Deciding on when to have surgery

[Prefo]

I am a newbie to the forum and have been reading all the wonderful comments and thoughts that are posted. I am hoping some of you can offer me your thoughts on your decision processes you went thru on deciding when to have AVR surgery. I am a 50 year old male with a bicuspid AV with stenosis that I've known about since childhood. For the last 3 decades I’ve gone for my yearly cardio check ups. Despite my stenosis, I don't find that my lifestyle and quality of life is affected that much - my job and daily routines are unaffected, blood pressure is very good, non smoker, not overweight, I do lite workouts 4x weeks, climbing stairs no problem etc. I just can't run a 10k anymore or do biathlons as I did 15 years ago, but then again I am also 50 now. I do get exercise induced angina pains if I push my workouts to too hard; this is my only symptom so far. Surgery remains elective for me at this point - and my cardiologist is still leaving the decision up to me, but saying I should start to think about it soon. Hoping some of you can share with me how you made your decision to have AVR surgery and what symptoms you had prior to surgery.

 

[Lotti]

Only my opinion

Only my opinion

Hi there. Glad you found this great site.

I had my surgery 2 years ago and unknown to the surgeons until they "got in there", my valve was SEVERELY calcified to the extent that they had to cut a lot of heart away so they could find something to sew to. I ended up having a long recovery and a badly working valve and a pacemaker because the pathways were cut during surgery getting rid of the chalk. It is believed that if it had been done much sooner then the calcification would not have been so bad, but due to my age it was decided to wait as long as possible until I was symptomatic. I am soon to be 40 but don't tell anyone!

There are so many people on this site that have had great recoveries and a brilliant lifestyle after surgery, so I'm guessing that timing can make a difference.

My only suggestion is don't let yourself get bad before being fixed if they say that you need surgery.

Take care and all the best

Lotti from England

 

[ctyguy]

Prefo...My situation as similar to yours in that I had a bicuspid Aortic valve with pretty severe stenosis. I however did not know about my issue until 15 days prior to the surgery. Once I knew I needed it, I got right after it.

In regards to symptoms, I had one big issue about a year ago where my dogs got loose and I went running down the street yelling and looking for them, after a few minutes I got to where I simply couldn't catch my breath and then I was down on one knee, and then down on the pavement passed out. I chalked it up to a panic attack but now I know that this was my first symptom (luckily not my last). I also was/am a runner. I used to run several times a week but I began to struggle with my runs (mild chest pain and breathing issues), hence my decision to see a cardiologist. I had no idea I even had an issue and then he tells me about my condition. He wouldn't put me on a treadmill for a stress test out of fear that something could go wrong.

I was told that the two things you need to be concerned with is the size of the valve opening and the gradient which represents the speed of the blood flow through the valve. A normal Aortic valve is about 3cm, my valve was .9cm, critical is .7cm and below. When you run the aorta asks for more blood to push out to the rest of the body, with the stenosis the heart simply can't pump enough blood through the valve, hence the chest pains. You stop running, heart rate reduces, symptoms go away. Go too hard and what happens ? you pass out like I did or your aorta ruptures and its see ya later amigo. The gradient measurement is what freaked me out and is what made me get straight to a surgeon. Normal gradient reading is like 20, mine was topping out at 115. When the tech doing the echo is making "hmmp" or "my my" type sounds/statements I knew I needed to get it taken care of. I was afraid that the valve was going to simply rupture.

Im 5 weeks post-op today and I can say for sure that the worst part of this whole thing was the time leading up to the procedure. The surgery itself isn't a picnic but its not nearly as bad as I had thought it was going to be. Within a few days I had more pain in my shoulders and lower back than I did from the incision. The discomfort I had was more to do with sleeping on my back. After 4 weeks from the surgery I was off all pain meds.

If you know you need this I would suggest to find a surgeon your comfortable with, educate yourself on procedure types and valve types, make a decision and get it over with. I hated walking around wondering every little thing I feel in my chest was gonna be the end of me. Is it my heart ? Is it my stomach ? Is it all in my head ?

Not sure where your from in this world but if you can get to the Cleveland Clinic I would strongly suggest getting an appointment. Brian Griffin is the Cardiologist I saw and he specializes in valve related issues. He is 25+ years in the field and is a great guy to talk with, really made me feel at ease when talking through the various options.

Good luck, hope all that mess helps.

