less common side effects of severe aortic valve leak

[dcruz72]

Can anyone share side effects they had or have before repair, of a really leaky vavle. I have a pretty bad leak and my left ventricle is 63mm. Been having dizziness on and off for 3 years. ALso been having stomach and digestion problems. Have had major workups done related to both problems that provided really no significant results or treatments. I am beginning to think it is all related to my bv with leak. I am 33 years old and able to stay pretty active as a golf pro. Just seems like all my chronic complaints turn up nothing. Had some torsional nystagmus in my right eye that they thought was bppv but nothing has helped it. As far as stomach workups they have been non productive as well. Just curious if the leak can cause problems that really dont go along with the written side effects of ai. Some of my doctors say they want to keep monitoring the leak and one doctor at cleavland clinic want to do the new procedure to reshape the valve and close the leak up. I am in a spinning nightmare of symptoms and am not sure what to do. stomach, balance, valve leak symptomatic for 3 years daily. any positive thoughts or experien:smile2:ces would be appreciated

 

[Mentu]

Welcome to our community. My experience was that when I began having symptoms caused by my stenosis, my Cardiologist sort of downplayed them for a long time. I began feeling fatique a year and a half before my valve was replaced. Dizziness was sometimes a problem and I could never really anticipate when it was going to happen. Palpitations also became common during the last year and in the months just prior to surgery they became debilitating if I exerted myself. In retrospect, if I had spoken with a surgeon who believed that surgery was an option earlier than it actually took place, I would have pursued it. As the valve continues to degrade, symptoms become more pronounced and to the best of my knowledge these valves do not improve. If you have an option to get off the slow escalator down to the basement, I would suggest that you seriously consider taking it. There are no rewards for waiting until symptoms become worse.

Larry

 

[yotphix]

Hi there. Sorry you are having trouble, but glad you are getting care and monitoring.
I also experienced dizziness with increasing frequency in the two years leading up to my surgery. One thing I discovered, is that although I was a lifelong lover of coffee, caffeine was the cause of my dizziness. It seemed to me that there was a relationship between caffeine and the vavlular insufficiency. One the valve was repaired I began to drink coffee again but without the dizziness. Caffeine, or at least coffee, is also the cause of whatever gastric difficulties I have had.
You have to consider that the docs have the best possible outcomes as their goal, and surgeons tend to want to cut as soon as they have the opportunity so if they are saying wait, there is a good chance that it is the right thing to do. On the other hand, in medicine sometimes it IS the squeaky wheel which gets the grease and if you don't or can't articulate your symptoms clearly you may not get the most appropriate care.
I do wish you all the best with it, and encourage you not to fear the surgery which is likely in your future, near or distant.

Paul

 

[JeffM]

Leaky Valve Symptoms - I had a BAV with regurgitation only, no stenosis. My Left Ventricle was 8.0cm at the time of surgery and its enlargement was accelerating over the previous couple years pre-op. So, definitely watch it carefully, which it sounds like you're doing. My only noticeable symptom was A-fib. It started roughly a year before my surgery but only upon really, really hard efforts on the bike and not every time. My high, fluctuating HR matched the the strange sensation I was feeling even though it should have been dropping steadily. No dizziness or light-headedness, just my heart beating (albeit arrhythmically) like I was still working all out even though I'd backed off. Not sure how else to describe it. The first few times I experienced A-fib, it lasted maybe 20 - 30 seconds. But as that final pre-op year progressed, it started happening more frequently and the episodes became longer. I finally had one that lasted almost 10 minutes. Believe it or not, my Cardio still wasn't recommending me for surgery. He also didn't tell me to back off my bike efforts and he knew how hard I worked out. I ended up off the bike for several weeks anyway due to back problems and while I was recuperating, I had two bouts of A-Fib that came on while I was sleeping that lasted throughout the next day. I had to be cardioverted for those episodes. Those were my first incidents of non-exercise related A-Fib and they, along with my updated echo, resulted in a surgery recommendation. Long answer to your simple question. Again, all I experienced was A-Fib, but VR is full of experiences and symptoms that vary widely. Good luck with yours!

 

[acr]

Don't think I had any symptoms, as far as I was concerned I was normal. What drove me to see the doctor was a racing heart rate, which lasted for maybe an hour. Saw my GP and he said "hmmmm....you have a heart murmur", and the rest is history. However thinking back, I can recall episodes of fast heart rate and general unease, which I always assumed was down to too much caffeine as I drink lotsa coffee.

One unusual thing I had was "De Musset's Sign", see http://en.wikipedia.org/wiki/De_Musset's_sign

This makes your head nod in synch with your heatbeat. I never noticed it, but the cardio saw it a mile away and knew I'd need an AV swap even before the Echo.

Ade

 

[drivetopless]

"http://en.wikipedia.org/wiki/De_Musset's_sign"
I've never heard of it, but now after reading about it I bet I've seen it in ohters before. I always thought they had a palsy issue, but maybe it was De Mussett's. Facinating sypmptom.

I have aortic stenosis. My symptoms have definitely gotten worse in the last year. Mainly I have a exercise intolerance and have to walk slower than an 85 year old to not have palpitations. I get random bouts of very subtle lightheadness. I remember one of the first signs whas when I was standing in line to check out and holding about 15 lbs of stuff because I didn't have a cart. I started getting lightheaded just standing there from the exertion of holding something in my arms for a while. Not good.
I also can't lay on my side for very long or I get out of breath. I sort of have to sleep with my shoulders back or I get lightheaded when laying down.
Caffeine also gives me palpitations, so I have to watch that.

 

[JeffM]

Don't think I had any symptoms, as far as I was concerned I was normal. What drove me to see the doctor was a racing heart rate, which lasted for maybe an hour. Saw my GP and he said "hmmmm....you have a heart murmur", and the rest is history. However thinking back, I can recall episodes of fast heart rate and general unease, which I always assumed was down to too much caffeine as I drink lotsa coffee.

One unusual thing I had was "De Musset's Sign", see http://en.wikipedia.org/wiki/De_Musset's_sign

This makes your head nod in synch with your heatbeat. I never noticed it, but the cardio saw it a mile away and knew I'd need an AV swap even before the Echo.

Ade

Ah, I'd forgotten about that. I had the head bob for several years as my regurgitation worsened. I'd notice it if I stood still in front of a mirror, sitting still in a chair reading and I had a strong pulse in my ears that I'd feel against my pillow at night. The other sign was my BP. The Systolic pressure was slowly climbing and the diastolic pressure was slowly dropping such that in about a 5 year period, my average BP readings went from 115/65 to 132/48.