Bicuspid Aortic Valve Stenosis just diagnosed in 52-year-old

[lopearredlady]

I have received valuable information from your communications on this site and I have a few questions. My aortic valve opening has been determined by both Echocardiogram and Transesophageal Echocardiogram to be 0.8 cm.
There was turbulent flow noted across the aortic valve; mild left ventricular hypertrophy;left ventricular ejection fraction of about 65%; bicuspid aortic valve with shaggy density; moderately severe aortic stenosis; mild mitral insufficinecy and trace tricuspid and aortic insufficiency. I have a stress echo
scheduled for this week. My cardiologist is having difficulty getting a handle on my symptoms. On certain days, I feel shortness of breath and slight inconsistent chest pain. The idea of "waiting for symptoms to get worse" is
not a positive one. However, my main concern is my valve opening. Isn't that something to be immediately concerned about?
Thanks for any suggestions--
Terry

 

[Ross]

I would certainly think so! If I were you, I'd be getting a second opinion very soon, like tomorrow. You should be scheduled to see a surgeon. We find that Cardiologists seem to want to wait for symptoms and Surgeons would rather get to it before damage sets in.

Others will be along to address this also, give it time. Weekends are sort of slow here.

Meanwhile, read around, enjoy and welcome to the forum!

 

[Karlynn]

Welcome! I'm glad you found us. Weekends are a bit slower than weekdays, so it may take a while for your questions to get answered.

Measurements are more important than symptoms in determining when you should operate, unless symptoms are so severe at more moderate measurements that life is terribly inhibited. (Like mine was.) Some people go in to surgery never having symptoms, but have a badly deteriorated valve. Or there are people who report to doctors that they don't have any symptoms, only to find out that when the bad valve is repaired or replaced, that they were having some but had just adjusted to them since they occured over a slow period of time. There are some doctors that like to see lots of symptoms before they send you to a surgeon. This is not an ideal situation if your tests are showing that you valve is in decline.

Also, just a helpful hint. You only need to post your question on one of the forums. It will get read by most members as we all tend to view all the forums.

 

[lopearredlady]

Appreciative

Appreciative

Karlynn,
Thank you so much for your information!
Terry

 

[fyrfytr]

Hey Terry,
Welcome to this Great Family!
I agree with Ross, you need to get a second opinion. My aortic valve opening was also O.8cm plus they also found a 6.0cm aortic aneurysm and my Cardiologist sent me right to see a surgeon.
Take Care

 

[lopearredlady]

No aneurysm

No aneurysm

Thanks for the welcome! The suspected aneurysm has been ruled out by a TEE test.
Terry

 

[lopearredlady]

Looking for quality Valve Replacement Surgeon in Austin, Texas

Looking for quality Valve Replacement Surgeon in Austin, Texas

Does anyone know of an experienced aortic valve replacement surgeon in Austin, Texas?

 

[Ross]

When it comes to surgeons, you pretty much have to do some shopping on your own. There are some great places in Texas for heart surgery, so my thought is, look at them and check out their staff. Find someone who does this daily and has many under their belt.

 

[tobagotwo]

Click here for an earlier thread on Stress Tests: http://www.valvereplacement.com/forums/showthread.php?t=8350&highlight=stress
From the American College of Cardiologists/American Heart Association Guidelines for the Management of Patients With Valvular Heart Disease, regarding the use of Stress Tests in valve patients:

"Exercise testing in adults with AS has been discouraged largely because of concerns about safety. Furthermore, when used to assess the presence or absence of CAD, the test has limited diagnostic accuracy. Presumably, this is due to the presence of an abnormal baseline ECG, LV hypertrophy, and limited coronary flow reserve. Certainly, exercise testing should not be performed in symptomatic patients."

The quote is from the American College of Cardiology Foundation (ACC) Site, http://www.acc.org/clinical/guidelines/valvular/jac5929fla16.htm#A4 "ACC/AHA Guidelines for the Management of Patients With Valvular Heart Disease" and is found in "4. Management of the Asymptomatic Patient," under "a. Initial Evaluation," third paragraph.

If I can find and read this as an enthusiastic non-medical professional, I think a cardiologist should be able to, even required to...

Patients have an absolute right to refuse tests. Doctors will find a more acceptable test if pressed to, or do without one, which he certainly could do in this case. If the stenosis is advanced enough (it is - .8cm²) to be even mildly symptomatic (you have SOB and angina), it's beyond the point of needing further clarification by a stress test, especially in light of both the risk to the patient and the lack of accuracy pointed out in the ACC/AHA quote.

Frequently, people who have gone through with this have come back with the answer that the results were "inconclusive." Not much payback for the risk. There have been several who have posted with bad or near-fatal experiences during the testing. The fact that someone would be there to try to revive you if you have a heart attack or go into dangerous arrythmias is hardly reassuring.

