Bicuspid aneurysm size guideline

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I thought I tried pretty seriously above where I said:

have you actually tried reflecting on that in a serious way or are you just "seeking some magic injection" like morphine where you don't have to do anything yourself?

That's not how life actually works.

Best Wishes
I did very well but kind of my anxiety is top of the roof where at one time I was about to go to emergency. My mind keep saying why the surgery is risk is 1 percent per year now when the surgery risk is 2-3 percent. However I wanted to do surgery max till 5.8-5?9 to avoid 6cm threshold. And for me the size of aorta itself is messed up as cardiologist saying 5.7 and surgeon measuring 3 D model as 5.5
 
I did very well but kind of my anxiety is top of the roof where at one time I was about to go to emergency. My mind keep saying why the surgery is risk is 1 percent per year now when the surgery risk is 2-3 percent. However I wanted to do surgery max till 5.8-5?9 to avoid 6cm threshold. And for me the size of aorta itself is messed up as cardiologist saying 5.7 and surgeon measuring 3 D model as 5.5
Got this one bicuspid aneurysm study at https://www.jacc.org/doi/10.1016/j.jacadv.2023.100626 where though sample size is modest shows risks from 5.1-5.5, 5.5-5?9 and 6 as 0.4,0.7 and 3 respectively annually
So still not able to understand why such intrusive surgery is recommended
 
My story might help you make your decision. At 34 my aneurysm was discovered and it was at 6. I needed surgery and waited 6 weeks for that surgery. My aorta fell apart in the surgeon’s hands. I later read the surgical summary and it was really at 7.
I always felt good about each of my surgeries because my surgeons were so confident that they made me confident that I would survive.
It seems they still can’t see the actual shape the aortic tissue is in and so only go by how big they think it is.
All the best for you in making your decision. If you choose a great, highly recommended surgeon at a top hospital, I think you will come through your surgery just fine!
 
How long back you had surgery? And any issues post surgery since then?
My biggest fear is that after this surgery any comorbidities like renal failure, brain dysfunction etc (mortality is kind of out of hand) and probability of third surgery sooner than later.

I see even in bentall procedure there are many reasons for surgeries down the road again and person like me who is highly nervous and anxious , keep debating my mind to buy more time here from god till 5.9 cm or so before my second surgery
My story might help you make your decision. At 34 my aneurysm was discovered and it was at 6. I needed surgery and waited 6 weeks for that surgery. My aorta fell apart in the surgeon’s hands. I later read the surgical summary and it was really at 7.
I always felt good about each of my surgeries because my surgeons were so confident that they made me confident that I would survive.
It seems they still can’t see the actual shape the aortic tissue is in and so only go by how big they think it is.
All the best for you in making your decision. If you choose a great, highly recommended surgeon at a top hospital, I think you will come through your surgery just fine!
 
My last surgery was 1/2009. I haven’t had any issues with the aortic valve in graft the surgeon created for me during the surgery. I now have mitral valve issues but the consensus is I have time before I need another procedure, maybe never.
If the surgeon you want says it’s time, then follow that advice and do it.
 
I see even in bentall procedure there are many reasons for surgeries down the road again and person like me who is highly nervous and anxious , keep debating my mind to buy more time here from god till 5.9 cm or so before my second surgery
I think you are trying to over-optimize the situation. I doubt you have precise enough information to fine-tune these steps.

Every action has a risk associated with it. But you have to live your life, and make decisions, even if they have risks and consequences. E.g. waiting until 5.9 cm has its own risk. (It already exists now, and the progression may not be gradual in the future.) And spending time going back and forth between the different options will "cost" you the "opportunity loss" with getting something else done or spending time with your family. Making the decision (whatever it is) and living with it might work out better, if you can do it.
 
Got this one bicuspid aneurysm study at https://www.jacc.org/doi/10.1016/j.jacadv.2023.100626 where though sample size is modest shows risks from 5.1-5.5, 5.5-5?9 and 6 as 0.4,0.7 and 3 respectively annually
So still not able to understand why such intrusive surgery is recommended
Because they look at all the studies and the current standard of care vs looking for and cherry picking only the ones that suggest waiting.

You have said several times that you have anxiety. I have depression. I account for this in decision making because I know moods can drive me in an illogical direction. I deliberately and mindfully placed my trust in published guidelines and my docs, and verified with a second opinion when they told me it was time for surgery. I made that decision. If more stuff goes wrong I will deal with it then.

