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Bicuspid Aortic Valve w/ Aneurysmal Thoracic Aorta and Aortic Root

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Posted 9/15/2013 5:16 PM (GMT 0)
So glad I came across this site! So many inspirational stories and hope...thank you:)

I am 40 years old, with a long history of smoking (now an ex), long history of high cholesterol and more than likely, hypertension.

I started with swelling in my right arm, had a ct chest scan and they found a aneurysmal dilation of the ascending aorta at 5.2 cm and emphysema with COPD. Had an echo done next and in addition to the ascending aorta at 5.2 cm, the aortic root is at 4 cm and I have a bicuspid aortic valve. I also have trivial regurgitation in the mitral and tricuspid valves and concentric left venticular hypertrophy!!

I cannot get into the Cardiologist for 2 weeks. My primary has told me that there are NOT 2 aneurysms, that they are of the same one, how is that??? I have been experiencing chest pain and shortness of breath...could it be due to the emphysema? ...

I have no idea of what they are going to want to do, if anything. Anyone else have anything similar? Any thoughts please?!!!

Thanks- Sharon

Post Edited (RSCAC) : 9/16/2013 6:39:30 AM (GMT-6)

Posted 9/16/2013 1:21 PM (GMT 0)
So, I can only speak from my own experience. I am 38 year old female, with bicuspid aortic valve disease, however, mine was discovered at birth. I've been followed my entire life, with the knowledge that one day I would more than likely have to replace the aortic valve. It is common with bicuspid aortic valve disease, to also have an ascending thoratic aortic aneurysm, as often times the aortic tissue is also diseased.

For me, I was waiting until my aneurysm was at 4.5 cm, then we would go in and replace the valve and repair the aneurysm. However, I got an infection last year and had to replace the valve, but couldn't repair the aneurysm due to the infection.

So, with that being said, I go to an adult congenital heart disease clinic (Emory, Atlanta GA), as bicuspid aortic valve disease is a congenital defect, or heart defect we are born with. I work with a pediatric cardiologist along with an adult specialist and my CT surgeon is a pediatric surgeon.

My guess is that COPD will complicate things further. Surgery is the only repair, however some meds are thought to help slow the aneurysm growth.

The symptoms you are describing are the things I've always been told to look for as symptoms of worsening condition, however I guess they could also be associated with COPD. I would push to try and see a cardiologist sooner and also research the appropriate place in your area. Where do you live?
Posted 9/16/2013 2:17 PM (GMT 0)
Thanks for the response, I can't imagine knowing your whole life....it's stressful.
I live in Illinois and it sure seems like in our area that Doctors are in short supply.

My primary told me not to worry and that if the Cardiologist couldn't get me in for 6 months that he wouldn't be concerned. Easy for them to say:) He mentioned that they may want to do a metal valve replacement but that would require a lifetime of blood work checks every 2 weeks.....

I just would like some answers as to what is going to happen, I guess I should just be patient and be glad that 2 weeks is just around the corner.

Are you ever concerned about the aneurysm "bursting"?
Posted 9/16/2013 10:40 PM (GMT 0)
This is where I would go in Illinois: http://www.nmh.org/nm/heart-valve-disease-adult-congenital-heart-disease. I work for a Children's hospital in Atlanta and have peers that I work with at Chicago Children's and this is where they send their patients as they become adults.

In valve replacement, you will have to consider a mechanical valve or tissue. Mechanical valves last longer, but do require daily blood thinners. mechanical valves can also be kinda noisy. Tissue valves do not last as long, 15-20 years (I hope) and do not require blood thinners. I went with tissue as I also have Crohn's disease and blood thinners aren't a goo option for me. I know I will have the valve replaced again if not 2 more times in my lifetime. But, medicine is getting better as are options.

Am I concerned about my aneurysm "bursting"? No, not really. I can't live with all that worry. I run, do yoga, pilates and eat well. I don't lift weights. I take a beta-blocker. I hope for the best and keep on living. I trust my docs and that's a big piece of mind. I know I have the best and they know what they are doing.
Posted 11/7/2013 2:17 AM (GMT 0)
RSCAC, so sorry I just saw this, as your original post was written 2 days after I had my surgery for my ascending aortic aneurysm. I also was born with a bicuspid aortic valve, and had surgery on it 7 years ago. I went with a mechanical valve as I only wanted to have one surgery. Unfortunately I then developed the aneurysm and underwent another surgery anyway. I can hear my valve, but it doesn't bother me, you get used to it. I do home testing for my coumadin dosing which helps me feel more in control of the situation. I hope by now you have seen a cardiologist, and even a cardiothoracic surgeon that specializes in this type of surgery. At 5.2 cm, you need to address this. Hang in there, I am less than 8 weeks post-op and walking over 3 miles a day. You will get through this.
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