BAV and other connective tissue anomalies?

[shanwow1]

Hello again,

I posted for the first time last week, thanks again for the warm welcome. I had my appointment with my new cardiologist yesterday, my first follow-up since moving to Vancouver from Edmonton in January. The doctor was great and really helped me understand my diagnosis in a way I have never heard before. I have a Bicuspid Aortic valve with no stenosis but severe insufficiency (regurgitation). We spent a lot of time going over the progression of my symptoms over the last year and although the symptoms have come on slowly, the more I think about it and talk about it, I do feel that there is marked difference in my health from even 6 months ago. Based on my symptoms of decreased exercise tolerance, shortness of breath on exertion and increased length of palpitations, coupled with the fact that my regurgitation is now solidly at the severe level, it looks like surgery will be happening in the next year or 2. I did find some comedy in the situation, as the cardiologist kept using the word "intervene" as a synonym for surgery, which for some reason makes me picture sitting down with my valve and having a stern talk with it to tell it to smarten up! The cardiologist will be scheduling an MRI to see if my heart has enlarged since my last MRI in 2011, which will be the confirmation that surgery is required imminently. She also wants a stress test to confirm my symptoms on exertion, and to see me again in 3 months. She also briefly mentioned the valve options, and I mentioned that I thought mechanical was the obvious choice for someone my age (26). I was surprised to hear that this isn't exactly a given, and that tissue valves have been improved to expect 10-15 years even for someone so young, and that valve in valve surgeries through the groin are becoming more and more common for when the tissue valve does inevitably fail. She didn't mention the possibility of repair, so that is something I would inquire about next time.

I was a bit upset afterwards, but overall I feel like I was prepared for this scenario, and I feel positive about the high success rate of the surgery. I think I am hoping that the MRI doesn't show too much enlargement so that I can wait another 3-6 months and hopefully be back in Edmonton where we have a larger support system.

One positive thing I found out was that I show no signs of aortic aneurysm or enlargement, which I was concerned about given my family history. I know there is a possibility that I could develop this later on, but for now it's one thing at a time. I also learned that in addition to my pseudocoarctation of the descending aortic arch, I also have an aberrant left subclavian artery. Neither of these things are contributing to my condition currently but it is interesting that my plumbing is a little different in addition to my BAV. Anyone else on here with funky anomalies like that?

Anyways, thanks for reading, it's nice to have a place where I can just share, as well as ask questions.

 

[Duffey]

Thanks for bringing us up to speed with the cardiology appointment. I have/had a BAV, our son has a BAV, and our grandson has a BAV so the topic is of interest to me especially since you have regurgitation rather than stenosis.
Please continue to update as you move forward with the intervention, uh, sorry I mean replacement!:wink2:

 

[Bina]

I had been seeing a Cardio in Montreal for several years and he always spoke of surgery like it was no big deal, but unavoidable or I would die. Sheesh, thanks Dude.
Left his office crying a couple of times but I guess he expected me to "man up" and get it done. Nope, I stalled a dangerously long time....
Some younger women choose tissue valves so that they can have a child, others go with mechanical right away. Big decision.

 

[T in YVR]

Be careful about the 'repair' side of this - especially if it is a BAV. Although it is ideal to keep the same valve/human tissue etc, repair does not mean you would not eventually have to get it replaced one day. Also, I don't think St. Paul's does repairs. There are far fewer surgeons that do repairs due to the complexity of it. If I was contemplating a repair I would do alot of research on the surgeon and hospital. They do alot of TAVI at St. Paul's though, and in fact pioneered some of the work in this area. You just need to decide if you really want a tissue valve and another surgery vs. mechanical and warfarin etc. But that's a whole different topic and forum with tons of info and pros/cons!

Also, my surgeon told me that there is a far less chance of someone developing an aortic aneurysm later on - usually, by the time your valve is notably deteriorating (as yours is, if its 'severe'), an aortic aneurysm has usually developed by then (if its going to happen). That's not to say it couldn't happen later on - the odds of it happening are much lower (or 'unlikely' as he told me).

Also, from a timing standpoint, unless you are an urgent case, or had an aneurysm present etc., you can expect 2-3 months to have the surgery from the time the surgeon says 'go' (in BC that is; may be different elsewhere). From the time my surgeon made his recommendation to the surgery day, I waited 2.5 months (due to scheduling etc).

Tony

 

[clay_from_nj]

Also, from a timing standpoint, unless you are an urgent case, or had an aneurysm present etc., you can expect 2-3 months to have the surgery from the time the surgeon says 'go' (in BC that is; may be different elsewhere). From the time my surgeon made his recommendation to the surgery day, I waited 2.5 months (due to scheduling etc).

I couldn't believe when I first met with my surgeon and he said that I could be in that week if I wanted. I went ahead quite soon (a couple of weeks) and got it done in September so that I wouldn't have to wait through the winter holidays and get it done some time in January or February. Also, it saved my wife from driving through Denver snow to visit me and then bring me home.

 

[shanwow1]

Some younger women choose tissue valves so that they can have a child, others go with mechanical right away. Big decision.

I am pretty sure I don't want to have children naturally so luckily that is one less thing to factor into the decision. I am leaning heavily towards mechanical.

Also, my surgeon told me that there is a far less chance of someone developing an aortic aneurysm later on

Well that's good news. I hope that is true for me, but I'm sure they will monitor it regardless.

My MRI and stress test have been booked for February and I see the Cardiologist again in March. I guess we'll move forward from there!

 

[Superman]

I had my valve replaced just before I turned 18, with a mechanical valve. I had a second OHS at 36 to repair an aortic aneurysm. My ascending aorta and arch were replaced with a graft (one piece valve and graft replaced my old mechanical). I didn't have to replace the valve, the old mechanical was fine. I just felt better about the one piece than sewing a seperate graft onto the mechanical valve that was sewn in place. Seemed like too many places where things could seperate.

The valve itself being bad does not cause the aneurysm, so getting a new valve won't change the chances of aneurysm. If you have that part of the congenital defect, then there is a chance you'll develop an aneurysm. If you don't, then you won't.

 

[tjay]

Can you recommend a good cardiologist in Vancouver BC area? I may be moving there in the near future and would need to see one. Also good surgeons there for valve and aortic surgeries.
Don't know what to expect in Vancouver, so your guidance is appreciated.
thanks

 

[shanwow1]

Can you recommend a good cardiologist in Vancouver BC area? I may be moving there in the near future and would need to see one. Also good surgeons there for valve and aortic surgeries.
Don't know what to expect in Vancouver, so your guidance is appreciated.
thanks

Well I'm still pretty new to the area, but St. Paul's Hospital and the Pacific Adult Congenital Heart Clinic (or PACH Clinic for short) is, as I understand it, the only place to go in BC for those of us with congenital heart defects like BAV, and they are a leader in Canada when it comes to valve surgery and specifically the TAVR procedure. So you would be in good hands there. The cardiologist I am seeing is Dr. Jasmine Grewal, and so far I like her. She is very matter of fact and straightforward, which I think is good. Haven't seen a surgeon yet.

T in YVR had his surgery at St. Paul's Hospital so I will let him tell you about that experience