Vickie:
Thanks for commenting on my guestbook. I don't know if it's included in your insurance, but there's a place in Ft. Lauderdale who does robotics. I wish I could remember their name. It's something like the Heart Place, but then I may be remembering totally wrong.
If you're going all the way to Tampa, why not Orlando? I can't exactcly remember where Port Charlotte is. Is it close to Tampa? If so, it's a whole lot easier on your family to go close to home.
There's a very famous surgeon in Orlando who is listed on this web site. His name is Kevin Accola. I didn't use him since I preferred a thoracic surgeon to a heart surgeon. I already had problems with having a huge tumor off my kidney many years ago, and my cardiologist likes the surgeon I used better than Dr. Accola. No special reason except that he gets along with Dr. Nayer Khouzam better personally, and I loved Dr. Khouzam. He is so cheerful, and the nurses at the hospital adore him as well. But Dr. Accola is so famous he has ads in U.S. News and World Report every month and he's been featured on TV.
One thing to be aware of: A lot of people talk about the robotic surgery, but the research shows that it's most successful for the mitral valve on older men with not too much breast tissue, and so far I haven't seen ANY women get that type of surgery for aortic stenosis. Depending upon the structure of your chest, there may be some docctors who do a smaller incision, but even if you flew to Cleveland Clinic there's no guarantee that they wouldn't do a full sternotomy with the aortic valve anyway. See Fran Zilko's story on that.
Don't let that upset you too much, though. As Adam Pick told me before I had my surgery when I was looking for minimally invasive procedures, most people have the standard sternotomy and do very well. It's not a piece of cake, but neither is it torture.
The fear of the full sternotomy is overrated. It's just not that bad. And in many ways it's safer since the doctor can see what he's doing more easily whereas when they do those tiny incisions, they have more difficulty seeing what's going on.
Certainly my kidney surgery was worse and took longer to recover from, and I was 42 when that was done and am 71 now.
I am sure if your cardiologist is sending you to a surgeon in Tampa, he must be very good.
I'll be getting your posts and look forward to hearing how you're doing.
Terry C.

We must be twins from different mothers!!
I am 51, and recently had aortic valve replacement surgery on 12/28/10. I also had aortic aneurysm. go to my page to see my story!!

Jack White

Hello Vickie,
Looking for the best sergeon in the Good old U.S.A. look no further then the Cleveland Clinic, Dr. Gillinov. Back in August 2010 he saved my life.

Good luck,
Richard Volpe

Hi Vickie,

David Fanson here. Like the others below I ahve a bicuspid aortic valve too with severe stenosis. I'm 42. I go infor a CT scan next week to check on my aorta and root. I also have my cath on Friday. Like the others have said, there is a big family here and we all have our own story.

I am scheduled for my AVR in six weeks and can't wait to get back to running and working out. All the best to you and feel free to reach out if you have any questions or anxieties.

Dave

Hi Vickie,
Welcome. I found this journal to be extremely helpful. I had/have almost identical issues: congenital bicuspid valve, aortic aneurysm. I am 43 and had my aneurysm graft repair 10/18/10. They oppted to leave the valve alone since it was functioning well. Ironically, I have a good friend in Port Charlotte! It is a small world.
I had insurance "snafews" early on as well. Can you still ask your previous doctor for a referals? Be assertive with the insurance company. If you do not get the info from the person you are talking to, call back because you will most likely get someone else. Try to talk to the companies nurse or patient advocate. Mass General Hosp. was not an approved facility but I was able to appeal and they approved it.
Also, look up Terry C. journal. She lives in Florida (I know it is a big state) had her surgery 5 months? ago. She has done alot of research. I have found her wonderful to talk with.
This is a life affirming journey in so many ways!
Best wishes,
Amy Szalony

Hi Vickie

Welcome to HVJ. I lived in Bradenton for 10 years.. I had a very similar problem surgically coorrected last May at 49. Also a congenital bicuspid valve, monitored for years, which had to be replaced. During my last year of monitoring I developed an aortic anuerysm (5.5-6) which necessitated moving from monitoring to having the surgery.

I chose a tissue valve, as I wanted the freedom it afforded me with a more normal and active lifestyle. I had my aortic root and first three inches of my aorta artery replaced with dacron grafts during the repair.

Had researched all this for years and had chosen the Cleveland Clinic and Dr. Marc Gillnov for my surgery. They are the best of the best, and on everyone's insurance as CC is very cost effective and recognized as such by major insurance carriers.

I was not a candidate for Minimally invasive with everything that needed to be done, but my Median sternotomy healed quickly and I was back at work in six weeks. Read Adam's book, get your arms around this and create a positive outlook and you will do fine. It is not as bad as your mind will imagine and generally we all recover well, throw in a hiccup or two, but we get back to our lives quicker than you think,

Let me know if you have questions..

Best wishes,
Mark Long
Keller, TX

Hi Vickie, I have had both of the procedures you mentioned. The cardiac catheter is not a bad test, and you are in twilight for it. Mine took 25 minutes! and then you are up walking around in a couple of hours. The TEE....well, they give you the best drugs ever for this procedure. Probably the easiest of the tests. Don't worry! Neither are too bad! Isn't this online journal a great idea! I also have aortic stenosis, and am scheduled for surgery in two days. Patty