Questions Galore!

[epstns]

Hi, hinsocal, and welcome to The Waiting Room -- our virtual room where many of us await our own turns at valve surgery. I'm in a similar situation to yours -- 60 years old, still in pretty good shape, jogging 4 miles/day, and all that. I also have a probable bicuspid aortic valve and aortic stenosis. My murmur didn't show up until about 5 years ago, and I am still pretty much asymptomatic. My cardio and I are watching things carefully (echo's every 6 months, now) and we figure that surgery may still be a year or two away. Absent symptoms, they watch all the statistics fromt the echo very carefully. Cardio says that if we went purely by the numbers, I would be a surgery candidate now, but with no symptoms and still grossly normal heart dimensions, etc., he really cannot yet recommend surgery.

So, welcome to The Waiting Room, and also welcome to the watchful waiting group. . .

 

[ALCapshaw2]

Welcome Hinsocal !

It sounds like you are preparing yourself well.

I am an advocate of the "Sooner is Better" Approach (for first and second surgeries). That said, it seems to *me* that you are still in the "Watch and Wait" category. I would recommend Echo's at least once a year, and every 6 months if any changes are noted.

Do you have copies of ALL of your Echocardiogram Reports? If not, I highly recommend obtaining them. To track mine, and make changes easier to spot, I put EVERY measurement of every type on a Spread Sheet with a Row dedicated to the Test Date. Doctors seem to act as if all they need to know is your LATEST Test Data. As an Engineer, I like to look for TRENDS and PROGRESSION.

To my (Engineering) Mind, Symptoms are a sign that Damage is being done SO, it is best to watch your test results closely and proceed to surgery when the Numbers say "it is time".

It is wise to interview Surgeons BEFORE you need them, especially if you are looking for a particular valve or specialized procedure such as the ROSS.

With a Bicuspid Valve (and the potential for connective tissue issues common to Bicuspids), I recommend consulting only with the Best of the Best ROSS Surgeons. (Do a Search for "Ross Procedure" or RP to find their names.)

Also check the Personal Info Profile for "StretchL" who went to NY for his Ross with Dr. Paul Stelzer of Beth Israel Hospital, NYC. http://ps4ross.com , and produced a Photo Album of his operation. His Pre-surgery Posts are Good Reading for anyone contemplating the RP.

The "Pumphead" syndrome has been studied in recent years. Two recommendations to minimize it's effects are to use the Best Filters to catch any particles that may be in your blood, and to lengthen the Body Warming Process (by only a few minutes) to prevent Gas Bubbles from forming in the blood which may cause 'mini-strokes' in the brain.

At 55, you are in the "Gray Area" between Tissue and Mechanical Valve recommendation. IF you can safely hold off a few years, the 'Improved' Carpentier-Edwards Bovine Pericardial Tissue Valve with anti-calcification treatment could well last the rest of your life (>20 years, hoping for 25+). When it comes to mechanical valves, I *believe* in the technical advancements offered by the On-X Valve. See www.onxvalves.com and www.heartvalvechoice.com

You may want to browse some more in the Valve Selection Forum (read the "Sticky" posts first, then look for discussions on valves of interest.

If you settle on a particular valve, it would be wise to look for Surgeons that have Experience with that valve or procedure. Note that most surgeons offer only a limited number of valves and procedures.

Good Hunting!

'AL Capshaw'

 

[Blnmakerr]

Your history mirrors mine almost exactly, except I am 64 years old. I was diagnosed with a BAV in my late twentys and was monitored for years. My cardiologist also told me that I would probably go to my grave with the BAV, but in June of this year I began to show signs of diminshed heart function. Echo in June revealed that my heart function (EF) had dropped from 70% to less than 40% and the BAV very quickly became severly senotic.

Long story short, In the following three months my health deteriorated dramatically. I then began my research and sought the best hospital and surgeon. After much research I chose The Cleveland Clinic and Dr. Lars Svensson. Sugery was done on Sept. 24th. (I returned to work in three wks) and I chose a Carpentier-Edwards Bovine Pericardial Aortic Valve. The decision to not go with a mechanical valve was due to my age and not wanting to be on any blood thinners. I have been told the Carpentier-Edwards valve should last at least twenty years (I am hoping for more)...

The bottom line is you MUST do your homework to chose the hospital, surgeon and type of valve. Once you have made the decisions, relax and prepare for the surgery. I know that sounds difficult (and it is) but you will be amazed at the inner strength you will gain just prior to the surgery. That new found inner strength will "get you to the other side of the mountain"...

Best of luck in your decisions and keep us informed...

 

[hinsocal]

Steve: "The Waiting Room." Perfect!

Al and Bln: I hope to live well beyond 75 or 80, so that brings up another difficult decision for anybody in this age group: Do you really want to risk having to have another big surgery...at 75 or 80?

Everybody else, including SoCal pals: Thanks.