Hello

[mattswife]

I just wanted to introduce myself to you all.

My husband (age 42) was diagnosed with annuloaortic ectasia in March of 2014, after his doctor heard a murmur at a routine but long-overdue physical. The cardiologist used the words "aneurysm" and then "John Ritter", so naturally we freaked out. She used lots of other words as well, but those were the only two that stuck.

The aorta is currently at 4.9 (according to the echo) or 4.4 (according to the CT). Not sure which one to believe, as that seems to be a huge variation in size between the two tests. We do know that Matt has been very tired for over a year now, so much so that he requested a Lyme's test and all other kinds of tests at the physical to figure out why he is so tired all the time.

We spoke to a surgeon at Washington Hospital Center. He was very patient with us and answered all of our questions. He told us that there is no guarantee that he can spare Matt's valve when he replaces the ascending aorta, in which case he will need to place a new valve. We had a discussion about mechanical valves versus pig/bovine valves, and frankly we have not decided. We'll meet with a surgeon at Johns Hopkins next week to get his opinions and then decide from there.

So, we are processing this as best we can. I am sooo glad to have found this site - so glad. The more I read, the better I feel about everything!

I myself had a heart attack 5 years ago - I was 7 weeks postpartum with my third child when my LAD coronary artery dissected, causing a heart attack. I spent 12 days in the Cardiac Care Unit at Johns Hopkins, where I received 2 stents. I got all my heart function back, and currently take no meds apart from a daily aspirin. But it was a long road to recovery, with plenty of anxiety along the way. I thought we were done with all that! And yet here we go again...

OK, back to obsessive reading!

--Trudy

 

[Mentu]

Hi, Trudy, Matt's approach to surgery sounds much like that of many here in VR. When I started feeling exhausted and later, often out of breath, my first thought was that I really needed to exercise more. That didn't work out so I finally talked to my cardiologist and a few months later began my own recovery. Strange as it may seem, in my Cardiac Rehab group, those individuals who had a valve replacement and sometimes a repaired aorta seemed to recover more quickly than some of those who had bypass surgery or stents. Never the less, it is better to understand the problem and get it fixed before anything dramatic happens. Let us know how we can be of help to either of you.

Larry

 

[Superbob]

Welcome to our Funny Farm, Trudy! You will find lots of friendly folks here willing to share their experiences and pass along their insights.

You are fortunate to live in the DC metro area with these challenges to face. You have several excellent choices -- I just wanted to mention Inova Fairfax, where I had my valve/root replacement 9 years ago, and Dr. Alan Speir, the chief cardiac surgeon. He is renowned in the field, and has done a lot of the combined valve and root replacements. Washington Hospital Center also has an excellent reputation, among others in that region.

My experience is that echoes are useful but inexact, and that a CT usually yields a more exact measurement.

If you do searches or browse the threads here, you will find a great deal of discussion about the factors going into choosing a mechanical or tissue device. My approach was to make a list of the pros and cons for each.

The time for my operation came when I passed the 5.0 cm mark -- I believe it was 5.3 by the time of surgery and increasing briskly because the leakage from my congenitally defective valve had become "catastrophic" at that point. Just sounds like your husband might be in for some medical monitoring for a while.

Anyway, wanted to say hi and a word of welcome.

 

[Bryan B]

Welcome Trudy,

I had my ascending aorta and valve replaced 3 years ago. My surgeon specializes in disease of the aorta and he has told me that a CT scan is the gold standard for measuring the ascending aorta (MRI is next best and echo is the least accurate). I get annual checkups and alternate between getting a CT scan and a MRI, this is to limit exposure to radiation from the CT scan. My aneurysm was measured at 4.7 by echo, 5.4 by MRI six months later, and 5.8 three months later by CT scan. He measured it when doing the surgery and it was 6.0! :eek2:

A lot of it depends on how fast it is growing, and since it was just discovered they won't really know that. At the numbers you posted I would guess they may do a follow up CT scan or MRI in 6 months (maybe 3 months). We have a saying about valves..."the worse they get the faster they get worse". I found that to be true with my aneurysm as well. My surgeon gave me a 50% chance of saving the valve, but when he got in there the regurgitation had done too much damage so he went with the valve we had decided on in case the repair was not possible. As for the type of valve you choose, I suggest doing a lot of research on this site to get a good understanding of the pros and cons of each type of valve. It's a very personal choice and there really is no wrong choice as it is going to allow your hubby to live a normal life. :smile2:

 

[AZ Don]

Welcome to the forum. The CT scan is much more accurate than the echo. Generally the guidelines for surgical intervention are when the aneurysm reaches 5.5cm, but some Dr's are more aggressive and other factors can influence when the surgery should be done. I'm not clear why your Dr's are talking surgery so soon, maybe something to do with some of those words that you missed? I had not heard of annuloaortic ectasia before though it seems it is just another name for aortic aneurysm.

For a valve sparing procedure the surgeon will want the option to decide during the surgery if the valve can be spared. Mine was but I had to pick a valve ahead of time in case it couldn't be. The good news in all this is that current surgical techniques are amazing and heart surgeries and aneurysm repairs are done routinely. Now that this condition is known it can be monitored and repaired when necessary.

 

[carolinemc]

Hi Trudy, I just came in from a small vacation from here. I had genetic problem with my aortic valve. I had to go with mechanical valve because the aortic valve had to be replaced any. I had repair on it at the age of eight and replacement at age 36. Not all have to go this route, it depends on the shape that the aortic valve is in. I hope you keep researching all the options that are out there. There are improvements made everyday and treatments change everyday also. I am on warfarin daily but your husband may not have to go that route. Good luck in your research and make a good choice you both feel good and comfortable with. And keep coming in, you may have more questions that experiences can answer. And be sure to ask the doctor as many questions as you need to gain knowledge for your husband. Good luck and hugs for today.