If you don’t trust your cardiologist and surgeon’s opinion over your anxiety brain I’m not sure what else anyone can say here. I am wondering what your wife / family says you should do.
 
Risk analysis is an interesting preposition especially in situations like this. But if one must, you would reach a conclusion the other way around:

1) If the risk of doing surgery (say 1%) is the same as not doing it (say 1%), then former is much better deal. In case of latter, you're taking that chance (i.e. 1%) everyday anyway, while former will require you to assume the same for just 1 single-day. And then you wake-up a few hours later (i.e. after surgery) with 0% risk thereafter, possibly forever. Just imagine how much lighter you would feel as you go back to living your life again, like the rest of us here have had.

2) While the risk of surgery is relatively better known, the risk of not having isn't. It varies so much from one individual to another, there's a huge unknown there. The 2 can't be compared apple-to-apple. People have different size, shapes, genetics, race, etc etc.

3) If you are young (38 is young) and in good general health, your risk is much lower than, say 68 or 58 year old. Your risk may actually be much better than what literature is citing. It's arbitrary at some point to try to break it down any further, for any meaningful purpose.

4) These aortic surgeries are minimal risk these days, thanks to the tremendous progress made by medical science. They've to quote a number and 1% really means it's just about 100%. They quote such risks for just about any surgical procedure. There's nothing 100% but have assurance in the fact that the risk of aortic surgery is the same or better than many other surgeries people do everyday.

5) There are aortic surgeons who would cite you 0.5% risk for aortic aneurysm surgery, if the numbers calm you down. I think you live in the bay area. There are centers like Stanford and UCSF where you would hear risks of that magnitude (0.5%), for example. You've access to great surgeons. Meet with some (I can provide referrals) and just talking to them makes you feel like doing it :)
Then, you can also go to Cleveland Clinic with world's best surgeons. You have access to something 99% of world's population with BAV probably does not. But then again, this surgery is perfected so much that most of the people in most places around the world have same outcomes. (Hope I'm not offending anyone :))

Not sure what your dimensions are exactly, but if it's in > 5.5 cm range, it's time to address it. You will be just fine. Look at so many of us.

In another thread you were seeking ethic-based determination, feel free to reach out to me. I'm Indian origin if that helps. There're no markers as I indicated in that thread that would provide any assurance or guidance to you based on that. However I can relate to your mental and emotional state in this decision making, since I went thru some of that myself at one point (we all do, it's normal). Available to talk to you, let me know.

All the best to you. Do some meditation, yoga, mindfulness, or whatever may work for you to calm down and have faith and trust in science. Look at a whole bunch of us here who have already gone thru it successfully.... You will be just fine. I can say that with VERY HIGH degree of confidence :)
 
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My last surgery was 1/2009. I haven’t had any issues with the aortic valve in graft the surgeon created for me during the surgery. I now have mitral valve issues but the consensus is I have time before I need another procedure, maybe never.
If the surgeon you want says it’s time, then follow that advice and do it.
How many surgeries
Risk analysis is an interesting preposition especially in situations like this. But if one must, you would reach a conclusion the other way around:

1) If the risk of doing surgery (say 1%) is the same as not doing it (say 1%), then former is much better deal. In case of latter, you're taking that chance (i.e. 1%) everyday anyway, while former will require you to assume the same for just 1 single-day. And then you wake-up a few hours later (i.e. after surgery) with 0% risk thereafter, possibly forever. Just imagine how much lighter you would feel as you go back to living your life again, like the rest of us here have had.

2) While the risk of surgery is relatively better known, the risk of not having isn't. It varies so much from one individual to another, there's a huge unknown there. The 2 can't be compared apple-to-apple. People have different size, shapes, genetics, race, etc etc.

3) If you are young (38 is young) and in good general health, your risk is much lower than, say 68 or 58 year old. Your risk may actually be much better than what literature is citing. It's arbitrary at some point to try to break it down any further, for any meaningful purpose.

4) These aortic surgeries are minimal risk these days, thanks to the tremendous progress made by medical science. They've to quote a number and 1% really means it's just about 100%. They quote such risks for just about any surgical procedure. There's nothing 100% but have assurance in the fact that the risk of aortic surgery is the same or better than many other surgeries people do everyday.

