severe aortic insufficiency

[Guest]

[FONT=&quot]I'm a 55 yr old male diagnosed with a bicuspid aortic valve in 2007 after experiencing palpitations and a heart murmur identified by my GP. Up to this point (for eight years), no treatment has been necessary. However, my current status is severe aortic insufficiency and elevated blood pressure. I'm still asymptomatic, but my cardiologist is now suggesting that I start taking Amlodipine, a calcium channel blocker for high blood pressure treatment. I’m hoping it will delay valve replacement surgery and won’t cause serious side effects. I’m interested in hearing from others who have been in this situation as well as anyone knowledgeable about this medication, other alternatives and the possibility of surgery in the future. Thanks![/FONT]

 

[yotphix]

That sounds pretty much the same as me. I was just 30 when I was diagnosed, after a careful, attentive GP wondered what all the noise in there was, and sent me for an echo. I was also essentially asymptomatic, in my case for over 9 years. The onset of symptoms wasn't dramatic, but it was kind of fast. I actually didn't take the nifedipine that I was prescribed for more than a few months. The truth was, I lowered my BP with lifestyle changes, and didn't need to suffer the side effeccts of daily meds.
Eventually, I needed surgery, got the new valve and never looked back. I was told all along that surgery was not inevitable, but I certainly am grateful that it was available!

 

[MurmurSinceForever]

Hi, I don't post here often, I am one who benefitted greatly from the experience of others who so generously post here and am now just living a much healthier life after my successful aortic valve replacement surgery. I was prompted to write now to you because since my surgery 10 months ago, I have found myself saying so often to friends and family "why was I so worried and why did I wait so long?"

I am female but similar age (50 at time of surgery) and I had a murmur, well since forever, but for 5 years prior to surgery I waited and delayed and postponed and claimed to myself and my cardiologist that I was asymptomatic. Since surgery I realize I was fooling myself. It was a slow decline but I was experiencing symptoms and just because I was still out pacing my heart healthy sister and husband didn't mean I wasn't feeling heaviness in my chest and left arm, tingling and burning in my throat when starting out on walks, and disrupted sleep on my back. I can see this all so clearly now that all of those conditions (uhh yes symptoms) are completely gone.

I guess what I am asking you to ponder is why you are considering taking a medication to delay the surgery? I was always told, but not sure I heard, that surgery was inevitable. I had severe aortic stenosis. So why did I wait, delay procrastinate and fool myself? Because all that avoidance was easier than trying to arrange putting my life and career on hold for 3-5 months to get the surgery. It was tough to get my husband to take over both house and business duties and let him take care of me, but only 10 months later my life is so back to normal, I almost forget that it was disrupted at all.

I totally understand if you have something in life to complete before you have surgery, or if the costs are too much to handle right now or you need to get insurance in place, but if the choice is in your hands and it is only fear preventing you from moving forward, I suggest it's best to face the fear, plan how to overcome the challenges of being off your feet for awhile, make the choice of valve and then let the health professionals take care of the rest. The relief of having a perfectly healthy new aortic valve and a healed chest wall can only happen once you get the surgery done.

I really don't mean to be pushy and I really don't mean to imply that you are not asymptomatic. I know others here truly were asymptomatic prior to surgery and I am not doubting you. This is me giving my experience from the perspective of being on the other side of a daunting surgery and not having to go to semiannual cardiologist appointments, each time hoping he wouldn't say "it's time", no longer wondering if that twinge was something, or that palpitation was the last beat of my heart, no longer anxious all the time.

Good luck, I wish you only the best.

 

[Mike59]

Hi, I don't post here often, I am one who benefitted greatly from the experience of others who so generously post here and am now just living a much healthier life after my successful aortic valve replacement surgery. I was prompted to write now to you because since my surgery 10 months ago, I have found myself saying so often to friends and family "why was I so worried and why did I wait so long?"

I am female but similar age (50 at time of surgery) and I had a murmur, well since forever, but for 5 years prior to surgery I waited and delayed and postponed and claimed to myself and my cardiologist that I was asymptomatic. Since surgery I realize I was fooling myself. It was a slow decline but I was experiencing symptoms and just because I was still out pacing my heart healthy sister and husband didn't mean I wasn't feeling heaviness in my chest and left arm, tingling and burning in my throat when starting out on walks, and disrupted sleep on my back. I can see this all so clearly now that all of those conditions (uhh yes symptoms) are completely gone.

