BAV diagnosed 12 years ago, asymptomatic until now?

[Cuzfuzz1]

I'm a 39 year old healthy and active male, BAV diagnosed 12 years ago, every 6 month echocardiograms and stress tests with slow escalation of measurements but asymptomatic until now. The last 3 weeks I have had waxing and waning lightheadedness, two times it was to the degree where I had to sit down. I have been more or less ignoring it and writing it off to other causes, but I think it's time to face the facts that this is likely my first aortic valve symptom. My most recent cardiologist visit was 2 months ago, measurements written below. I always hit 14 minutes on the treadmill which is great, and I had no trouble doing it at this last visit. There is currently no shortness of breath or other symptoms, just this dadgum lightheadedness, and MAYBE a little swelling of the extremities (subjective). Blood pressure has been similar to in the past (120-135/60-70). I know I need to get in to see my cardiologist this week, but I was wondering if lightheadedness is a symptom anyone else felt pre-surgery? Any help is greatly appreciated! -Chris

April 2014 results
Ejection fraction: 55%
LV diameter in diastole: 6.3cm
LV diameter in systole: 4.77cm
Aortic root: 4.3cm
14 minutes on treadmill test

 

[Mentu]

Hi, Chris, for at least a year before I first met my surgeon, I found other plausible excuses for why my energy level should be dropping off and the short periods of light headedness. I then began to experience shortness of breath that grew more pronounced and, around the time I first met my surgeon, I began experiencing palpitations that left me totally exhausted for about an hour after each bout. We commonly are diagnosed with stenosis and live for quite sometime with the knowledge that one day it could change. When the valve begins to change it can do so with increasing speed which is in itself an indicator that surgery is not far off. Blood pressure is not a good indicator because the heart compensates for the difficulty of forcing blood through the valve as its orifice is reduced. Reduced bloodflow also results in fluid retention which is most commonly seen first in the lower legs and hands; do you wear a ring and does it get tight? As you know already, the best thing to do is let your cardiologist know what is happening so the progress can be monitored. Take care.

Larry

 

[tom in MO]

Yes lightheadedness is a symptom. I was told to call my cardio if I had that symptom. I'd call and tell the cardio's nurse first thing monday.

Welcome to the forums, feel free to ask anything. Good luck.

 

[Cuzfuzz1]

Thank you for the reply. It's subjective, but I feel like my socks leave more of an indentation than they used to. I definitely think a Monday morning call to the Cardiologist is in order.

 

[Mentu]

Chris, playing the game of symptoms can be very frustrating. I would suggest that when you speak with your cardiologist directly that you ask him to lay out his triggers for surgery. My surgeon wanted me to display each of the primary symptoms

Heart murmur
Dizziness or Feeling faint or fainting with exertion
Fatigue, especially during times of increased activity
Shortness of breath, especially with exertion
Heart palpitations — sensations of a rapid, fluttering heartbeat
Chest pain (angina) or tightness

Eventually, I did acquire each of these but this meant that I was quite sick by the time I had surgery. Considering that the progress of stenosis is well understood, I found it frustrating that my cardiologist did not recommend surgery until the day I experienced radiating chest pains. Because he waited so long, my heart experienced more thickening & stiffening than it would have if surgery had been performed months earlier when I was more healthy. The more heart damage that occurs before surgery, the more likely it is that your recovery can be compromised. Try to tie down your Cardio as to how far he is going to allow your disease to progress - how sick you must become. Otherwise, his decision can be surprisingly subjective. Once the valve is changing more rapidly, you are at greater risk. I would ask him "Just how sick do you want me to become before you recommend surgery?" I would also suggest you tell him very succinctly what you want and what you expect from him.

Your Cardiologist works for you. If he or she fails to act in your best interest, it is time to fire the old one and hire a new one.

Larry

 

[river-wear]

I had virtually no symptoms when my cardiologist sent me to the surgeon to get fixed. I only felt tired a lot of the time. My EF had fallen to 50%. When the surgeon got in to take a look, he rated the regurgitation at 5+, the highest my cardiologist had ever seen.

I hope you got satisfactory answers from your cardiologist today. Best wishes.

 

[tom in MO]

I had no symptoms before they said I needed surgery within the next 2-6 months or face "sudden death" syndrome. That was based solely on my echo. I knew something was up when the echo tech said (first time she ever asked a question) "Are you sure you've had no symptoms of dizziness, lightheadness, etc.". I had my first and only bought of dizziness a month after that and two months before surgery. Things got darker, I got dizzy, had to steady myself. Luckily it was at church and it looked like I was just being polite and waiting for others to go first When they removed my valve, the surgeon said it was "just about shot."