5) There are aortic surgeons who would cite you 0.5% risk for aortic aneurysm surgery, if the numbers calm you down. I think you live in the bay area. There are centers like Stanford and UCSF where you would hear risks of that magnitude (0.5%), for example. You've access to great surgeons. Meet with some (I can provide referrals) and just talking to them makes you feel like doing it :)
Then, you can also go to Cleveland Clinic with world's best surgeons. You have access to something 99% of world's population with BAV probably does not. But then again, this surgery is perfected so much that most of the people in most places around the world have same outcomes. (Hope I'm not offending anyone :))

Not sure what your dimensions are exactly, but if it's in > 5.5 cm range, it's time to address it. You will be just fine. Look at so many of us.

In another thread you were seeking ethic-based determination, feel free to reach out to me. I'm Indian origin if that helps. There're no markers as I indicated in that thread that would provide any assurance or guidance to you based on that. However I can relate to your mental and emotional state in this decision making, since I went thru some of that myself at one point (we all do, it's normal). Available to talk to you, let me know.

All the best to you. Do some meditation, yoga, mindfulness, or whatever may work for you to calm down and have faith and trust in science. Look at a whole bunch of us here who have already gone thru it successfully.... You will be just fine. I can say that with VERY HIGH degree of confidence :)
Thanks bro. Would like to talk to you.i did referred to Stanford and UCSF and both cited risk as 2 percent(Stanford said 2 percent mortality and 1 percent stroke and tens of 1 percent of morbidities) , UCSF said may be total risk of 2 percent citing second surgery. Though surgeon don't talk about how much risk I have without surgery
My cardiologist says same risk citing in few studies I have quoted as like 5.5-5.9 we have risk of 3.5 percent over 5 year
Mortality fever I am kind of move over but since the solution proposed is bentall procedure including root to arch replacement with removing old valve , risks of permanent pacemaker , renal failure etc keep me haunting that should I try to steal few more years before surgery
 
How many surgeries

Thanks bro. Would like to talk to you.i did referred to Stanford and UCSF and both cited risk as 2 percent(Stanford said 2 percent mortality and 1 percent stroke and tens of 1 percent of morbidities) , UCSF said may be total risk of 2 percent citing second surgery. Though surgeon don't talk about how much risk I have without surgery
My cardiologist says same risk citing in few studies I have quoted as like 5.5-5.9 we have risk of 3.5 percent over 5 year
Mortality fever I am kind of move over but since the solution proposed is bentall procedure including root to arch replacement with removing old valve , risks of permanent pacemaker , renal failure etc keep me haunting that should I try to steal few more years before surgery
I see that you DMed me. Will talk to you there.

I got bentall too. It's no big deal. You are looking at a list of what can go wrong. The list of positives is much, much longer :)
 
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Three surgeries for me.
Stanford for all. My daughter was only 2 when I had my first surgery. I knew I needed to survive so she would know me!
 
no, a dissection is when the wall of the artery tears like a garden hose and the fluid inside just pours out onto the ground. Inside you however this means you bleed to death at a rate depenedent on the size of the tear. Depresurisation of the "hydraulic fluid" can also shock the brain (because its never experienced this loss of blood pressure) and you may actually freeze up.

There are a range of possibilities but all of them are very serious.

Good reading at this point (of this document) with good accompanying diagrams

In aortic dissection, a tear in the aortic intima allows blood to penetrate the aortic media, pushing the dissection flap into the middle of the aorta, separating the true from the false lumen. In intramural hematoma, blood leaks into the aortic media at low pressure, forming a thrombus that pushes the outer wall of the aorta outward, leaving a relatively normal appearing aortic lumen. A penetrating atherosclerotic ulcer allows blood to enter the aortic media, but atherosclerotic scarring of the aorta typically confines the blood collection, often resulting in a localized dissection or pseudoaneurysm. ... If the blood in the false lumen instead tears through the outer media and adventitia, aortic rupture will result. The incidence of aortic dissection is estimated to be 5 to 30 cases per million people per year, with men more commonly affected. Most dissections occur in those between the ages of 50 to 70 years, although patients with Marfan syndrome, BAV, Loeys-Dietz syndrome, and vascular Ehlers-Danlos syndrome, present at younger ages.
OK. I read online that a dissection is a separation of the walls, that is why I asked. LOL ;)
 
St. Jude's has two flaps. ;)
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:-D
 

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