I guess what I am asking you to ponder is why you are considering taking a medication to delay the surgery? I was always told, but not sure I heard, that surgery was inevitable. I had severe aortic stenosis. So why did I wait, delay procrastinate and fool myself? Because all that avoidance was easier than trying to arrange putting my life and career on hold for 3-5 months to get the surgery. It was tough to get my husband to take over both house and business duties and let him take care of me, but only 10 months later my life is so back to normal, I almost forget that it was disrupted at all.

I totally understand if you have something in life to complete before you have surgery, or if the costs are too much to handle right now or you need to get insurance in place, but if the choice is in your hands and it is only fear preventing you from moving forward, I suggest it's best to face the fear, plan how to overcome the challenges of being off your feet for awhile, make the choice of valve and then let the health professionals take care of the rest. The relief of having a perfectly healthy new aortic valve and a healed chest wall can only happen once you get the surgery done.

I really don't mean to be pushy and I really don't mean to imply that you are not asymptomatic. I know others here truly were asymptomatic prior to surgery and I am not doubting you. This is me giving my experience from the perspective of being on the other side of a daunting surgery and not having to go to semiannual cardiologist appointments, each time hoping he wouldn't say "it's time", no longer wondering if that twinge was something, or that palpitation was the last beat of my heart, no longer anxious all the time.

Good luck, I wish you only the best.

Hi
Would you so kind as to advise which type of valve you choose

i too put surgery off which is not wise and agree with your comments

 

[almost_hectic]

I was put on a calcium channel blocker for years a long time ago by my original cardiologist. Actually I think it was nifedipine. It wasn't a big deal, don't remember much in the way of side effects. My cardiologist at the time thought it would prolong the life of the valve, can't say if it did or not. A later cardiologist disagreed and said I didn't have to take it, but I didn't have a high blood pressure issue to deal with. As was said however, if you've been told it's severely insufficient there's not much point in waiting to have surgery. Get it over with and get on with your life. You'll be much better able to enjoy it. I had mine fixed just 6 weeks ago with a mechanical valve replacement. I've got a bit further to go with recovery but I'm confident I'll be stronger than prior to surgery and I'm looking forward to being more active without worrying about over doing it because of a leaky valve.

 

[MrsBray]

Hi there. I've got a couple topics to write about.
1. I think that after you have surgery you'll look back and argue with yourself about being asymptomatic. Our symptoms come on so quietly and stealthily that we don't notice it. And then our body adapts and changes to meet a "new normal" and really, we don't even notice it.
2. I was told that the longer I waited for more severe symptoms, the longer my heart had to accommodate the insufficiency. Since the heart is a muscle, and when muscles work harder than they are supposed to over an extended period of time they grow larger and firmer, I was doing damage to my heart by waiting for symptoms to appear. Looking back, I was fooling myself.
I was tired.
I was slow.
My hands and feet were cold - it was 90 degrees outside.
I felt like I couldn't take a full breath without effort.
I chalked it up to getting old.

I was 43 when I had surgery. That's not old.

If you have severe insufficiency and your doctor is ok with delaying surgery, perhaps you should seek a second opinion. You know, just to make sure.

Once your heart muscle is damaged and hardened, it doesn't bounce back from surgery like it would have before.
Best of luck, welcome to the baords, there is so much information on here. And if you can't find what you're looking for, just ask. We love to talk about ourselves.

 

[almost_hectic]

Hi there. I've got a couple topics to write about.
1. I think that after you have surgery you'll look back and argue with yourself about being asymptomatic. Our symptoms come on so quietly and stealthily that we don't notice it. And then our body adapts and changes to meet a "new normal" and really, we don't even notice it.
2. I was told that the longer I waited for more severe symptoms, the longer my heart had to accommodate the insufficiency. Since the heart is a muscle, and when muscles work harder than they are supposed to over an extended period of time they grow larger and firmer, I was doing damage to my heart by waiting for symptoms to appear. Looking back, I was fooling myself.
I was tired.
I was slow.
My hands and feet were cold - it was 90 degrees outside.
I felt like I couldn't take a full breath without effort.
I chalked it up to getting old.

I was 43 when I had surgery. That's not old.

If you have severe insufficiency and your doctor is ok with delaying surgery, perhaps you should seek a second opinion. You know, just to make sure.

Once your heart muscle is damaged and hardened, it doesn't bounce back from surgery like it would have before.
Best of luck, welcome to the baords, there is so much information on here. And if you can't find what you're looking for, just ask. We love to talk about ourselves.

