. What did show that I have moderate stenosis of my aortic valve. That was the only problem thus far as far as I can tell from what the nurse said. The Dr. did tell me that because I have a bicuspid valve it is deemed to be severe. And also that I need to have a Tee and Catherization for more diagnostic testing. Then I would have to see a surgeon to get set up for a valve replacement. Because of the bicuspid valve I will have to have open heart surgery.
My question is if my heart is still functioning other than afib then why this drastic decision? My Dr. Has been in practice for 25 yrs. and is considered to be a good cardiologist. Basically at this point I am googling everything and hoping I can get some advice or other people's experiences to fully understand what is going on.

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amyorca
My question is if my heart is still functioning other than afib then why this drastic decision?

Because if you wait for the damage it causes to progress that damage can't be undone. It will lead to enlargement of your left ventricle, and that will cause your ejection fraction to start dropping. The end result will be heart failure.

But by all means get a second opinion before you do anything.