relatively new to the AVR process...

[Martin]

Hello,

I'm new to this forum and I'm sure I could benefit from all the combined experiences found here...

I do have Aortic Stenosis and will need valve replacement. I'm 61 years old. My valve area is currently measuring .7cm2, and my gradient (?) is 36. My cardiologist tells me that the gradient is the more critical metric, and that I won't require surgery until my gradient reaches 50 - 60, or I show symptoms (still symptom-free at this point). I'm scheduled for the next echo in 6 months.

I would like to get a second opinion (just so I don't wait too long), and I'm looking for recommendations for cardiologists / surgeons in the Seattle / Bremerton area.

Thanks for your support,

Martin

 

[MarkU]

Hi Martin, and welcome.

Lots of good folks here to help and support through common experiences.

I had my aortic valve replaced 9-1/2 years ago at age 47. Sorry I can't help with any docs in the Seattle/Bremerton area, but there's probably someone here who can.

Good luck,

Mark

 

[ALCapshaw2]

Many Surgeons use an Effective Aortic Valve Area of 0.8 sq cm or less as a 'trigger' for recommending Aortic Valve Replacement so I would recommend making your second opinion with a Surgeon. We have members in your area so hopefully they will make some recommendations of Surgeons.

You need to know that Aortic Stenonsis can progress rapidly and that it would be best to have a Surgeon lined up before you become critical. You don't want to be selecting a Surgeon from a gurney in an ER somewhere!

In my Non-Professional Opinion, Symptoms are a sign that Damage is being done to the Heart muscles and walls and that there is a point where that damage becomes irreversible, even with AVR. That is why many surgeons prefer to operate Sooner rather than Later, to improve the Surgical Outcome and Recovery.

'AL Capshaw'

 

[Maryka]

You might try to search this forum for people from your area who liked their heart surgeons. The only West Coast surgeons I know and would comfortable with are those at Stanford. I was evaluated by a Dr. Liang there and he was very insightful, being the first one to pick up that my aneurysm and other problems were caused by a bicuspid aortic valve. I believe the favorite surgeon at Stanford is Craig Miller. Good luck!

 

[skeptic49]

Welcome to VR.org Martin. Are you BAV by any chance? I would recommend getting an opinion directly from a surgeon at this point. Why not at least get set up with one in advance?

Best wishes,

Jim

 

[neil]

just wanted to say welcome to the forum martin,

 

[Jeanie]

Welcome to the forum, and I agree with the others in their advice. I am 58 and had AVR mid January. I love my new valve! It works ever so much better than the old one, and perhaps I notice that more because I had some severe symptoms prior to surgery. Ideally, you do not want to wait for severe symptoms, much better to get it done in a planned in advance way. Not to scare you, but just let you know, if a stenosed valve becomes worse, it sometimes goes downhill rapidly. Unlike heart attacks, if you have a barely functioning aortic valve, no amount of CPR or defibrillator help will shock you back to life if the valve area becomes too small, or leaflets become so stiff they cannot let blood through. You are very lucky not to have symptoms, but I'll bet you still will notice big improvement in your energy level after an AVR, after allowing the usual time for surgical recovery.

 

[dick0236]

Welcome to the forum. I also was diagnosed with Aortic Stenosis. I can't relate to your "numbers", but I agree that a second opinion by a surgeon would be in order. Your cardio must feel that you are borderline since he/she has ordered another echo in only six months. The important "key" to long term success is not to wait for damage to occur. Stick around....and good luck.

 

[Bina]

We are all somewhat different in our symptoms and timing, but at .8cm my AS and BAV were giving me tons of symptoms which I was trying to ignore. I had seen a surgeon, but when I requested a stress echo it didn't go very well and that cardiologist revoked my driving priviledges and I had surgery 2 months later.

 

[mainframe]

Hi Martin

I just went through looking for a surgeon in the Seattle area. I used two sources as having expert opinions. The first was a friend who of the family who is an anesthesiologist at Swedish routinely working with the heart surgeons. His recommendation at Swedish was Dr. Joesph Teply. I was told he did valve surgeries all the time and was also told he was experienced with aorta surgery (which I needed) as well. He said that he wasn't as knowledgeable about other surgeons outside of Swedish. The second opinion I got was from my nieces soon to be father in law who is a cardiologist in the Seattle area and was told that Dr. Gerald Aldea was his recommendation. I also ask about Dr. Edward Verrier (Chief, Division of Cardiothoracic who did my first surgery and other members joy and Johnny Stephens) and was told he does more teaching now and less surgery and that he recommended Aldea instead. We also chatted about Dr. Craig Miller (Stanford) who ended up doing the surgery.

