Questions about symptoms and echo.

[Michael]

I?ve been a member for over a year now. And I unfortunately do not contribute but I am always lurking. Now I have a couple of questions.

I was diagnosed with Aortic Stenosis a little less than three years ago. And I have watched my Aortic Valve area shrink from 2.4 cm2 to 1.3 cm2.

Every time my semiannual echo approaches I get a little anxious and I start really pay attention to my symptoms: SOB, slight tightness in my chest, lightheadedness, etc. trying to decide if my symptoms have become worse or stayed the same. I feel that my symptoms are getting worse but I am unsure and I think it is because the echo is forefront in my mind.

Anyway my first question is for those who have had their valve replaced and had been in ?the waiting room? for a while. Did you know before that final echo where your cardiologist said it was time, that indeed it was time? In other words, did you feel that your symptoms had progressed to a point were you knew it was probably time for the valve replacement? And if so, how severe were your symptoms?

My second question has to do with my echo that was done this morning. First of all the tech that performed the echo (and she has done all my echos) is a bit tight lipped and not forthcoming with information. My cardiologist?s office is very good about faxing me the results of echo prior my appointment with the cardio. But this morning she asked me if she had done my neck in any of my prior echos. I said no and asked her what the purpose of doing the neck was. She simply said that she likes to do it periodically. She had me lie on my back and put a pillow under my shoulders and tilt my head back. My question is, what is she looking for when she puts the probe the suprasternal notch just below my adam?s apple?

 

[SusanC54]

Hi Michael,

I am still in the waiting room but have my surgery scheduled for April 25th. Last year my cardiologist had said that I would probably need surgery in 1, 2 or 3 years. I really don't have much in the way of symptoms, but I do have two valves involved so I'm looking at both MVR and AVR.

When I saw my cardiologist in January, I first visited with a nurse educator who looked at the echo results and she said that she was pretty sure it wasn't time because the numbers in the echo weren't at the threshold yet. A few minutes later, the cardiologist came in, looked at the same info., and got on the phone to the surgeon to have him come in for a consult. I think because of the fact that I have TWO valves that are close to the point, along with enlargement of my left ventricle, he decided that indeed it is time. The surgeon confirmed this and said if it was him, he'd make sure he had the surgery this spring. so.....after looking at the calendar, I picked April 25th. I have some shortness of breath climbing stairs, some fatigue but nothing that I would consider more than average for a slightly overweight 54 year old.

Years ago I had asked the cardiologist how I would know when it was time, and he said that I probably wouldn't know, but that the echo and other tests would be indicative. I too now think about my symptoms and I guess they really are there! I'm very interested to experience how I will feel in six months compared to how I feel now, which is actually pretty good. (When I tell people that I'm having OHS, they can't believe it, because they can't figure out anything wrong with me!)

Best of luck to you!

Susan

 

[aussigal]

I had the echo thingy shoved into that spot as did my 3 kids...thats where they put it to check your ascending aorta and it can show up clearer from that position than the normal breastbone area.
You may also have noticed they shoved it up "sorta" your solar-plexus same reason...to get another view from a different angle with less bones in the way...I had those manoeuvres with all my echoes.

hope this helps....I dont think it means it is getting worse all of a sudden...more-so that the tech is getting more thorough.

 

[Marguerite53]

Susan. April is certainly a busy month! I am 52 and have just gotten my date of April 18th. I am suddenly much more symptomatic?..I think, but still not as symptomatic as they think I should be.

Michael. Aussigal is right about the ascending aorta thing with the echo. The cardio must have asked for more thorough looking over, although my tech said that particular part of the test should always be done!

I have known about my BAV for about 25 years. I have no record of what my echo then stated; I had no symptoms, just a murmur. Come September 2003, I noticed that I was feeling very short of breath at the top of the stairs. Turns out I was at 1.0 cm sq. I then changed cardios (he was wonderful, but foreign and I couldn?t understand him well, plus I wanted to be connected to one of the city?s better hospitals), had subsequent echoes (mostly at my insistence that they be about every 6 months) and slowly spiraled down to my current .4 cm sq (guesstimated by heart cath).

Now that I am borderline ?critical?, or whatever, I must say that I genuinely am beginning to feel ill. I have no stamina. I am increasingly out of breath, but not gulping for air. I still walk 2 miles around a track several times a week, talking with my friend. But, we have slowed the pace down. If I had a full-time job (beyond mother and housewife) I would be beside myself with exhaustion. One other member put it so well?.it?s like you?re shopping in a large store and suddenly all you can think of is, ??is there a place to lie down here??

I know that it is very tough to read your own symptoms. It has been enormously frustrating for most of us!! I really started to think that I was slowing down at about .8. Just definitely was not the same person. Really balked at going up stairs, started avoiding things that I knew would make me tired. But everyone is different.

