Feeling "pushed" into surgery too soon?

[Maverick]

Hi Folks,
New to the forum, although I've been browsing for quite a few months now, ever since Google directed me to this vast treasure trove of knowledge!
So a little bit about me:37 year old, otherwise healthy male (who won the genetic lottery!), diagnosed with BAVD just ~ 4 years ago thanks to a vigilant PCP. I've been on a 6-monthly 2DE schedule with my Cardiologist and in the past 4 years, the AR has progressed from mild-moderate to moderate-severe. My cardiologist keeps insisting that she believes that the amount of insufficiency is being under reported because "the jet is eccentric" and the volume is not easy to calculate. My LVEF is > 55, and although my LV has dilated over the past 4 years a little bit, it is just within the normal-high normal range. I have absolutely NO obvious symptoms as of now, at least from what I can tell. I'm not the most active guy, but have been getting to the gym 3-4 times a week; doing both cardio and weights (light to moderate) without any episodes of dizziness, fainting, etc.
Anyhow, beginning of this year, my cardiologist recommended that I go and consult with a cardiac surgeon to see what he thought of my case. I went in thinking he was going to say "don't worry about this for another 5-10 years man!". Yeah, maybe I was in denial. The consultation did not go well. The surgeon kept telling me that I had to get this done within the next 1-2 months, don't wait another 6 months or year, he said (I told him I had some plans for traveling through the next 10 months and would like to get into surgery right after). I told him at the time I would think about it.
Went and talked again to my cardiologist who told me to relax and wait for the next 2DE, which was scheduled for last month. So after the last 2DE, she tells me that my LV seems to be increasing ever so slightly and I need to go in and schedule surgery. So, here I am, with a consultation scheduled this afternoon. I am going to try and ask the surgeon point blank whether I am taking a big risk by choosing to wait another 3-4 months (I would like to go into surgery in December for a few personal reasons). I have a feeling that he is going to say that I need to get into surgery within the next month.

Sorry for the long winded background, but I wanted to know if there are other folks here that had a similar experience where they felt they were being pushed in to surgery too soon? Did you resist the recommendation of the cardiologist/surgeon but regretted it later by getting the surgery "too late". I mean, I understand that the progression of this disease is not easy to predict and anything is possible, but I just feel that waiting 4 months more is not going to ruin my chances of recovery or a "normal" life given my current health and heart condition. Maybe I'm still in denial??
Would really appreciate some perspective from all of you awesome folks!

By the way, I can't tell you all how much courage, inspiration and moral support this site has given me, on top of the knowledge. I'm eternally grateful for this site and all the folks who share their experience and advice here! A big THANK YOU to you all!!

 

[tom in MO]

I was asymptomatic. Did not really believe I needed it soon, no later than 6 months. After I scheduled the surgery (for the 2 of my 6 months) I had my first fainting spell and that was it. However, when they yanked my valve, the surgeon said it was crap and I really needed it. Many show no symptoms, it what makes it a silent killer for some. There is a website about BAV and the person who it memoralized died during a run. I'd suggest you listen to your doctors.

 

[marc_kowal]

Hi Maverick and welcome!

I was also asymptomatic when my doctors told me at my annual check-up in the late Fall of 2011 it was finally time to have my valve replaced. I was shocked, because I felt no different from when they discovered my bicuspid valve 10 years ago! They told me they wanted to do surgery after the holidays , but I asked if I could hold off on it until after my son's birthday in February. If something went wrong, I didn't want his birthday to always be a somber occasion. I was lucky and they said it shouldn't be a problem. There have been plenty of others who needed to have their surgery right away, or their long-term health could be in jeopardy. I know if my doctors said that it wasn't a good idea to wait, I would have followed their advice.

Good luck,
Marc

 

[knotguilty]

I thought I was asymptomatic but realized after the surgery I did have signs, all but minor. But the cardio told me that it was better to get it done sooner than later because the prognosis later down the road was better. He said why wait to you start having problems like enlarged heart etcetera. He said it was better to preserve my heart from damage from BAVD. I will say now almost two years after surgery I can run a lot longer and faster. I would suggest that you keep in mind this is life saving and life lengthening surgery and you will be as good as new afterwards.

