Tying to decide when I should have surgery?

@ctflyr

Not having a competent surgeon line up isn't a plan. Ending up in the local ER with them treating you for cardiac arrest has almost no survival rate. I survived 14.5 hours of open heart surgery 22 months ago at 60 years old. I wouldn't want to go through that at 70+. However, I still have a aneurysm on my ascending aorta between the graft and aortic arch. It has been stable for the past year at 4.6cm. My tricuspid has increased to a moderate leak and the mitral valve went from trivial to mild. I have been through this and am also on the watch and wait thing, again. That said, however you proceed, good luck to you.

@rlhix I have a competent surgeon, I will be going to Jefferson in Phil. I have met with them 2 times, it is my decision when to go ahead with surgery. Recent ct scans suggested I have severe calcification, heart Cath revealed no blockage. I feel I should wait until I reach the 5 cm mark.

@johnroy

Good. Sounds like you have a solid plan. My response was to ctflyr.

I’m posting for opinions and am definitely terrified of surgery or a dissection. With that all said, I’m 48 and have been following my aortic aneurysm for the last eleven years. It comes with a bicuspid aortic valve as well. In six months it went from 4.9 to 5. The cardiologist that I have just for tracking it, he has scheduled me to have a meeting with the surgeon at the Norfolk Heart Hospital to go over the need for surgery now. In 2021 I started having PTSD related seizures but both cardiologist have assured me that a seizure won’t cause it to rupture. Having all these health issues ended up causing my wife to leave. I was going to Duke last December for a seizure study when my heart stopped in the parking lot. Needless to say terrifying my sister in the process. I’m now fitted with a pacemaker and have been told by all three specialists that they have nothing to do with each other. It seems like most people have their aneurysms fixed at an older age. They are to replace the aortic valve and repair the aneurysm that’s right before it. If surgery is the what the Doctor deems necessary in a week when I see him. I’ll be honest at 48, doesn’t seem like there’s much positive that happens to you afterwards. I have two boys 15 and 16 they are everything to me, but this all has me limited. Will I at least gain some of my ability to go outside and hit the ball with them. I have zero endurance and the pain in my chest kills me. Is it possible to gain it all back or has anyone else?

@jtmoore hi I was 54 when I had mine repaired, I also have a BAV that was left in place during surgery as the surgeon’s opinion was that it was in good shape and highly functional, he told me my natural BAV in good shape would be better than any artificial valve. All things being equal the younger you have the surgery the easier to recover, but it really all comes down to your physical fitness and other illnesses that you may have, your cardiologist and surgeon would be able to assess your general health and risks and give you probabilities and recommendations. In my case I was in very good shape as I exercised all my life and my surgeon gave me >99% chance I would have no issues, and that’s what happened. I was in the hospital 5 days and back to work in 3 weeks, in 6 months I was working out with certain intensity, in a year at full pace. I live a normal life with the only restriction to control and maintain my BP within acceptable range. My cardiologist checks me every year to monitor my valve and the repair. My valve will have to be replaced at some point but now that the aneurysm is repaired it can be done endovascularly.

Again depending on your general health, you want to have the repair when your body is at its best and age has a lot to do with it. The reason why most people have it at an older age is because for most of them it takes that long to grow to critical size. Yours happens to have reached 5.0 at a younger age, which honestly I see it as a blessing.

5.0 is already a large aneurysm and if your Drs consider it is time for repair you should listen, evaluate your odds, ask a lot of questions and make a decision. You have the opportunity to plan and do something, a lot of people don’t get that chance. Read the stories of people in this forum that survived dissections, the lucky ones, it is not something you want to go through if you can prevent it.

If you want any more info feel free to ask, take care of yourself and wish you all the best.

@ctflyr , I am with @rlhix, AI gathers data based on averages and generalities, doesn't know the fundamentals of the specific patient, everyone is different. It is good to get informed about the disease, etc but I would not make a surgery or not decision based on that. Nothing beats being in front of a cardiothoracic surgeon (and in my case I also consulted a cardiologist who is a recognized aortic disease specialist) who has done thousands of these in a major medical center and has all your details. My surgeon when I first saw him told me, my aneurysm was large for my body size and I should have it repaired sooner than later, he told me based on my specific physical conditions chance of going through surgery without issues was >99%, I had my surgery 2 months later and as he said no issues, in my case 5 days in the hospital, back to work in 3 weeks. Not everyone is in the same shape, age, etc but I trust a recognized specialist that knows my case well over AI.

@houston13 Curious about your surgeon's comment about your body size. My height is 57" and 2 different thoracic surgeons have commented. Surgeon #1 said my height was a major concern and that proportionately, my ascending aortic aneurysm that is 4.8 c.m may actually be larger. He also said my age (81 y.o.) was a concern and recommended a CT scan in 6 months. Surgeon #2 said my height and age was not a concern, but he also refused to consider any surgery until my aneurysm was at least 5.0 cm. He recommended a CT scan in 1 year. Both surgeons are heads of their cardiothoracic surgery departments at a major hospital in NYC.
Was your surgeon's comment on your body size because you are short or tall?

@ewei6911 body size is one of the variables surgeons consider to decide whether an aneurysm is large enough for repair. I am 5’ 6” and about 168 lbs and a 5.2 cm was considered very large. At 4.8 and 5’ 7” is not the same if you were 6’ 3” for example. Now, it is not the only variable, there are other things surgeons look at (geometry and shape, etc)

After surgery my surgeon told me in his mind the aneurysm was actually larger than expected (than measured by CT) so good it was taken care of.