I wouldn?t worry about what you cannot change. It is what it is. The numbers and the symptoms are what they use to decide when to intervene. Without my numbers, my symptoms would not be enough to get me my surgery??and yet my valve is ?very tight? and ready to come out. Hope this helps you some.

Hang in there! Good luck and keep us informed!

Marguerite

 

[Vivian M.]

Hi Michael,

This is the first message I have placed on this board, and I registered just so I could reply to you since I identified with you so completely.

I was diagnosed with aortic valve stenosis in late 2002. It was discovered almost by accident when I changed my primary care physician who performed a cursory examination of me as a new patient. He heard a murmur and sent me for a few tests. An echo threw a red flag to the cardiology department, and I was called in and told that I needed AVR -- just like that! The echo showed the opening to be 0.6 which, I understand is quite tight. I had no idea prior to that time that there was a problem with my heart.

Since I could not identify any symptoms, and the echo showed the valve so tight, I was sent for cardiac catherization to confirm the echo. It did. The doctor who performed the cath told me to go home and keep on keepin' on until I had symptoms appear. I was somewhat active, hiking, walking, camping, etc., and figured as long as I could do that, I was OK.

In the meantime, I continued getting echos every 6 months to watch the progress. The opening remained stable, but in late 2004, I began experiencing extreme tiredness. After walking two miles in the a.m., for instance, I would need to lie down the balance of the day to try to gain strength back. There were days when I would go to bed tired, and wake up very tired too. The tiredness was much beyond any I ever experienced by working too hard, and I knew it was out of the ordinary.

The cardiologist had told me to advise him of any change, regardless of how small. When I began to experience this tiredness, I made an appointment in February, 2005. Before I could finish describing my symptom to him, he had pulled out a referral slip for surgery and began filling it out. I knew it was finally time, too.

So, I'm coming up on one year post-surgery, my surgery date was April 13, 2005. Now, looking back, I see that I did have symptoms that I was not willing or able to admit, and truly would not have been able to pinpoint as symptoms except that they were gone after the surgery. Several episodes of "dizziness" to the point of nearly passing out. Shallow breath and a "raspiness" to my voice which was gone after the surgery. A tingling, burning and throbbing sensation in the soles of my feet which also was gone after the surgery.

I hope this helps. God Bless.

 

[RandyL]

I think that if your echo is below 1.0 you need to have a cath done to confirm this. If they match up in my personal opinion is it is time to have the surgery.

Don't wait to you feel it, it might be to late. I had a friend that decided to ignore the test results and unfortunately he is no longer alive.

BTW I had my surgery when I was reading .8 I never figured out why I was tired and didn't have the energy to do some of the things I used to do, just thought I was getting older. Well now after the surgery I am never tired and have a hard time going to sleep at night. My energy level is like that of a 30 year old again.

 

[Marguerite53]

Michael, you've gotten some great answers. I hope they are helping you.

Vivian....Welcome to our community. I hope you will visit often and comment freely. Your comments about symptoms have actually helped me very much. I was always being told that if I went to bed tired and slept well I should not be tired in the morning; that if I was tired in the morning it was likely depression. I ignored those remarks. I am historically a radiant morning person and have absolutely not been for about 6 months. I cannot express my longing to return to that state of myself. Hearing others Rachel, Randy and so many others) remark on their rebirth is what keeps me defiantly optimistic!!

Marguerite

 

[Michael]

Thank you all for your responses. I think what I am hearing is that the symptoms creep up so slowly that is difficult to recognize that they have become worse. It is only when you have had the surgery that you realize how symptomatic you had been. I sometimes wish that my aortic valve would progress to the point where I did need surgery so I could get it over with. I?m used to being active (lots of hiking, biking, horseback riding, etc.). I have slowed down a lot but I haven?t let it deter me from doing the things I enjoy.

Susan - Two valves. Wow! Have you decided what kind of valves you are going to get? I curious to know if replacing two valves at once presents different issues in deciding what kind of valves you get.

Aussiegal - Thank you. Last summer when I had my echo, the echo showed that my aortic root had enlarged beyond to normal limits. So my cardiologist ordered a catscan which showed that the aorta was within the normal limits. So I am curious why she hadn?t done it before.

Margarite ? I know you have been ?in the waiting room? for a while. So I am guessing it is somewhat of a relief to be getting to the other side.

Vivian ? When my cardiologist first told me that surgery was not a question of ?if? but a question of ?when?, he said that most people feel so much better after they have the surgery. I guess you are proof of that. My mother had AVR about 15 years ago (she?s be 87 in June). After she had recovered from her surgery, she went shopping with my wife and sister-in-law and they had a tough time keeping up with them.