5.0cm ascending aorta with BAV

[Gregory]

Hi Folks,
I am new to the forum after several months of reading as a non-registered user. 34 years old, BAV diagnosed when I was 9. Very well functioning valve but I discovered by accident (I wasn't looking for it) that I had a 5.0cm ascending aortic aneurysm and dilitation of 4.3 cm at the root.

I'd been getting echos all my life but it wasn't until I had a CT scan looking for calcification of the arteries (of which there was no evidence) that the aneurysm was brought to my attention. After the fact I discovered that the ascending aorta had been measured at 4.9cm on a consistent basis dating back 5 years - but nobody thought to bring this to my attention.

I have seen 3 really top flight and notable surgeons. One who I respect a great deal has suggested I wait and monitor. The other - at the Cleveland Clinic - is urging me to head into surgery sooner rather than later. I am fortunate in that there does not appear to be any dissection present. I'm inclined to act sooner rather than later and I have scheduled a surgery date in Cleveland.

I've corresponded with Tom outside of VR and I have really enjoyed CDBHeartman's posts as I went through such a similar internal debate. I am also 6'4 - but height runs in the family and I have tested negative for Marfans several times.

This has been a great resource and I hope to contribute to the community.

Greg

 

[Superbob]

Greg,

Great to have you with us. I, too, am amazed that no med professionals thought to inform you when the ascending aorta was measuring 4.9. From everything I've been through (root and valve replacement when it had reached 5.3 on echo), it's my understanding that 4.9 is right at the time for action. My personal opinion is that your instincts are right to go with the Cleveland Clinic folks.

Look forward to your posts. All best wishes....

 

[ottagal]

Hi Greg,
I just wanted to add a warm welcome to this site. You will find invaluable info and support here. Wishing you all the best,

 

[Eva]

Welcome aboard, Greg

It is frustrating how doctors overlook important and sensitive details sometimes.

You are lucky and blessed to have done the CT scan! I do not have experience with BAV, but I am sure your CC surgeon is right. It is always better sooner than later. I wish I had my surgery sooner...I complained to my cardio about extreme fatigue for over three months at least two years before my surgery and he ignored this and he is a top notch reputable cardio! It is sad if the reason doctors overlook such matters is only be because *they are too busy and overbooked*!!

Good luck and keep us posted

 

[AgilityDog]

My personal vote: Get thee to Cleveland! It's easier when you are healthy, and you don't want an emergency surgery. If you've got a good surgeon who'll do it now, and your insurance agrees, get it done.

 

[skeptic49]

Greg,

Welcome to VR.org. Question: since your BAV is functioning properly, if you have surgery now it would be limited to repair of the aneurysm. Is that correct? Where i'm going with this is my concern relative to avoiding repeat surgeries, if possible. I don't suppose they would replace the BAV now? In terms of the size of your aneurysm, I agree with what the others have said. 5.0 is show time. I wouldn't want to be walking around with that in my chest. How much bigger would it have to get anyway? It's too risky.

Best wishes,

Jim

 

[Gregory]

Thanks for all the warm wishes and the encouragement. To answer Jim's question, I would be going for a valve sparing surgery, which has been the consensus view among the three specialist surgeons I have seen. The BAV performs well, diseased though it may be, and the thinking is that I could enjoy it through my 5th, 6th, or 7th decade - maybe even longer. Hopefully if and when that day comes, transcatheter solutions are the norm. All that being said, I recognize that there's a risk that it could leak or calcify before that time and hopefully the folks in cleveland will tighten things up a bit.

This community promises to be a great resource on this journey.

 

[Greg a]

Hi Folks,
I am new to the forum after several months of reading as a non-registered user. 34 years old, BAV diagnosed when I was 9. Very well functioning valve but I discovered by accident (I wasn't looking for it) that I had a 5.0cm ascending aortic aneurysm and dilitation of 4.3 cm at the root.

I'd been getting echos all my life but it wasn't until I had a CT scan looking for calcification of the arteries (of which there was no evidence) that the aneurysm was brought to my attention. After the fact I discovered that the ascending aorta had been measured at 4.9cm on a consistent basis dating back 5 years - but nobody thought to bring this to my attention.

I have seen 3 really top flight and notable surgeons. One who I respect a great deal has suggested I wait and monitor. The other - at the Cleveland Clinic - is urging me to head into surgery sooner rather than later. I am fortunate in that there does not appear to be any dissection present. I'm inclined to act sooner rather than later and I have scheduled a surgery date in Cleveland.

I've corresponded with Tom outside of VR and I have really enjoyed CDBHeartman's posts as I went through such a similar internal debate. I am also 6'4 - but height runs in the family and I have tested negative for Marfans several times.

This has been a great resource and I hope to contribute to the community.

