Measurements vs Symptoms

[mtmom]

I went back to the cardio on June 7th. He is very concerned about my fatigue, dizziness and SOB. I go back in 8 weeks (unless I move it up) and he is going to do another echo and most likely go ahead with the heart cath. and get things rolling. I think he would have started things now but when he asked me if I was emotionally prepared and I told him, no, he decided to wait a little! My question. He says that symptoms are more important when deciding on surgery than numbers. What is everyone's thought on that statement. I have read on the forum how some cardiologists seem to ignore symptoms and go only by the measurements. It seems there should be a happy medium here where things could be put off if the measurements are not that bad. He also said that he sees more symptoms with a BAV then just with aortic stenosis in a normal aortic valve.

My symptoms now: lots of dizziness...when leaning over, especially when getting off the floor or standing up too fast. SOB on exertion-going up stairs and hills and leg pain at times. A little more very mild chest pain at times than I had a few months ago. Get tied pretty quickly but.... I do feel that I am still very functional.

Thanks for any input.

 

[Julian]

The idea is to have surgery before symptoms become obvious. There is a point where permanent damage can be likely. I waited a little too long and my recovery has been slower than I expected. Your symptoms seem to be obvious. Unless your expecting a miracle get the surgery over with.

 

[Dgreenbee]

Yes, I agree if you are symptomatic, it is time. The idea is to watch the measurements to keep track of a-symptomatic changes that might indicate when it is time, but if you have become dizzy and short of breath and fatigued you do not want to let your heart become too damaged.
Do not be afraid. Frankly, I have had dental work that was more unpleasant than OHS. It truly has become a safe and routine proceedure.

 

[epstns]

If I had waited for obvious symptoms, I might have become a statistic. Not sure which valve condition you have, but I had aortic stenosis. My condition was watched for about 10 years. During that time span, I had no shortness of breath, no fainting, no chest pain -- but my measurements continued to deteriorate. I never did show symptoms - I was still going to the gym 5 days a week, doing more than most guys my age could do. . .
If we had gone purely by symptoms, I would have waited too long. If we had gone purely by measurements, I would have had surgery several years sooner than I did, and might not have had the choices I did in valve selection. There are lots of things to consider, but if you are having any of the "cardinal" symptoms of fainting, shortness of breath or chest pain, I would rather have the surgery sooner than wait and hope things didn't go bad very quickly and take away my choices of treatment.

 

[DanielB]

For me, I was asymtomatic for the first year after diagnosis, then I started getting symptoms like yours. I didn't feel terrible, but I knew that things were not right as well. I was told by my cardio that he could treat the symtoms and see as things progressed, but that I was still solidly on track for the surgery. Playing chicken with damaging my heart is how I looked at it, so I went ahead and moved toward the surgery even though my 'numbers' were sill okay (moderate to severe Aoritc regugitation, etc). By moving ahead when I did, I was able to do as Steve said above, make my choice of valves as well as plan the surgery months in advance when it best suited my personal schedule and needs and those of the people around me. Still, I think it can be one of the toughest choices one can make, but all I can say is, listen to your body and know that these surgeries are very common and the medical profession is very good at doing them sucessfully.

 

[AgilityDog]

For my second surgery, I had just barely noticed symptoms a week prior to regular caridio visit. He looked at my echo, and said "it's time." I didn't even have to mention my symptoms until after he'd said that!
So yes, symptoms are very important!
I'd go a head and get scheduled. 8 weeks is a LONG time. And IMHO,you are NEVER emotionally ready for someone to crack open your chest! That's what xanax is for!

 

[tom in MO]

I thought I was pretty much asymptomatic before my surgery. I had a few symptoms, but few and far between. After the replacement, my surgeon said my old valve was pretty "torn up".

Now that I've had the new valve for 4 months, one day last week, I realized I had just walked up Hospital Hill (the big one in my neighborhood) with less difficulty when I was "asymptomatic". I wasn't as winded or as tired as before. Before surgery, I was just not self-aware enough to know how sick I was. It crept up on me.

My surgeon's nurse told me in the first visit that I may think I am asymptomatic, but I probably had symptoms but didn't realize it. She told me to wait until a few months after the operation and I'd probably be better than before. She was right.

So, if it's time, take the plunge. Waiting is worse than recovery, because with recovery you get better every day but waiting you just get worse.

 

[chaconne]

I waited a year after finding out I had bad measurements. I had some symptoms but am not entirely sure it was heart related. My younger brother has some alarming measurements (severe regurg. on a BAV) but no symptoms, so his Mayo Clinic cardio is letting him wait for years possibly.

 

[GrtDane]

Hi there. I have aortic stenosis and am getting an angiogram next Tuesday. I have the exact same symptoms as you. My heart lately is sore, is how I can best describe it. It is sore, with occasional sharp pains, but not painful enough to make me call 911. Makes me just uncomfortable enough to be really worried. I want to sleep all the time, and power out on very short walks. I hope they schedule the AVR right after the angiogram. I still haven't met my cardiologist, but apparently he is doing the angiogram. My question is, what is causing these symptoms? Does anyone know the physiology behind the low level pain, exhaustion, and SOB? Just wondering because I also did a sleep test with an oximeter. I think my oxygen levels were good, but I don't get the results till tomorrow. Also, I am on metroponal beta block, 25 mg because of Heart Rate of 120 resting. I am only 42, btw. Good luck!

