Asymptomatic Severe Stenosis: When to Have Surgery?

[Heather Anne]

Hi, all -- I'm new to posting, but I've been "lurking" for about a year. I've seen my question addressed a little bit in other threads, but I thought I'd just throw it out there more directly.

I was diagnosed with BAV at the age of 5. The stenosis has progressed over the years until now, at age 46, it is severe (.79 cm, with a gradient of 45). However, I have no symptoms. I exercise frequently -- swimming over a mile three times a week, and lifting weights 2-3 times a week -- with no shortness of breath, chest pain, etc.

My doctor has me in "watch and wait" mode, coming in every six months for an echo, and every time the stenosis is a teeny tiny bit worse, but no dramatic change. There is no sign of an aortic aneurysm, and no evidence of heart damage. He says he'll send me off to the surgeon as soon as I develop symptoms. But he doesn't want to operate before I have symptoms because (1) the risk of surgery outweighs the risk of sudden death in an asymptomatic person and (2) because of my relative youth, every year I can wait means one less year on coumadin or, if I went with tissue, a longer-lived valve. I've done some research, and it appears to be a tough call whether to do an AVR on an asymptomatic person with severe AS and no other heart issues unless the valve area is .6 or less.

I don't want to have surgery before I need it, but Sudden Death sounds like no fun either, and my heart is pretty darned stenotic. So I thought I'd ask this group of experts for some anecdotal evidence. Were any of you confronted with this dilemma (severe AS but no symptoms)? Did you wait for symptoms to develop, or have the surgery done before symptoms manifested? On what factors did you rely?

I know that's a lot of info, and I thank you for even taking the time to read all the way through this! And thank you all for the support you provide. This is a great community!

 

[ann1970]

Hi I am new on here too! I have replied to a few posts and am not sure how to post a new thread. I did not have the same problems as you , but there are allot of people on here that should be able to help you. I had Mitral valve surgery on May 10, 2011 Bovine tissue valve for severe stenosis caused by rheumatic fever as a child that my parents or I did not even know i had. I never had any symptoms my whole life until i turned 40 and got severe pnemonia 3 times in 4 months and then a bad case of shingles and the shortness of breath just kept getting worse. The Dr. kept saying I was too healthy and young to have a heart problem but I felt like there was something really wrong and when I was finnally diagnosed my surgery had to be done right away. So I say listen to your body. Sorry I couldn't be more help and I hope you get some answers. I agree this is a great community and I wish I found this site before my surgery but am happy to have found it now! Take care!

 

[Paleowoman]

Hi Heather - if you're not sure of your cardiologist's recommendations, could you get a second opinion to put your mind at rest ?

I'm not in your position as I have moderate stenosis (pressure gradient 52 with restricted movement of the valve but don't know the valve area size, they don't appear to tell you in the UK !) and no symptoms, heart size normal etc. When my pressure gradient was accelerating my cardiologist was talking about me having the valve replaced in a year or two, but it's stabilised for the moment and he's saying no surgery for the moment. He thinks it's best to wait as long as possible. I too do lots of exercise, heavy weights twice a week and lots of walking.

Hope you can put your mind at rest about this soon.

 

[Bill B]

I was asymptomatic as well despite a valve that measured 0.7cm^2. I think my gradient was 45 average and 70 peak. Those are BAD numbers. My left ventricle was moderately enlarged and thickened. How's yours? My ejection fraction was still good at 55-60%. I had a "watch and wait" cardiologist like you, although she admitted that there was a trend toward not waiting for symptioms as the damage done by that point may not be reversible. Also, my valve was shrinking fast having gone from 1.1 to 0.9 to 0.7 cm^2 in 9 months. I decided to go see a surgeon on my own just for information on various procedures. He repeated the echo and did his own exam and said my valve was a ragged calcified rock. He could not belive I was asymptomatic and said my heart was working overtime fighting against the resistance to flow, and he was worried my first symptom might be, um, rather serious. The fact that I was a marathon runner earlier in life may have contributed to my lack of symptoms from my athletic heart. He recommended surgery within 5 months. I had it done in 3.

I think the key is whether you believe your stenosis is really stable. Mine was not. Although I thought I went into surgery a bit early, expecting it might provide a more complete reversal and remodeling of my heart, I still have some residual damage.