 

[Paleowoman]

Sorry for the long winded background, but I wanted to know if there are other folks here that had a similar experience where they felt they were being pushed in to surgery too soon? Did you resist the recommendation of the cardiologist/surgeon but regretted it later by getting the surgery "too late". I mean, I understand that the progression of this disease is not easy to predict and anything is possible, but I just feel that waiting 4 months more is not going to ruin my chances of recovery or a "normal" life given my current health and heart condition. Maybe I'm still in denial??

Yes I certainly felt I was pushed into surgery too soon. My stenosis was severe and my aortic valve area size 0.9 - but I'm a small woman - and my Ejection Fraction was an amazing 79%, my heart really strong according to the echocardiogram and technician. No symptoms. The surgeon recommended surgery in November and said I could suddenly die without it ! I postponed it till January. I would have preferred to wait until at least the spring becasue there were things I wanted to do. My cardiologist was okay with me waiting till January but not later, so, like I said, I went ahead. I'm not pleased. I was fitter before surgery than after - I'm sure that if I'd had some symptoms I might feel differently but I didn't have symptoms and I do now.

I think it's impossible to know what to do. In the UK where I live they like to do surgery before any symptoms develop as it's obviously safer than when symptoms have started and there is a chance of irreversible heart damage. I can see that point of view but it's difficult to take when you go from feeling so good to feelin c**p nearly seven months later.

We are patients, not doctors……we are not really in a psoition to choose if advised on a course of action to take. You could get a second opinion from another surgeon.

 

[T in YVR]

Maverick,

Your condition etc sounds very similar to me. When I was diagnosed with my BAV, I was moderate to severe AR. My LV had enlarged to 62mm and my regurg was "eccentric" (which just refers to the angle/way the jet of blood regurgitates). I had no symptoms as well and continued to exercise right up until my surgery. Don't wait for symptoms - that's when you run the risk of doing irreparable harm. Its inevitable that you need it, so waiting does you absolutely no good, even if your condition doesn't change overnight. You should not be delaying very much in my opinion....when your LV starts to noticeably enlarge, that is the indication that your heart is having to exert extra effort.

By the way, depending on your health coverage, be careful while traveling outside your country. I live in Canada and once diagnosed, I had a "pre-existing condition" which would make any health coverage null and void for me as it related to my heart, when traveling outside the country.

T

 

[river-wear]

I was told my regurgitation was "moderate to severe" for many years. This January, my cardiologist said I had to have surgery within six months. My LV was around the same size as before (high normal) but my ejection fraction had fallen from 55% to 50% in the prior year. I didn't have any symptoms aside from maybe a little fatigue.

My surgeon said that when he got in there, my level of regurgitation was off the charts. (It's rated from 1-5). He was shocked I wasn't having a lot of symptoms. I was hiking in the hills right up until surgery. Yesterday was the 7-week mark and I'm pretty much back to normal. I still have to build my cardio fitness back up, but I feel good. Maybe best of all, I can sleep on my side again!

 

[pellicle]

Maverick, welcome aboard

I was going to post some advices but I see that almost everything I wanted to say was written here by others.

Ask youself why you feel pushed into surgery. Is it because you are really hesitating to take the step and are hoping to get one more day pre-surgery?

While the temptation to not get into the pool is very understandable another view is that its one more day of anxiety about the problem yet solved rather than starting earlier on the path to recovery and putting it into the past. You will read post after post here from the anxious saying how anxious they were but 6 months later are posting how it was all unfounded.

Six months or a year can go by with what amounts to procrastination and you are not any closer to a resolution but if you schedule the surgery then you start another phase of your situation and are past that pre-surgery anxiety.

As has been mentioned, waiting only degrades your health and makes recovery harder and slower.

Best Wishes

 

[pellicle]

Maverick

We are patients, not doctors……we are not really in a psoition to choose if advised on a course of action to take. You could get a second opinion from another surgeon.

