I just got diagnosed with a bicuspid aortic valve and need some advice

[froggyfreak330]

Hi, my names Jessie, and I just got diagnosed with a bicuspid aortic valve. I had been dealing with symptoms since I was 19. According to the cardiologist that looked at my ECG(how they determined I had this), he said it wasn't bad enough to require surgery but to get it checked out every two years with another ECG. My question is - did anyone have the surgery done just to get it over with and stop having symptoms? I have major fatigue(to the point where Im huffing and puffing just doing the simplest of tasks), shortness of breath(where I just don't feel like I can take a deep breath), numbness and tingling(and sometimes pain) in my left arm, and pain in my chest. Which reminds me, I wanted to ask if anyone else had the pain in their arm that happened at the same time as the chest pain? I never had them happen at different times, just always at the same time. Anyway, Im scared to get the surgery since its open heart surgery, but even if it never gets bad enough to need it, the symptoms are bad enough that Im not sure I want to live the rest of my life with it like this. Plus, I read that around 80% of people with this end up needing surgery, so do I want to wait until it does get bad enough? Since apparently there is a good chance it will. Thanks in advance to everyone who replies.

 

[Ryan CA]

Hi froggy.....Welcome to the site. Symptoms like you are describing are typically a pretty good reason to get your valve fixed. Once symptoms begin to have a significant impact on quality of life, I wouldn't call it a "just to get it over with" situation.

My previous cardiologist told me I had to stop living the active life I love but didn't think it was "time" for surgery. I got a new cardiologist....

I would go get a second opinion at a well regarded heart center that has both Cardiologists and Cardio-Thoracic Surgeons on staff.

Good luck

 

[froggyfreak330]

Hi Ryan, I was thinking that but I didn't know if the severity of symptoms directly reflected the severity of valve damage. I actually plan on calling to see if I can get a new doctor(My current doctor got killed in a car accident earlier this month. He was such a good doctor, and the first doctor to actually take my symptoms seriously instead of just attributing it to heartburn and a pinched nerve.) and ask outright to be referred to a cardiologist. I just feel like its worse than they determined and that Im basically a ticking time bomb. However, if it is determined that its not bad enough to need surgery, do I still go ahead with it? I don't want to live like this for the rest of my life but do the benefits of surgery outweigh the risk? Im leaning more towards yes.

 

[pellicle]

Hi

... and I just got diagnosed with a bicuspid aortic valve. I had been dealing with symptoms since I was 19.

I was diagnosed at 5 and operated for the first time at about 10 (valve repair) because the surgeon did not want the heart to be damaged by adapting to the changes in blood flow (which you experience as symptoms).

I agree with Ryan below and also think that a second opinion would be a good idea.

Ryan says:

Symptoms like you are describing are typically a pretty good reason to get your valve fixed. Once symptoms begin to have a significant impact on quality of life, I wouldn't call it a "just to get it over with" situation.

and I totally agree with that. But I would above all seek another opinion (not just ours ;-) an ask what sorts of problems with ventricle enlargement you may suffer if it is not treated sooner (rather than later).

Anyway, Im scared to get the surgery since its open heart surgery, but even if it never gets bad enough to need it, the symptoms are bad enough that Im not sure I want to live the rest of my life with it like this. Plus, I read that around 80% of people with this end up needing surgery, so do I want to wait until it does get bad enough? Since apparently there is a good chance it will. Thanks in advance to everyone who replies.

well no need to be scared (although I do get why you are) because its a really well trodden path with among the best treatment success in medicine. If you had cancer you may not face a scary operation, but a much greater chance of death.

Operations you can recover from (I've had 3) but death ... well I know its Easter, but there's only been one claim to getting over death.

As I see it, The longer you wait the more your fitness declines and the harder recovery is. Get in early seems logical to me.

This article is interesting and raises some interesting points:

It is clear that prophylactic surgery (surgery before symptoms develop) is not the answer, since the whole population of patients with aortic stenosis would have to be exposed to the risks of surgery and to the complications of a valve prosthesis in order to protect a tiny minority.

but you are clearly NOT asymptomatic ... so to my mind the argument against acting sooner is thus weaker. So to any Dr who is against going in before you're on deaths door, the "risk analysis" of modern time (like later journal reviews than 2011) are for earlier treatment.

