Valve repair in Canada

[Bushman]

I just got out of a meeting with a Cardiac Surgeon here in Calgary and I'm very upset to say the least.

I have moderate to severe regurgitation(AV) and am very tired but have no shortness of breath. The surgeon asked how my health is otherwise and I said great, I had a stress test yesterday and the results came back great(all average or above average). The surgeon was recommended by the Chief surgeon as he specializes in repairs and the chief thought I was a good candidate for a repair. After seeing the "repair specialist" he said I have a 20% chance of repair and an 80% chance of replacement, I don't understand what's going on here. I have already put a call in to the chief to find out who I can speak to about a second opinion.

I will probably forego getting this surgery done here in Calgary as my confidence is dwindling in this facility. I will put in a call to St. Paul's in Vancouver. Where else should I look for a second opinion?

I know I am upset right now but after the surgeon told me to wait 6 months and come back to see him, that was all I could take. Why would a Dr. want to wait for my condition to worsen and have no chance at a repair jeopardizing my health. He even stated that there is a possibility that if we wait that the repair will no longer be an option.

All I can say is that I am furious right now as I was expecting to have my repair surgery scheduled today and ended up leaving knowing less than I did before I went in.

Any help or advice would be greatly appreciated.

 

[Freddie]

It does sound a little confusing. Be told one thing and 3 minutes later the opposite is said. Too bad you didn't ask 'why wait another 6 months'.
If you go for another opinion that could take a great deal of time, (you're dealing with the Canadian health system) but you could
try calling Edmonton.......University Hospital I think.
An old member, Zipper 2 went there. Try finding her old posts as she names her doctors (McCarthy??) and the hospital.
But you have to look back a few years, maybe 3 years.

FWIW: my surgeon said the same thing, only he didn't use percentages.

Get another appointment and tell this Chief ,"the surgeon told me to wait 6 months and come back to see him. Why would a Dr. want to wait for my condition to worsen and have no chance at a repair jeopardizing my health. He even stated that there is a possibility that if we wait that the repair will no longer be an option".

 

[Freddie]

Here's what I found in Zippers posts:
Roderick MacArther m.d.MSc.FRCSC the program directer, Division of cardiac surgery at the Health Sciences Centre in Edmonton

just not sure if he's still there.

 

[Bushman]

Thanks Freddie, I'll look into it.

 

[shanwow1]

Hi Bushman, I have seen cardiologists at both the Edmonton University Hospital (Mazankowski) and St.Paul's in Vancouver for my BAV with moderate to severe regurgitation (more like severe now). Have not yet been referred to a surgeon for the same reasons your surgeon seems to be giving you about waiting. I too often feel very tired, but my symptoms have not yet been deemed to be "impacting my life" enough to make the surgery worthwhile right now. I have experienced a lot of anger, confusion and frustration about this as well, especially having to wait for things to "get worse". Basically they seem to be putting more weight on the fact that my ejection fraction (57%) and left ventricle size (slightly enlarged?) are still within normal range. Don't know what your measurements are, but that could be a factor in the surgeon's recommendation?

It's a tough thing having this hanging over your head. I've been in the "waiting room" 4 years now and still counting. Although I go back and forth on just wanting to get it over with and hoping the day never comes (not likely), I have tried to accept the fact that this is a major surgery with the possibility of complications that will affect me for the rest of my life, and even if all goes well it's still a pretty major trauma to the body. Right now I am living a fairly normal and healthy lifestyle so why not try to enjoy it while it lasts.

The repair option is something I haven't explored, so if that is really important to you then by all means search out a second opinion, even if you can't see someone in person and least they could give you another opinion on the chances of repair in your case. And if you feel like your symptoms are really affecting your life, then you can push them on that. But otherwise try to enjoy your pre-OHS days as much as possible. Just my 2 cents.

If you want to know more about my experience with the cardiologists in Vancouver and Edmonton I would be happy to share. Don't have any experience with surgeons yet though, sorry. Take care.

