Tortuous aortic aneurysm

Posted by hemth @hemth, Aug 29 10:54pm

Looking for a discussion on finding the right doctor and what to expect to deal with it?? Just found out it has grown to a critical stage and am scared of prognosis in repairing it. Please share any good or bad news.
Sincerely
Helene

Interested in more discussions like this? Go to the Aortic Aneurysms group.

SC, I lucked out and got a good surgeon. At 70 yrs old I had an aortic aneurysm and a quadruple by-pass. Left the hospital two days early. They said it was a first. Was not crazy about the hospital, but the surgeon was great. I was in good physical condition going in. Started rehab two weeks later in better condition than most that left rehab three weeks later. Almost 9 years later I am off all meds and still hit the gym at least three days a week. Make sure you get a good cardiologist, I'm on my third cardiologist. The first gave me a low-flow TIA by overdosing me. He didn't even have the guts to show up at the hospital. Beta blockers have Serious side effects and hundreds of interactions, read-up on them. Second cardiologist refused to listen to anything the patient had to say. He overdosed me and gave me another low-flow TIA. This time I knew what it was. Changed hospitals and doctors. #3 took me off the poison immediately. If it was for the internet, I would not be writing this. Research, be your own advocate and not the side effects of the medication. Stay positive. Good luck.

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Hi @hemth i am 43 I was diagnosed in 2019 with a tortuous aorta and I had a mid-descending aortic aneurysm as well as a very large left subclavian aneurysm. I had no symptoms I just had a cardiac mri for a better look at my bicuspid aortic valve because I had developed high blood pressure suddenly. My cardiologist immediately referred me to Mayo. Our hospital has some kind of partnership with Mayo so that was the first reason- also the surgeon in Pensacola where I lived did not feel comfortable with the surgery. I was referred to Rochester to Dr. Pochettino who is the aortic specialist. He told me I needed surgery and soon- my subclavian aneurysm was the big concern. Over thanksgiving break that year we flew to Rochester with my kids and I ended up having a thoracotomy with aortic and subclavian grafts. It was a very scary surgery for me- I needed bypass and hypothermia arrest, but Dr. Pochettino and his team were amazing. I was in the hospital 8 days flying back to Florida 10 days after surgery. I highly recommend Mayo for you. You need to go to a place that specializes and performs many surgeries like this. That is why my surgeon sent me there- he said he could do the surgery- but it’s not something he sees on a frequent basis as an aortic specialist would. Best of luck-

Jeane

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@jeanern01

Hi @hemth i am 43 I was diagnosed in 2019 with a tortuous aorta and I had a mid-descending aortic aneurysm as well as a very large left subclavian aneurysm. I had no symptoms I just had a cardiac mri for a better look at my bicuspid aortic valve because I had developed high blood pressure suddenly. My cardiologist immediately referred me to Mayo. Our hospital has some kind of partnership with Mayo so that was the first reason- also the surgeon in Pensacola where I lived did not feel comfortable with the surgery. I was referred to Rochester to Dr. Pochettino who is the aortic specialist. He told me I needed surgery and soon- my subclavian aneurysm was the big concern. Over thanksgiving break that year we flew to Rochester with my kids and I ended up having a thoracotomy with aortic and subclavian grafts. It was a very scary surgery for me- I needed bypass and hypothermia arrest, but Dr. Pochettino and his team were amazing. I was in the hospital 8 days flying back to Florida 10 days after surgery. I highly recommend Mayo for you. You need to go to a place that specializes and performs many surgeries like this. That is why my surgeon sent me there- he said he could do the surgery- but it’s not something he sees on a frequent basis as an aortic specialist would. Best of luck-

Jeane

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Hi jeane just wondering with the great outcome you had if you ever mentioned to your doctor if you could give his name and number out for referrals. As a patient of mayo rochester would like to have my team maybe consult with that doctor for their opinion thanks for your response

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@davej

Hi jeane just wondering with the great outcome you had if you ever mentioned to your doctor if you could give his name and number out for referrals. As a patient of mayo rochester would like to have my team maybe consult with that doctor for their opinion thanks for your response

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I recommend you just reach out to Mayo cardiovascular center. I had to do that, my doctor alone wasn’t able to get my referral done. They just had me send all my information and records— they reviewed it and then decided if I would
Benefit from their services. It took about 6-8 weeks for me to get through the review part- then another 4 weeks to be seen. It’s a lengthy process- the whole team reviewed my records and they had a plan before they called me back. I am not sure of that phone number but calling the main Mayo line should be able to connect you with the right people. I first saw a cardiologist at Mayo then saw the surgeon. I don’t know if this helped at all, but I would definitely try and reach out to them.

Jeane

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Hello everyone- I was in recently for chest pressure and back pain with shortness of breath and told I had a mildly tortuous aorta – sounds like no treatment is needed but is this genetic /inherited? I’m 48

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@mnfirefly

Hello everyone- I was in recently for chest pressure and back pain with shortness of breath and told I had a mildly tortuous aorta – sounds like no treatment is needed but is this genetic /inherited? I’m 48

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Hi mnfirefly. When I was diagnosed with my aortic aneurysm my Dr sent me for a genetic test – a simple blood test. He said that would affect his treatment plan. As it turned out, mine is not genetic.

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