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Update on conflicting surgery recommendations

Posted by mleiva1234 @mleiva1234, Aug 4 6:57pm

Quick recap. I am 57. My TAA was discovered in 2021. I think it was 4.1cm at the time. I have been seeing Dr. Joseph Coselli at Baylor Medical in Houston since and I have a CT done annually. This March the CT relieved my TAA was at ~4.8cm depending on who is doing the measuring. As I left Dr. Coselli's office he gave my wife a wink and said "he will be fine." I won't go into the reasons why but I have gotten two second opinions in the last six months. One from Dr. Joseph DeRose at Montefiore Medical in the Bronx. He looked at the CT images and said if I were his patient it would not be up for discussion, he would insist I have surgery. He cited recent research that shows the length of the aneurysm is a better predictor of dissection than diameter (if anyone is interested send me your email and I will be happy to share it with you). My length was 11.2-11.3 cm. Dr. DeRose and this newer research is suggesting that 5.5cm in diameter should not be the magical number when it is time for surgery. Since I had two conflicting recommendations I went for a third from Dr. Leonard Lee at RWJBarnabas in NJ (he repaired a TAA for someone I know a year ago). Dr. Lee 's recommendation was to wait until the aneurysm grew >5.0cm. So two of three are saying to hold off, but the two that are recommending that I wait haven't said anything about the length and are not concerned about the length even after I pressed them on it. My wife and I are scheduled to travel to Italy in September and to help us make the decision I had a CT Angiogram last week. The person who read the images from Baylor Medical said there has been minimal growth from when I had a CT with contrast in March 2024. They read my aneurysm at 4.5cm. So frustrating how multiple people keep reading my images and give me different sizes. Now I am waiting on Dr. Coselli and Dr. DeRose who both have copies of my images to get back from vacation to tell me how they interpret my aneurysm. Here is the real kicker. The logical side of my brain is aware of the risks of walking around with this thing and that I am taking a chance every day but the emotional side of my brain is scared to go ahead with the surgery. The person I mentioned above who had their TAA repaired a year ago, his brother had the same surgery and died months after from a blood clot. That's what I am focusing on. Not the person I know who survived, recovered and is living a healthy life. Why? I almost wish this thing would grow more so all the doctors tell me its time to have surgery. No question. Then I would have no choice.

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mleiva1234 | @mleiva1234 | Aug 15 12:00pm

The two additional items are the length of my aneurysm at 11.3 cm and the structure of my aortic arch. It is a bovine aortic arch. It is a common anatomical variation of the aortic arch so that wasn’t what led me to my decision. My surgeon has been warning me about the length. At 4.8cm diameter, I am getting close to the size most surgeons would suggest thinking about surgery. For me it was the idea that I am gaining nothing from waiting. The longer I wait, the more I age, impacting recovery. I have so many other things I want to do in my life. I am going on safari next August and I don’t want this hanging over my head. My wife and I want to bike with Backroads in Europe. Time to get on with life.

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flaxxy703 | @flaxxy703 | Aug 15 12:29pm
In reply to @mm05897 "@mleiva1234 It sounds like our TAAs are about the same size, but you are a step..." + (show)
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@mleiva1234 It sounds like our TAAs are about the same size, but you are a step or two ahead of me in the process of addressing it. Was the final consensus on the size of yours 4.8cm? My most CT showed 4.8cm. I also have a fairly well functioning bicuspid aortic valve. Did you have any additional factors that led to an earlier surgery, e.g. genetic condition, connective tissue disorder, or bicuspid aortic valve? Thanks and best wishes to you.

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i read that some elderly were found to have aortic aneurysms measuring 13cm and have no symptoms. could that be?

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mm05897 | @mm05897 | Aug 15 1:00pm
In reply to @mleiva1234 "The two additional items are the length of my aneurysm at 11.3 cm and the structure..." + (show)
Profile picture for mleiva1234 @mleiva1234

The two additional items are the length of my aneurysm at 11.3 cm and the structure of my aortic arch. It is a bovine aortic arch. It is a common anatomical variation of the aortic arch so that wasn’t what led me to my decision. My surgeon has been warning me about the length. At 4.8cm diameter, I am getting close to the size most surgeons would suggest thinking about surgery. For me it was the idea that I am gaining nothing from waiting. The longer I wait, the more I age, impacting recovery. I have so many other things I want to do in my life. I am going on safari next August and I don’t want this hanging over my head. My wife and I want to bike with Backroads in Europe. Time to get on with life.

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@mleiva1234 I agree with you. I would just assume get over with rather than delaying the inevitable. Thanks for your response.