 

[Tejumurthy]

HI,
I'm just a 2 weeks post surgery to repair my BAV at cleveland clinic, USA. I'm not sure on the doctors and facility at canada. However below is my experience.
1. I'm having BAV.
2. I had symptoms like shortness of breath and dizziness.
3. I had aneurysm measuring 4.7 cm and aortic regurgitation severe category.
4. Doctors felt 60-70% of repair otherwise replacement of AV with mechanical.
5. While on surgery they were able to repair my BAV and replace aneurysm with Dacron graft.

What i heard is if you just have regurgitation and no aneurysm and no symptoms then doctors would recommend to wait because if the issue is not troubling and no other impacts. In my case i had both aneurysm, regurgitation and symptoms. In your case if you just have regurgitation and no symptoms, doctors may wait. Because if the surgery end up in replacement of AV, then you need to be on medication rest of your life. Since doctors may consider all possibilities before considering surgery.

Even i too had your situation before the surgery with different doctors. I'm not sure on if you do have BAV, aneurysm,etc issues other than regurgitation. try to find answers for these and then you can think of next possible steps.

Hope my write up may help you... let me know if you need further information on my case.

-Teju

 

[CanadianClicker]

What i heard is if you just have regurgitation and no aneurysm and no symptoms then doctors would recommend to wait because if the issue is not troubling and no other impacts. In my case i had both aneurysm, regurgitation and symptoms. In your case if you just have regurgitation and no symptoms, doctors may wait. Because if the surgery end up in replacement of AV, then you need to be on medication rest of your life. Since doctors may consider all possibilities before considering surgery.

Even i too had your situation before the surgery with different doctors. I'm not sure on if you do have BAV, aneurysm,etc issues other than regurgitation. try to find answers for these and then you can think of next possible steps.

-Teju

I echo Tejumurthy's statements. Surgeons have to weigh all the risks. I remember it being explained to me like something like: there are risks from having the BAV condition but there are also risks associated with OHS. Surgeons will responsibly wait for the risks from having surgery to be less than the risk from just living with BAV before they operate. Your Mileage May Vary.

Dan

Edited for poor grammer (of which there still is some in this post )

 

[river-wear]

FWIW, I had no aneurysm and no symptoms but still had my cardiologist and two surgeons say it was time for surgery. Their criteria was the decline in heart function (EF) between annual visits. When the surgeon got in there, he was amazed how bad the regurgitation was in spite of the data from the pre-surgery testing (TEE, CTA).

You have a right to ask lots of questions - so keep pushing for answers. Starting with what makes your valve so challenging to repair and why the two surgeons had differing opinions on your prognosis. As for whether it's really time to have surgery, I agree with Teju and Dan: it's best to wait until the risk of doing nothing becomes greater than the risk of surgery - even though at this stage the relative risks are both small.

 

[Bushman]

Thanks for the replies. I spoke to the chief of surgery about an hour after my original post and after I explained what took place he was left kind of confused himself as he was the one that advised me on my first visit a month ago that I should have this surgery within the next 6 months. He settled me down and assured me that he would talk to a few surgeons from around the country that specialize in repairs to get opinions on my situation and he would let me choose where I want to go. The Chief of Cardiac Surgery here in Calgary is such an understanding man and easy to talk to, I kind of feel bad for raising a stink. I hope to have this resolved within the next few weeks so that I can plan ahead and just move on.

 

[Jkm7]

You did the right thing to 'raise a stink' as you put it. Without speaking up, where would you be? Because you spoke honestly with your doctor, he is consulting about your case with surgeons he likely greatly respects and is investigating further for your case. Please let us know when you hear back from him. At least you will know doctors have consulted and have discussed your specific case. Best Wishes.

 

[Bushman]

So after speaking with a few more doctors this week, it appears that my chances are indeed small for a successful repair and if a repair is done that it will likely only last for 8-10 years anyway. I have accepted the fact that I will be getting a valve replacement. I figure a mechanical valve is the way to go and I will have an appointment soon with the surgeon to talk about my case and schedule a date for the surgery. .