Greg

WELCOME TO OUR FAMILY OF BROTHERS ANS SISTERS IN OHS

I could not agree more on the sooner rather than never (Iknow you said later but with that fantastic muscle in our chest there is no point putting off the maintenance)
I was wondering what the reviews are like on Clevland Clinic in Florida no chance of snow there

 

[Duffey]

Hi, Greg.
Glad to meet you, but I wish it were under different circumstances.:rolleyes2:
You sound like you've got everything under control, so I'll sit back with the other VR members and cheer you on through surgery and recovery.:smile2:

 

[jake]

I jumped in and took a seat in the waiting room after my third trip to the ER with chest pain (likely brought on by anxiety and a 5cm aorta). My day is coming in a couple weeks and let me tell you, I understand your situation 100% and right on the dot! My experience includes the goof ass doctors overlooking the obvious in another hospital system. I lived 43 years knowing nothing of my condition. 4 years earlier, I underwent several MRI’s for my spine and looking back on them, the aneurism was obvious. They all missed it. They made every single other kind of incidental note of other stuff, but missed a 4+cm ascending aorta. Go figure! They went ahead and jammed a drug eluding stent in my RCA which forced me onto Plavix for a year. That put me in a holding pattern whether I liked it or not! Had it (my AAA) been discovered back than, who knows where I would be right now. I simply was not equipped back than to make the move and my body wasn’t ready anyway as it turns out. Now it is.

Funny thing was that back than, I was hog tied to an insurance policy that forced me into a hospital system that I would be very afraid to have this surgery done at. I got a chance to get onto a better policy a year later and than found out I needed an aortic repair and maybe a valve job just like you. Armed with a PPO instead of an HMO, I now could traverse to other hospitals and get other opinions. Boy am I glad I did!

I took myself down to a University and as I started on my most amazing journey of meetings, pre-op testing, research and a lot of soul searching, I have made my decisions and there is simply no turning back. It just feels right, as fearful as it may be, there is simply no denying that my time has come. Know this, no matter what you do, take a minute and look around, think about things and ask yourself if it all seems right to you. Your gut doesn’t know from centimeters, or gradients or calcifications, or HMO's it only knows what’s right and wrong. If everything seems like it was meant to happen, if your gut tells you to take the next step, than take that next step. CC has a hell of a reputation, you will be in good hands.

When I left my last meeting with my surgeon, I asked him point blank if this was the right time or if I was rushing the decision. He said that the right time was a year ago, and could likely stretch to a year from now. What is the benefit in waiting? I told him I felt like I was in very good hands. He responded to me “we are all in Gods hands.” With that level of humility, it was as if though fate had put the cherry on top of the banana split!

 

[Duff Man]

Good call on scheduling surgery with CC. They're a high volume institution with very experienced surgeons, which makes the procedure less risky in my opinion.

As far as the timing issue is concerned, 5.0 is go time almost universally now. 5.0, or 5.5. But the difference between 4.9 and 5.0 is almost literally splitting hairs. It is ONE millimeter. It's could already be 5.0 and they just took the snap shot at a slightly lower cardiac phase interval, or maybe it's even grown since the last imaging.

Best of luck!

 

[Gregory]

Thanks Duff and Jake. Good luck to you, Jake - when is your date?

I am 31 days out of surgery and coming along pretty well. Dr. Svensson in Cleveland was able to repair the ascending aorta and left my well functioning bicuspid valve in place (no David procedure required). I was discharged after 4 days and things have been fairly smooth. The only issues that have cropped up are a bit of fluid build up around the right side of my heart, which can likely be treated with some anti-inflammatory medication that's underway, and a bit of mild hypokinesis of my right venrticular function (I've posted on this in the post-surgery forum). The sluggish right heart function worries me a bit, but I have been told it can happen as part of surgery trauma and that it usually self-corrects with time. Otherwise, I feel good and have had a decent go (though it was no pic-nic early on, to be sure - it's a tough process, but we are resilient).

Thanks again
Greg

 

[jake]

I’m glad to hear you doing well Greg. I’m just a little bit under two weeks away from my procedure (pretty much the exact same procedure you underwent). I am growing very uneasy and anxious as each day passes. Right about now, a month post op seems like a million years away to me right now Greg. I opted to use the University of Michigan after being lucky enough to be able to be put in the hands of Dr. Deeb, a very gifted surgeon with a specialization in matters of the Aorta. Just the same, I am simply rung out from the mounting anxiety. I am a heinous type A personality and nothing will send a type A into a tail spin like facing something like this.

I hope your issues resolve of themselves my friend. For as many people as there are on the planet, as there are as many issues that can pop up for anyone after such an invasive procedure.

Has anyone at the CC provided you with any explanation of what the reason is for the hypokinesis and if it can be considered a typical consequence of this surgery? What parcipitated them checking for this condition?

I know it has been said many times but how lucky are we to have this great forum to share our stories and get answers and commiserate on? I think I would have had a nervous breakdown if not for the ability to vent a bit and exchange information here on this forum.

 

[Gregory]

Jake -
I replied to you by PM, but just in case you didn't receive it, I wanted to wish you luck; they are really good at this stuff these days and you will be happy to get this behind you. Waiting is very difficult.

In terms of the hypokinesis - it seems to be a bit of a complex issue and I am probably a bit out of my element. It can happen to some people - the right ventricle is apparently tougher to protect in surgery. Some unlucky few have a sluggish contraction after surgery but from what I gather it usually resolves itself, assuming no other issues are present (history of heart attack, congestive heart failure). There's not a lot out there, but I have been re-assured that there's a very good chance it will go away within a few months. I've also read studies that indicate 2d echo imaging is not a great metric of right ventricular function, and the 3d echo imaging or MRIs might reveal function to be essentially normal, where it is not indicated as such on 2d echo. As I mentioned - it's a fuzzy issue and I am out of my element so try not to worry about this one too much. I've only found one other person on VR that's had this post valve surgery...

Good luck to you.