BAV and Aorta!

[taranjit]

I have learnt a lot since joining VR.com some 2 months ago... I am 33 (a competitive bodybuilder, or I should now say former :-((), and know for 6 years now that I had a congenital bicuspid aortic valve.. but no one told me (not even a no. of cardiologists I have seen in this period) that my 'aorta' also needed to be watched (my aorta was in the neighborhood of 4.0cm in this period)... Thru VR.com I came across some people (including Robthatsme and then Arlys) who enlightened me about aorta as well, and Arlys sent me to a surgeon in LA area (Dr Sharo Raissi in Cedars-Sinai) who understood not only BAV but also aorta... He is the first one to tell me that my aorta will also be replaced along with my BAV... Currently my BAV is severly leaking/regurgitating (E.F. 50% approx, left ventrical 6.0cm (full) and 4.6cm (empty)), and my aorta dimensions are: root (Sinus of Valsalva?) = 4.5cm; ascending aorta = 3.8-4.0cm and descending aorta is 2.0 cm... I am guessing that my root and a part of ascending aorta will be replaced, along with my aortic valve.. Obviously I feel betrayed by other cardiologists I had seen in the past who never told me anything about aorta's condition or it needing to be watched as well.. I am surprised that while so many educated patients/recepients (like the ones here) know about these types of things, many cardiologists don't know about it.. It is now known that people with BAV also probably have a weak aorta which in some cases will also need replacement (or at the least close monitoring).. please view the following page that Arlys has already posted so many times in response to other threads like this):
http://circ.ahajournals.org/cgi/content/full/106/8/900?eaf

While I feel sad to know I have yet another problem (i.e. aorta and not just BAV), I feel fortunate to have found this sooner than later.. Now here are my couple of questions:

1) If you are BAV (or gone thru AVR), do you know what your aorta condition is?? If not, please find it out.. May be get a second or third opinion on its condition.. As little as I know about all of this, check your last echo report and if it says 3.5cm, 4.0cm or higher, you should seriously find out what that means...

2) Does anyone know if aorta surgery in general is higher risk than just valve replacement?? How much higher this risk is?? I will get my AVR as well as aortic root and a part of ascending aorta replaced... It appears from what I have been told that the risk is somewhere around 10%.. can someone confirm.. I thought once you have an open heart surgery, all procedures are more or less the same, and are about 1-4% risk.. so to me start thinking about the risk from 1% to 10% is mind boggling..

thanks everyone and please talk about your AORTA experiences during your journey with BAV (or AVR)..
thanks
taranjit

 

[Creed3]

Hi Taranjit!
I am 34 years old and just had a dissection and anuerysm of the ascending aorta aorta replaced with a graft as well as having a mechanical valve put in the aortic position. I too had to go to several different doctors to find out the extent of my problem. At first I thought I was only going to need an AVR. Later found out that I needed to have work done on the aorta. My doc told me that this surgery was a little more complicated but that I would be fine. It is just best to go to a facility that handles these types of cases on a daily basis, not a monthly basis. I was sent to Cleveland. I was told my chances of survival were 98 to 99 percent. The surgeon who operated on me was an aortic specialist. I believe replacing part of my aorta and putting in a mechanical valve took about 1 1/2 hours. The rest of the surgery was opening up the chest, hooking up to heart lung machine, closing etc...(all the prep work). My whole surgery took about 5 to 5 1/2 hours. You can read my story on the the personal story page of the site. Everyones situation is different, so my experience could be very different from what yours may be. I hope this has helped some. If you have any questions, please don't hesitate to ask.

Take Care!
Gail

 

[Nancy]

Hi taranjit-

You are having more than your share of problems right now, and I'm sorry that this is happening to you. I won't go into BAV problems, because that's one that Joe missed.

But I just wanted to let you know that one of Joe's roomates in the hospital, a man just a little older than you, had his aortic valve and dissection replaced. He looked just wonderful and went home in great shape. He was sharp as a tack, no pumpheadedness, and his pain was about par for the course. So don't lose faith, you will do just fine, and it's a good thing that all of this was discovered and will be treated correctly. What's past is past, don't obssess about it, think to the future, which has become much brighter for you.

Take care,

 

[mike anthony]

In June 2002, I had as ascending aorta anuerysm repaired. The procedure that was performed was call a "aortic valve sparing procedure". While the aorta was fixed the valve begin to leak. I went from mild insufficiency to severe in less than 60 days.So obviously the procedure did not take and I'm schedule to go back in and have the valve replaced. In your case you know that the valve is going to be replaced. Since your aorta has dialated to 4cm and will need to be watched, you might ask your doctor to repair both while they are in there. Most aorta anuerysm are not operated on until they are greater than 6cm.
I was actually playing golf after 8 weeks and doing fine, until the leak. But, knowing what I know, this second surgery should be a "walk in the park".
Just remember it's sites like these, where you know a lot of people are praying for you that makes the surgery easier.
Take care

 

[MarkU]

Hi taranjit,

Very interesting article, thanks for sharing it. Wish I could have read it about two years ago...
My BAV was first diagnosed when I was quite young (about 5 yrs old) and I was asymptomatic until two years ago when I had a AVR at age 47.
My pre-surgery echo showed evidence of slight left ventricular hyperthrophy (LVH), but neither my surgeon or cardiologist realized how bad my valve and aortic root were until they had me opened up.
My surgeon said that my valve and aortic root were extensively calcified - about the worst he had even seen, and that my displayed symptoms (shortness of breath, fatigue, etc.), should have been much worse based on the condition of my valve and root. They had to do a lot more "cutting and splicing" than they had originally anticipated. Fortunately they were still able to fit me with a 27mm St. Jude valve, although that was in question for a while.
Like you, I had been a life-long weight lifter, participated in a variety of sports, and was in good shape physically. The fact that I was in good physical condition helped to mask my symptoms and in some ways put me at more risk.
Two years post-op, I am still very active and lift weights, but have been prohibited from heavy lifting and now spend a minimum of 50% of my workout time in aerobic activities. My last echo indicated that my LVH has started to reverse and is now actually within the range of error of the test, which is good.

Take care,
Mark

 

[mainframe]

Hi Taranjit,

My aorta was/is dialated to 41. My doc (Verrier - UW Med Center) decided not to do anything with my aorta but I think it's something they will be watching. I had been pushing for a Ross Procedure and my dialated aorta was the reason they did something else. Of course, I"m hoping that it stays that same, but I guess we shall see.

Best of luck.

 

[Bunkenmeyer]

10% sounds really high

10% sounds really high

I just had a root replacement and valve sparing repair done in early december. I was told by everyone that the risk was about 2% and that was for everyone having the surgery. If you're younger and/or in better shape than the average the odds are probably even better (although they don't track them at that level). From what I've heard, 4 cm is small to do a repair but I suppose it all depends on what the docs think the chances are that is will continue to expand. Generally, greater than 5 - 5.5 depending on family history and other factors is the range when surgery is reccomended. If they will have to do it eventually, I guess there is no reason to open you up twice and surgical risks do increase second time around. Try not to stress too much about the surgery - its a big ordeal but you'll get through it just fine.

-Bunkenmeyer