Based on the ACC/AHA guidelines and common sense, if it were me, I would turn down the stress test at this time and immediately seek a second opinion, perhaps with a thoracic surgeon. It would seem both pointless and potentially dangerous to do this nonrecommended stress test. "Certainly, exercise testing should not be performed in symptomatic patients."

Stress tests can have their place in heart problem diagnosis, but it's not in aortic stenosis, and probably not in basic, uncomplicated valve issues in general.

 

[Barbara Stewart]

Surgeon in Texas

Surgeon in Texas

Hi Terri,
You definitely have come to the right place. I didn't find this website until after my first, unsuccessful surgery was done.

For my second surgery I went to the Texas Heart Center iN Houston. The surgery went so smoothly and I was extremely impressed with the hospital in general. It was clean, the staff was professional. I was awakened one morning by a group of med students doing rounds with Denton Coolie, whose name is on the building. Houston is just a few hours from Austin. My surgeon was Bud Frazier, although I don't think they call him that there. My best friends know him and that's what they call him. I'm sure any of the surgeons they have on staff there are excellent.

A teaching hospital is the best environment because they are up on the newest research and do tons of valve jobs as well as by-passes there.

Good luck. Let me know what you choose to do.

Barbara

 

[Phyllis]

Stress tests can have their place in heart problem diagnosis, but it's not in aortic stenosis, and probably not in basic, uncomplicated valve issues in general.
__________________

There have been threads about this before and I agree with Bob. After Dick had his first and only symptom (fainting while playing tennis) he didn't want to believe it was really time for valve replacement and asked the two cardiologists that we went to if they would do a stress test- both adamantly refused!

 

[lopearredlady]

Amazed

Amazed

Wow! Thanks to all of you for sharing your stories and information with those of us new to this world. I will take all of your knowledge, ideas, and advice into account and make some decisions as soon as possible. Unfortunately, as many of you, I am sure, I have a fairly stress-filled job to attend to at the same time, but health comes first.
I will keep you posted,
Terry

 

[Marguerite53]

Hi Terry. I am also 52 and just had my Aortic Valve replaced almost 5 weeks ago. I knew about my bicuspid valve since I was in my 20's, had echoes done every 5 years or so, and 3 years ago, it was symptoms which brought me in early to the cardio to have a look. My valve opening went from a 1.0 to a .4 within 3 years time. The final echo had reported my opening at .53, but when I had an angiogram done, and my surgeon accounted for some other measurements, he said my valve was at a .4 and symptomatic or not, it was definitely time to operate.

Cardiologists can be conservative. Surgeons, however, can be knife happy. So. It is a dance we have to dance as we try to make the best decision for ourselves. You MUST be proactive. This is important for your success.

What I did was to find a really good (new)cardiiologist who was connected to my choice of hospitals in town (we have state of the art facilities here and I had no wish to travel) . She would tell me I had plenty of time (this at .9) as my symptoms weren't that severe. She would say come back in a year, I would always manage to get in to see her in 6-8 months. I finally asked her exactly when she generally called in a surgeon. She said, no matter what, when you hit .7. This last December, I went in 4 months ahead of her schedule for an echo (I just wanted to check things before the holidays) and low and behold, I had taken a real downward trend. She then told me I could wait until spring to consult a surgeon.....I went mid January to her first recommended surgeon. He needed my angiogram results......I hadn't had the angiogram yet. He said there was no hurry, but he wouldn't wait until summer. So, we started rolling on things in March and then mid-April I had my surgery.

I never had a TEE (well, I'm sure they did one during surgery) and I had one nuclear stress test which was somewhat frightening to me (the heart pounding and windedness). I switched cardios after that (not because of the stress test, but because of their comparative stature in the medical community) and when I started reporting chest pressure, my new cardio wanted to do another stress test. I just said no. We found out that those symptoms were coming from the wrong BP meds, anyway. They do have reasons for wanting to do the stress tests. You need to ask specifically what their reasons are.

I don't know if I am helping you here. I just want to impress upon you that YES, you are definitley in the pay attention zone!! It is a good time to start surgeon shopping. Please keep us posted on your progress.

Marguerite

 

[lcwhitney]

try the Texas heart inst. in Houston. Dr. Joseph Coselli is there he did both of my surgeries and is excellent and was theonly surgeon in the country who could repair my pulmonary artery anuerysm.

Lettitia

 

[lopearredlady]

Sharing Excellence

Sharing Excellence

Thank you to those who have shared experience with excellent surgeons in Houston and Dallas.
I really appreciate it. I am still also investigating the same in Austin, as I have family there.
You all are great support!
Terry