Hello again

[themalteser]

Hi all,
Happy new year! It's been over 1.5 years since I last posted. I am really sorry everyone, but tried not to feed my anxiety and made my very best to stop researching over the net. However, I am due my yearly check up next week and I thought to say hello. My aorta last year was 46-47mm and my bicuspid valve was slightly leaky. I am hoping that everything has stayed the same, but, I am now getting very nervous. I Just need to vent a bit with you, who can understand me. My wife learned how to ignore me when I'm like this! I've been doing great though anxiety has persisted, but learned to manage it. Getting closer to my appointment however, I am having some really weird thoughts.

Well I have to wait and see, wish someone could tell me everything will be fine! But I have to be patient and stay calm...

Best wishes to everyone
Brian

 

[skeptic49]

Hi Brian...it's good that you are getting a check up...everything can work out as long as you stay on top of your disease. Good luck.

 

[francie12]

Good luck, Brian. I hope you have good news that your measures continue to remain stable. Best wishes.

 

[epstns]

I know the feeling, Brian. I went through many years of it..

Just remember - everything is fine until they tell you otherwise.

 

[tom in MO]

Hi all...Well I have to wait and see, wish someone could tell me everything will be fine! But I have to be patient and stay calm...

Hey Brian, Everything will be fine : ) We've all waited and made it through surgery. When you get worried, try and think about the fact that your heart could go for years before surgery is needed. For me, when I get anxious I turn to rote prayers, a walk around the neighborhood or a good engrossing movie. Good Luck!

 

[themalteser]

Hi everyone - thank you very much for your encouragement. I really appreciate it.

 

[valdab]

We have similar statistics, and it appears a similar outlook. I lurk around in the shadows here but try not to get too suckered in as it feeds my anxiety.
I had my check up early December. My 46cm remains the same, as it has done since diagnosis four years ago. I'm hoping that yours will too.

 

[valdab]

whoops. I do of course mean 46mm. That would be one big aorta....

 

[cldlhd]

I'm beginning to think maybe I'm rushing in. My root is 4.8 cm and my ascending is 4.7cm but I'm having them replaced in 3 weeks .

 

[themalteser]

That's funny Valdab, that will definitely be a one heck of an aorta we do share exactly the same statistics. Interesting! What did doctors tell you? ... I am so anxious, can't get off the net searching now!

Cldhld, are you facing surgery because of your aorta only or your valve aswell? I'm sure that each individual vary erc dependable on height and other factors. For example, my root is 46mm but my ascending is 37mm. Not sure whether it make a difference.

 

[themalteser]

Pa my diagnosis was 4 years ago aswell Valdab and remained the same since.

 

[dornole]

I just had my follow up today and echo was UNCHANGED. Whoo hoo! I even get to go back to 1 year appts since things seem to stabilized at their current level instead of deteriorating rapidly like we feared last January. So I will send you some good luck to carry you into your appointment. Going into my 13th year now. You'll be able to handle whatever comes.

 

[AZ Don]

Brian,
Waiting is generally the worst part. Once you have it someday you will be glad to have it over with and probably find it was not as bad as you thought. Just keep in mind that you are lucky to have a problem that can be fixed.

cldlhd,
You are having an aneurysm graft at 4.7-4.8cm because you are also having a valve replacement, right? From the 2014 AHA/ACC Guideline for the Management of Patients With Valvular Heart Disease, http://content.onlinejacc.org/article.aspx?articleid=1838843 (p e89)

Replacement of the ascending aorta is reasonable in patients
with a bicuspid aortic valve who are undergoing aortic valve
surgery because of severe AS or AR (Sections 3.2.3 and 4.3.3)
if the diameter of the ascending aorta is greater than 4.5 cm.
(Level of Evidence: C)

I'm a little surprised the level of evidence isn't stronger. I for one would rather have the aneurysm addressed sooner than wait too long. I had my done as soon as I found out about it, but I was already at 5.0 - 5.1 with BAV, and that was before they raised the recommendation to 5.5cm, for those with BAV but not in need of a valve replacement.

