Aortic Aneurysm with only Mild Aortic Stenosis

[Grateful]

Hi Everyone,

This is my first post to the site, though I've been soaking up lots of information from here for weeks now. On that note, thank you to all of you for all the helpful stuff!

So, here goes...I am a 42 y/o congenital, bicuspid aortic valve patient. My condition was found when I was 5 y/o, I had a heart catherization at 12 y/o to diagnose severity (from what I can recall about having the procedure), and I've been followed with echocardiograms throughout my life. My stenosis and regurgitation were found to be mild after the catherization, and they have remained mild since. But, three years ago my cardiologist noted I had developed an aneurysm in my ascending aorta even though my stenosis itself is still mild. Presently, my aneurysm measures 4.02 cm and I've been placed on a beta blocker to try and keep it stable for awhile. But, my cardiologist has stated that since my aneurysm will likely be the cause for needed surgery, that means my valve will have to be replaced at the same time. He said if they did the surgery now to repair the aneurysm, my valve would be spared since it's still pretty functional. However, the cardiologist also said my aneurysm should not repaired now since the risk of surgery is greater than the aneurysm rupturing or tearing in it's present state. Truthfully, I am feeling VERY frustrated by this situation. While I am grateful for the option to fix my diseased heart, I am saddened by the notion that I will have to replace my valve long before I would likely have needed to because of the aneurysm.

Has anyone else experienced this same situation? Anything you would like to share about your experience would be greatly appreciated.

Lisa

 

[ElectLive]

I replaced my valve early because of an aneurysm. It stinks, no getting around it. But my situation was different. My aneurysm was 5.0 with rapid growth, doing nothing was riskier. It's a little strange showing up for a 5 am open heart surgery without any symptoms, but medically speaking, it was time and I have no regrets.

Your situation seems much tougher...less definitive. I would recommend surgeon input for sure, relative to not just timing, but other issues to consider. For instance, sometimes they find things during the surgery that can impact the valve.

I'm sorry I can't speak more to your specific situation, mine was very different. There are lots of folks here that probably can, though. Best wishes.

 

[Grateful]

Thank you, for the reply Electliv! I'm happy for you that you are in a good place with the timing of your surgery. My cardiologist did mention, as in your situation, that if he sees my aneurysm go in to a state of rapid growth then I would need to go in for surgery at that time; even if it has not hit 5 cm yet.

A couple of questions for you.....was your stenosis mild at the time of your surgery? Also, what do you mean when you say that they can "find other things during the surgery that can impact the valve"? What kinds of things might you mean?

Thank you!

Lisa

 

[camgough]

Hi Lisa,
Last May I found out I was bicuspid and had an aneurysm all at the same doctor visit, I was 30. I had no symptoms, but had right bundle branch block and high blood pressure, so an echo was ordered and that's what found the aneurysm. Mine was 6.7cm when it was found, which is extremely large. The tests showed my valve was actually working well and 2 surgeons said they would try the valve sparing aortic root replacement procedure. This is what I had in July, 6 weeks after the discovery of my "birth defect". It is a complicated procedure, but in the hands of a good surgeon is very successful and has good long term results so far. As a side note I would have chosen a mechanical valve if mine could have not been saved. No surgeon will guarantee they can save a valve, anf things they may come across in surgery could be the thickness of the valve, shape, more deterioration, etc....all things hard to see on an echo.

I am glad I had this procedure, but I do know that I will likely be in need of a valve replacement in the future as my bicuspid valve wears down. If you think blood thinners for life is OK, then go for a replacement, or do as I did and know there MAY be another surgery down the road, but live many more years without blood thinners. Most bicuspid valves last in people for 45-60 years, so who knows what might be around in those years (trans-catheter) for anyone??

I hope this helps. Personal message me if you have any questions.
Cam

 

[ElectLive]

A couple of questions for you.....was your stenosis mild at the time of your surgery? Also, what do you mean when you say that they can "find other things during the surgery that can impact the valve"? What kinds of things might you mean?Lisa

No, my stenosis was moderate at the time of surgery, and approaching the severe threshold. Without the aneurysm, it was predicted I would have been fine with the valve for several years. I had significant worsening of both the stenosis and the aneurysm from previous echo. Not that this will happen to you, but as my aneurysm approached the surgery critical stage, the stenosis did as well, just not as urgently.

I'm glad Cam responded above, and he did a good job covering also your second question to me. One "evaluate during surgery" issue specifically discussed with my surgeon was the possibility that he might have needed to replace my root, in addition to my ascending aorta aneurysm. This affected some of the risks associated with the mechanical versus tissue decision. So, my point was, even if you defer the valve, you and your surgeon may likely plan for it just in case.

There's been a few recent threads on aneurysms, one of them mine. It sounds like you've been checking things out already, but if you need any links or further info, just keep asking.

 

[ElectLive]

Mine was 6.7cm when it was found, which is extremely large.

Cam - Wow! Sorry, I guess you get that a lot, huh?

 

[Jason]

My valve was replaced as a result of needing to replace my aneurysm, as well. My aneurysm was 5.4cm, and my valve was mildly stenotic approaching moderate. When the surgeon said that with my valve deteriorating at the present rate I would definitely need another surgery, I chose to change it out at the same time as the aneurysm. So far so good!

 

[skeptic49]

Good thread. In my case, the question is which problem will trip the surgery wire first...the AV stenosis or the size of the aorta.

Jim

 

[green881]

I had AVR 23 years ago due to severe BAV stenosis calsified. Recently ascending aortic dilation was found 47mm in diameter by CT. It could be mildly dilated when the AVR was performed. According to a surgical strategy aortic dilation smaller than 45mm in diameter would not be repaird when AVR is needed. I don't know why. When the diseased aortic valve is replaced, I think it would be better to keep the aorta from further dilation by a proper measure. Please check with your specialist if a wrapping method is good for stopping the dilation. Aortic dilation of BAV patients has been frequently found to be progressive even after AVR. You can find the information by Internet search in google.

 

[Grateful]

Thank you Cam! Good information and very helpful. =)

 

[Grateful]

Great information Electliv! Thank you. My cardiologist is thinking that severe leakage may become a problem for me as the aneurysm progresses and is why I will likely need a new valve at the time of surgery.

 

[ElectLive]

Glad to help. You've found a great resource in this community, and it will definitely help that you're already starting to research and prepare.

 

[WandaW]

Hi, I had this situation , my aneurysm was a 4.7 and I was told that they operate between 4.5 and 5 ideally. I am 52 and well past the child bearing years so I have a mechanical AV and am on Coumadin. It is going well with the Coumadin and I feel great. I too felt very good walking in for surgery, it was surreal to know what I was showing up at the hospital for. I am hoping that this will be my only OHS, but if I am not that lucky, I do know I can do it and hopefully they would have perfected the operation more.