My HMO only uses Virginia Mason or Overlake surgeons for in network providers and it was recommended that the percentages of outcomes was less favorable than at the UW. Either Swedish or the UW would have been out of network as was Stanford where I chose to have the surgery.

VR member James recently had surgery at Tacoma General with a surgeion who is involved in the On-X valve trials should that interest you Not sure of the surgeion but perhaps James will be along to add an opinion.

If it's a cardio your looking for my mom goes to Dr. Peter A. Demopulos who's rated one of the best in Seattle. She is very happy with him. My cardio is Dr. Resnick at Group Health but I think he might only be available to GH members. Both are good.

Best of luck with your decision and of course if you have any other question please ask.

 

[Marguerite53]

Hello and welcome to our wonderful community!

I had a very successful surgery 4 years ago just a bit down the I-5 from you, in Portland, OR. My cardio sent me to my surgeon when my valve shrunk to .7cm sq. (yeah.... right where you are!) That was in December '05. Then suddenly I had 2 other medical issues that needed dealing with, so rather than go right into surgery, all my doctors decided I could wait a few months after the other, lesser items got handled. So mid-April of '06 I had my surgery. When I was measured in surgery, my valve was .53 cm sq. Very very narrow!!! That is actually considered severe and almost critical. And that just in 4 months!! But, of course, somewhere in that 4 months, hubby and I just had to get out of the Northwest winter and spend a week in the Arizona sun! So even though my numbers said severe, I was fairly comfortable flying and vacationing. My energy level was very compromised, but we had just planned a nice retreat. Had I known that my valve was shrinking that fast I never would have waited. I was fine, but I was lucky.

Are you feeling lucky? Look, I think most of us here would agree that your wanting to see a surgeon, NOW, is a very good idea. You may not even know that you're having symptoms. You may have attributed some feelings of tiredness and aches to "old age". You may find that post surgery and post recovery, you will feel MUCH healthier!!

I can't offer you any surgeon's names, but I would think your cardio would!! Perhaps all you need to do is call your cardio and say that suddenly you just aren't feeling very secure about waiting 6 more months for another echo and that you would like a surgical consult -- who would your cardio recommend? My surgeon would not even meet with me until I had had an angiogram (heart cath). My cardio arranged for that. So rather than go to a new cardio, see what your current one has to offer. Just push them along a little. Don't be scared -- you get to sit in the driver's seat for this one. An AVR is "elective surgery"!!! Crazy, huh? Your insurance should allow you to consult as many surgeons as you like -- at least 2!!

So give your cardio a call on Monday. Maybe they have a system in their office where you can leave a detailed voice mail for your cardio's nurse or "Physician's Assistant" or PA. That way you can avoid making a time consuming appointment and your cardio will get the gist of what you are feeling and just give you a call back.

Please keep us posted. And please don't delay.

Best wishes.

Marguerite

 

[Sandi]

I was diagnosed in June 09, symptom free. Had another echo in March, symptom free and was told to seek out a surgeon. By April started symptoms and rapidly progressed. Having surgery June 8. My husband tells me now that he noticed symptoms earlier than I did because you tend to compensate for breathing issues and ignore them... I wish I could help you with a good surgeon but I am in Florida. I am having minimal invasive surgery for my AVR. Keep everyone posted. I have had such helpful responses to some of very important questions to me in this forum.

Good luck!
Sandi

 

[epstns]

Hi, Martin and welcome to The Waiting Room (the virtual room in which many of us await our own turns at valve surgery). I'm in a situation similar to yours. I'm 62 and have aortic stenosis. Mine was diagnosed about 8 or 9 years ago and has progressed to a similar status to yours. I, too, am currently free of any of the "cardinal" symptoms (SOB, syncope, angina) but have noticed decreased exercise tolerance for the past 10 years or so. To date, no surgical consult, although my cardio and I have agreed to discuss strategy at my next visit in 6 months. As others have said, it is probably best to have the choices of surgeon and hospital made before the onset of symptoms and the rush to the OR.

So far, I still jog 3 to 4 miles a day, 5 days a week -- albeit at a slower pace than a few years ago. My cardio and I use my running time per mile as one of the measuring points to determine progression of my stenosis. So far, all critical measurements are within norms, but we are watching more carefully as the years go by.

Again, welcome. Stay a while and ask all the questions you can think of. This is (IMHO) the best source for real-life information about valve surgery, and the folks here are great about sharing it.