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Update on conflicting surgery recommendations
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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From my understanding mural thromboses are common with certain aortic aneurysm, abdominal O think. Vascular who has put 4 stents in me since 2019 hasn't even mentioned it as a concern.... Go figure and God bless.
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1 ReactionI actually spoke today to the one surgeon who is recommending surgery. He said go on vacation and take the time away to get my mind right and ready for surgery. He said I am at 10% risk of dissection no matter where I am and he said the odds of surviving an unexpected dissection are no different whether I am in Houston, New York or Italy.
I am starting to prepare myself mentally for surgery and recovery. The people who love me want me to address this so we can all move forward.
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3 ReactionsI too have a tubular ascending aortic aneurysm, growing in length. My aneurysm is 5.8 in diameter and I am 77 years old. Because of post COVID Pulmonary Fibrosis of the lungs, I am considered too high a risk for open heart surgery. If I had the opportunity to travel as you have, I would make that wonderful trip and have surgery when I returned home. Life is precious. Make memories together and then have your repair if you are phsyically able to make the trip. That is just what I would do if I had the opportunity of being in your shoes.
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3 ReactionsThat sounds like a lovely surgical And Rehab experience! Could you tell us where you went and how your cardiac thoracic surgeon was please?Kay🌺
My surgery was at the Baylor Heart Hospital in Plano Texas (near Dallas). My surgeon was Dr. William Brinkman. My cardiac rehab was at the same hospital. I have never had any other major surgery before so I have nothing to compare to, but if I needed heart surgery again I would definitely go back there.
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4 ReactionsThank you🌺
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3 ReactionsListen, this is a personal decision, but what I would do is, I would simply find the best thoracic surgeon you can and make a decision. I promise you that the surgery is not a lot of fun but having dissected suddenly I can tell you that is an absolute nightmare and you may not survive. In fact, I’ll be blunt: you’re very likely not to survive if you suddenly dissect. So you have to look at what the odds are, but you also have to look at what your risk tolerance is. I promise you that if I had known then what I know now I would’ve had surgery 1000 times out of 1000. you’re gonna be fine but you just need to stop Doctor shopping and find one you’re comfortable with who is a thoracic surgeon and let them guide you. Part of this journey is letting go and letting your medical team guide you to the right choice. Aneurysms do not self repair And you need to embrace that concept. At some point you’re going to need surgery and the best time to have surgery, if there is one, is well before you dissect when you can make preparations for yourself and your family. Feel free to email me directly if you if you want to talk further. Look at me? Here I am 10 years after surviving an aortic dissection waiting for my daughter to get out of the fitting room at target. I spent the whole day moving my 91 year old father into a new apartment. If I can do it, so can you. Peace.
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8 ReactionsI 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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7 ReactionsI 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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1 Reaction@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.