Introduction and my story

[Guest]

Hello all,
I would like to start by thanking you all for your posts, stories and opinions as I have been "creeping" on this site for a couple of months already.

Back in May of this year my wife urged me to go get a physical after me mentioning that I have been quite lethargic for some time now and some pain in my back(heart area). So after the routine physical and some tests, my doctors office called me in for the results. My doctor told me that the EKG showed an enlarged LV and subsequently referred me to a Cardiologist. After an echo, EKG and TEE the Cardiologist informed me that I have moderate to severe regurgitation of the Aortic Valve. This is because one of the cusps is smaller than the other two and he believes I was born this way. I was seen shortly after by the Chief of Cardiac Surgery at Foothills Hospital here in Calgary who has referred me to one of his colleagues who is a specialist in repairs as he believes I would be a great candidate for a repair. The back pain was unrelated. My appointment with the specialist is in a week(September 30th).

All of this came as quite the surprise to me as I am only 41 years old and have been very healthy my whole life, used to play sports at a competitive level and am still quite active. I am not worried about surgery, I am actually embracing it as an opportunity to make a long overdue career change.

So my first question(one of many I'm sure) is what is the real story with repairs? I have heard so many conflicting opinions, some say it should last a lifetime and others seem to believe it is only a band-aid fix(short term). I know that the circumstances are different for everyone but I would expect this to be a relatively straightforward procedure.

I think I would ideally like a repair but will have a backup plan to go with a mechanical valve if something goes sideways.

Any first hand knowledge would be greatly appreciated.

 

[tom in MO]

I have no first hand knowledge, my AV was replaced due to it being bicuspid. From what I've read, repairs can be great and last, other times not so much and there is a replacement. I believe the success and sustainability of the repaired valve depends upon your exact physiological problem and the "fix". Some have gone into surgery with an uncertain outcome; repair if possible, new valve if not. I'd suggest that when you see the specialist, go in with a list of quesitons. Ask for some journal articles or references if your problem is not unique.

I am sure someone will be here that has some first hand knowledge.

 

[Garagegym]

Fellow Southern Albertan. I am a late 40 something year old male that was very fit and strong and used to compete in powerlifting in his late 20's and 30's. I have been working out hard since I childhood so having a heart valve problem hit me like a ton of bricks.

Before my operation I had a severe regurgitant aortic valve with very significant enlargement of both left ventricle and atrium. I have conduction problems as my ventricle is so damaged that the wiring to each ventricle has been damaged. My aorta had dilated so much ( over 5.0 cm ) that I was at significant risk of dissection and rupture. I had Shortness of Breath upon mild exertion, dizziness even when driving, severe heart palpitations, dry eyes, severe low back pain from standing all day, no exercise tolerance at all etc etc etc. I found it hard to walk more than a couple of blocks.

Please forgive this post as it is not meant to scare you--- but I have gone through hell and back trying to get treated in a timely manner here in Alberta South zone.

It is a very long story --that I won't bore everybody with ---- as I don't want to scare other Canadians but suffice it to say I had to come up with many 10"s of thousands of dollars and fly to the USA to get the surgery I desperately needed as I was afraid I would die waiting here or have my heart so severely damaged that it would never get better. Plus of course there was the risk of aortic rupture and they could not get my blood pressure under control even with max dose of all these blood pressure drugs at same time ACE-I, diuretic, ARB, calcium channel blocker.

Once I made that decision it only took one week of making arrangements and I had my angiogram and surgery done immediately. The only delay was me trying to renew my passport.

They replaced my aorta and aortic root with a mechanical St Jude Valve. Depending on which cardiologist you believe... basically I should have had surgery over 3 years ago-- but keep misdiagnosing my aortic valve as tricuspid instead of bicuspid and told me surgery wasn't needed yet. My symptoms were so bad due to severe regurgitation and aortic aneurysm that I could not work anymore and was off on disability on a waiting list for 3 months and was told it could be another 3 months before they do the surgery-- no way to tell.

If you are basically symptom free then you may not have to worry as you can afford to wait in the system for our esteemed health care system to get to you.... if however you have symptoms like me and declining in health very quickly-- and young and healthy otherwise-- if you can afford it -- look into options in the US.

My cardiologist said he would have done the same thing if it was him-- it was dangerous to wait.

​I am 6 weeks post op and will probably need psychological counselling in my dealing with the health care system.

 

[NewbieSlo]

@Garagegym: your last sentence made me laugh, I'm having the same issues with our wonderful health system here in Slovenia (Europe), so I know what you mean!

 

[NewbieSlo]

And of course, best of luck to the guest, who started the topic.

 

[AZ Don]

Hi,
I have had a (bicuspid) valve sparing aortic aneurysm repair, and now have mild regurgitation, so the state of valve repair is something I pay attention to.

I would expect this to be a relatively straightforward procedure.

Frankly I don't think that is the case. Perhaps for a few very experienced surgeon's, but valve repair is a newer procedure as compared to valve replacement, which for many surgeon's I think is a pretty straight forward procedure.

From the "2014 AHA/ACC Guideline for the Management of Patients With Valvular Heart Disease", it states:
Despite advances in primary aortic valve repair, especially in young patients with bicuspid aortic valves, the experience at a few specialized centers has not yet been replicated at the general community level, and durability of aortic valve repair remains a major concern. Performance of aortic valve repair should be concentrated in those centers with proven expertise in the procedure.


Full document here: http://content.onlinejacc.org/articl...icleid=1838843

I don't know anything about the hospital or Dr. that you are considering, but for a repair you definitely want a Dr. and hospital that are well above average. Perhaps your Dr. can share information about his repair success rate and how many patients have had to have follow-up surgeries.

The net is that if you get the valve repaired there is a fair chance that you may someday have to have another surgery, but in the meantime you would not likely need anti-coagulants. If you get a mechanical valve there is a low risk of another surgery but you will be on anti-coagulants for life - as many on this site are.

 

[AZ Don]

dup post. On posting I received a msg stating "invalid data" and it appeared the msg had failed to post. Apparently not.

 

[river-wear]

Adding to what Don wrote, I doubt even the experience surgeons who do valve repair will promise it will last a lifetime. Mine certainly wouldn't. Mechanical was my backup choice, but I wanted to try for the repair first - because I had a very experience surgeon and he was confident he could do a good job. Or as he said, "I nailed it!" Fingers crossed.

Good luck with whatever you decide!