Thoracic aortic aneurysm 5.2 Advice-please

Posted by jenali @jenali, Oct 11 6:52pm

I was told eight years ago that I had an aneurysm (breast cancer MRI), so they’ve been watching it. It has grown very slowly over these years. Well last week I finally met with a cardiovascular surgeon and he’s recommending surgery. No hurry, but don’t wait too long kind of advice. It’s a lot more surgery than I thought it was going to be. I thought a less invasive method, but he said there isn’t, that it has to be crack my chest open-open heart surgery. Does anyone have this kind of aneurysm? If so, what kind of surgery? Should I wait? It’s currently 5.2cm. Please help…I’m very scared.

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I had my surgery at 5.2cm also almost 5 years ago, I’m assuming yours is an ascending aortic aneurysm, there’s no alternative but open heart as far as I know. My advice is to follow your surgeon’s opinion, if he/she is advising surgery is because he/she considers the risks of the surgery lower than a possible dissection or rupture which are normally fatal. Not everyone has that option. Ask a lot of questions, I can tell you surgery is tough but bearable, it sure beats the alternative .

Wish you all the best!!

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What questions should I ask? I just sat there. The only question I thought of so far is…Will the mesh, or the closing wires interfere with future breast MRI’s? (I still have to get those once a year)…but not sure if I should ask anything else.
How was your recovery-if you don’t mind me asking? I’m terrified of being in excruciating pain.

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What is the hospital that the surgeon you are talking to affiliated with? You want to be treated at a place that does this frequently with a surgeon who also does this frequently.

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@jenali

What questions should I ask? I just sat there. The only question I thought of so far is…Will the mesh, or the closing wires interfere with future breast MRI’s? (I still have to get those once a year)…but not sure if I should ask anything else.
How was your recovery-if you don’t mind me asking? I’m terrified of being in excruciating pain.

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Recovery speed depends a lot on your general health and fitness, in my case I was out of the hospital in 5 days and back to work in 3 weeks. The main source of pain of course is your broken sternum, when you cough, sneeze, laugh, but amazingly it starts healing fairly quickly, they will give you a pillow that you embrace everytime you need to sneeze, etc so that it dampens the effect of the strain on your chest, you will also get pain medication. I can tell you, they discovered my aneurysm after an MTB accident, I broke my leg and needed surgery, my open heart surgery was 3 months after my leg surgery (I did not want to wait so I had it as soon as feasible) the pain from my broken leg far exceeded the pain from the open heart surgery.
I know open heart surgery sounds scary, but it is nothing compared to a disecting aneurysm, think about it this way, you know you have it and can do something about it, you are one of the lucky ones, a lot of people don't get that chance. In my case, I'm not going to lie I was nervous before surgery, but the stress of knowing I had a ticking bomb in my heart far exceeded the stress of surgery, I wanted it done as soon as possible.
As others said, find a thoracic surgeon that is an expert on aneurysms, someone who does this often, and get the support of a good cardiologist, also someone who specializes on aneurysms, if possible it is better if they belong to the same team and communicate, it makes a world of difference. Talk to them about any fear you have, the recovery, the details of the surgery, anything that gives you doubt or fear, they will have the answers.
I hope everything goes well, and yes ask me any questions you want to ask me, that is what this forum is for, to give each other advice and support.

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@jenali

What questions should I ask? I just sat there. The only question I thought of so far is…Will the mesh, or the closing wires interfere with future breast MRI’s? (I still have to get those once a year)…but not sure if I should ask anything else.
How was your recovery-if you don’t mind me asking? I’m terrified of being in excruciating pain.

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I had this surgery in an emergency situation because I had a complete sudden aortic dissection in 2015. You don't want that kind of emergency. I had no idea I had an issue until my aorta burst on a business trip 1500 miles from home and then it was a nightmare scenario. Do not wait. You can get all your work, estate, insurance, house, and family issues in order and let everybody know that you need their support. It's open heart surgery and it's a huge deal. BUT BUT BUT, you will be fine. This is a great opportunity to get to a great surgical center that is totally prepared for your case with all of the blood, materials, staff, and surgeons in place and scheduled. You are going to be fine, but listen to your doctors. If you are at a 5.2cm you need to have the surgery done. Everybody's recovery is different, but I'd say you will be moving pretty well after 2 months and feeling back to your old self within a year. It really depends upon your age, your physical health, etc. They will manage your pain, but nothing is free. I have had 9+ years of a great life after it happened to me at 50 years old. You're going to be fine but get it done. Make sure your surgeon is at least 50+ years old. She/he will have done thousands of operations. University of Minnesota, Mayo, Cleveland Clinic, UCSD-San Diego (where I had mine done) are all fantastic. The trick is to be brave and get it done. You owe it to yourself and your family. Peace.