 

[cldlhd]

My valve is supposed to be repaired,no stenosis and only a small amount of leakage. Surgeon says the only cause for surgery is the aorta and he says it's not absolutely necessary and I'm on the cusp of needing it done. The ascending aneurysm is starting to stretch the proximal arch and I figure that the constant backflow of the leak is likely to further damage the leaflets so I decided to get it over with.

 

[skeptic49]

My valve is supposed to be repaired,no stenosis and only a small amount of leakage. Surgeon says the only cause for surgery is the aorta and he says it's not absolutely necessary and I'm on the cusp of needing it done. The ascending aneurysm is starting to stretch the proximal arch and I figure that the constant backflow of the leak is likely to further damage the leaflets so I decided to get it over with.

My cardiologist (and my surgeon too) is much more proactive about this. Here is what my cardio wrote to me:

After much population-based research, it has been determined that an aortic root or proximal ascending aortic diameter of ≥4.5 cm portends elevated risk of further dilatation and aneurysm formation over the long term. Thus, it is recommended that in bicuspid aortic valve patients whose aortas are larger than that, the proximal aortic root be replaced as well. It’s more of a gray zone below 4.5, but I’ve cared for patients who’d had smaller aortas at the time of bicuspid aortic valve replacement, and then a few years later, needed to go BACK to the OR for replacement of an ascending aortic aneurysm. That is clearly a sub-optimal situation.

With you proximal ascending aortic measurement of 4.6 on your recent CTA, it is most prudent to replace both the valve, root and proximal-most portion of the ascending aorta.

 

[themalteser]

This is all really great information. I believe that there seem to be a slight dis ambiguity of the actual surgery triggers in correlation to the position of the dilation. The root is slightly larger by structure and therefore 46mm in root might not be that concerning (in fact, in some literature this is considered mild dilation) . The normal root size I read previously goes up to 4.2cm. The ascending aorta, however, above the root is much more smaller in diameter and hence a 46mm dilation can indeed be significant for some. My root is(or was) 46/7mm in diameter, but my ascenda is 37mm. Valve still works ok and I think so far it's prudent to conserve. Maybe? I don't know, but this is how I think I understand it. Please disagree if you know otherwise.

Also, the other issue might be UK vs USA. Correct me if I'm wrong, but in the USA, hospitals are paid through insurance for each procedure and hence its a 'profit' seeking organisation. Whilst in UK they operate different, through commissioners etc. so what I'm saying is that, the USA might have a much more conservative approach to generate more profit earlier, whilst In UK they try to wait as long as possible so not to spend money earlier. Maybe it doesn't make sense, but, to give you an example, I went to a UK hospital to check an issue with my stomach, they carried on giving me small solutions bit by bit. Then I decided to go private and that's it, they done a sigmoidoscopy, a CT scan etc, because they get paid through insurance.... Sorry gone on a bit, but I'm saying that perhaps USA has a much more conservative approach for this reason? Maybe? I much prefer USA approach of course, as it will address the issue there and then.

 

[themalteser]

Basically in UK they can't afford to do it earlier! That's a scary thought! Well hopefully you can prove me wrong.

 

[cldlhd]

Two ways to look at that,hospitals in th U.S. definitely have a profit incentive ,however private insurance companies certainly reserve the right to refuse to pay for a procedure they consider " elective". So in the UK you have a government bureaucrat trying to save money here in the U.S. we have insurance bureaucrats trying to do the same.

 

[themalteser]

That's very true! the hospitals here are in a lot of pressure to save money etc, and you could see it from the quality of treatment you receive. I'm not saying it's bad, but not as good as private hospitals. US are driven by insurances, but ultimately, if a surgeon says it's time, I beleive that the insurance can't really turn around and say no! ... Correct me if I'm wrong though.

 

[cldlhd]

I'm not an expert but I believe a surgeon can push for it most of the time. I can definitely see how getting to choose which hospital you give your business to does lead to better facilities but obviously you can only choose from amongst those who accept your insurance.