That's a great point. I would still be waiting for surgery had I not switched cardiologists. Back in April the cardiologist said I was going to need surgery in a "year or two" I didn't much care for the guy nor did I really believe him so I wanted a second opinion. New cardiologist redid the Echo and called to say yup I would need surgery but not in a year or two, that it would be more like a "month or two" instead!! I wasn't ready to hear that! Surgery was on Aug. 11 and afterwards the surgeon said I was lucky I made it to surgery. Thing looked pretty bad I guess, but that's all behind me now! Not to scare the original poster, I'm sure my situation was not common. At least I hope not. But because of my aortic anyeurism, had I continued to wait for surgery I might not have lived to actually see it happen. But nobody was aware I even had the anyeurism until the surgeon ordered a CT scan prior to surgery. Cardiologists were only relying on echocardiogram which didn't show my aorta I was told. Seems to me diagnostic testing like that should be standard to see everything going on!

 

[cldlhd]

That's a great point. I would still be waiting for surgery had I not switched cardiologists. Back in April the cardiologist said I was going to need surgery in a "year or two" I didn't much care for the guy nor did I really believe him so I wanted a second opinion. New cardiologist redid the Echo and called to say yup I would need surgery but not in a year or two, that it would be more like a "month or two" instead!! I wasn't ready to hear that! Surgery was on Aug. 11 and afterwards the surgeon said I was lucky I made it to surgery. Thing looked pretty bad I guess, but that's all behind me now! Not to scare the original poster, I'm sure my situation was not common. At least I hope not. But because of my aortic anyeurism, had I continued to wait for surgery I might not have lived to actually see it happen. But nobody was aware I even had the anyeurism until the surgeon ordered a CT scan prior to surgery. Cardiologists were only relying on echocardiogram which didn't show my aorta I was told. Seems to me diagnostic testing like that should be standard to see everything going on!

If the cardiologist saw you had a bav from the echo they should have ordered the ct scan right away. I also think the echo should show an aneurysm just not as accurately as the ct.

 

[honeybunny]

Mike, look at her profile.

 

[MurmurSinceForever]

Hi
Would you so kind as to advise which type of valve you choose

i too put surgery off which is not wise and agree with your comments

Hi Mike59: no problem I have a St. Jude's mechanical valve. I made the mechanical choice, the surgeon made the brand choice. Choosing a valve type is such a personal thing, in the end I realized I was most afraid of the surgery and the recovery, so I made the choice that would most likely prevent having to face the surgery again. The noise and the warfarin are not issues for me.

 

[almost_hectic]

If the cardiologist saw you had a bav from the echo they should have ordered the ct scan right away. I also think the echo should show an aneurysm just not as accurately as the ct.

My feeling exactly. My cardiologists when I lived near Chicago were so great. Down in Florida I'm not sure. I think my most recent guy is good. After seeing my echo he immediately wanted to do a heart cath and see that my arteries were healthy for surgery. Once that was done he sent me right to see the surgeon. Can't know if the only reason he didn't order the CT was because he knew the surgeon would do that?

Still debating making some kind of formal complaint about the previous cardiologist who claimed my surgery wouldn't be for another year or two. I could have dropped dead before making it to my next appointment with him!

 

[cldlhd]

I'm sure there's good docs all over but I think some areas have higher concentrations. I figured Florida being a retirement they do valve jobs like oil changes. I live outside Philly which has a lot of hospitals and a pretty vibrant medical community. Actually I was reading on another site about a guy from Miami who flew his mom up to have her valve surgery performed by the same guy I had. Her cardiologist told him if it was his mother that's who he'd want.

 

[almost_hectic]

I'm sure there's good docs all over but I think some areas have higher concentrations. I figured Florida being a retirement they do valve jobs like oil changes. I live outside Philly which has a lot of hospitals and a pretty vibrant medical community. Actually I was reading on another site about a guy from Miami who flew his mom up to have her valve surgery performed by the same guy I had. Her cardiologist told him if it was his mother that's who he'd want.

Yeah, I know what you mean. I was inclined to think the same thing about Florida. Not sure though... maybe with so many old people they get used to seeing the worst and it doesn't phase them. Or even worse yet, used to seeing patients not make it... I think part of it is where I live most of the people don't live here year round and go back to their homes up north in the summer. So maybe they get used to not building a patient relationship because so many come and go all the time.

As for my surgeon, I got really lucky! Found an amazing guy in Fort Myers just 30 minutes away. He's using very advanced minimally invasive techniques, he's great at relating to patients, has a super dedicated team. Even the nursing staff on the cardiac wing are amazing and super dedicated. I'm told surgeons from all over come to observe him and his other surgeons. The Lee Memorial hospital system is in the early stages of building a cardio thoracic surgical center just for this team. So yes I feel very fortunate they were right in my back yard.