That is supported here:

Once symptoms develop, the treatment strategy is clear, as aortic valve replacement (AVR) improves symptoms, improves LV function, and improves survival.

So have a read of them and by all means ask questions here, its certainly good background to go to your next appointment with.

 

[AZ Don]

I agree with the prior posts to get a 2nd opinion. I would also suggest that you get a copy of your echocardiogram results and learn more about what it means - this site and your Dr's can help with that. Not sure how this was diagnosed from an ECG. It is an echocardiogram that gives the most relevant information about aortic valve function. The Guidelines for the Management of Patients with Valvular Heart Disease: http://content.onlinejacc.org/article.aspx?articleid=1838843 gives specific criteria for evaluating the severity of Aortic Stenosis and Aortic Regurgitation. There is a more readable article about Aortic Stenosis here: http://familymed.uthscsa.edu/geriatrics/reading resources/Aortic Stenosis.pdf. See especially table 1.

Re. the surgery. OHS is not to be taken lightly but I found the whole process and recovery to be much easier than I expected.

 

[joanpieroni]

Aortic Stenosis

Aortic Stenosis

I agree with the prior posts to get a 2nd opinion. I would also suggest that you get a copy of your echocardiogram results and learn more about what it means - this site and your Dr's can help with that. Not sure how this was diagnosed from an ECG. It is an echocardiogram that gives the most relevant information about aortic valve function. The Guidelines for the Management of Patients with Valvular Heart Disease: http://content.onlinejacc.org/article.aspx?articleid=1838843 gives specific criteria for evaluating the severity of Aortic Stenosis and Aortic Regurgitation. There is a more readable article about Aortic Stenosis here: http://familymed.uthscsa.edu/geriatrics/reading resources/Aortic Stenosis.pdf. See especially table 1.

Re. the surgery. OHS is not to be taken lightly but I found the whole process and recovery to be much easier than I expected.

Aortic Valve Replacement is major heart surgery but the stenosis will not go away, so getting the valve replaced is what's needed. My valve was so calcified the doctor couldn't get the catheter thru when I had an angiogram done. I had a small incision horizontally above my right breast about 3" so its not a huge thing. It's been 3 weeks, I can drive already, I feel great. I just take a nap and don't over due it.

 

[MrsBray]

I had my bicuspid aortic valve replaced with a mechanical valve almost 7 weeks ago (full sternotomy). Prior to the surgery I had shortness of breath walking across a parking lot, and could not keep up with family to walk the length of the mall. It took me a good 3-4 minutes longer at my pace. I had difficulty lifting heavy boxes at work, my hands and feet were always cold, and I felt palpitations. I started cardiac rehab (exercise) last week, and feel I am almost ready to go back to work as a bus driver/warehouse worker.

I did not like my first cardiologist, so after he referred me to a surgeon, I asked the surgeon and his staff to help me find a cardiologist. Once I had that taken care of, I asked my cardiologist and his staff to help me find a primary care doctor. I've ended up with a darn good roster of physicians that way!

Please don't be shy when it comes to your health care. If your doctor doesn't automatically refer you to a cardiologist, ask for a referral! If they won't send you to a cardio, find a different doctor!

Good luck, and don't read anything online from Wikipedia or WebMD about this. You'll just scare yourself with mostly inaccurate information.

 

[froggyfreak330]

Not sure how this was diagnosed from an ECG. It is an echocardiogram that gives the most relevant information about aortic valve function.

It was the ultrasound they do of the chest, I thought it was called an ECG.

 

[froggyfreak330]

I had my bicuspid aortic valve replaced with a mechanical valve almost 7 weeks ago (full sternotomy). Prior to the surgery I had shortness of breath walking across a parking lot, and could not keep up with family to walk the length of the mall. It took me a good 3-4 minutes longer at my pace. I had difficulty lifting heavy boxes at work, my hands and feet were always cold, and I felt palpitations. I started cardiac rehab (exercise) last week, and feel I am almost ready to go back to work as a bus driver/warehouse worker.

