1. < Aortic Aneurysms

Ascending Aortic Aneurysm & Bicuspid Aortic Heart Valve

Posted by jburgherr @jburgherr, Jun 8 10:32am

I’ve been diagnosed with both. I’m wondering if anyone else in the group has been diagnosed with both of these maladies and what their treatment plan has been.

It appears that surgery is recommended sooner than if only with AAA. If you had surgery, did they fix bot the valve and the aneurysms or just one of the two.

Waiting for my cardiologist to contact me with his treatment plan.

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

moonboy | @moonboy | Jul 21 11:12pm
In reply to @martinkennot "I was an emergency case. Thought I was having heart attack. Went to the hospital at..." + (show)
@martinkennot

I was an emergency case. Thought I was having heart attack. Went to the hospital at 1am - busted aortic valve, busted aortic root, ascending type-A and descending type-B dissections (my whole aorta was/is still dissected), and a 55mm aneurysm. I had no idea what was going on - and this ignorance saved me. They never told me how bad it was, or whether I would survive etc. They asked me to choose what type of valve and that was it. No other questions and so no panic.

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How long was your recovery and did they do deep hypothermic complete circulatory arrest on your case?

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martinkennot | @martinkennot | Jul 22 12:23am

Hmmm... ICU for 5 days, hospital ward for the rest of two weeks. Six to eight weeks for the sternomoty to heal. A few months for everything to get back to normal, but a new normal.
My heart was shut down of course, and lungs collapsed - everything run out to a heart lung machine or two and back again. Five litres of the good stuff replaced. I don't know about a deep hypothermic but I guess whatever it took. I will ask at the 12 month review. Or at the next appointment.

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summer230 | @summer230 | Jul 22 8:18am
In reply to @charlanepj "Don’t panic but stay vigilant. Mine was found by accident too. It was 4 cm. At..." + (show)
@charlanepj

Don’t panic but stay vigilant. Mine was found by accident too. It was 4 cm. At 4.5 I have an emergency double dissection. That was two years ago. Find a cardiologist or vascular Doctor that you trust and believe in. In the mean time (had I known) don’t lift anything that causes you to grunt or groan, hold your breath, or that you couldn’t lift push or pull repetitively. And work on keeping your blood pressure down until you get under a doctor’s care. And walk, walk, walk, as much as you can tolerate - don’t push it just a casual walk. Then when you get a doc, listen to them. Normally they don’t get too excited, unfortunately. Best wishes.

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So @charlanepj you had a dissection at 4.5 CM?
I'm just curious as I am at 4.3 CM. Still need a cardiologist appt.

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kathyflo | @kathyflo | Jul 22 9:20am

I appreciate everyone sharing their experiences. I (67 yr old female) also have a bicuspid aortic valve and a 4 cm ascending thoracic aorta, in the anxious watching and waiting period. This year my cardiologist referred me to a thoracic cardiac surgeon who I will see this week. He said a surgeon is more experienced to monitor the aorta and know when to recommend surgery, also suggesting there are differences between males and females regarding the aneurysm size to recommend surgery. I have the usual recommendations to avoid heavy lifting and high intensity and impact activites (no G forces, roller coasters). No restrictions on cardio exercise or travel. Keep blood pressure down. I will get a repeat CT scan in 6 month to evaluate growth rate.

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moonboy | @moonboy | Jul 22 9:29am

You're good. You know about it and you're under a doctor's care. The 6 month CT surveillance scans are super helpful because they will tell them when surgery is necessary. I had emergency open heart surgery to repair a burst aorta in 2015. I'm here by luck. You're going to be here for a long time to come. Keep your blood pressure down, watch your weight, no heavy lifting, no valsalva maneuvers, no planking. You'll be fine. I lowered my blood pressure by cutting the sugar completely. Lost weight, clearer skin, calmer, A1C of 5.7--down from 9.2. Peace.

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1 reply
kathyflo | @kathyflo | Jul 22 10:06am
In reply to @moonboy "You're good. You know about it and you're under a doctor's care. The 6 month CT..." + (show)
@moonboy

You're good. You know about it and you're under a doctor's care. The 6 month CT surveillance scans are super helpful because they will tell them when surgery is necessary. I had emergency open heart surgery to repair a burst aorta in 2015. I'm here by luck. You're going to be here for a long time to come. Keep your blood pressure down, watch your weight, no heavy lifting, no valsalva maneuvers, no planking. You'll be fine. I lowered my blood pressure by cutting the sugar completely. Lost weight, clearer skin, calmer, A1C of 5.7--down from 9.2. Peace.

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Thank you for your comments. I've read your story...amazing. I'm doing all the right things physically you suggest...just need to get out of my head and the white coat syndrome 🙂

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sosoro123 | @sosoro123 | Aug 15 9:04am

I am in the same situation, I have BAV and AAA at 4.5 cm , my age is 47 .
The opinion I have from my surgeon was that I need to fix AAA first because my valve is still okay. It is not the best biscupid valve of course , I already have some stenosis, but the urgency is to repair aneurysm first.
But this solution will most likely require another heart surgery later in life to replace the valve . Hope this helps

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sosoro123 | @sosoro123 | Aug 15 9:06am
In reply to @moonboy "I had a sudden Type A-1 Ascending Aortic Arch dissection June 2015. Repaired with a dacron..." + (show)
@moonboy

I had a sudden Type A-1 Ascending Aortic Arch dissection June 2015. Repaired with a dacron tube draft (30cm Long). Valve was damaged by dissection but repaired by surgery and did not need a mechanical valve. Like DaveJ, happy to try to answer any questions.

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What a big event for you, glad you made it !

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leonh | @leonh | Sep 4 9:04am

I had a bicuspid aortic valve with severe stenosis. Exit velocity near 5 m/sec and gradient measured at surgery was 85 mm-Hg.

My aorta was at 4.9 cm just at the beginning of the arch.
My choices were
1. Open heart surgery,
2. TAVR- minimally invasive valve replacement, or
3. Severely diminished life expectancy.

After much hand-wringing, I had a tavr... and did not repair the aorta ... as opposed to open heart surgery to repair both at once.

My aortic diameter went down to 4.8 cm after one year, and to 4.6 cm after two years.

For my age, height, etc. 4.5 cm is considered normal. I do have mild leakage around the valve. It doesn't seem to be degrading though.

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