 

[BeatGoesOn]

Hello to all and thank you for your input! I’m the originator of this thread, no longer a guest, now going by BeatGoesOn . I’m new to the forum so just getting up to speed. I hadn’t returned to the site for several days and was surprised and delighted to see all the comments. As you all know, it really helps to know others who are going through this – so thank you for sharing your thoughts and advice.

I hope you don't mind that I'm indirectly replying to everyone in this post since I'm a bit late and in an attempt to condense the info. Here are my follow-up thoughts…

1) CONGRATS! It’s awesome to see that so many are happy to have had the surgery and are feeling in good health and good spirits after the operation. It’s very encouraging and certainly something to be celebrated.

2) UP TO THIS POINT, I was hopeful that I would either be able to avoid surgery all together or delay it long enough so that advances in medical science would possibly work in my favor. But, as many have cautioned me, I need to make sure I'm not doing damage to my heart in the meantime or putting myself in a higher risk situation by delaying. So I need to find out ASAP if surgery is now the necessary course of action and I plan to address this with my cardiologist very soon.

3) BLOOD PRESSURE MEDICATION: My understanding is that there’s some evidence from clinical trials that blood pressure medication (nifedipine in the study I believe) may delay the need for surgery as well as improve outcomes after surgery (and I emphasize that this is just my understanding at this time). Now I know that many of you are of the opinion that surgery should not be delayed if aortic insufficiency is severe, but I need to better understand why it often is and if it is more complicated than just going by that factor alone.

4) SYMPTOMS: I am going to pay closer attention to this. I don't really experience shortness of breath unless I do something more strenuous, so it's always been hard for me to know if that's abnormal. My blood pressure has been more elevated this past year, but measuring it has also been a bit inconsistent. The other issue for me is that I now seem to experience a heavier pulse sensation throughout my body. Wondering if anyone else experiences this?

5) URGENCY: In many cases, the attitude about surgery seems to be the sooner the better. I need to further discuss this matter with my cardiologist(s) to really understand my particular situation but I immensely value your opinion about this.

6) VALVE: All I know is I'm likely to be a candidate for a mechanical valve. Haven't learned about the various types of mechanical valves yet. Interested in any opinions.

7) NOISE: MurmurSinceForever mentioned that noise wasn't an issue. Can you elaborate?

8) BLOOD THINNER AFTER SURGERY: I'm interested to know if those who have had surgery have any issues with their blood thinner meds.

Thanks again... yotphix, MurmurSinceForever, Mike59, honeybunny, almost_hectic, MrsBray, and cldlhd. Your feedback is much appreciated!

 

[Paleowoman]

Hi BeatGoesOn - just seen your thread. I was away on holiday so missed it. I was diagnosed with bicuspid aortic valve in my 20's but not really followed up until around 8 years ago in my early 50's when the murmur became much more pronounced. I had aortic valve replacement 16 months ago. I was completley asymptomatic prior to surgery and I wasn't kidding myself, I really had no symptoms and was extremely fit, doing wieght lifting and a six mile walk the day before admission for surgery. However, my pressure gradient and aortic valve area indicated that I was in critical stenosis and so I had surgery. I had a bioprostehtic valve as I didn't want to take warfarin nor have the ticking noise !

What does your cardiologist advise regarding the timing for your surgery ? Have you had a referral to a cardiac surgeon for an opinion ? I don't think the timing of surgery should be left up to the patient, I mean we're not doctors ! Of course a patient can get a second or even third opinion if they're not sure.

I've never taken blood pressure medications, but from what I understand, high blood pressure is a symptom, and taking medication for a symptom, in a sense, is like taking an aspirin for toothache - the pain might go but the problem still remains.

 

[MurmurSinceForever]

Hi BeatGoesOn (cool name), I am so glad Paleogirl came back from vacation because she was one I mentioned truly didn't have symptoms and I am glad for her perspective in your questions. I agree with her that the patient shouldn't be the one to make the timing decision but, as was in my case, sometimes the patient doesn't accurately communicate with the doctor. For me it took a treadmill stress test for us both ( doctor and patient) to come to the conclusion that it was time. I admitted to the burning/ tingling in my throat (in my defence I didn't know it was a symptom, it wasn't in the list recited at every appointment, and I had had that for as long as I could remember so it wasn't new or worsening, just there) and my doctor saw the changes displayed in the electrocardiogram. No more discussion!

Anyway, as for the noise. What I meant and I know others have very different and just as valid opinions, is that although I can often hear the ticking of my valve it is not always noticeable, mostly at night when I can't sleep for reasons such as caffeine. When that happens, I have started to use it to count myself back to sleep. My husband does not hear it unless his ear is to my chest, and I haven't yet scared anyone in an elevator thinking my heart ticking was a bomb, although I am still waiting for that one to happen.