I did not like my first cardiologist, so after he referred me to a surgeon, I asked the surgeon and his staff to help me find a cardiologist. Once I had that taken care of, I asked my cardiologist and his staff to help me find a primary care doctor. I've ended up with a darn good roster of physicians that way!

Please don't be shy when it comes to your health care. If your doctor doesn't automatically refer you to a cardiologist, ask for a referral! If they won't send you to a cardio, find a different doctor!

Good luck, and don't read anything online from Wikipedia or WebMD about this. You'll just scare yourself with mostly inaccurate information.

Does the mechanical valve make noise? I read somewhere that you can actually hear it.

 

[froggyfreak330]

Im going to keep posting updates on here about my visits and whats being determined. Thanks for all the helpful advice. :biggrin2:

 

[Katesmom1007]

Hi, my names Jessie, and I just got diagnosed with a bicuspid aortic valve. I had been dealing with symptoms since I was 19. According to the cardiologist that looked at my ECG(how they determined I had this), he said it wasn't bad enough to require surgery but to get it checked out every two years with another ECG. My question is - did anyone have the surgery done just to get it over with and stop having symptoms? I have major fatigue(to the point where Im huffing and puffing just doing the simplest of tasks), shortness of breath(where I just don't feel like I can take a deep breath), numbness and tingling(and sometimes pain) in my left arm, and pain in my chest. Which reminds me, I wanted to ask if anyone else had the pain in their arm that happened at the same time as the chest pain? I never had them happen at different times, just always at the same time. Anyway, Im scared to get the surgery since its open heart surgery, but even if it never gets bad enough to need it, the symptoms are bad enough that Im not sure I want to live the rest of my life with it like this. Plus, I read that around 80% of people with this end up needing surgery, so do I want to wait until it does get bad enough? Since apparently there is a good chance it will. Thanks in advance to everyone who replies.

Hi, and I'm glad you found this forum. It's full of great information and people who answer your questions honestly.
I
Read that you have been having symptoms since you were 19, how old are you now?

I am also having symptoms of fatigue, shortness of breath, palpitations and chest pain. I've never had pain in my arm though. I'm going to a different cardiologist tomorrow for a second opinion because my old cardio (who also resigned suddenly) pretty much told me that my symptoms were in my head. Which makes me second guess myself.....
Anyway, good luck in your journey to find answers and relief.

 

[froggyfreak330]

Hi, and I'm glad you found this forum. It's full of great information and people who answer your questions honestly.
I
Read that you have been having symptoms since you were 19, how old are you now?

I am also having symptoms of fatigue, shortness of breath, palpitations and chest pain. I've never had pain in my arm though. I'm going to a different cardiologist tomorrow for a second opinion because my old cardio (who also resigned suddenly) pretty much told me that my symptoms were in my head. Which makes me second guess myself.....
Anyway, good luck in your journey to find answers and relief.

Im 24, so my doctor telling me to just not overdo it doesn't work for me. Even if it doesn't get bad enough to need surgery till Im 60, I don't want to waste all those years not being able to keep up with my kids(my daughter is 6). I want to have the energy to ride my bike everywhere and exercise. I think Im going to keep searching until I find a cardiologist who will ok the surgery. I just cant live like this much longer, its so frustrating. Anyway, my arm pain has been going on since I was 19 as well but recently started happening more often. The reason why I assume it has something to do with the valve is because it always happens at the same time as the chest pain, never on its own. Its always the same - chest pain along with numbness/tingling/pain in my upper left arm. There was one occasion, when I was pregnant last year, that the pain in my arm got so bad I went to the ER. So have you been diagnosed with the bicuspid valve or is it just suspected at this point. I hope it something less serious and easier to treat.

 

[epstns]

Hi, Froggy, and welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. It sounds like you're getting some pretty good advice from the others. I agree that a second opinion is a good idea. It sounds like your health coverage is an HMO, if you need referrals to specialists. I would push for a referral to another doctor, until you find one that you are comfortable with.

