How long, 5 years, 20years or never.

alpage · Jul 19, 2003

acceleration of symptoms and followup

acceleration of symptoms and followup

Phil,
My experience, like many others, was that the condition did not deteriorate at a constant rate but instead it accelerated in the final period before surgery.

I had an echo (and other tests) every six months for the first few years after my condition was definitively diagnosed. After a few years the cardiologist saw that the condition was progressing very slowly and I went to yearly exams. I exercised regularly up to the last few years before surgery. Then, like quite a few other people have mentioned, the fatigue and loss of exercise tolerance developed and started accelerating.

Finally, in the fall of 2001 I was feeling tired all the time. I was capable of exercising, but it left me tired out for the rest of the day. At that time my valve was bad enough that surgery was scheduled for June 2002, but the condition got much worse around the New Year. I actually had angina just walking in the cold air. This type of angina is due to the hypertrophy and high pressure from inside the heart, making it harder for the blood to enter from the coronary arteries, which are on the outside of the heart. As a result of these symptoms my surgery was advanced to February 2002.

Philjud · Jul 20, 2003

I'll be patient. I can still ride at a reasonable level and as long as I'm not overdoing it and can recover the next day I shall continue.
Did some research in pubmed and came up with some interesting statistics. 4 million people in the US have a bicuspid aortic valve. Rates for progression of stenosis from calcification (4th decade and on) was approx 18mm Hg per decade (pressure gradient across valve).
Well, looks like I won't be holding my breath but I'll still remain cautious. I'm coming to terms with the lifestyle changes I've had to make. Thanks to all for the support.

Phil

Arlyss · Jul 20, 2003

Regarding Your Bicuspid Valve

Regarding Your Bicuspid Valve

Hi Phil,

In case you did not come across this in your search of pub med, I wanted to share a paper from the American Heart Association journal Circulation. It gives a complete overview of bicuspid aortic disease, including possible affects on the aorta. I encourage you to share it with your doctors. It is also important to know the diameter of your aortic root and aorta, and whether or not there is any enlargement.
Here is the URL
http://circ.ahajournals.org/cgi/content/full/106/8/900?eaf

Best wishes,
Arlyss

mike anthony · Jul 23, 2003

Phil,

I see you live in the Seattle area and Joy mentioned Dr. Verrier. I've had 2 surgeries in the last year and had both done by Dr. Verrier. If you go to BestDoctors.com, you will find that Dr. Verrier is rated #1 in the Northwest and one of the best in the country. I would recommend him in a second and hope you can get him as your surgeon. He is the Chief of Staff of the cardio division at UWMC.
As others have said, I would recommend an echo every 6 months. I remember after my first surgery they told me I had mild aortic insufficiency and 3 months later it was severe and I had my second surgery, aortic valve replaced. My first surgery was an Ascending Aortic aneursssym.
Prior to my surgery I played basketball 4 times a week in a very competitive league. So, I knew my body quite well and when I started having problems it was very obvious to me.

Susan BAV · Aug 9, 2003

Hi Phil and Everyone - I'm in my early 40's, a female w/a bicuspid, which is a little more unusual ("moderate calcific aortic stenosis with 50-55 mm gradient, etc." as per my most recent echo). I have been on a long, progressively-exhausted slide down, which has accelerated within the last several months. It was amazing to me to find this site and read stories from so many that mirror what I've seen personally. But I didn't understand something you wrote, Phil: "Rates for progression of stenosis from calcification (4th decade and on) was approx. 18 mm Hg per decade (pressure gradient across valve)." Is that the aortic valve leaflet opening (mine is 18 mm)? My left ventricle EF read "2D" on the report; I have no idea what that means either. (Left ventricle EDD read "28" and ESD read "16." I don't know what any of that means.) But everything that I've researched says that my 50-55 mm gradient is "severe." I really don't want to slide too far down so that the rest of my heart is messed up too. (I have left ventricular hypertrophy w/ hyperdynamic systolic function and mitral regurgitation, etc. now too; I really don't know if that is especially bad or just par for the course - do any of you know?) And, are any of you hypertensive also? And do or did any of you have coaractations either? Thanks for any comments, ~Susan

Philjud · Aug 10, 2003

Hi Susan, I'm not an expert but I will try to clarify the meaning of "approx. 18 mm Hg per decade" for the rate of progression of stenosis. Stenosis means restriction and in the case of a deteriorating valve, it fails to open fully and becomes progressively worse over time. One method of accessing the stenosis is by measuring the pressure drop across the valve in mm of mercury (Hg). As a comparison, blood pressure eg. 120/70 is also measured in mm of Hg. From the article I was reading, which had done a study of a large number of bicuspid aortic valve patients, the average rate of progression was an additional pressure drop across the valve of 18mm of Hg per decade. In your particular case this could be equivalent to approx. 30 years of progression. I'm sorry but I do not know what the other readings are in your post. Perhaps someone else more familiar will post a response. I've also received some good advice from this forum so I'm sure someone will pitch in.
You may also want to talk with your cardiologist for him/her to explain what is the specific valve deterioration criteria for surgery.
Good luck.
Phil