 

[sunshine2cats]

am scheduled for replacement in two weeks...when i met the surgeon he said it was critical..what was the sense in all those treadmills and echos , i was putting off something that could not go away but get worse. my other cardio doctor would sort of suggest it but not persist...i needed to be told..."you do it NOW' and finally ithappened..yes i cried and was upset but it had to come. if i dont have it done...i will not be here in 3 years and will have problems along the way.. my symptons now are not that great but the whole thing is ...it is now or never. i am sick about and sure,,try and get out of it..i would love to skip town. i am a small person, have no reserve of blood , hate nausea but this is the way it is to live. i have had only about 3 lightheadness in 3 years, no pain,,but pressure on the chest and am highly a nervous person. two weeks seems now like forever..i want to go in tomorrow. thanks for listening.

 

[flyboy]

I felt asymptomatic from the entire time I was diagnosed up until my surgery. I was working out all the way up to a week before my surgery, running around 3 miles every other day and doing minimal weightlifting. The funny thing is I sometimes had skipped beats when I pushed too hard during running but always thought that was because of my age (43). Since my surgery six months ago I have not had a single funky skipped beat or anything weird, even during exercise. Since I was asymptomatic, I wondered if I was really ready for the surgery or maybe could wait a little longer. I thought I was doing good before but now post-op, I'm even better. My point is, you might get used to things that are "abnormal" and you might dismiss them as a symptom like I did. My advice is don't. I'm glad my cardiologist was aggressive in paying attention to the other "signs" of when surgery should be done (extreme leaking in my case). If it was up to me and how I felt, I still would be in the waiting room!

 

[skeptic49]

Chris...What were your gradients and peak jet velocity in April?

Jim

 

[Cuzfuzz1]

Ok, so an update on my case. The lightheadedness and fatigue are most likely due to my valve and it's surgery time. Surgery date is in 3 weeks. Doc at Emory-Atlanta is going to try to REPAIR the valve rather than REPLACE it. He will also be replacing my aortic root. I'm a veterinarian and am on my feet all day - it gets pretty tough some days, and I can't be the father I want to be with my two young daughters, so I'm positive this is the step that needs to be taken. That doesn't keep me from being a nervous wreck about it though! This forum has been a blessing and I can't thank you all enough for being honest and willing to share. -Chris

Jim - unsure on the gradients. As far as I know I don't have stenosis.

 

[Cuzfuzz1]

Ok, so an update on my case. The lightheadedness and fatigue are most likely due to my valve and it's surgery time. Surgery date is in 3 weeks. Doc at Emory-Atlanta is going to try to REPAIR the valve rather than REPLACE it. He will also be replacing my aortic root. I'm a veterinarian and am on my feet all day - it gets pretty tough some days, and I can't be the father I want to be with my two young daughters, so I'm positive this is the step that needs to be taken. That doesn't keep me from being a nervous wreck about it though! This forum has been a blessing and I can't thank you all enough for being honest and willing to share.
​
Jim - unsure on the gradients. As far as I know I don't have stenosis.

 

[Ryan CA]

Hey Chris,

Congratulations on getting the surgery scheduled. It will be over and behind you before you know it.

 

[Stevecro]

Hi Chris,

I am pretty much in exactly the same situation as you, I just saw my cardiologist last month and my stats were little different to yours, my LV was 67mm and EF: 71%. My Regurgitation is categorized as being 'moderate'. I have been given Ace Inhibitors by my cardio and have been taking them for a while. I do get symptoms occasionally such as lightheadedness and palpitations sometimes. I passed the stress echo on the highest level, I do keep very fit, I exercise at least 5 - 6 days a week.

I did get a second opinion from another cardiologist, he pretty much has the same view, that I should wait to have it fixed rather than have it fixed right now. Not sure why both cardiologists have the same view. I am in Australia and Im not sure if they follow the same protocols here.

 

[Cuzfuzz1]

Ok, so here I am 5 days post surgery. Sept 2 I had A valve sparing ago aortic valve repair rather than replacement, And a portion of my aortic root was replaced. I feel pretty awful, but I assume it's normal to be fatigued and lightheaded this close post-surgery. Plus, the beta blocker and other meds they put me on probably add to it. I'll be leaving the hospital tomorrow and taking it easy for 6-8 weeks.

 

[Paleowoman]

Hi Cuzfuzz - it is really early days for you, and the meds, like you say, will be affecting you too. Just be sure to let them know. All the best for the next few weeks - take it easy but also do gentle exercise like walking as that can help. See your GP too so he/she knows how it's going.

 

[tom in MO]

Congratulations. I hope all continues fine for you, the biggest hurdle is over

 

[MarkU]

Glad to hear your surgery went well. Ease back into your routine and listen to your body. Somedays it will be two steps forward and one step back as you bump up against your limits. Nothing wrong with taking a nap if you feel like it.

Best wishes for your recovery.

Mark

 

[river-wear]

Hang in there! After the first two weeks, you will begin to notice how much better you feel with each week that goes by.