You didn't supply any details of your echocardiogram results. Most cardio's won't suggest surgery until your valve deteriorates to a certain specified point, presuming that until then your odds of death without surgery are less than the odds of death during the operation. Most cardio's that I have known, though, usually move onward to recommending surgery once the patient has any of the "cardinal" symptoms (which are - shortness of breath, fainting and/or chest pain). It sounds like you may be at that point, hence my focus on a second opinion.

While you may feel "medically isolated" you may actually be in a pretty good area to find good care. If you are in Kentland, Indiana, you are fairly close to both Chicago and Indianapolis. Both require a drive, but a day-trip to meet a specialist is very practical.

 

[froggyfreak330]

Hi, Froggy, and welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. It sounds like you're getting some pretty good advice from the others. I agree that a second opinion is a good idea. It sounds like your health coverage is an HMO, if you need referrals to specialists. I would push for a referral to another doctor, until you find one that you are comfortable with.

You didn't supply any details of your echocardiogram results. Most cardio's won't suggest surgery until your valve deteriorates to a certain specified point, presuming that until then your odds of death without surgery are less than the odds of death during the operation. Most cardio's that I have known, though, usually move onward to recommending surgery once the patient has any of the "cardinal" symptoms (which are - shortness of breath, fainting and/or chest pain). It sounds like you may be at that point, hence my focus on a second opinion.

While you may feel "medically isolated" you may actually be in a pretty good area to find good care. If you are in Kentland, Indiana, you are fairly close to both Chicago and Indianapolis. Both require a drive, but a day-trip to meet a specialist is very practical.

I never actually saw the cardiologist, nor did he know about my symptoms. My PCP scheduled the chest ultrasound and had it sent to a cardiologist for evaluation, and I was supposed to go in on the 19th and discuss the results with my PCP but that's not going to happen now. The office just called me to tell me the results of the chest ultrasound, but never went into detail. So, I already have to switch PCP's. I have the other doctor, in the same building as my old one(He's trying to take care of as many of my old doctors patients as possible), that I called today to ask if they were able to take me on as their patient. I have met him before, he's actually my daughters doctor. I'm just waiting for a call back to find out whether I need to look for a different doctor. I think when I talk to the receptionist again, I will ask right then and there whether he would be willing to refer me to a cardiologist based on my results. Just so if not I can just go ahead and look for another doctor who will. I mean, based on my results and severity of symptoms, I cant imagine I would have a difficult time finding a doctor who would refer me. Anyway, I was thinking of looking in Lafayette or Crown Point first in terms of seeking a cardiologist. Any PCPs I work with are more likely to work with cardiologists in Lafayette or Crown Point, since they are the closest large cities. However, if my doctor recommends one in Chicago or Indy, I guess I will try them first.

 

[Katesmom1007]

Im 24, so my doctor telling me to just not overdo it doesn't work for me. Even if it doesn't get bad enough to need surgery till Im 60, I don't want to waste all those years not being able to keep up with my kids(my daughter is 6). I want to have the energy to ride my bike everywhere and exercise. I think Im going to keep searching until I find a cardiologist who will ok the surgery. I just cant live like this much longer, its so frustrating. Anyway, my arm pain has been going on since I was 19 as well but recently started happening more often. The reason why I assume it has something to do with the valve is because it always happens at the same time as the chest pain, never on its own. Its always the same - chest pain along with numbness/tingling/pain in my upper left arm. There was one occasion, when I was pregnant last year, that the pain in my arm got so bad I went to the ER. So have you been diagnosed with the bicuspid valve or is it just suspected at this point. I hope it something less serious and easier to treat.

I totally agree with you about the doctor saying just take it easy and wait. That's pretty much what they told me. I'm 31. I have four kids 14, 8, 6 & 18 months. I can't keep up. I'm constantly short of breath and tired.
I feel like I'm crazy to want to have my valve fixed to feel better because the surgery is a big deal! (I have BAV and an aneurysm.) but I'm thinking like you, if we will likely need surgery, why not get it done early so that we can live a full life.
I just found out about my BAV and aneurysm in November of last year. So, just knowing that answers a lot of my questions. I've been feeling short of breath climbing stairs for years. I thought it was because I'm overweight.
Anyway. Definitely get a second opinion or three or four of you need to! Also, I just called the office at Duke hospital and made an appointment with a cardiologist. Or do you have to wait for a referral? Good luck!

