Spitballing here

[cbdheartman]

Since my posts yesterday and the responses, I've begun to swing back to getting this surgery done sooner rather than later. I may only 4.9 cm, I may be pretty stable, but does any of that necessarily mean anything? An aneurysm is in my chest! Doctors are saying I can run, mow the lawn, etc., and a lot of the time I am thinking, "What if the next beat is the one that ruptures this thing?"

I'd appreciate any thoughts -- especially from those who have waited.

A couple of other factors in favor of surgery now: I've dropped my cholesterol. I am close to my lightest weight in 6 years (I was 221 in 2005 and I am now in the mid 190s at one point I'd dropped almost 30 pounds.). My valve is in good shape.

A friend mentioned that the idea of starting the clock works in the other direction. Svensson was recommending against surgery in part because that rings the bell of surgery and means that the timeline for other possible surgeries has begun. But a friend said that if you start now, you will be younger and in better shape for the next surgery -- if that ever comes.

I welcome thoughts.

 

[heyrebekah]

I was just reading your posts from the other day and I remember being in the same situation a month ago. I had 4 or 5 different opinions, all from top cardios and surgeons and all said something different, from "you need surgery in the next few weeks" to "you can go another 20 years."

I did decide to go ahead with the surgery, mainly because I want to have children in a year or two and didn't want this hanging over my head. And after a year of being scared and anticipating surgery, when I got opinions that it wasn't necessary I just couldn't wrap my brain around it.

What helped make up my mind is that my original cardiologist said "You don't care what the odds are when you are the one it happens to." Plus she thought I would probably need the valve replaced in 5 years or less anyway. If I could have waited another 20 years, that would be great, but it didn't seem worth it to put off surgery just another few years when I could just go ahead and get it over with and move on with my life. I felt like if I decided against surgery I would be constantly faced with the same decision every day until I did have it done.

In the end I'm glad I did have the surgery, especially because they found that my valve only had one cusp! It's been 3 1/2 weeks and my recovery had been perfectly smooth so far.

But if I hadn't, I probably also would be feeling good about that choice too. There were some great doctors on that side and I really do think everyone was "right" about their interpretation. You just have to figure out what is right for you.

 

[bugchucker]

Hey there, my story is remarkably similar to heyrebekah's. I found out about my aneurysm in October 2008, the surgeon scared the crap out of me leading me to believe it was a matter of do it now or risk death, I was at 4.7 in my thoracic aorta. My cardio thought otherwise, he said run, eat well, watch the cholesterol and blood pressure, and that it could be years before I would have to have surgery. In subsequent follow up visits my anxiety level became so high that I was elevating my BP inspite of increased exercise. I ended up trying to convince my cardio that we needed to start thinking about a date, he said I was worrying too much, literally 2 hours later he called me in a panic saying that he had just attended a meeting and that I needed to schedule my surgery...Go figure. Short story long is that I had my valve and aorta replacement 4.21.09, so I'm just over a month out, I'm already feeling better (for the most part, still have a few challenges) than I did prior to the surgery. There is a really good chart originally posted in a reply to RVUSA, I copied/pasted it below. Hope this helps. In the end I'm glad I did. As you probably know Ross ruptured at 4.7. Not worth the gamble in my book. Hope your doing well.

According to this related work: http://www.ncbi.nlm.nih.gov/pubmed/9081092?ordinalpos=1&itool=EntrezSystem2.PEntrez.P ubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pu bmed_Discovery_RA&linkpos=1&log$=relatedarticles&l ogdbfrom=pubmed , the magic number would be 5.5 cm.

However, if the criterion is the point where the risk from surgery is eclipsed by the risk from not having surgery, the chart would indicate that that occurs at 5.0 cm.

That is, if you believe that the surgical mortality rate still hovers at around 9%. However, I believe that risk is overstated, due to the number of older surgeries included in the figures. I believe a more recent cohort of surgeries would have a lower mortality rate. I have seen it shown as much closer to 5% with more recent data.

