Looking for the BEST surgeon & hospital for Thoracic Aortic Aneurysm & Valve Replacement Surgery - Jax, FL

[TRMM]

As a child (in the 70's), my mother was told that I had MVP.  Up until 6-8 months ago, now at age 35, I am told that I in fact, do not have MVP, but that I do have Mild to Moderate Aortic Stenosis (unicuspid valve) accompanied by a Thoracic Aortic Aneurysm, measuring 4.5.  I am being seen by a cardiologist at the Mayo Clinic, Jax, FL and have also had a consult with a Cardiothoracic Surgeon, for my own peace of mind.  I have been told by both doctors that now is not the time for surgery, as "the risks of surgery outweigh the risks of waiting" for now.  I feel like they are watching me closely - I have had an Echo and 2 MRIs (6 months apart) to establish some history and to determine if there has been any growth.  The 2nd MRI showed no increase.  I have low BP, but slightly elevated cholesterol (which I am working on).  I am scheduled to go back in another 6 months for another MRI, and at that time, it will be determined if I need to be seen again in 6 mo, or annually.

My question is, am I at the right hospital?  Seeing the right doctor?  The right surgeon?  Who is the best?  How do I know?  How do I research the surgeon - and his particular success rate in performing this surgery?

I don't know anyone personally who has gone through this.  I don't know who to ask.  Please help guide me.  ANy suggestion on who to see and where would be wonderful.

Thank you for reading,

TRMM

[TRMM]

Dr. Agnew is the surgeon that I saw as well and had the same advice - that he's the best.  We have a friend who is an anesthesiologist at Mayo Jax and works with Dr. Agnew in heart surgeries - he said that of all the heart surgeons he knows and has worked with, only Dr. Agnew would be the one to operate his wife.  That says a lot to me.  

Best of luck to you as well.  I'd love to hear about your dad and how he does!  I will say a prayer for him . . .

TRMM

[VLPH]

We saw Dr. Agnew at the Mayo Clinic. I really liked him and he answered all my questions. A friend of a friend works with him at the Mayo Clinic and said that "He is GREAT."   Said if her family member needed heart surgery that Dr. Agnew would do it.
So on Monday I will be making the surgical appointment for my father's open heart surgery at Mayo.
I wish you the best with your heart condition and possible surgery. It is really scary but there are alot of advances in surgery now.  Good luck
VLPH

[Orlin]

You are not alone.  I also have the same condition you have and was under the impression that either the Mayo Clinic or Shands were the best options.  If you find out otherwise, please let me know.

I am very concern about going through this open-heart surgery, too.  Beyond maintaining my blood pressure low and periodic screenings with CTs, MRIs and TEEs my doctor tells me there's not much else I can do.  I'm also looking into other alternative treatments, for example, taking large doses of CoQ-10 and L-Arginine (a vasodilator) per a book I read by Dr. Stephen Sinatra (a cardiologist in Connecticut).  I will do whatever it takes to avoid something so invasive as open heart surgery.  

If you learn anything new, please share your thoughts.  Thanks.

[TRMM]

I have seen a cardiologist that works at St. Vincents, but have received the most information about my situation thru Mayo, Jax.  Who was the cardiologist that you saw?  I have a cardiologist there and have seen a Mayo Surgeon.

[VLPH]

I am also looking for the "right" surgeon and hospital for my 80 year old father who needs the mitral and aortic valve in his heart replaced. He was hospitilized at St Vincents hospital in Jacksonville and we spoke to a surgeon there. Today I took him to the Mayo Clinic for a 2nd opinion. I liked the doctor there but am trying to get more information. Has anyone had open heart surgery at the Mayo Clinic in Jacksonville, Florida?