 

[AZ Don]

It was the ultrasound they do of the chest, I thought it was called an ECG.

ECG is an ElectroCardiogram - the test with all the wires. The ultrasound is the echocardiogram. I suggest that you ask for a copy of your test results. I'm surprised that you weren't automatically referred to a Cardiologist after a diagnosis of a congenital heart defect (BAV). I suggest you ask for a referral to a Cardiologist based on that AND the fact that you are having chest pains.

 

[froggyfreak330]

I totally agree with you about the doctor saying just take it easy and wait. That's pretty much what they told me. I'm 31. I have four kids 14, 8, 6 & 18 months. I can't keep up. I'm constantly short of breath and tired.
I feel like I'm crazy to want to have my valve fixed to feel better because the surgery is a big deal! (I have BAV and an aneurysm.) but I'm thinking like you, if we will likely need surgery, why not get it done early so that we can live a full life.
I just found out about my BAV and aneurysm in November of last year. So, just knowing that answers a lot of my questions. I've been feeling short of breath climbing stairs for years. I thought it was because I'm overweight.
Anyway. Definitely get a second opinion or three or four of you need to! Also, I just called the office at Duke hospital and made an appointment with a cardiologist. Or do you have to wait for a referral? Good luck!

I apparently need a referral because of the insurance I have. Plus, I heard that most cardiologists wont even see you unless you get a referral from your PCP. I was thinking of asking for an MRI, I heard those can give more info than the chest ultrasound. Oh, I have another question for you and anyone else who sees this post - Do you have a normal sounding heartbeat when the doctor just uses a stethoscope? I heard most people with a BAV have some kind of murmur that can be heard. It it odd that I don't?

 

[froggyfreak330]

ECG is an ElectroCardiogram - the test with all the wires. The ultrasound is the echocardiogram. I suggest that you ask for a copy of your test results. I'm surprised that you weren't automatically referred to a Cardiologist after a diagnosis of a congenital heart defect (BAV). I suggest you ask for a referral to a Cardiologist based on that AND the fact that you are having chest pains.

Well, they sound like they both should have the same abbreviation. lol Im just going to keep looking for a doctor until Im referred to a cardiologist. I think if I had been able to meet with my original doctor he would have had no issues with referring me, he just wanted to do some tests first to see if it was in fact an issue with my heart. I don't have a doctor to refer me now, so Im not surprised I haven't already been referred.

 

[Katesmom1007]

As far as a referral goes, I'd call my insurance company and ask if you need one to see a specialist. And a cardiologist will see you because you have a congenital heart defect. You need to be monitored. An MRI or a cardiac CT would give more information than an echo. Or maybe more precise information. I had both, because for some reason my old cardiologist thought my chest pain and symptoms weren't from my original diagnosis. He was looking for coronary artery disease. And didn't find any.

Yes, I have a murmur. But oddly I only had two doctors mention it. One a few years ago when I was pregnant (didn't know about BAV then) and in the ER. I'm not sure if everyone with BAV has a murmur. But I have regurgitation not stenosis.

 

[froggyfreak330]

As far as a referral goes, I'd call my insurance company and ask if you need one to see a specialist. And a cardiologist will see you because you have a congenital heart defect. You need to be monitored. An MRI or a cardiac CT would give more information than an echo. Or maybe more precise information. I had both, because for some reason my old cardiologist thought my chest pain and symptoms weren't from my original diagnosis. He was looking for coronary artery disease. And didn't find any.

Yes, I have a murmur. But oddly I only had two doctors mention it. One a few years ago when I was pregnant (didn't know about BAV then) and in the ER. I'm not sure if everyone with BAV has a murmur. But I have regurgitation not stenosis.

I will probably do that if the doctor Im trying to see now refuses to give me a referral. Otherwise, I would like to know what cardiologist he recommends instead of trying to choose my own right off the bat. I have never had a doctor mention hearing anything strange with my heartbeat. Nothing weird with an ECG or x-ray either. I don't know if I have stenosis or regurgitation yet, but my guess is that I probably have one of them with how bad my symptoms are.