HUGE Mistake- Big Turn of Events

[Arlyss]

Accurate Diagnostic Testing

Accurate Diagnostic Testing

Accurate diagnostic testing and accurate interpretation of the results are always number one. It is the "A" in the "ABC's of Aortic Disease" mentioned in the link below. This thread is an example of how incredibly important diagnostic testing is.

http://www.bicuspidfoundation.com/Patients_and_Families.html

Generally, when my husband is seen by anyone, the actual test images are reviewed by that physician personally. The images are shown and explained during the consult.There are some nuances only recognized by expert eyes and that is what we want. In both of my husband's last two surgeries, there were no surprises because there had been thorough diagnostics ahead of time. I am never impressed by the statement that they have to see when they get in there - there may be a little of that, but they should come very close when good diagnostics are done ahead of time.

Test images belong to the patient, and can be obtained simply by requesting them. So there is no problem providing them to any physician one wishes to see.

Best wishes,
Arlyss

 

[Arlyss]

A Little More About Diagnostic Testing

A Little More About Diagnostic Testing

Debb,

After reading this thread again I just wanted to caution you and everyone about measurements of the "aortic root". The term aortic root is not consistently used properly by doctors, so its use on a report can be confusing. Also, one has no idea if the measurement is correct or not. I know too many examples of mistakes in this area - where people with BAV had transthoracic echoes for years, and their aorta was never properly evaluated - including someone who is a physician himself. Aneurysms have balooned up to life threatening sizes while people were having yearly echoes. Bicuspids need their ascending aorta evaluated initially (really their whole aorta, but the ascending is at greatest risk) and then monitored going forward as long as they live.

Rachel posted a very important link above. Dr. Eric Isselbacher spoke to cardiac surgeons from all over the world in Philadelphia in April and this is his presentation. Dr. Isselbacher is a Harvard-trained cardiologist at Mass General. You will hear him telling surgeons how to measure the aorta, and to do it themself and not rely on reports. There are many important things said, but one of them is that internists and most cardiologists do not know about the association between BAV and aneurysms of the ascending aorta. I could not get Rachel's link above to work, so I am listing it again here.
http://www.conferencearchives.com/aats2006/sessions/1500.PGAC.10/session.html

In addition, when a BAV is found, there should be suspicion raised about other areas of the body, especially those most vital to life, including the brain. It is so simple to have a "top down" MRI or CT of the brain and then the chest. Just in case one should happen to be one of those who has some abnormality in their brain vessels also. But it takes expert eyes to read those tests!


Best wishes,
Arlyss

 

[charly]

Debb,

After reading this thread again I just wanted to caution you and everyone about measurements of the "aortic root". The term aortic root is not consistently used properly by doctors, so its use on a report can be confusing. Also, one has no idea if the measurement is correct or not. I know too many examples of mistakes in this area - where people with BAV had transthoracic echoes for years, and their aorta was never properly evaluated - including someone who is a physician himself. Aneurysms have balooned up to life threatening sizes while people were having yearly echoes. Bicuspids need their ascending aorta evaluated initially (really their whole aorta, but the ascending is at greatest risk) and then monitored going forward as long as they live.

Rachel posted a very important link above. Dr. Eric Isselbacher spoke to cardiac surgeons from all over the world in Philadelphia in April and this is his presentation. Dr. Isselbacher is a Harvard-trained cardiologist at Mass General. You will hear him telling surgeons how to measure the aorta, and to do it themself and not rely on reports. There are many important things said, but one of them is that internists and most cardiologists do not know about the association between BAV and aneurysms of the ascending aorta. I could not get Rachel's link above to work, so I am listing it again here.
http://www.conferencearchives.com/aats2006/sessions/1500.PGAC.10/session.html

In addition, when a BAV is found, there should be suspicion raised about other areas of the body, especially those most vital to life, including the brain. It is so simple to have a "top down" MRI or CT of the brain and then the chest. Just in case one should happen to be one of those who has some abnormality in their brain vessels also. But it takes expert eyes to read those tests!


Best wishes,
Arlyss

Incredibly valuable information here... things I've not heard before regarding BAV.

By the way, I had the opposite situation from Debbie's before my last surgery - undeniable (though subtle) symptoms with a doctor reading my tests wrong, telling me that surgery was not in my near future.

 

[mtkayak]

Of course my suituation is different but I've always had a catherization to confirm that I needed the surgery. I don't think I would rely on just Echo readings. That sounds like the Cards are just a little to quick to schedule a surgey without doing other testing. That's scary. Glad your numbers are good though

 

[labguides]

Our daughter's cardio at UCLA is Dr. Michelle Hamilton. Ou daughter likes her. She has been great at understanding and communicating with our daughter, who was 26 when Dr. Laks did her mitral valve repair.

 

[charly]

Of course my suituation is different but I've always had a catherization to confirm that I needed the surgery. I don't think I would rely on just Echo readings. That sounds like the Cards are just a little to quick to schedule a surgey without doing other testing. That's scary. Glad your numbers are good though

My experience is that by time you get a catherization, you're as good as scheduled for surgery.

 

[ALCapshaw2]

My cardio used a TEE to get a 'better look'. When that showed it was time for surgery, he ordered a catheterization as a backup check on the valve AND to check my Coronary Arteries for any (new) blockages.

'AL Capshaw'

 

[mtkayak]

Yes, by the time you have the cath done, it's pretty much a foregone conclusion that surgery is needed. Within 5 minutes of listening to my heart, my Card said "Yep, looks like it's time for surgery". My murmur was so loud that he determined it just by listening to me. Of course, he did the echo (2 readings) and a cath to confirm it. My first surgery they did all of the above plus a stress test.