Been told it's time for an AVR

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Jessie316

Active member
Joined
Jan 29, 2009
Messages
32
Location
Concord NH
I was told in December it's time for my AVR. I began my testing I had my TEE and on 2/2 I go for the results. The cardio who did it did not think I needed a AVR now, however I am symptomatic with shortness of breath when I climb stairs, talk for lengths of time, and at times just picking an item up with weight. Also for the past 3 months my ankles at times up to my knees have been swelling usually my left more than my right. It's a little frustrating to have symptims be told you have to have surgery need to start the testing and a cardio who doesn't know you tells you don't need surgery. Does any one have any insight??
 
The swelling especially tells me that you need the surgery done. And a better cardio perhaps. Never be afraid to obtain a second or third opinion when what you are being told just does not seem to make sense to you.
 
I was told in December it's time for my AVR. I began my testing I had my TEE and on 2/2 I go for the results. The cardio who did it did not think I needed a AVR now, however I am symptomatic with shortness of breath when I climb stairs, talk for lengths of time, and at times just picking an item up with weight. Also for the past 3 months my ankles at times up to my knees have been swelling usually my left more than my right. It's a little frustrating to have symptims be told you have to have surgery need to start the testing and a cardio who doesn't know you tells you don't need surgery. Does any one have any insight??

I would wait until after next week's appointment before getting too concerned about the cardio's current recommendation. The TEE is very accurate and once you receive the results from it you'll have more information on which to base your next move.
Please let us know how the appointment goes.:)
 
Welcome Jessie, I echo Mary when she says wait till next week, hang in there be patient and don't be afraid to ask questions, don't be shy, a lot of great people on here to help you.
 
Another echo of Mary from me, but I'm confused about who told you that you need an AVR and who will be giving you the results on 2/2? Whoever you see, if you don't need an AVR, you need to get them to tell you what's causing those symptoms--symptoms are important!
 
more information

more information

My cardiologist on my yearly appt informed me due to my echo results being 38% pressure and measurements being.08 around my aortic valve. That I needed surgery. My Tee was Jan 16 th and the Cardio (not mine) informed me when I woke up taht he did not understand why I was there that my Valve looked fine with only mod stenosis. My actual cardiologist told me I was in severe stenosis. The cardio that did my TEE also informed me that my aorta is slightly enlarged but " don't worry you are so young this is usually indicative of an aortic aneursym I wouldn't worry about thsi". This cardio who did the test does not know the history. A bicuspid aortic valve runs in my mother and a cousin of mine also my cousin also has an aortic aneurysm. Hope thsi helps for to get more information.:eek:
 
I was told in December it's time for my AVR. I began my testing I had my TEE and on 2/2 I go for the results. The cardio who did it did not think I needed a AVR now, however I am symptomatic with shortness of breath when I climb stairs, talk for lengths of time, and at times just picking an item up with weight. Also for the past 3 months my ankles at times up to my knees have been swelling usually my left more than my right. It's a little frustrating to have symptims be told you have to have surgery need to start the testing and a cardio who doesn't know you tells you don't need surgery. Does any one have any insight??

I have all these symptoms and having surgery on Feb. 23rd. I am not a doctor and I don't know how bad your symptoms are, but you should seek why these symptoms are happening to you if they can't tell you. I have sob, chest pains, fatigue, heart racing, and numbness in my legs and arms. My symptoms are so bad that my cardio and surgeon wanted to rule everything out before they go onto surgery. I would seek another doctor if you aren't happy with your care. I hope the best for you! good luck
 
My doctor crosses all the T's and dots all the i's. She is awesome. She didn't want me to go into surgery with something on top of my Aortic valve problems. Example; lung problems or head problems. Seek the same type of care as I got. You deserve that.
 
My cardiologist on my yearly appt informed me due to my echo results being 38% pressure and measurements being.08 around my aortic valve. That I needed surgery. My Tee was Jan 16 th and the Cardio (not mine) informed me when I woke up taht he did not understand why I was there that my Valve looked fine with only mod stenosis. My actual cardiologist told me I was in severe stenosis. The cardio that did my TEE also informed me that my aorta is slightly enlarged but " don't worry you are so young this is usually indicative of an aortic aneursym I wouldn't worry about thsi". This cardio who did the test does not know the history. A bicuspid aortic valve runs in my mother and a cousin of mine also my cousin also has an aortic aneurysm. Hope thsi helps for to get more information.:eek:

From your two posts, it appears to me that several things are going on here and that there may be some confusion about the actual results. If you do not have copies of your Echo and TEE Reports, I recommend that you obtain them from each provider.

Your symptoms of being SOB (short of breath) doing various activities are certainly indicative of heart issues. Leg swelling is often reduced by reducing your fluid retention with a diuretic (typically Lasix or it's generic Furosemide). Compression stockings also help. These are 'Stop Gap' measures and do NOT cure the cause of the swelling which is typically Heart related.