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@houston13

Recovery speed depends a lot on your general health and fitness, in my case I was out of the hospital in 5 days and back to work in 3 weeks. The main source of pain of course is your broken sternum, when you cough, sneeze, laugh, but amazingly it starts healing fairly quickly, they will give you a pillow that you embrace everytime you need to sneeze, etc so that it dampens the effect of the strain on your chest, you will also get pain medication. I can tell you, they discovered my aneurysm after an MTB accident, I broke my leg and needed surgery, my open heart surgery was 3 months after my leg surgery (I did not want to wait so I had it as soon as feasible) the pain from my broken leg far exceeded the pain from the open heart surgery.
I know open heart surgery sounds scary, but it is nothing compared to a disecting aneurysm, think about it this way, you know you have it and can do something about it, you are one of the lucky ones, a lot of people don't get that chance. In my case, I'm not going to lie I was nervous before surgery, but the stress of knowing I had a ticking bomb in my heart far exceeded the stress of surgery, I wanted it done as soon as possible.
As others said, find a thoracic surgeon that is an expert on aneurysms, someone who does this often, and get the support of a good cardiologist, also someone who specializes on aneurysms, if possible it is better if they belong to the same team and communicate, it makes a world of difference. Talk to them about any fear you have, the recovery, the details of the surgery, anything that gives you doubt or fear, they will have the answers.
I hope everything goes well, and yes ask me any questions you want to ask me, that is what this forum is for, to give each other advice and support.

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Yep. I agreed with everything Houston13 says. My ticking time bomb blew up inside my chest and I can assure you I am here only by sheer luck. Most people who suffer a sudden complete dissection like mine are done before they hit the ground. That's the harsh reality. You have to hope that you survive long enough to get to an a close ER, meet a slammed ER doctor who is quick enough and smart enough to diagnose and deal with it. By deal with it I mean get you into surgery with a thoracic expert. They generally aren't waiting around at the hospital all night for your case. The mortality rate for sudden dissections is very very high. A sudden aortic dissection occurs when the wall of the aorta, the main artery carrying blood from your heart, tears. This is very dangerous because it can block blood flow to vital organs. Without treatment, about 50% of people with a dissection don’t survive the first 48 hours. Even with emergency treatment, it's still life-threatening. However, when you catch a problem early, like a 5.2 cm aortic aneurysm, you have time to plan treatment before it becomes an emergency. Over time, if left untreated, your aneurysm can grow larger, increasing the risk of a rupture or dissection. Elective surgery—before an emergency happens—can be life-saving. When done in a controlled setting, elective surgery greatly reduces the risk of serious complications like a rupture or other organ damage, and the survival rates for elective surgery are much higher than for emergency surgery. Peace.

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@moonboy

I had this surgery in an emergency situation because I had a complete sudden aortic dissection in 2015. You don't want that kind of emergency. I had no idea I had an issue until my aorta burst on a business trip 1500 miles from home and then it was a nightmare scenario. Do not wait. You can get all your work, estate, insurance, house, and family issues in order and let everybody know that you need their support. It's open heart surgery and it's a huge deal. BUT BUT BUT, you will be fine. This is a great opportunity to get to a great surgical center that is totally prepared for your case with all of the blood, materials, staff, and surgeons in place and scheduled. You are going to be fine, but listen to your doctors. If you are at a 5.2cm you need to have the surgery done. Everybody's recovery is different, but I'd say you will be moving pretty well after 2 months and feeling back to your old self within a year. It really depends upon your age, your physical health, etc. They will manage your pain, but nothing is free. I have had 9+ years of a great life after it happened to me at 50 years old. You're going to be fine but get it done. Make sure your surgeon is at least 50+ years old. She/he will have done thousands of operations. University of Minnesota, Mayo, Cleveland Clinic, UCSD-San Diego (where I had mine done) are all fantastic. The trick is to be brave and get it done. You owe it to yourself and your family. Peace.

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May i ask who your surgeon was at UCSD San Diego? Apparently someone worthy of investigating. thanks..

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Dr. Anthony Perricone, MD. He has since retired.

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Here I am with Dr. Perricone 1 year after surgery.

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I am with @moonboy on this one.
I too was an emergency. Late night - Friday. No one - NO ONE - wants to do a surgery at 1AM on Friday night/Saturday morning. My aorta dissected both ways for the entire length. When I presented to the hospital I was 5.8cm and within a few hours of lying in triage it was 6.5cm. I was about to leave this world for the next. OHS, removal, replacement, zzzt zzzt, done. Severity: my surgeon cancelled a quintuple bypass at another hospital to attend to me.
Two months later I had a scan for hernia and the operator saw that I still have the descending aortic dissection. He asked "Do they know about the dissection?" and I said "Yes. Why?" and he replied "Because if they didn't I'd be calling the paramedics right now." I am celebrating my first re-birthday this week.
But don't be fooled - we are here through extremely good luck, but luck alone. Look at @moonboy 's story in other posts (and mine if you like, and we are not the only ones). Read and take heed.
...
When you have the power to change your life, don't leave it to luck.

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