Do I just go on waiting?

Lucky · Jun 8, 2013

I just wondered what anyone's thoughts were on this matter.

I had a cardio appt in February and was told my aortic root had gone from4.7cms to 4.9cms and I would be refered to the surgeon who replaced my aortic valve once an MRI scan confirmed the measurement.

The MRI scan showed the aortic root was 4.9cms but in fact has been that for the past 5 years with no change.

The cardio wrote a brief note to say he would see me again in Feb 2014.
As I live on a small Island I wrote back to him to ask that as my aortic valve was bicuspid, I have a connective disorder (as confirmed by a genetisist) and I would like the same surgeon to re-operate should I be concerned.
I received a very curt reply today saying that further surgery would be difficult and basically I should just sit and wait.

I feel confused now as he was totally gung-ho for surgery in Feb.

Any views gratefully received .

Adrienne

AZ Don · Jun 8, 2013

For someone that has/had a bicuspid aortic valve, the standard criteria for surgery to repair an aneurysm is 5.0 cm, possibly less depending on other factors. With a connective tissue disorder as well I think some Dr's would be more aggressive. That it hasn't changed in 5 years is good, but you are already at the surgical criteria - these tests really aren't accurate to 1mm as they are subject to interpretation. I suggest you get another opinion or contact the surgeon directly.

Heart Of The Sunrise · Jun 8, 2013

It is quite simple in my mind....4.9 cm measurement of your aortic root.....TIME FOR SURGERY! I WOULD NOT WAIT!!!!!

Lucky · Jun 10, 2013

Thanks for your thoughts guys.
NHS can be very good but never really a partnership with Doctors because in the end they call the shots.

ottagal · Jun 10, 2013

Lucky said:
Thanks for your thoughts guys.
NHS can be very good but never really a partnership with Doctors because in the end they call the shots.

Just another thought, Lucky. My understanding is that BSA (body surface area) may also play a role in timing of surgery. For example, a 4.9 cm aneurysm found in a small framed/shorter stature individual would be different than in a very large/tall individual (unless they had Marfan's etc.) Does your cardiologist know that you have been confirmed to have a connective tissue disorder? Do you think BSA is impacting the decision making?