Aorta Stenosis

Hi therre.  Just got the results today from an echocardiogram.  It has been 3 years since my last one (due to Covid) and my EF has dropped from 67 to 49.  Apparently I have aorta stenosis and will be having an angiogram in the near future to see how bad it is. My cardiologist said it will probably end up with a valve replacement surgery in the future.  I have had my PM for Bradycardia since 2016 and I thought all was going well.  I am an active 81 year old female, and shocked at this diagnosis as I feel pretty good.  My cardiologist said my heart muscle is strong, and said he would recommend surgery, if the angiogram shows I need it, as it would be best to have it now whilst my health is still good and not wait until things worsen.  He also mentioned TAVI surgery (laproscopy) as opposed to open heart.  Good grief!  Is there anyone out there that has had this surgery with a pacemaker?   If so, was it successful? I have had a mild heart murmur probably since birth., which has obviously worsened.  


8 Comments

AVR

by PapaMike - 2022-05-18 05:45:04

The angiogram will make things a lot clearer and a lot more real, until then don't get too stressed about it. Easier said than done I know.

You say were shocked as you were active. Valve issues are very rarely related to lifestyle, unlike CABG which has a heavy link to diet, lack of exercise, and smoking. 

TAVR offers different complications when compared to open heart surgery. Whilst it may provide a lot less physical restrictions in the short term post surgery, it offers a higher risk of complications during surgery. With open heart surgery the surgeon is able to work hands on, but you have 3 months+ of sternum healing.

The PM will have zero effect on the ability to do the procedure. Theyre medical professionals and are well aware.

I had my aortic valve replaced via ohs in 2019, exactly 10 yrs and 1 day after getting my PM. Proper heart surgery will give you a real sense of balance and proportionality. I was never that bothered about my PM anyway, but after surgery I realise it is just a pm and nothing special. If valve replacement surgery was compared to breaking your leg, them getting a pm is like getting a very small splinter in your toe.

If you're not very symptomatic you'll need to have a very thorough conversation with your cardiologist in relation to the cost/benefits of surgery now if its just to get it in before your health deteriorates. If you were highly symptomatic then you'll better, if not there us a chance you'll feel worse. Its a tough decision.

I wish you the very best of luck.

TAVR

by Julros - 2022-05-18 20:57:10

You may have been born with a bicuspid aortic valve, which usually does fine until it become stiff and calcified with age. The usual symptom that triggers replacement is chest pain, and at that point, I think the only effective treatment is replacement. Yes, each approach has its draw backs. In the hands of an experienced interventionalist, I would go with a TAVR. Definitely discuss the risks and benefits of each type of replacement, as well as waiting. 

Don't forget blood thinners for life.....

by BOBTHOM - 2022-05-18 21:58:36

New techniques, procedures, and materials are being developed all the time.  Sometimes waiting makes more senses if you are not symptomatic.  The less invasive the better and easier for you to heal/recover!  Open heart being the hardest.  But don't forget, once a valve is replaced you will also be on blood thinning medication for the rest of your life and that valve will need to be replaced about every 10 years.  Most important of all, get to a major center with a doctor who has done a lot of the same procedures!!!   Good luck

New Aortic valves.

by Selwyn - 2022-05-19 12:12:09

Aortic stenosis, of the severe type,  can be associated with sudden death. It is better to get surgery early before your heart starts to reshape itself or you become a casualty. 

There may be a choice of valve. Not all valves need anticoagulation, not all valves need to be replaced in 10 years.  Some valves can be placed in site by catheters - this avoids open heart surgery.  The options should be discussed with your cardiac centre. Outcomes vary centre by centre.

Having a pacemaker has nothing to do with having aortic valve replacement surgery for practical purposes, so I would not worry about the PM complicating the issue. 

Last night I had dinner with a friend who has a replaced aortic valve ( biological, so not anticoagulated). He is still working. We did imbibe a certain amount of alcohol! I am not aware of his lifestyle being restricted at all by his cardiac condition. 

Valve Replacement and PM

by MinimeJer05 - 2022-05-20 14:46:39

Hello,

First off, I am sorry to hear that you are dealing with all of this. It sounds like you have much to think about and I must say, please try not to stress out too much about it.

I was born with a bicuspid aorta and told since a very young age that SOMEDAY I would need a valve replacement. They said it could be 15 years old, 18 years old or 75 years old. We monitored it closely (yearly echos and chest MRIs) and all things seemed mostly fine.

They noted aortic stenosis but again, said with no symptoms, to keep an eye on it.

Until Dec. of 2019, they said the numbers weren't where they wanted them to be and within 4 weeks I had my mechanical valve placed. All things considered, I thought it was a "walk in the park". Sure, the pain was unbearable immediately after, but it quickly went from being in pain, to being sore, to being back to normal. I haven't looked back or thought much about it, aside from the "butterfly" incision on my chest, which I admit makes me self-conscious when taking off my shirt at the pool/lake/beach/etc.

Got the PM placed last fall and the events surrounding that caused lots of frustration, but the procedure itself didn't seem too bad.

Blood thinners, to me, aren't that big of a deal. I get my INR checked every 4 weeks and I take my pills nightly and just keep an eye on my Vitamin K intake, otherwise, very normal life.

I was told that my valve isn't a "every 10 years" replacement, but a replacement when needed type of thing. They said some patients have the same valve for 40 years, some need a swap at 20 years -- they ultimately told me not to worry about it and to follow-up with my yearly visits.

As others have said, sudden death could be a side effect to the stenosis. Doesn't sound like a chance I want to take, if I can actively prevent it.

Try not to stress and know that medical advancements are constantly progressing forward -- some can get valve replacements through a vein and be in/out within the same day, but even the open heart ones are becoming less risky and very "standard". I know when I went in for mine, my doc told me I was going to be the easiest patient yet, a young, otherwise healthy 28 year old.

Best of luck and feel free to reach out if you need anything!

Take care

Jer

Aorta Stenosis

by clubhopper - 2022-05-21 13:48:56

Thanks to all who replied!  I felt extremely stressed about the situation today (shouldn't read the internet) and after reading all of your comments, I feel so much better.  Just waiting to hear when I will be able to get an angiogram to assess the situation, make a decision, and get on with it.

Internet

by MinimeJer05 - 2022-05-23 15:20:37

Hello,

Please try to avoid the internet when you can, unless it is "How To" videos on YouTube. Anything heart, brain or medical-related almost always results in "is fatal if you feel like X".

I too sometimes fall into the Google machine when I am feeling not the greatest and have since reminded myself to stop by these forums or ask a medical professional.

Valve replacement and surgery has its risks, just like anything else. As does PM placement, but the risks of doing nothing also must be weighed.

Speak with your doctors and cardiac team, express your concerns, listen to their advice and ultimately, make the decision that feels RIGHT for you and your specific situation.

Nobody else's situation is going to be exact like yours, so take our input and comments and just keep them in the back of your head, but don't let them (or anything else on Google) make the ultimate call.

You'll be OK! 

Take care

Jer

TAVR hands down

by PacerRep - 2022-05-24 20:33:14

I did not wade through all the comments, but TAVR is hands down the better option. I saw someone say there are more complications intraoperatively with TAVR over Open heart; I disagree with this a lot. TAVR, if you are a candidate, is much less invasive and simpler to perform. Although, you may not be, and if you are not, get a second opinion just to make sure. I'd even go so far as to demand the Sapien3 valve be used as well, its just the best one out there (I don't work for that manufacturer/disclaimer). Unbiased advice. 

PacerRep

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