Surgery Before Symptoms

[danlo5o]

Good Morning. New member here. Great site!

I'm 49 and have a bicuspid aortic valve. Despite being asymptomatic, my cardiologist has recommended that I preceed with replacement surgery based on the progressive narrowing of the valve and the increased pressure diffferential especially during my stress echo.

Are there oothers out there that have had replacement surgery even though they've had little or no symptoms(shortness of breath, dizziness, etc.)?

 

[Freddie]

I had no symptoms - none - zippo. Until that faithful evening when I went to put my head on my pillow. I couldn't breath. I sounded like a dog in heat. Stayed in the hospital for 5 days, got discharged and 5 days later had OHS.

 

[daveguy14]

There's no right answer here. What to do with asymptomatic patients (especially those with isolated regurgitation) is very controversial in the field. You are also likely to get different answers depending on whether you speak to a surgeon or cardiologist: in my experience, which others may not share, my cardiologist is hesitant while the surgeon is more willing to go (this may confirm stereotypes about surgeons!). Different cardiologists may also differ.

I am proceeding soon with reoperative AVR despite being asymptomatic due to serial echos that indicate steady deterioration of the homograft and left ventricular dialation, despite not quite meeting textbook criteria for surgery. Here's where a lot boils down to your values. I am more risk-averse and know that this thing is rapidly declining. I can't stand to wait any longer. My cardiologist says I can proceed or not proceed and both would be reasonable decisions. It's really a gut-wrenching decision. I note that you have valve narrowing and to my knowledge I think there is more willingness to operate on asymptomatic stenosis than insufficiency.

The long and short of it is that plenty of people go into surgery despite being asymptomatic. It is not uncommon. Textbook criteria says surgery is recommended even for some people even without symptoms. You could always get a second opinion if that would make you feel better. Nevertheless I would pay heed to your cardiologist and at least look into surgery; do not ignore it just because you may feel okay.

 

[ALCapshaw2]

Some perspectives and some questions.

In my NON-professional opinion, Symptoms are a sign of Damage being done to the Heart Muscles and Walls.
At some point this damage can become Irreversible, in spite of surgery. Many surgeons prefer to operate BEFORE symptoms to avoid permanent damage and improve post-operative recovery. A common 'trigger' for recommending surgery is when the Aortic Valve Area is 0.8 sq cm or less. Do you know your Effective Valve Areas and Pressure Gradients ?

We have a saying on VR.org that goes:
"The Worse it gets, the Faster it gets Worse"
This is especially true for Aortic Stenosis.

Because of the above, it is wise to select a Surgeon BEFORE you become symptomatic so that you will know where you will go when the time comes. As a BAV patient, you need to know that BAV is often associated with Connective Tissue Disorders and/or Aortic Aneurisms. The Gold Standard for examining the Aorta for aneurisms is a Chest CT or MRI. It is also in your best interest to find a surgeon who has considerable experience treating BAV patients and who Knows how to recognize signs of Connective Tissue Disorders and how to treat them. Surgeons at the Major Heart Centers typically have more experience treating patients with complex issues.

FYI, Brigham and Women's Hospital and Mass. General Hosp, both in Boston are two of the Top Rated Heart Hospitals in the nation.

You may want to browse through the BAV and Connective Tissue Disorder Forum for more information on this issue.

'AL Capshaw'

 

[Woodbutcher]

Hi, I was completely asymptomatic when I was diagnosed which made the whole idea of open heart surgery really very strange ! I was very active, working ten hours a day in construction, surfing, enduro and motoX riding, fit and healthy... But my Aortic valve was 0.5cm2 which was considered critical and before I knew it I was in hospital being cut open ! My whole body was getting it's blood supply through no more than a drinking straw size valve opening but I felt like I could happilly climb Everest ! All very strange, I almost thought they must be wrong. I'd only gone to the Doctor for a check up because I'd turned 40 and realised I'd not visited one for about 20 yrs ! When I had my operation I was told I probably had between 3 and 6 months to live.
After my operation I felt terrible and it was hard to believe they'd mended me when I felt totally fine in the first place !

 

[Nancy]

There have been quite a few people here who have been told they needed surgery and felt they had no symptoms. Test results showed significant problems, enough that surgery was indicated. The heart tries to compensate for problems within it by becoming more muscular and enlarging. This is not a good thing. When this happens at first, there are no symptoms, but the heart is still compromised. If it gets to a certain point and is showing up as a problem in test results, then surgery is indicated, and for the most part, the heart will remodel and go back to where it should be size-wise. Everyone is different, but the heart can get so enlarged that it will never be able to remodel again.

We have had several asymptomatic people come back after surgery and report that, yes, indeed, they did have symptoms, but didn't recognize them because they developed gradually. Now that they had the problems fixed, they could see just how it felt to be more normal.

 

[karen14]

Wow, asymptomatic, that would be cool. And your information AL and Dave were very helpful to me as well! Thank you. I just find this interesting, as my cardiologist wanted to wait until I became symptomatic to have the surgery. But this could also be due to the fact that I had a young child when I was first diagnosed, not sure on that. Very interesting stuff!