Interesting chart and info from St. Luke's http://www.slrctsurgery.com/Thoracic...0aneurysms.htm (chart reformatted to work in VR.com pages)

Quote:
At St. Luke's-Roosevelt Aneurysm Center the operative mortality of ascending aortic aneurysm surgery is 2.3%. The mortality for aortic arch surgery increases to 5-8% and the mortality for descending thoracic aneurysm surgery is 5.5%. Below is listed the yearly risk of complications based on aortic aneurysm size.

Yearly risk at Aortic size.................... > 3.5cm....... >4.0cm....... >5.0 cm....... > 6.0cm

Rupture................................................ 0.0%.......... 0.3%........... 1.7%............ 3.6%

Dissection............................................ 2.2%.......... 1.5%........... 2.5%............ 3.7%

Death.................................................. 5.9%.......... 4.6%........... 4.8%........... 10.8%

Any of the above.................................. 7.2%.......... 5.3%........... 6.5%........... 14.1%

Given these statistics it is recommended that asymptomatic ascending aortic aneurysms be resected at a size of 5.0-5.5 cm. If severe aortic insufficiency is present in the setting of a bicuspid valve, the ascending aorta should be resected when it is 4.5 cm in diameter. Descending thoracic and aortic arch aneurysms typically are resected when they exceed 6.0 cm in diameter.

If you use either of the charts and use the more recent surgical mortality figures above, the changeover point is somewhere around 4.2 cm. Being large only puts more stress on it and the heart. I don't know how much added surgical risk that creates, but it still must cross over quite soon.

 

[MissMelis]

My situation is similar to heyrebekah's too - want to have children soon, and don't want this in my way - I'm just waiting to see what my aneurysm measures next month. If mine has grown any further (hell, maybe even if it hasn't) I'll be pushing for surgery, because I hate the thought of it being there when there's something they can do about it NOW. An ounce of prevention, right?

I would tend to agree with your friend that said that surgery now, while you're in good shape, might mean you're in better shape if and when the time comes when you'll need another one...and who knows, by that time they might be able to do it less invasively.

I hope you can come to a decision that you're comfortable with. I understand your struggle.

Melissa

 

[cbdheartman]

Thanks bugchucker.

Where was Svensson getting the less than 1%. If I am close to 5.0 cm, then I have a 4.6% chance of dying this year from my aneurysm, right? (Or am I reading this wrong.)

He said at the CC the morality rate for my surgery is about 1% (though if anyone has better numbers let me know). So a 1 time risk of death of 1% versus a continuing risk of nearly 5% each year?

ARe these St. Luke's numbers up to date?

 

[bugchucker]

I tried to quote tobagotwo, he is the one that posted the technical details, I just copied and pasted but he seems to be very knowledgeable and up to speed. It was originally in the valve selection forum under the "sticking my head in the sand..." thread. My surgeon's magic number was 5cm, no way was he going to let me go beyond that and really urged me to do it now.

 

[Ross]

I said it before, I'll say it again. Get the surgery done now. I'm never going to understand why doctors, and no offense meant to you, but why people, have to have statistics to make this decision. The stats don't mean a damn thing if yours suddenly ruptures. If it does, it means one of two things. Either you die instantly or you survive but become disabled because of lack of blood flow to other organs, causing them to be damaged. I'm there, I know.

You can spend forever looking up stats and studies, but not one of them are going to change the fact that it needs to be dealt with. For every positive stat or study you find, you'll also find another disputing it. It's a waste of valuable time.

 

[ALCapshaw2]

I'm thinking that the 1% Surgical Risk quoted for Cleveland Clinic is for Valve Replacement Surgery (only). Someone might want to verify that.

I expect that the Surgical Risk for Aneurism Repair varies (possibly considerably) with the experience and skill of the surgeon, typically under 5% from that paper if I remember correctly, and possibly in the 2% range for very experienced surgeons.

To MY mind, the main point is that once you are told you have an Aortic Aneurism, you are at some finite risk of disection or rupture or death. What is the benefit of waiting? From my perspective (as a reader of VR.com and NOT having an aneurism), it is best to go ahead, get it fixed, and get on with life.