Timing of surgery has been discussed here many times, and I think one of the more compelling expressions has been, "I'd rather be a little too early than a little too late." The risk of surgery, particularly while you are healthy, is extremely low.

Also, avoiding Coumadin for a year or two is no real gain at all. Those early years are not the ones that cause problems. Most problems with Coumadin are from poor control and late in life.

 

[RunMartin]

Sounds familiar. I was exercising (mountain running and swimming) up until a few months before my AVR. I thought I was asymptomatic until I had the valve was replaced. I had known about the bicuspid valve for many years so I did not really notice the change over the years. My arotic valve was about 0.8 cm when the decision was made for surgery. Once the valve was replaced I noticed how much clearer my head was and the breathing was much easier (I did not notice the slight headaches and breathing before the AVR). I take Warfarin (Coumadin) and it is not really an issue. My AVR was 2 years ago and I did 28 races last year and did a 25 mile race three days ago and felt OK (just a little slower now).



Martin

 

[brommers76]

Hi Heather,

A little different to you but I have a BAV and I am booked in for an op to replace the valve on the 10th April. I believe I am symptomless and can still run at 6 min mile pace and did a 30 mile bike ride the other day at just under 20mph. However my LV is 73mm and EF is 50%.

With my LV dimensions seemingly on an upward trajectory I don't want to wait for symptoms and the cardiologist and surgeon both believe waiting for symptoms is the wrong course of action. I am 35 btw.

RunMartin - You say you are slower now, is there any reason other than the mechanical valve do you think?

 

[RunMartin]

RunMartin - You say you are slower now, is there any reason other than the mechanical valve do you think?

It does not always follow. Everyone is different (as I have found out). Some are quicker some are a bit slower. The main thing is getting back to running, swimming etc. The alternative to surgery is not that appealing! I have started to enjoy my running at my pace. My swimming is very similar to before.

Martin

 

[brommers76]

Thanks Martin. As with anything it is hard to find any facts on post replacement performance other than the walking talking variety on these type of forums!

 

[Lynlw]

Hi I am new on here too! I have replied to a few posts and am not sure how to post a new thread. I did not have the same problems as you , but there are allot of people on here that should be able to help you. I had Mitral valve surgery on May 10, 2011 Bovine tissue valve for severe stenosis caused by rheumatic fever as a child that my parents or I did not even know i had. I never had any symptoms my whole life until i turned 40 and got severe pnemonia 3 times in 4 months and then a bad case of shingles and the shortness of breath just kept getting worse. The Dr. kept saying I was too healthy and young to have a heart problem but I felt like there was something really wrong and when I was finnally diagnosed my surgery had to be done right away. So I say listen to your body. Sorry I couldn't be more help and I hope you get some answers. I agree this is a great community and I wish I found this site before my surgery but am happy to have found it now! Take care!

Hi to start a thread, open whatever "forum" you want to put the thread in, ect pre op postop , anti-coagulation and at the top of the page there is a little button that says something like New thread, just click that and a new scree pops up just write somehing in the subjec and pretty much the rest is just like replying to any thread.

 

[TheGymGuy]

Hey Heather. I was in the same boat you are in. I was and still am completely asymptomatic. To add insult to injury I am an athlete and a competitive powerlifter (not bodybuilder). My numbers are around 1cm^2 AVA and pretty high gradients. I do have a mild ascending aortic aneurysm that they just found out at 46mm or so. Basically, being asymptomatic SUCKS (erhm, sort of)!!!!! I feel nothing wrong and yet, my surgery date is in 2 weeks from today. I am in my early 30s and in great physical shape. Still, the risk of sudden death or more aneurysms or dissections are there at 4-6% year, and surgery risk is less than 1%. Also, being on Coumadin after the surgery puts you at around 1% / year risk for some event (bleeding or strokes - yes, it sounds scary), but this forum and self monitoring can reduce that even further and almost have that risk be negligible.

Hope this helps.

 

[Heather Anne]

Thank you all so much for your responses. I agree with GymGuy that being asymptomatic with severe AS is kind of sucky. Not that I want to feel chest pain or faint, but I imagine the decision is easier if you're feeling like crap. It's hard to sign up for such major surgery when you're feeling good.