 

[Superbob]

My cardio, who monitored the enlargement of my heart, was more anxious to go ahead and have the surgery than was my great surgeon, who gave me a few months wait and see. When the cath showed increasing enlargement, we proceeded with the surgery. Aneurysm size on day of surgery: 5.5. I could have been a goner if we had waited much longer. I did not have major symptoms -- other than, in retrospect, was finding it a little harder to climb steep basement stairs. I had put that down to aging, but evidently it was a sign of weakening heart.

The thing is, if you wait until symptoms are pronounced, it may be too late -- permanent, irreversible damage may be done. If an aneurysm exists, it can even burst, which is really bad news, often terminal. The need for surgery was easier for me to believe because an internist, upon hearing my murmur, had told me 40 years earlier that eventually I would need surgical correction.

Good luck to you. If you have trouble accepting the cardio/surgeons' diagnoses, there is nothing at all wrong with getting a second opinion.

 

[danlo5o]

Thanks for the helpful response. My surgeon is at Brigham and Women's.

Dan

 

[danlo5o]

Thanks to all the respondents. I am resigned to and accepting of the upcoming surgery. Just wanted to see how common it was to be asymptomatic prior to surgery. I have confidence in my cardiologist and surgeon and will be having the surgery at a great hospital most likely this summer. Still have to make the valve decision!

Best to everyone.

Dan

 

[Ross]

I'm one that was put off too long and now have lasting heart damage. You don't want to go there!

 

[Lily]

There's no right answer here. What to do with asymptomatic patients (especially those with isolated regurgitation) is very controversial in the field. You are also likely to get different answers depending on whether you speak to a surgeon or cardiologist: in my experience, which others may not share, my cardiologist is hesitant while the surgeon is more willing to go (this may confirm stereotypes about surgeons!). Different cardiologists may also differ.

I am proceeding soon with reoperative AVR despite being asymptomatic due to serial echos that indicate steady deterioration of the homograft and left ventricular dialation, despite not quite meeting textbook criteria for surgery. Here's where a lot boils down to your values. I am more risk-averse and know that this thing is rapidly declining. I can't stand to wait any longer. My cardiologist says I can proceed or not proceed and both would be reasonable decisions. It's really a gut-wrenching decision. I note that you have valve narrowing and to my knowledge I think there is more willingness to operate on asymptomatic stenosis than insufficiency.

The long and short of it is that plenty of people go into surgery despite being asymptomatic. It is not uncommon. Textbook criteria says surgery is recommended even for some people even without symptoms. You could always get a second opinion if that would make you feel better. Nevertheless I would pay heed to your cardiologist and at least look into surgery; do not ignore it just because you may feel okay.

[I've slightly edited what I wrote earlier to try to express myself more clearly.]

Wanted to welcome both of you to the site, Dan and Dave, and echo what Dave wrote in his first paragraph. This has been my impression, what I have seen and read, as to why experienced surgeons seem to tend to operate when necessary whereas cardios seem to tend to continue medicating; excellent and experienced surgeons, I think, tend to want to correct the problem before subsequent complications and further heart issues develop.

Look for an excellent surgeon and don't be afraid to seek second opinions. Best wishes .

 

[JeffM]

Hi Danlo...and welcome. I went 22 years without symptoms but monitored my heart's changes over the years. I got to the point where it would have been standard procedure to have surgery for my leaky, but not stenotic, BAV. My cardio wanted to wait until I had symptoms. The finally started to develop progressively longer bouts of Afib in response to extremely high intensity physical exertion. My cardio stil said "wait" but then I had a couple bouts of Afib while I was taking it easy and had to be cardioverted at the hospital. Went to see the surgeon, who said I should have had the surgery a couple years earlier. Fast forward to 18 mths post-op and I'm doing great. My left ventricle has remodelled to normal (it was quite large), but my left atrium is still slightly enlarged. It's amazing how the heart and body can compensate for years to get oxygenated blood throughout. But it's critical to monitor those chancges via regular echos. In hindsight, I probably would have opted for earlier surgery. As it was, I was riding my bike up until 2 days before the operation and walked into the hospital feeling perfectly fine. Good luck with your choice on the surgery and on the valve selection.

 

[MarkU]

My story is somewhat similar. I went 42 years from the time I was diagnosed (at age 5) until my surgery. During that time I had regular annual checkups, including a couple of catherizations. I was continually advised to wait to have surgery until I developed symptoms, or until those symptoms adversely affected my lifestyle.

Other factors that influenced me were my doctors telling me that "some patients never develop symptoms and never need surgery" and that waiting as long as possible would allow surgical technology to advance further.

My symptoms came on fairly quickly at age 47. During my surgery they found my valve was in much worse shape than they they thought and my left ventricle was significantly enlarged. Both my surgeon and cardiologist said that they were surprised that my symptoms had not been much worse. Like JeffM, I had continued to exercised very strenuously until just a few weeks prior to my surgery.