 

[mtmom]

GrtDane: I have BAV with stenosis. Thanks to all for the comments. I needed to hear all this. This was good for me. The time is near and I need to get on the wagon and get this behind me. I just might need some additional shoving later!

 

[JeffM]

I agree with the previous comments. When symptoms surface, it's time. I had severe regurgitation and ventricular hypertrophy for a few years due to a BAV, but my cardiologist didn't refer me to a surgeon until I developed A-fib, which was my only symptom. My surgeon, when he saw me said I arguably could have had surgery 2 years earlier, but I think he was being a bit alarmist. The point though is once you have symptoms, your heart goes downhill very fast and you are at high and increasing risk for a sudden and fatal heart attack. Nothing to mess with. Soooo many of us who have are doing spectacularly and will tell you very encouraging stories of our personal experiences with getting this initially scary thing taken care of. But do it.

 

[Bill B]

Numbers vs. symptoms....It is juggling act. You need to attend to both. BUT I don't think there is a "happy medium" where you can put things off if one of the two are OK. If either are bad, you need to respond. I had no discernible symptoms but evil things were going on inside my heart. I had a valve area of 0.7 cm^2, peak gradient across the valve of 70, average of 42 (all very bad) but my ejection fraction was still 55-60% and my left ventricle was only moderately enlarged and thickened. So, I was well compensated. Perhaps my track and marathon running days paid dividends even 30 years later. Regardless, my valve was a total mess and the surgeon who recommended surgery within 5 months despite my lack of symptoms, said I just made it in time after seeing my valve and the condition of my aorta at surgery which I had done only 3 months later. Your case is the opposite, wherein your symptoms exceed what's expected. The only question is are the symptoms from your valve or do you have some other contributing factors (e.g., coronary artery disease)? The cath will help define that and guide the surgery.

 

[epstns]

Bill B - Very true. . . many of us who were even casual athletes and had aortic stenosis were able to compensate for years before surgery became necessary. In a major way, our fitness levels help us to delay surgery, if we desire. I did so to be able to have my surgery at an age when a tissue valve made good sense. Had I gone earlier, I would have likely opted for mechanical.

I guess the flip-side of that situation is that we who are/were athletically active prior to surgery complicate the diagnosis and planning for our cardio's, as most of them are not used to seeing patients who are highly fit. I fired my first cardio because he wanted to treat my stenosis as if I was 82 years old, when I was only 52 at the time. I searched and found a great cardio who specialized in valve disorders among young to middle-aged patients, and have stayed with his practice group since.

For me, the moral of the story is "Don't act old unless you want to be."

 

[Rachel]

I too was pretty much asymptomatic, like many who have posted here. I think because I was very active and in shape, any symptoms that I did have did not slow me down.
In the end, I went with the numbers. For me, it felt like playing with fire to wait.

Rachel

 

[Mentu]

MT, your symptoms will only get worse with time. Also, with time, the damage to your heart will increase and make recovery much longer. When you think about this, remember that it is the disease that is the problem not surgery. Surgery is your way to escape what is otherwise a terminal condition. Time is not on your side.

The comfort that so many of us have to share with you is that recovery will likely be much less of a problem than you can imagine it to be. With your recovery comes living a normal life again with a future; it can't get much better than that. So many people have problems that cannot be fixed but we are fortunate to have a condition that can. My experience is that Cardiologists do not recommend surgery unless they are certain it is time. Your time has come.

Larry

 

[VegasBAV]

I'm not a doctor. You are having symptoms - fatigue, chest pain, dizziness, and shortness of breath. You are in heart failure. It's only going to get worse from here. You need surgery.

 

[carly011]

Numbers arent always right on the echo!!! I have had severe symptoms for awhile, SOB, chest pain, dizziness, fatigue ect. The whole deal. My echo's showed moderate stenosis, mild regurgitation, mild enlargement of my aorta and my BAV. So my cardiologist kept telling me i was fine!! Switched cardiologists, he decided to do a CATH. Turns out both my regurgitation and stenosis were severe.

So its a good thing is doing a Cath for you!!! Better safe then sorry! The cath will be able to show what is going on much better then an echo

 

[Bryan B]

GrtDane: I have BAV with stenosis. Thanks to all for the comments. I needed to hear all this. This was good for me. The time is near and I need to get on the wagon and get this behind me. I just might need some additional shoving later!

I live close enough to do it too mtmom...don't make me come up there. :biggrin2:

 

[mtmom]

Ha,Bryan B!!! Where I live it wouldn't take much of a shove for a pretty long roll!! I have appreciated all the responses and am going to call this week and speed things up a little.