To answer Bill B's question about left ventrical enlargement, mine so far is only mild. My ejection fractions are good also at 60-65%, but my gradients are identical to yours (mean 45, peak 70).

Bill, if you're still in this thread: I notice you had your surgery done at Stanford by Dr. Craig Miller. I'm in the Bay Area also, and would have my AVR done at the same place. Was Dr. Miller the surgeon you saw to inquire about the procedures, who advised you to have the surgery within five months? What did you think of him? Perhaps my next step will be to make an appointment with him and get his opinion on the matter.

 

[ann1970]

Hi to start a thread, open whatever "forum" you want to put the thread in, ect pre op postop , anti-coagulation and at the top of the page there is a little button that says something like New thread, just click that and a new scree pops up just write somehing in the subjec and pretty much the rest is just like replying to any thread.

Thank you Lyn for the info I really appreciate it! Ann

 

[Bill B]

Thank you all so much for your responses. I agree with GymGuy that being asymptomatic with severe AS is kind of sucky. Not that I want to feel chest pain or faint, but I imagine the decision is easier if you're feeling like crap. It's hard to sign up for such major surgery when you're feeling good.

To answer Bill B's question about left ventrical enlargement, mine so far is only mild. My ejection fractions are good also at 60-65%, but my gradients are identical to yours (mean 45, peak 70).

Bill, if you're still in this thread: I notice you had your surgery done at Stanford by Dr. Craig Miller. I'm in the Bay Area also, and would have my AVR done at the same place. Was Dr. Miller the surgeon you saw to inquire about the procedures, who advised you to have the surgery within five months? What did you think of him? Perhaps my next step will be to make an appointment with him and get his opinion on the matter.

Exactly. I identified Miller as the guy to see for information about a lot of different potential procedures. I called his office on my own - no physician referral (ah, the good old days when we had PPO insurance and I could go anywhere I wanted). I may have sent an email with a few details. Not sure. Anyway, they said to have my records and previous echos forwarded to him. Then a week or so after I had the materials sent by my cardiologist's office staff, Miller's office called and scheduled an appointment to come in. That day they did another echo, even though I had had one 3 months earlier, and I saw Dr. Miller an hour later. He spent almost 2 hours with me and my wife reviewing my situation, going over the echo directly in detail and discussing my options and his recommendation. Miller is an impressive guy. That's an understatement. I knew I was in the presence of a very special man. I have nothing but praise for the care I received at Stanford. The ICU staff were great and the stepdown ward nurses were excellent. So were all the physical therapists and other people who came to see me. I spent 10 years working in a teaching hospital, but that was almost 30 years ago. Things have changed. After the surgery, I saw the surgery staff once or twice and Miller came to visit me late one night after about 4 days. I felt a bit neglected. But that's the way it is in modern teaching hospitals now. I was doing so well, there was no need for the surgeons to see me each day. They rely 100% on the nurses to take care of you and would only come in if something went seriously wrong. Just thought I'd pass that along.

There are other options in the Bay Area. Many people like Vincent Guardini at Sequoia Hospital. He is probably the most prolific valve surgeon in the area. My local cardiologist thought the surgeons at the local hospital were good and I should go there. She knew Dr. Miller but said they only refer "complicated" cases to him. I don't know if she fully appreciated what actually was going on. My transverse aorta was a mess of myxomatous tissue and that was not fully appreciated until I was on the table, cut open for direct examination. This is always a possibility in BAV; in fact, rather common. Miller is an expert on aortopathy in BAV: http://billsworkshop.com/Some_AVR_lit/Miller_Aortopathy_of_BAV.pdf The patching of the aortic arch probably qualifies as "complicated". You are placed in deep hypothermic, complete circulatory arrest with retrograde perfusion of the brain so they can operate on the arch safely. I think I'm rather glad I chose Dr. Miller and Stanford.

 

[Heather Anne]

Thank you, Bill. This is very helpful. My cardiologist is Dr. Schiller at UCSF, and he speaks very highly of the staff at Stanford and would refer me there. I trust his recommendation, but it's really comforting to hear such praise for Dr. Miller from a patient. I'm especially impressed with the time he took to speak with you and review your situation. I will make an appointment to see him (I do have PPO, thank goodness!).