I almost waited too long by basing my decision strictly on my symptoms. My surgeon was very concerned that I had done permanent damage to my heart muscle. It's likely that because I was in good shape it masked the severity of my condition. Kind of a negative effect of exercise.
Fortunately my enlargement reversed itself within about 18 months post-op. I feel lucky and like I dodged a bullet in that regard.

I think the bottom line is that there is no right or wrong answer. Everyone is different and you need to base decisions on as much information as possible, particularly from doctors that you trust and by listening to your body.

Hanging out here helps too...kind of like staying at a Holiday Inn Express.

Mark

 

[Broken Hearted]

Surgery before Symptoms

Surgery before Symptoms

Hi Dan -

Like you I have been advised to have surgery, but am asymptomatic. Keep wondering if they picked up the wrong file... Again like you, am resigned to doing it this summer and also at Brigham. Maybe I'll see you there! It's reassuring to know I'm not the only one...

 

[malibu82]

i'm kind of dealing with the same thing here. i had no idea i had any heart issues until 5 months ago after i gave birth to my second baby. i had a horrible headache that sent me to the ER that was related to a failed epidural during labor but in the process of finding that out, they found out about my 4.7/4.8 centimeter ascending arch aneurysm and that my bi cuspid aortic valve has stenosis.

after getting over the shock of the word aneurysm, i realized that i have felt no symptoms...... and they were recommending surgery at my earliest convenience. i kept thinking, oh my god, how can i sign myself up for open heart surgery when i feel fine? but after reading and researching and asking questions i have realized it is better to do it now rather then when it is an emergency. plus since i have the aneurysm, i risk rupture which is almost certain death.

i am scheduled for surgery may 18th. i am getting extremely nervous, and now yes i feel like i can't breathe! but i think that is do to anxiety!

i am a 28 year old female.

also i have decided at this point to go with a bovine tissue valve. i know i am young and face a replacement in the future. but the more i read about mechanical valves (not just the coumadin or warfarin that some are on) i decided that a tissue valve is the choice for me.


i know it is very hard to sign yourself up for surgery when you feel fine. i wish you the best on your decision, it is a personal one.

 

[ALCapshaw2]

i'm kind of dealing with the same thing here. i had no idea i had any heart issues until 5 months ago after i gave birth to my second baby. i had a horrible headache that sent me to the ER that was related to a failed epidural during labor but in the process of finding that out, they found out about my 4.7/4.8 centimeter ascending arch aneurysm and that my bi cuspid aortic valve has stenosis.

after getting over the shock of the word aneurysm, i realized that i have felt no symptoms...... and they were recommending surgery at my earliest convenience. i kept thinking, oh my god, how can i sign myself up for open heart surgery when i feel fine? but after reading and researching and asking questions i have realized it is better to do it now rather then when it is an emergency. plus since i have the aneurysm, i risk rupture which is almost certain death.

i am scheduled for surgery may 18th. i am getting extremely nervous, and now yes i feel like i can't breathe! but i think that is do to anxiety!

i am a 28 year old female.

also i have decided at this point to go with a bovine tissue valve. i know i am young and face a replacement in the future. but the more i read about mechanical valves (not just the coumadin or warfarin that some are on) i decided that a tissue valve is the choice for me.

i know it is very hard to sign yourself up for surgery when you feel fine. i wish you the best on your decision, it is a personal one.

Interesting... Most people who don't want a mechanical valve base their opinion on a Fear of Coumadin / Warfarin.

SO, I can't help but wonder what it is about mechanical valves themselves that concern you.

FYI, we have had a couple of female members in their 20's who opted for Bovine Pericardial Tissue Valves in order to have children. They got 10 good years from those (Bovine) Valves before they needed replacement. Some Porcine Valve recipients only got even fewer years of service before they needed to be replaced.

 

[Pat in NH]

Thanks to all the respondents. I am resigned to and accepting of the upcoming surgery. Just wanted to see how common it was to be asymptomatic prior to surgery. I have confidence in my cardiologist and surgeon and will be having the surgery at a great hospital most likely this summer. Still have to make the valve decision!

Best to everyone.



Dan

We have much in common. I am also asymptomatic, having my surgery at BWH Boston and trying to decide on a valve. May I ask who your surgeon is and how you made the selection?

Thanks, Pat

 

[danlo5o]

Pat: Dr. Shekar will be my surgeon. I had a good meeting with him earlier thois week. He was recommended by both my cardiologist and another cardiologist who I know well.

I'm leaning toward a mechanical valve even though Dr. Shekar favored the bio valve. The two cardiologist both recommend the mechanical valve. All three said either chiooice is fine.

Dan

 

[Broken Hearted]

Hi Dan and Pat -

Seems like we'll all be at the Brigham... We can form a club! I still can't quite bring myself to commit to a date; I'd feel differently if I was experiencing symptoms. After considering all the options, I have definitely decided on tissue though.
Some days I think - just go ahead and get it over and done with - but then I remember this is major surgery with its associated risks...
Jan