I think this is an excellent suggestion to settle your quandry

 

[dpalz]

Hi Maverick and Welcome. Can your name be anymore fitting?

I doubt you can get many opinions from those who elected on waiting too long for the surgery and resulting in a bad outcome although you obviously don't have the aneurysm along with the BAV many of us have had . My apologies if that is too morbid. The Doc's know best and second opinions are good and fine, but hey, if I wanted to get a good look look at my T-bone steak I could...... (you know), but I'd much rather take my butchers word for it (hopefully you saw Tommy Boy).

Living an active life, I wanted to postpone surgery, however my aneurysm prevented that consideration. I will share that around 6-9 months post surgery I began to really appreciate how much better I felt and today I'm running further and faster than ever before with my legs giving out before I do!! My lesson learned was that sometimes you just don't know how bad you feel until the pain/symptoms are removed. I do feel I went back to work too early so rest well post surgery and don't push it on the other side. Lean on this website, you will make some amazing friends.

I wish you the best.
Dion

 

[clay_from_nj]

I probably had the surgery later than I should have, and my heart was permanently damaged as a result. I have had, and continue to have, a remarkable recovery but will probably never regain normal heart function. If it's going to have to be done anyway, why not sooner rather than later? Get it done while you're younger and less permanent damage has been done, and you'll recover quicker and easier.

 

[joel1947]

I was asymptotic for years with severe 4+ aortic regurg but an EF of 55% and felt great. but the jet started creating a Venturi that was holding my mitral open. I was told I would know when I needed surgery. in May it was scheduled for 8/19 but yesterday I went to my cardiologist for a check and after an echo he put me in the hospital. so I am awaiting surgery prolly mon or tue. my point is that it can change fast. I decided it was time when I could not run 5 miles without walking for a bit.

 

[avr8913]

The risk one takes by waiting is much greater than having to change or even cancel some plans. The body can feel or seem normal, yet is simply hiding the internal damage. I was not aware of my functionally bicuspid valve until I went in for shots to travel out of the country. 5 weeks later I was in hospital with congestive heart failure and having surgery earlier than scheduled. Feeling rushed is something most folks feel. It is better to feel rushed, and live a longer life, than milk every last second out of a body with a definitively, much shorter life expectancy. The longer you wait, the higher your chance

 

[avr8913]

The risk one takes by waiting is much greater than having to change or even cancel some plans. The body can feel or seem normal, yet is simply hiding the internal damage. I was not aware of my functionally bicuspid vIalve until I went in for shots to travel out of the country. 5 weeks later I was in hospital with congestive heart failure and having surgery earlier than scheduled. Feeling rushed is something most folks feel. It is better to feel rushed, and live a longer life, than milk every last second out of a body with a definitively, much shorter life expectancy. he longer you wait, the higher your chance o

 

[cldlhd]

I imagine my experience is pretty common, different people have different opinions even among experts. My cardiologist and my surgeon agree I can wait but my pcp and various nurses suggest gettng it over with. My BAV is barely leaking-the Dr who recently did my cardiac cath says he doesn't see any regurgitation- but my sense of urgency comes from my ascending aneurysm although at 4.7 cm they say I can wait. As for the regurgitation I've seen how it can progress on her from mild to moderate to severe and wonder if I should wait so any leakage that is going to rear it's head will hopefully do so during the waiting period . I would hate to get the operation ( that could have waited a few years ) then a couple years later a leak pop up. Maybe it doesn't work that way , perhaps they can see areas that are likely to cause problems while they're in there.
I would get an opinion from another surgeon. I'm pretty new to all this but I get the feeling a lot of cardiologists see surgery almost as a last resort preferring medications and surgeons probably see surgery as the solution because that's how they're trained to fix things.