Ejection Fraction is the measurement that is expressed as a percentage and 38% is below normal. If that is what your Doctor was refering to as 38%, you should press him further for an explanation of the cause.

Aortic Stenosis is typically diagnosed when the effective valve area is reduced from normal. Many Cardiologists and Surgeons recommend Aortic Valve Replacement when that number is reduced to 0.8 cm sq. (0.08 cm sq would be virtually shut off and you probably would not even be able to walk around at that level in my NON-professional opinion)

There is a High Correlation of Aortic Aneurism with BiCuspid Aortic Valves. You may want to read more about this issue in the BiCuspid Aortic Valve and Connective Tissue Disorder Forum which contains a LOT of information on these conditions.

Based on your symptoms and my 'guess' as to what your numbers mean, it is probably time to start interviewing Surgeons. Surgery is the ONLY way to FIX these heart problems and Surgeons seem to have a better 'feel' for when to procede.

If you do have BAV and an Aortic Aneurism, you would be wise to find a surgeon with Extensive Experience doing Surgery of the Aorta (which is another level above 'mere Valve Replacement'). With the right kind of experienced surgeon, the risks of AVR and Aorta Repair are typically not much higher than for AVR alone.

Mass. General Hospital (MGH) and Brigham and Women's Hospital in Boston are both Highly Regarded Heart Hospitals and should have surgeons with the above mentioned skills.

Feel free to ask more questions as they arise.

'AL Capshaw'
 
Jessie, welcome to the group!
It sounds like you are tuned into your body and believe what you feel....good for you.
Let us know about your test results.
I also had the enlarged aorta which did not need repair.
 
Welcome, hope you can get things sorted out, good luck, let us know how you get on.
 
appointment results

appointment results

I went to My cardio on 2/2. Well according to him in Dec I needed surgery. Now that he has the results of the TEE He said I don't need surgery not for a long while. Before he said I was in severe stenosis and now he says I'm in moderate. When Ia sked him what about my symptoms he just shrugged his shoulders. Told me to double my lasix on bad days and see you in a year for an echo and follow up. The same thing happened to my mother including practacally falling on her face on a stress echo and "nice looking valve on a cardiac cath and then it took a second opinion for some one to say she needed surgery as well as almost 2 years time. Does anyone know any valve specialist for aortic stensosis and aortic insuffeciency with BAV's in NH or BOston area??? Please help I don't know some days if I will be able to work until someone takes my symptoms seriouslysay it's time for an AVR. I am at a loss now. Thank you everyone:rolleyes:
 
There is really nothing to add to the wealth of information already shared with you, other than to welcome you to this site! You will find much relief in speaking with so many who have already been there, done that.
Ask lot's of questions, share your feelings.
 
To my mind, Surgeons have a better feel for Valve Issues, especially timing of surgery so I would recommend that you start interviewing surgeons.

Call Brigham and Williams Hospital or Mass. General Hospital in Boston and ask how to arrange for an appointment with a skilled Aortic Valve Replacement Surgeon. Be sure to get copies of your Echocardiogram and Tee Reports *and* copies of the actual tape or CD or DVD for the surgeon(s) to review.

A good surgeon will take BOTH your 'numbers' and your symptoms into account.

'AL Capshaw'
 
I went to My cardio on 2/2. Well according to him in Dec I needed surgery. Now that he has the results of the TEE He said I don't need surgery not for a long while. Before he said I was in severe stenosis and now he says I'm in moderate. When Ia sked him what about my symptoms he just shrugged his shoulders. Told me to double my lasix on bad days and see you in a year for an echo and follow up. The same thing happened to my mother including practacally falling on her face on a stress echo and "nice looking valve on a cardiac cath and then it took a second opinion for some one to say she needed surgery as well as almost 2 years time. Does anyone know any valve specialist for aortic stensosis and aortic insuffeciency with BAV's in NH or BOston area??? Please help I don't know some days if I will be able to work until someone takes my symptoms seriouslysay it's time for an AVR. I am at a loss now. Thank you everyone:rolleyes:


Jessie,

I cannot recommend my surgeon Richard Shemin enough. I was so lucky that he was at UCLA at the time I needed my surgery. He, as I think, still operates in Boston. I can check with his office tomorrow, but meanwhile, you can try to call him also:

88 E Newton St
Boston, MA 02118
(617) 638-7350

Here is a link for an interview with him:
http://www.uclahealth.org/body.cfm?xyzpdqabc=0&id=122&action=detail&ref=394

Here is his CV:

http://www.uclahealth.org/body.cfm?xyzpdqabc=0&id=479&action=detail&ref=25109

Good luck.
 
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