And as for the warfarin, it is a balance. It doesn't manage itself on autopilot, you have to remember to take the medicine and have your INR tested regularly. i am currently dealing with my first real challenge with anticoagulation. I need a needle aspiration to confirm a breast lump is benign and the surgeon at the breast clinic wants me to stop warfarin for a week before the procedure. He is checking with the INR clinic and will make a plan, it's just delaying an already anxious situation. I can imagine this will be a something that I will have to contend with off and on from now on, routine screening is usually not invasive so no problem, but the more invasive diagnostic procedures will require this extra caution. Oh well, for me, and for now, I am still happy with the choice I made for myself.

I wish you all the best.

 

[BeatGoesOn]

(I don't appear to have the Comment button that displays below each reply - from what I've been told - so I can only use the Post Reply button. Not sure why - waiting for the Help Desk to respond. Therefore, I don't think I can reply inside a specific comment, only post a new comment below all the rest. If anyone knows why and/or if I'm doing something wrong, please let me know. Thx)

Hi Paleogirl, Thanks for contributing to this thread. I will talk to my cardiologist about critical stenosis relative to my situation as well as high BP as a symptom. It will be key for me to better understand his reasoning for holding off on surgery at this point.... I'm interested to know more about bioprostehtic valves. What's the down side? And are you happy with that decision?

Hi MurmurSinceForever, Thanks also for your input. So I'm wondering if I should take the treadmill stress test. Also, wondering about when a CAT scan should be performed. More items to discuss with my cardiologist. Did you consider a bioprostehtic valve before your surgery or was that not an option? I'm sorry to hear that managing the warfarin is complicating the aspiration procedure. Hang in there this week. Wish you all the best as well!

 

[Paleowoman]

Hi BeatGoesOn - perhaps "severe aortic insufficiency" can wait a bit as opposed to "critical stenosis" ? If a person is in critical stenosis irreversible damage can be done to the heart as it compensates trying to get the blood through the stenotic valve.

Bioprostetic valve/tissue valve - the down side is the fact that after 15, or maybe 20 years, a person with one will need a "re-do". They don't last forever like mechanical valves are supposed to. I'm very happy with my decision. The only thing that tells me I've had a valve replacement now, 21 months after surgery, is that I have a scar and, of course my memories of it all. I don't need to take any medications and the valve makes no noise. I do have a murmur which doctors can hear, but that, apparently is normal, it's called a flow murmur. I get check ups with cardiologist six monthly, will probably be yearly soon with echos to keep an eye on things.

 

[BeatGoesOn]

Hi Paleogirl, Thanks for your comments. Great to know that things are quite normal (finally normal?) for you after the surgery. Very encouraging. I will be discussing my situation in more detail with my cardiologist soon. For the past eight years, I guess I didn't want to think too much about it. Checkups indicated that everything was fairly stable and that was all I needed to hear. But now that there have been some changes, I want to get very clear about my status and options. Thanks again!

 

[MurmurSinceForever]

Hi MurmurSinceForever, Thanks also for your input. So I'm wondering if I should take the treadmill stress test. Also, wondering about when a CAT scan should be performed. More items to discuss with my cardiologist. Did you consider a bioprostehtic valve before your surgery or was that not an option? I'm sorry to hear that managing the warfarin is complicating the aspiration procedure. Hang in there this week. Wish you all the best as well!

If you are offered or could ask for the treadmill test, I would if I were you. The more information the better. But remember I am in Ontario Canada and we do not incur costs for such tests (of course these cost are actually paid for by our taxes). I never had a CAT scan so do not know. My doctors were satisfied with echo's, and then before surgery the angiogram (with the dye) for the surgeon but just to check that there were no blockages to deal with in addition to the valve change. I thought they would measure valves etc to get more info, but nope, just to check for blockages.

I did consider a tissue valve, very seriously actually. My surgeon told me I could tell him my decision up to the moment I was wheeled into the operating room and I took almost every moment of that time. I read every argument posted here for both valve types, googled the heck out of it too.


Here is a post describing how I came to my decision.
http://www.valvereplacement.org/for...849515-my-introduction-date-set-decision-time
I do go over the choice every now and then, including the car ride home yesterday and I still have no regrets. I will get through this challenge and every other that comes along. Thank you BTW. That's the thing, once you have a new valve, you just deal with whatever comes your way, it's your new normal. I quote a wise poster here (Steve maybe) who said "there is no bad choice when it comes to valve selection", each is better than the one currently in your chest right now.