P.S. Im 42 and other than the bum valve Im in excellent health.

 

[ALCapshaw2]

Welcome to our World 'Prefo'.

Old School Cardiologists like to wait until you are symptomatic (I.e. until you heart has been damaged!).

Most Surgeons prefer to 'get it FIXED' BEFORE permanent damage is done to the heart muscles and walls.

Modern thinking is leaning to "Sooner is Better" because less damage is done AND the incredibly High Success Rate of First Time Surgeries (1% risk of mortality, 1% risk of morbidity) vs. almost certain death in only a few years if NOTHING is done.

Given that you are BAV, I strongly recommend that you find a Surgeon who has considerable experience with BAV and Connective Tissue Disorders which often accompany BAV valves. (See the current thread entitled "aneurism" for relevant discussion)

When it comes to Timing for Surgery, I recommend getting the opinion of a surgeon, preferably an aortic / aorta specialist in your case.

'AL Capshaw'

 

[Bina]

Hello fellow Canuck and welcome.
My cardio was pushing me to get OHS whenever I would comment on my tiredness and sternum tightness. I was in denial and kept saying that I was just getting older....I was only 45!
My echocardiograms were showing some progressive stenosis for a couple of years. Finally another cardio saw me getting yet another echo, she looked at it, and ordered me not to drive a car anymore.
Then my GP confirmed that I would croak within a year or so. That was a bad week!
Don't be a chicken like me, get it done and have a smoother recovery because of it.

 

[Freddie]

Welcome Prefo

So nice to see another Canadian has found this wonderful site.

I agree with Bina. Why wait? If your cardio dude is saying you need it done, get done soon so you can have a smooth recovery.

My OHS surgery was said and done in 7 days - I didn't have time to think about it. But now that its done I can get on with my life and enjoy it.

I too was 45 when I had surgery.

P.S. I have a brother in Vancouver - 2 blocks from Robson Street

 

[JimL]

Your situation sounds so similar to what I went through as well, and I echo the answer others have given to your question: Don't get into the situation where the surgery is emergency surgery! I thought I was getting old too, since I couldn't do what I used to do. Ha! After surgery I can do what I never could before. But the calcification snuck up on me, and my surgery was performed in the nick of time; the surgeon said my valve had completely closed when he removed it.
Therefore, read, learn, ask questions, but plan to have the surgery sooner, not later.

 

[DeWayne]

Having had my first surgery when I was 5 I always knew that at some point in my life it would happen again. Unlike you I lived in a world of self denial for decades! I did not go to see a cardiologist from the time I was 19 to .... well the time I was 52.
Before this visit at age 52 I knew something was wrong. I could feel palpitations, sometimes a bit of double vision, other things I am not sure I can remember exactly, I just knew it was time.. I finally told my wife schedule an appointment and what ever you do don't let me talk you out of me going.
Because of my long time no visits to cardio I never knew about the trend of aneurysms being linked to BAV. When I finally got in, they did their echocardiogram and I waited for the doc. When she came in she said "do you want it straight?" I said yep. She told me I needed an operation and that it needed to happen in the next 6 months and until I had it not to pick up anything heavier than a loaf of bread, ok 10# but nothing more.
Seems the valve they opened up back in 1959 was fine but there was this slight bulging in my aortic root and aorta. (slight meaning 5.7 cm size) She just said you remember John Ritter? You have what killed him.
I was not shocked I told her why I was there and she said that I was lucky that I listened to what my body was saying.
I had an event coming up that I had paid for and had been waiting for for months, she said it was ok to wait till after that, so about 2 months after that meeting I was in the operating room. So far so good at at 20 months since.
What I had dreaded for most of my life turned out to be not so bad, 4 weeks after surgery they let me start driving and things have pretty much returned to normal, although it took almost a year before I really felt like my old self.

 

[Magic8Ball]

Hey, you made it to 50, i got to 38 before i needed it done.

Consider yourself one luck sob.

I'm with the rest, a cardio will wait and treat with medicine, a surgeon will want to operate...its a polar oposite view and you have to be the one in middle to balance the two opinions.

If you are feeling a few attacks after exercise then its time to go...i felt nothing, nada, i was doing taekwondo and going for my brown belt when i got the news.

I now feel totally normal heart wise and have made a full recovery with my heart shrinking back down to normal size.....its interesting now that my cardio and my surgeon are arguing over who takes credit for this....surgeon rightly thinks its the surgery...cardio thinks its the pills....

