When to get surgery

[Guest]

My cardio has been watching a dilated aortic root and mild aortic regurgitation for a couple of years. 2 years ago the valve was at 4.4 by echo and we decided to watch and wait. Now it is measuring 4.9 (the mri report actually stated 5.3, but the surgeon looking at the pictures said that he couldn't find a picture with that measurement.).

The surgeon said the increase wasn't too bad and that none of these numbers are all that exact and he would still recommend watching and waiting. I asked him the downside of having the corrective surgery now, while I'm still "relatively" young and he said the downside is that open heart surgery is a big operation and I may die of something else before this is a problem so it would be an unnecessary big operation. I was feeling pretty good after that appointment.

But I went to get a second opinion and this surgeon said that the increase is definitely concerning but not an immediate emergency. However, he thinks I am young enough that this WILL cause a problem at some point so I could just go ahead and have the surgery now and be fixed of this problem forever. Or I could watch and wait for the surgery until it gets bigger.

I don't think the objective numbers are so bad, but I'm 5'4" and <120lb, so it is the aortic relative size and body surface indicator that is worrying.

Ever since I found out I've been freaked out by doing ordinary things. I keep running morbid thought experiments in my mind, like it bursts while I'm driving or home alone with my kids and they will have to live with that image forever. The surgery is a big deal recovery-wise but also pretty safe mortality-wise. If my aorta dissects or ruptures, that is an emergency that many people don't survive. But it might not do that. It's hard to contemplate taking about 3 months out of your life to recover from something that you may or may not need. And I keep thinking that if I do this and am in the 1% that dies or strokes out on the operating table, they'll be at my funeral saying, "Damn, she didn't even have to do this operation!"
On the other hand, if I do nothing and the thing bursts next year, they'll be at the funeral saying, "Damn, they told her about this a year ago; why didn't she do anything?"

I am leaning heavily towards getting it done. My husband strongly feels I should wait until a surgeon says that I absolutely need it within 3-5 years (not a vague 'someday'). I'm not sure that will happen in the nice, systematic way he envisions.

 

[JulienDu]

I agree with your feeling, get it done. Why wait ? You have a BAV and the aneurysm is expanding. People want you to wait so that you give yourself more opportunities to die ? Your health is strong now, are you sure it will be the same in the future, when the operation will be inevitable ? Plus as you said you are small, thus making an objective number more worrying.

I got mine done at 4.9, surgeons and cardios thought it was a good decision because I was young and healthy and my job implies a lot of heavy lifting. I just hated the idea of being patient with a bomb inside of me.

It is a hard decision I know, but you know the bigger the aneurysm is, the faster it grows. You will need an OHS, as you were told, timing it is your decision.

 

[honeybunny]

So many "what-ifs" will make you crazy. Although I don't see that the need for surgery is pressing, the stress of waiting may be taking its toll on you, and that is not good.

Why is your husband insistent on waiting?

 

[DachsieMom]

Trust your gut. And please do consider body size. My sister is 5'3" and her valve was 4.8. Our surgeon said it was the worst he had ever seen that had not dissected and she could have died any day. Mine was smaller -under 4 - although pathology report put it at 4.5 after surgery - but I am only 4'9" so apparently it was large for my size. Dr elefteriades at Yale (our surgeon) has published studies on how BSA is important for aneurysms. I was only 42 when I had surgery, and my sister was 44. I don't say this to scare you - I just see that you are small and was to ensure your surgeon considers recent studies on body surface area. My cardiologist still followed the old 5.5 cm rule and one hospital turned my sister away because she did not meet the 5.5 cm criteria. She could have very likely died.

 

[AZ Don]

I am leaning heavily towards getting it done. My husband strongly feels I should wait until a surgeon says that I absolutely need it within 3-5 years (not a vague 'someday'). I'm not sure that will happen in the nice, systematic way he envisions.

I've read that once an aneurysm reaches 4.7cm, it will continue to grow (now I can't find the link for this), so the way I looked at it, surgery was inevitable and the longer I delayed surgery, the more risk I had from a rupture or dissection and then after that I still had the risk of surgery. I went into the meeting with my surgeon intending to ask for surgery somewhat earlier than the criteria, only to find I already met it because I had a BAV and at the time that lowered the criteria. While the committee approved guidelines say there is not enough evidence to use the size based measurements, there are many well respected Dr's that do use these. There is a relative aortic size calculator here: http://valleyheartandvascular.com/Thoracic-Aneurysm-Program/Calculate-Your-Relative-Aortic-Size.aspx

Based on the size calculation, I expect there are Dr's that would say you are a candidate for surgery now. That's not to say you need to rush into it but if you are leaning towards it, I would look for a well respected and like minded surgeon, and bring your husband along.

 

[epstns]

That measurement (4.9, etc.) sounds more like a measure of your aorta, not the valve area. If that is true, then I would not see this as an ". . . if I need surgery." That (aorta measurement over 5), to me, is a definite ". . . WHEN I need surgery." If my interpretation of your measurements is correct, I would go with the second opinion and get that thing fixed before it gets really dangerous. Aortic aneurysms and dissections are nothing to trifle with. If it was a pure valve issue, I might wait, but if it is an issue of the strength of your aorta, I'd fix it way sooner, rather than later.