 

[normofthenorth]

I've often advanced the case for waiting for symptoms, mostly because it makes recovery easier psychologically and spiritually. Physically, I think most of the advantages lean toward getting AVR when your numbers are scary, even if you feel great. Me, I postponed several times without symptoms, but with an unhappy Cardiologist who thought I should go sooner. He introduced me to "my" surgeon, who didn't push me nearly as hard as my Cardio.

Within a few days of my first symptoms, I phoned them both to get the wheels turning. In my case, with both AV stenosis and AV regurg (aka "insufficiency"), the minor MV regurg I had ~1 yr pre-op had advanced far enough in that last year that (a) I was told it would be "repaired or replaced" in my pre-op workup (and that's what the consent form I signed said, too), and (b) it actually turned into a MV repair, with a Dacron ring around the valve. Not a huge deal, although it did necessitate Warfarin/ACT for 3 months post-op (despite my porcine AV and only very limited AF).

From what vague info I've heard, I think my LV hypertrophy has recovered at least for the most part, and my functional CV output is great -- something like 140% of age-and-gender norms several months ago, before I was back to competitive volleyball and nearly as fit as I think I am now. My only disappointing number on the monitoring is the effective area of my new AV, and I don't think that has anything to do with the timing of the AVR.

As others have said, it used to be universal to wait for symptoms, but the trend is to be more "pro-active", maybe primarily because the operation has become safer. (At least I HOPE it's not to keep the ORs full!)

Whatever you decide, I think you should meet with one or two surgeons soon.

Good luck with all of it!

 

[Heather Anne]

Thanks, Norm! Your situation does sound similar to mine. Interesting that it was your cardiologist urging you to proceed, and your surgeon agreeing that you could wait. It just goes to show what a tricky call it is, and why multiple opinions are a good idea.

May I ask you what your symptoms were when they finally did manifest themselves? Were they pretty obvious? I'd hate to have symptoms and not notice them. But I also don't want to get caught up in over-analyzing every little twinge -- that way lies madness!

By the way, I love your nickname. It reminds me of the so-horrible-they-were-funny eskimo films my elementary school teacher used to show us in the name of "science" called "Nanook of the North." My theory was that she put them on whenever she needed a nap.

 

[normofthenorth]

Heather Anne, you can see my whole story (in one long thread) by searching for "Norm's story" at the top right. I had two short episodes of SOB, that's it. The first was walking home ~6 blocks from a ride "home" after a hearing, with my laptop and documents etc. in a big backpack. Had to stop half-way home to catch my breath, leaning against a lamp post. Same thing a few days later, but after running up 2-3 long flights of stairs out of my local subway station, then continuing to walk home. I think I leaned on the FIRST lamp post after the subway exit.
Pretty minor stuff as heart symptoms go, but I'd noticed NOTHING before that. Mind you, I tore an Achilles tendon (playing competitive 4-on-4 court volleyball on a full-sized 6-on-6 court) about a year before my AVR, so I'd been taking it unusually easy for a lot of that year. But I'd been bicycling a lot around town for the half-year before the AVR, and for the last few months I'd been pumping hard, catching all the yellow lights and climbing (urban) hills, etc. I was way out of shape from 4 weeks on crutches and a couple of months without bicycling, but I don't think any of my huffing and puffing back then was "symptomatic" or unusual for recovering Achilles patients.
It can be a judgment call with minor symptoms, especially as we get older (me much more than you). For me, having to rest and catch my breath during a walk home was clearly over the line.

Doctors are humans, and their judgment is often shaped more by their own experience than by scientific studies. My prominent Cardiologist is approaching retirement, and may well have lost a patient or two who waited too long for AVR or other OHS. Most heart surgeons see more success stories than failures, because many of the people who "blow up" don't make it to an OR. And my surgeon had some great stories about his shocking successes.
His fave story was the asymptomatic woman with a deteriorating AV (probably BAV) who scheduled her AVR for the day after a Marathon she didn't want to miss. She ran in the Marathon and made it to the OR, no problem. When he saw her AV, it was in such miserable shape that he was surprised she could walk, much less run. The one time I saw him post-op on cardiac-ward rounds, he told me that I had joined her in the group with AVs in miserable shape. (But there seems to be a lot of that kind of "sweet talking" post-op from cardiac surgeons.)