Ascending aortic aneurysm and Bicuspid Aortic Valve--Please talk to me! (New to this)

[HopefulHeart]

Hi jhc1....and Gail in CA! Thanks for taking the time to respond to me. I appreciate your advice and your words of encouragement. I've been researching hospitals and surgeons for aortic repair. I live in Charlotte, NC and my local hospital has just announced a partnership with Cleveland Clinic for heart care. I've also been researching Mayo Clinic and Johns Hopkins. I want to go where the most experience is, that is for sure.

 

[HopefulHeart]

Bracken......one more thing. Your comment about your cardiologist being nonchalant about your diagnosis and the surgery really struck me. Every time I've met with my cardiologist, since day 1, he's had the same nonchalant attitude. I've been troubled by this a few times because I'm trembling on the inside with fear as we're discussing future surgery and my cardiologist is just looking at me like, "Same stuff, different day....big deal." And I've just wanted to say, "Hey...we're talking about my chest being opened up here, not a walk in the park." So it all makes sense now. Thanks for that insight! It made me feel better.

 

[Bracken]

Hi Bracken,

Did you have a full sternotomy?

As bad as this may sound I'm not 100% certain, since I've heard that a full sternotomy can be done with a small incision. With that being said, I'm fairly sure it was a partial sternotomy. This wasn't something I discussed with my surgeon in advance. I actually assumed my incision would be larger than it was and I was fairly surprised to see it was only 5-6 inches or so.

 

[Bracken]

Bracken......THANK YOU so very much for your post. As I read it, I started feeling a great deal of relief. I'm so happy to hear that your surgery and recovery went so well. I will keep your words in mind the next time I mention my heart condition and someone looks at me with that "Oh my! How horrible!" look.

How do you feel with the new heart valve? Does it give you any symptoms or require any meds to be taken (such as blood thinners for mechanical valves)?

Yeah, I know that look. People did the same to me. Hell, I would probably give someone that look prior to my experience. I don't feel any different with the new heart valve. I was asymptomatic before so for me just feeling normal is a good thing. I have no current symptoms or issues. After my diagnosis my cardiologist put me on 100mg of a beta-blocker toprol for high blood pressure. Post surgery they dropped it to 50mg and at my 6 mo check-up I hope it can be stopped all together. I do not take coumadin since I selected a tissue valve.

Bracken......one more thing. Your comment about your cardiologist being nonchalant about your diagnosis and the surgery really struck me. Every time I've met with my cardiologist, since day 1, he's had the same nonchalant attitude. I've been troubled by this a few times because I'm trembling on the inside with fear as we're discussing future surgery and my cardiologist is just looking at me like, "Same stuff, different day....big deal." And I've just wanted to say, "Hey...we're talking about my chest being opened up here, not a walk in the park." So it all makes sense now. Thanks for that insight! It made me feel better.

At first I was also troubled by this. But then it became reassuring that there was no wavering, no second guessing. My cardiologist was so calm and was so "matter of fact" about it that it eventually put me at ease. This was later reinforced when I met my surgeon. I appreciated the conviction and confidence that he exuded.

 

[rtblount]

rtblount

rtblount

Hello everyone--
I'm new to the world of heart issues. I went to the Dr. 7 years ago for a sore throat and came out with the bombshell that I had a heart murmur. The heart murmur turned out to be a Bicuspid Aortic valve (I'm 38 years old and never knew). Investigation of the BAV revealed I also have an ascending aortic aneurysm of 4.2 cm (again, I'm 38 years old and never knew....never had symptoms). My shock continued when I discovered that my grandmother and my uncle both died of heart defects....uncle died in surgery for defective valve. This past fall, my mother was horrified to find out she also has a BAV. I'm shaking my fists in the air with anger at the fact that this heart defect is so prevalent in my family and my family has been blind to it all these years, even with family members dying! Anyway, I have no symptoms and feel great, but am being monitored yearly by a cardiologist. The aneurysm has been stable for the past 7 years. At some point, I will have to have heart surgery to repair the aneurysm. Surgery scares the heck out of me since my uncle did not make it out......Frankly, I think my uncle went to the wrong surgeon. Have any of you had the ascending aortic surgery?? My valve may be spared if it continues to have no symptoms. Can anyone comment on the surgery?? Where did you have it done?? I'd love to hear some good outcomes!

Your experience is so much like mine it is uncanny. I had my BAV discovered 16 years ago after having a visual stroke with virtual blind lasting several days. The valve was replaced in 1997 with a St Jude mechanccal valve which is still working perfectly. 10 years later it was discovered that I has a ascending aortic aneurysm that was about 5.3cm. My cardio watched it using echos and ct scans for 6 years with no change in size and no symptons until the latter part of 2012 when it had increased to 5.5cm. On his recommendation and after my own research we decided to have Dr Lars Svensson at the Cleveland Clinic in Ohio evaluate it. The surgery was done by Dr Svensson in January of 2012 and I have nothing but accolades for the Cleveland Clinic and Dr Svensson. I suggest you request your cardio have the CC evaluate your valve and aneurysm there It is the number 1 rated hospital in the world for heart and aneurysm treatment.

 

[HopefulHeart]

My ascending aortic aneurysm has been monitored for the last 6 years with yearly echos and ct/mri scans......so far it has remained stable at 4.2 cm. Thanks for your comments on the Cleveland Clinic. Lots of people have been commenting on their good experiences there as well. I'd say at this point they are #1 on my list and hopefully I will be able to have Dr. Svensson do my procedure as well when the time comes.

 

[Agian]

Live and learn, as they say. Cardiologist number 1 told me that the ascending aorta grows by 1 mm a year, and yet yours has remained the same for six years

 

[Heart Of The Sunrise]

My aortic aneurysm when my BAV was first discovered was 4.9cm (OCT 2012). It was made very clear to me at that time when the valve was replaced that the aortic would need to be repaired.
5.0 is the ultimate trigger for surgery.

 

[SuzanneSLO]

The current guidelines suggest that a cutoff of 5.0 cm be used for intervention or 4.5 cm if the surgery is otherwise being performed for valve indications. There are some that beleive that aortic size relative to body size may be a better method to define the high-risk group requiring surgery. -- Suzanne

 

[HopefulHeart]

SuzanneSLO........I was also told of the 4.5 cm cutoff if the surgery is being performed for the valve. That guideline is new, having just been put in place in the last year or so. Since I'm at 4.2 cm I freaked out when my cardiologist told me that. However, my valve is in good shape in spite of being a BAV.

Comparing aortic size relative to body size in order to define the high-risk group requiring surgery is an interesting point you made. I think that is where all of this gets fuzzy in terms of deciding the best time for intervention for an aneurysm. I'm not a tall person and I'm carrying a few extra pounds, so I've often wondered if my cutoff for intervention would be different than someone with a different body size but same size aneurysm. Anyone have any information that could shed some light on this?? Thanks.