New information - should I change plans?

[GSman]

Hi All,
Last year I (46 year old asymptomatic male) was diagnosed with a bicuspid aortic valve and aortic aneurysm (4.9cm in CT scan). My aortic valve has moderate regurgitation and moderate calcification. My surgeon told me to get an aortic root replacement and I got scheduled for surgery on May 3rd. In the pre-test for the surgery the aneurysm was still at 4.9 cm (unchanged in the last 6 months) and the diagnosis was changed to a tricuspid valve with two leaflets calcified - looking like one. My understanding is that for people with tricuspid valve the threshold to recommend surgery is at 5.5 cm instead of 5.0cm for bicuspid patients. I am also quite tall (6ft 2inches) and fall below the surgery threshold in some of the other threshold calculations.
Should I postpone the surgery and monitor symptoms and aneurysm closely? I know that I will need surgery at some time, but the later I do it the less likely a second OP will be and the less warfarine I will take in my life.
Maybe I am just scared and trying to chicken out...

 

[pellicle]

Hi

well in my non medical opinion, you seem to worried (naturally) and wishing to delay (also naturally). I believe that the younger and healthier you are when you have heart surgery the better your chances are recovery.

I don't think you'll be getting younger or healthier

..and the diagnosis was changed to a tricuspid valve with two leaflets calcified - looking like one. My

still ... not good

understanding is that for people with tricuspid valve the threshold to recommend surgery is at 5.5 cm instead of 5.0cm for bicuspid patients.

its a bit hair splitting ... if you ask me

Should I postpone the surgery and monitor symptoms and aneurysm closely?

to what benefit? Are you for instance in the middle of something that a month or a year would make a difference to?

will your health deteriorate in the mean time?

and the less warfarine I will take in my life.

warfarin is not like some insidious toxin that gradually poisons you. Its not like Arsenic which is going to gradually build up in your body and kill you.

I see many reactions against warfarin and I am sure its from:
- ignorance (both in the medical world and in the public domain)
- misconception of "bleeding to death" risks
- exaggerated views of its effects long term (which have somewhere between little or no scientific verifiable evidence to support them).

As was stated on another thread, the most serious side effect of warfarin is that it will keep you alive long enough to perhaps need other surgeries.

Maybe I am just scared and trying to chicken out...

that's my feeling

 

[tom in MO]

Sounds to me you need another opinion from your doctors given your new results. Being asymptomatic, it is hard to believe it is time for major surgery. Talk to them about whether or not being tricuspid makes a difference.

You are asymptomatic, as was I, but you may really be symptomatic but in denial...I was. I did not realize until after the operation how my stamina had fallen. IIRC, the trouble with anuerisms is that they can get larger gradually or not so gradually and you will be dead if it bursts.

 

[Bracken]

Definitely get a second opinion, but be prepared to move forward as well. You will likely need surgery at some point. If you're on that threshold I would opt to do it sooner rather than later. From my own personal experience, and reading the experiences of others, the younger and healthier you are the easier the surgery and recovery.

 

[kimcdougc]

Hi GsMan,
I have had (2) solid months to think about surgery. It takes time to absorb all the information you get. I would say read this forum. It has brought to light, for me, ...that sooner is better as far as the surgery goes. Do your research and you will feel much better about having surgery after you do. There are a lot of "feelings" that go along with this journey. Expect them and embrace them. Good luck with all your education and feelings about having surgery done.

 

[sood]

I am in your exact shoes and much younger, I'll hopefully turn 36 in may. My surgery is on may 3. I have a 4.8/4.9 cm aneurysm in my ascending aorta. They also believe my valve is bicuspid but they aren't sure, they think it might be a malformed tricuspid valve. I found out about the aneurysm 2 years ago. In the past few months I've started to feel chest pain, very infrequently. I told them it was go time and scheduled surgery.

Hi All,
Last year I (46 year old asymptomatic male) was diagnosed with a bicuspid aortic valve and aortic aneurysm (4.9cm in CT scan). My aortic valve has moderate regurgitation and moderate calcification. My surgeon told me to get an aortic root replacement and I got scheduled for surgery on May 3rd. In the pre-test for the surgery the aneurysm was still at 4.9 cm (unchanged in the last 6 months) and the diagnosis was changed to a tricuspid valve with two leaflets calcified - looking like one. My understanding is that for people with tricuspid valve the threshold to recommend surgery is at 5.5 cm instead of 5.0cm for bicuspid patients. I am also quite tall (6ft 2inches) and fall below the surgery threshold in some of the other threshold calculations.
Should I postpone the surgery and monitor symptoms and aneurysm closely? I know that I will need surgery at some time, but the later I do it the less likely a second OP will be and the less warfarine I will take in my life.
Maybe I am just scared and trying to chicken out...