I think you know its time for surgery....the longer you wait the less of a recovery you should expect....liken it to squeaky brakes on your car...once you should fix them before they squeak, once they squeak you could get away with new pads but you may need a disk skim....if you leave it then you may need a more radical disc skim to fix it.....

You don't want to be needing new disc's

Thats enough of the automotive analogies.

I guess most will say if you need it done, get it done sooner rather than later....you will be happier with the result....

Just liken it with a dentist visit (whats with the analogies tonight ) you know you need to visit but you put it off and it turns from a simple filling into a crown....

Regards.

 

[WayneGM]

Welcome to the VR Community, fellow Canuck. Glad you found us.

I'd consult a Cardiac Surgeon for an opinion, and not just rely on the Cardiologist.

Best wishes and good luck.

 

[Marguerite53]

Hello and welcome!! You've already read some wonderful accounts and splendid advice!!

Yours and my situation are quite similar except I was an overweight, gourmet cook, stressed out mother of 3 teenagers type. I found out about my BAV in my 20's (okay, somewhat later, obviously!), had 3 births -- no problem, check-ups regularly to determine condition of defective valve. I am and have been feeling great at almost 2 years post-op.

I must say that your description of your cardiologist seems like he/she is being somewhat cavalier about your condition. I happened to come back from a routine echo with an aortic valve measure of 1.0. My GP sent me to a local cardio. He told me that undoubtedly in 1 to 3 years I would need AVR or likely die due to the increasing deterioration which would undoubtedly occur from the stenosis disease to my valve. That 1.0 was the magic number. He was a great doctor, but not tied to the hospital I would want to choose, so I switched to a female cardio with higher stature and better hospital. She kept me waiting and waiting and waiting. 3 years we watched the valve trickle down in size. Then, as happens quite frequently, it started to close up more quickly. When it hit .7 cm squared I consulted the surgeon. That was December. We decided to go ahead, but with "no hurry" attached to it. Suddenly, other medical issues arose for me and I had take care of those little surgeries (the anesthesiologists were NOT happy about having to deal with someone now in the "critical" range) and I did not have my AVR until mid-April. The valve size at surgery was .53. I believe that is deemed critical/severe.

So from my spot in this survey, I would advise you to learn what you can about the current severity of your stenosis. If you are way far from the 1.0.....relax!! carry on with your life. If you are under 1.0 then watch it closely (echo every 6 months if possible) and look ahead on your personal calendar. Find a zone of time, 2-3 months, when such a surgery might be a well timed thing. Book a date with a surgeon at any time to start getting true and real answers about your particular set of characteristics.

Cardiologists will want you to hang onto your native valve for as long as possible. I do not know why they do. So many of us have such improved lives so quickly after surgery.....what are they thinking!! The new tissue valves are working longer and quite well. Mechanical valves are still very popular choices. Surgeries are so much faster and more deftly performed.

And BTW, surgery is really not elective. Timing is elective to some degree, but the surgery is essential. You will die eventually without it. Your valve will choke from the stenosis. But not until the numbers are there. Could you share your numbers with us, from your latest echo?

The visit with the surgeon is a great thing. I hope you can get in to do that soon. They are a wealth of information and comfort.

Best wishes. Keep posting!!

Marguerite

 

[Prefo]

Thank you everyone or your comments and feedback ? just what I wanted, or should I say needed. I am going to get this looked at and surgery scheduled as soon as I possibly can. Now the anxiety and panic is setting in about the surgery itself and questioning whether I should have inquired about doing this sooner. Thanks everyone.

 

[netmiff]

not a lot to add to the above, lots of good advice there, but I just wanted to say glad you found us before surgery (I did not, and was a complete basket case). My situation was much the same as yours, murmur diagnosed in 1985, started to see a cardiologist about 7 years ago after a bout with what may have been bronchitis. Ever-decreasing aortic opening, no symptoms, but had valve replaced last September with a mechanical, was discharged from hospital in 6 days (would have been sooner, but I ended up lanquishing in ICU for 2 days 'cos there were no beds in the step-down unit), no painkillers at home except Tylenol. Life is good now !!!!! Oh, and those symptoms that I didn't have, all gone now - no SOB, hot flashes, tiredness, dizzyness that I had put down to age/overdoing it and female hormone issues !!!



Jeanette