Larger aneurysm--Cardiologist says to wait for surgery, should I wait?

[HopefulHeart]

Just met with my Cardio for follow up after my latest MRI scan. The MRI showed my ascending aorta has grown to 4.4 cm from the previous measurement 3 years ago of 4.2. My aneurysm had been stable at 4.2 cm since 2006. So over the course of 10 years my aorta grew 2 cm, but that growth occurred in the past 3 years. Is it now in an unstable state meaning continued growth will happen? I don't know, and neither did my Cardio. He was going to have me scanned by MRI in another 3 years, stating that growth is slow. But I insisted on being rescanned by MRI next year. If my aorta is now in an unstable state with more growth coming, I want to know sooner rather than later. My Cardio said that it was way too soon to be talking to surgeons about surgery, stating that he was afraid some surgeon would fast track me to surgery and "go in there like a cowboy cutting me up" causing more problems by operating prematurley. He kept stating that 5.5 cm was when I'd need to consult for surgery and only Marfans people need to consider surgery at 5cm or less. I brought up studies that Cleveland Clinic and Dr's at Yale have done indicating some people without Marfans need surgery sooner, but he attributed that to some surgeons just being more aggressive. I've done my calculations according to Cleveland CLinic's guidelines and learned that I fall just under their threshold for surgery based on body size so they would probably say no to me for surgery and as I've said my local Cardio is saying no. So I think I should wait, but I think I'm only going to wait till I get to 4.6 or 4.7, then I've going to revisit the surgery option more forcefully and seek second opinions from surgeons if necessary. Do you think that is a good plan? Or should I just start talking to surgeons now and throw caution out the window? My BAV is working well and in good shape and I'm asymptomatic as well.

 

[honeybunny]

Hopeful, I did not have an aneurysm so can't speak to your situation personally, but the plan you described appears to be a good one, IMO. I don't understand your cardio's comment that an aggressive surgeon will only want to "cut you up". Does he think you may never need surgery? If he thinks it will happen eventually, I don't see a problem with keeping on top of things on more than a 3-year basis. Have you considered getting a second, even a third, opinion from another cardio? I think I'd go that route first instead of consulting with surgeons.

I'm sure you'll hear from others here who HAVE dealt with aneurysms and can share their experiences. Meanwhile, I wish you peace of mind.

Hugs,
Michele

 

[pellicle]

Hi

As your valve is working ok and the cardio is unconcerned by the growth in diameter my feeling would be to ask around another opinion or two.

Clearly it's not a risk that is significant (or they would go in) so you can ease your mind a bit.

Being in the waiting room sucks but by waiting you do avail yourself of all developments. Not just valve related but the entire gamut of surgical and post operative care.

Keep us posted

 

[AZ Don]

Or should I just start talking to surgeons now and throw caution out the window? My BAV is working well and in good shape and I'm asymptomatic as well.

Getting a second opinion is about as far from throwing caution out the window as you can get. If I were you I would find a surgeon that you are comfortable with, and subscribes to the idea that body size matters. This isn't some fringe theory, it is something that some of the top Dr's in this field believe in. A good surgeon will not operate just because you show up. A good surgeon will help you determine how often you should be monitored and when they think the risk of waiting is higher than the risk of surgery, or perhaps refer you to a Cardio that will. You could always send your results to the Cleveland Clinic. I understand they offer second opinions remotely.

My BAV was also well functioning so I had a valve sparing aneurysm graft. Following the surgery the BAV started leaking and by 2 years the numbers were starting to alarm me. My Cardio said that my heart was functioning better than the numbers implied and it could be some time before I needed surgery. My Cardio is well respected but I thought perhaps he was being overly optimistic for my benefit. So I sought out a highly ranked surgeon and went for a 2nd opinion. He told me the exact same thing. So now I am more comfortable with my Cardio and it was good to meet the surgeon, who I plan to go to if/when it becomes necessary. My original surgeon is not available to me due to insurance changes.

 

[Agian]

Sounds like a good plan.

 

[HopefulHeart]

Thanks everyone for your advice! I wish I knew of a Cardiologist here in Charlotte, NC that subscribed to the idea that body size matters when trying to determine when surgery is necessary. My Cardiologist that I've been seeing is well respected and is the director of the heart failure clinic at the main hospital. But, surprisingly, he seems to be a bit out in left field with all the info about body size vs. aortic diameter. In fact, when I first brought that up to him during my last visit, he told me that that body size was only an issue with children. I was a little shocked and gave him an "are you kidding me?" look. He's seemed so knowledgeable up to this point and has gone the conservative route with treating my aneurysm and BAV, but I am starting to feel like I know more about body size vs. aortic diameter than he does. in fact he even told me "you seem to know as much as most cardiologists." Don't know if he was serious, or just giving me a little verbal slap on the wrist for being so insistent on considering body size for surgery. He seemed kind of annoyed with me and said "well, I thought the new guidelines of 5.5 cm would be good news for you." Honestly, most of the Cardios in my area appear to be more focused on heart failure issues. The aorta does not seem like something they focus on as much, although there are surgeons here that perform thoracic aorta repairs. I am definitely going to get the online second opinion from Cleveland Clinic. But will probably do it next year after my next MRI and Echocardiogram. That way I will have fresh scans on both the aneurysm and valve (it's been 2 years since last echo) for Cleveland Clinic to look at. In the meantime, I hope I stay at 4.4 cm over the course of the next 12 months. This waiting is so scary to me.

 

[cldlhd]

My surgeon in Philly mentioned body size in regards to the aneurysm but also level of physical activity at work and home. Seems logical to me that a physically active person who's on the younger side should have a somewhat different threshold than someone who is mostly sedentary.

 

[Superman]

When I had my graft in 2009, I don't recall much discussion of body size. Mine had grown from 2.6 cm in 2006 to 3.2 in 2008 (root measure on echo), to 4.9 in 2009 (CT scan). I wasn't interested in wait and see. I'm 6' 4" and over 220 lbs. Maybe body size would have said wait longer, but I wasn't interested in hearing about it due to the rate of change. My cardiologist and surgeon agreed, and did the graft in October of 2009. Insurance had no issue with this either.

I have heard of and seen posters that report years of living in the 4 - 5 cm range. I also recall one member hear that dissected at 4.7 cm. I just don't understand the benefit of waiting for a magic number. If it's got to go, then it's got to go. OHS is easier when you are younger / healthier for just about everyone. Granted, I don't know of studies that indicate only x% of aneurysm patients ever need a repair. I suppose if half of them get to 4.5 cm and never change from there - perhaps wait and see makes sense. But if that balloon is guaranteed to pop at some point in the future once it starts inflating; then best to just replace it.

 

[HopefulHeart]

cldlhd and Superman.....thanks so much for your input! It helps me to evaluate my situation better.