 

[sood]

Forgot to add that we aren't 100% sure if the valve will need replacing now since it has been unchanged for 12 years. Surgeon said 65-70% chance he would replace it. I will get an on-x valve if he does. I'm leaving it up to him, he knows I'd like to avoid another OHS but also doesn't think I should get the valve replaced if its gonna last me 10-20 more years. And if that is the case that is fine because it still might be my last OHS since the endovascular AV will probably be very common by then.

 

[GSman]

Thanks to all of you for your comments. Sold, I have the same surgery date as you: may 3rd, being in Australia they will open me up some hours before you. I also decided on the ON-X valve and conduit.
having all this planned I am still struggling with the idea of putting my life at risk in an aortic root replacement, when I have no symptoms and am just below the threshold of recommended surgery...

 

[Heart Of The Sunrise]

GSman: I am day 41 post-op with an ON-X valve w/ conduit. In addition they completely rebuilt my hemiarch. At Penn they do a procedure called Deep Hypothermic Cardiac Arrest. (DHCA). It's purpose is to minimize the risk of a stroke. I am happy to report I am doing just fine and now I am walking 4 miles per day.Best of luck on Friday with your surgery.:thumbup: Be sure to complete the pre and post-op surveys on the ON-X site. There are (2) $100 gift cards in it for you! I am doing fine with Coumadin. Looks like we are getting close to getting my dosage defined. Last test my INR was 3.2. Next test a week from Monday!

 

[AZ Don]

My situation is the opposite. From a PET scan I was diagnosed with an aortic aneurysm of about 4.7cm. A month later I found that it was actually 5.1cm and I have a bicuspid valve, so now I am a candidate for surgery. I am still learning about valves and I don't know what impact having a calcified tricuspid valve would have on any of this. When I thought I didn't meet the surgical criteria, I did some digging into the statistics. From this paper:
http://content.onlinejacc.org/article.aspx?articleid=1140497

... the risk of a dissection or rupture at pre-surgical levels is roughly 6%/year (figure 11). I have read that beyond 4.7cm aneurysms tend to keep growing, and ascending aortic aneurysms grow at a rate of 1.5mm/year (from the book Acute Aortic Disease) on average, but varies widely. So in the average case it could be 4 years before you meet the surgical criteria (similar to the situation that I thought I was in). So say you chose to wait 4 years, your odds of suffering no adverse event in a year is 100%-6% or 94%. Your odds of suffering no adverse event over 4 years is then 94%*94%*94%*94% = 78%, assuming that your risk doesn't increase. Said another way your odds of suffering an adverse event over 4 years is 22%, and you would still be facing the risk of surgery - that doesn't go away. This is how I looked at it. I can't help but conclude that the surgical standards are conservative and I was planning to be more aggressive - I was thinking surgery by 5.0cm until I learned I had a Bicuspid valve and already met the criteria. I think I saw on the Cedars Sinai website that they are more aggressive in their surgical criteria then the general standard. Still, I've seen comments by the author of the study that they had no patients with adverse issues while following the general standards. Other factors may affect your specific risk, including overall health, age, and lifestyle. Definitely something to be discussed with a trusted Dr. For my comments about my research on lifestyle (especially if you chose to wait) see: http://www.valvereplacement.org/forums/showthread.php?41543-Exercise-and-stress-with-Aortic-Aneurysm.

OHS surgery is significant and not something to rush into, but the fact is you will be facing it sooner or later. In the meantime you are faced with trying to choose the lesser of two evils and I can relate to that. Now that my situation has changed I am meeting back with my surgeon on May 7th and will have surgery scheduled as soon as possible after that.

Regarding having no symptoms. Be thankful for that. Aneurysms are different than valve issues. Typically the first symptom of an aortic aneurysm is a rupture or dissection. More often than not this is fatal. When it is not, the surgical repair is more difficult, the outcomes not as good, and depending on where you are and who is on call, may not be performed by a specialist.

Hope this helps.

Don