 

[river-wear]

The risk one takes by waiting is much greater than having to change or even cancel some plans. The body can feel or seem normal, yet is simply hiding the internal damage. I was not aware of my functionally bicuspid valve until I went in for shots to travel out of the country. 5 weeks later I was in hospital with congestive heart failure and having surgery earlier than scheduled. Feeling rushed is something most folks feel. It is better to feel rushed, and live a longer life, than milk every last second out of a body with a definitively, much shorter life expectancy. The longer you wait, the higher your chance

avr makes an excellent point. I knew about my problem since I was four years old and took five months to research and plan, and yet it still felt kind of rushed. At least it felt rushed when I first found out in January! It's completely normal to hope you can always put it off another 5-10 years, which are always moving away from today. When my cardiologist told me, I asked "can't I come back in six months for you to check again?" He said he wouldn't wait that long. I trust him and called a surgeon to get the ball rolling. Your time frame is shorter, but if you trust your doctor you need to listen. At least get a second opinion. (BTW, five years ago I had a doctor I didn't fully trust tell me I needed surgery then. I got another opinion and changed cardiologists in the process.)

 

[Maverick]

Thank you all for the responses. It is very re-assuring to hear from folks that have already been through this that waiting is not necessarily the best option. An update from my first post: I met with the surgeon last Friday and he also recommended that I don't wait any longer and get the surgery done. So, as it happens, I will be scheduling surgery for either late August or early September and keep my fingers crossed and my mind prepared for a speedy, full recovery. At this point, I have to put my trust/faith in the informed opinion of medical professionals and people who have "been there and gone through that"!
Will be updating with firm date and valve selection, etc. shortly....

 

[Maverick]

My cardiologist was okay with me waiting till January but not later, so, like I said, I went ahead. I'm not pleased. I was fitter before surgery than after - I'm sure that if I'd had some symptoms I might feel differently but I didn't have symptoms and I do now.

Paleogirl, sorry to hear that you are not pleased at the outcome. Might I ask, what symptoms do you have post surgery? How many years after surgery are you still feeling these symptoms? I can certainly understand your disappointment at not being as fit as you were prior to surgery, this is something that I'm very scared of (apart from all the other morbid risks that they enumerate during the pre-surgical appointment!).

 

[Paleowoman]

Paleogirl, sorry to hear that you are not pleased at the outcome. Might I ask, what symptoms do you have post surgery? How many years after surgery are you still feeling these symptoms? I can certainly understand your disappointment at not being as fit as you were prior to surgery, this is something that I'm very scared of (apart from all the other morbid risks that they enumerate during the pre-surgical appointment!).

Hi Maverick - I'm seven months post surgery now. My symptoms are that I get very tired and have not returned to the level of fitness that I had pre surgery. Pre surgery I was extremely fit, I even did a six mile brisk walk the day before admission and was lifting heavier weights than I lift now (I am a very keen weight lifter). I'm also getting some visual problems - migraine auras without headache and double vision - but those may be related to a side effect of the heart lung machine, I might be seeing a neurologist about them but they don't bother me so much as my not returning to pre surgery fitness. I have done and still do cardiac rehab.

My theory, which comes from so many people saying how great they felt after surgery, is that if you have symptoms prior to surgery of course you will 'better' afterwards, but if you really are symptomless, like me, then the effect of such major surgery may be that it knocks you rather and, because I never felt 'bad' before I notice the negative effect of the surgery rather than the positive effect.

Of course I know that without surgery I would have started to get symptoms and it would have been bad for my heart. And it's done now !

Wishing you well for your surgery ! Everyone is here to give support - in the immediate weeks after surgery when I had some problems I got lots of support and good advice here !

 

[Duffey]

Thank you all for the responses. It is very re-assuring to hear from folks that have already been through this that waiting is not necessarily the best option. An update from my first post: I met with the surgeon last Friday and he also recommended that I don't wait any longer and get the surgery done. So, as it happens, I will be scheduling surgery for either late August or early September and keep my fingers crossed and my mind prepared for a speedy, full recovery. At this point, I have to put my trust/faith in the informed opinion of medical professionals and people who have "been there and gone through that"!
Will be updating with firm date and valve selection, etc. shortly....

Best wishes going forward.