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davidtrey | @davidtrey | Aug 16 11:47am
In reply to @mleiva1234 "I can’t say enough how appreciative I am to everyone who read my post and provided..." + (show)
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I can’t say enough how appreciative I am to everyone who read my post and provided me feedback. That’s everything I could ask for. After long discussions with my family and the doctor I have chosen, I have scheduled my surgery for October 20th, but first my trip to Sardinia in September with my wife. Those of you who have been through this before know it’s not something you necessarily look forward to, but there is still this feeling of “ok let’s just do this thing already”. Somewhat a sense of relief. I’ll keep you all posted. Thank you

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That’s great news. Please keep us posted on how you do. You are in many of our thoughts.

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davidtrey | @davidtrey | Aug 16 11:49am
In reply to @ppiper "I believe your surgeon’s estimate of dissection risk are quite inflated. I am a scientist and..." + (show)
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I believe your surgeon’s estimate of dissection risk are quite inflated. I am a scientist and have done a thorough lit review, and my cardiologist at MGH, Eric Isselbacher, is recognized as an expert. We both estimate my risk of dissection ( I’m a 76 yo male with a 4.6 aata) at approximately 1%/yr. In all likelihood, I have a connective tissue disorder given a 1.2 cm (no treatment necessary) celiac aneurysm. Still 1%, not 10%, per year. The excellent surgeon at MGH agreed with that estimate.

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Would you mind sharing who your surgeon is at MGH? I reached out to them recently for a consult.

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ppiper | @ppiper | Aug 16 3:14pm
In reply to @davidtrey "Would you mind sharing who your surgeon is at MGH? I reached out to them recently..." + (show)
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Would you mind sharing who your surgeon is at MGH? I reached out to them recently for a consult.

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Arminder Jassar is the MGH surgeon, and Eric Isselbacher the cardiologist.

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ppiper | @ppiper | Aug 16 3:28pm

I commented before that I thought your Montefiore surgeon was inaccurate in his estimation of your risk. Let me add a request for that research on length v diameter. I am not turning up anything striking.
And I hope all goes well for you, both on your trip and your surgery, should you choose it. I very much wanted to “get it done” until I ran the numbers on the Society of Thoracic Surgeons risk calculator (STS.org, I think). Although in absolutely good health, my risk of morbidity was ~6%, not counting re-operation, aFib development, etc. The good centers ( Cleveland, UCSF, MGH/B, and lots of others) have gotten mortality down under 1%, but MI/stroke/kidney failure etc still an issue.
If you (or I) were really at a 10% risk of rupture or dissection, then we would equal or surpass the risk of surgery, but if our true risk of r/d is 1%, I’m staying vertical.

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wtamminen | @wtamminen | Aug 17 12:00pm
In reply to @ppiper "I commented before that I thought your Montefiore surgeon was inaccurate in his estimation of your..." + (show)
Profile picture for ppiper @ppiper

I commented before that I thought your Montefiore surgeon was inaccurate in his estimation of your risk. Let me add a request for that research on length v diameter. I am not turning up anything striking.
And I hope all goes well for you, both on your trip and your surgery, should you choose it. I very much wanted to “get it done” until I ran the numbers on the Society of Thoracic Surgeons risk calculator (STS.org, I think). Although in absolutely good health, my risk of morbidity was ~6%, not counting re-operation, aFib development, etc. The good centers ( Cleveland, UCSF, MGH/B, and lots of others) have gotten mortality down under 1%, but MI/stroke/kidney failure etc still an issue.
If you (or I) were really at a 10% risk of rupture or dissection, then we would equal or surpass the risk of surgery, but if our true risk of r/d is 1%, I’m staying vertical.

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It is great that you did a lot of research. It is always smart to be an informed patient. When I went through this 6 months ago I factored in a couple of other considerations. The first was continuing to live with the constant anxiety of knowing I had an aneurysm that could dissect or rupture even though the risk was small. The second was the future risk. I was 72 and my aneurysm was growing slowly. If it continued to grow at the same rate I probably wouldn’t be at 5.5 cm for another 5 years. At my age every year I waited to have surgery increased the chance of having some of the complications you mentioned. So considering everything I decided to have surgery. My surgery went well and I had no complications and I was out of the hospital in 5 days. It has been 4 months post surgery and I am about 95% recovered (my sternum aches if I do too much). Everyone has to do their own risk assessment and be comfortable with it. I wish everyone the best whatever they decide.

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kathy9746 | @kathy9746 | Aug 17 12:19pm

Was the rate of growth concerning to your doctors?
Mine has grown from 3.9 to 4.0 in 20 years. It’s considered stable and at 77 I’m hoping it stays that way.
Good luck to you!

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Colleen Young, Connect Director | @colleenyoung | Aug 17 3:13pm

@mleiva1234 and @ppiper, please use the secure private messaging to share personal contact info. I removed your email addresses from the public forum.

I'd also like to point out that by sharing here in this discussion, you are not only helping each other, but other members as well. We learn and heal better together. 🙂

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