Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Heart Disease (Expert Forum)
Bi Cusp Aortic Valve Stenosis
This forum is for questions and support regarding heart issues such as: Angina, Angioplasty, Arrhythmia, Bypass Surgery, Cardiomyopathy, Coronary Artery Disease, Defibrillator, Heart Attack, Heart Disease, High Blood Pressure, Mitral Valve, Pacemaker, PAD, Stenosis, Stress Tests
Bi Cusp Aortic Valve Stenosis
by Marianne M, Apr 27, 2004 12:00AM
I am 39 years old and recently diagnosed with Bicuspid Aortic Valve Stenosis – In a year and a half’s time my AVA measurement went from 1.1 to .9 - The cardiologist states I have about 5 years before I will have to undergo the surgery to have the Aortic Valve replaced with a mechanical valve.
I am curious as to the benefit of waiting for 5 years - if my heart is comparable to someone in their 70's and there is no doubt that I need the surgery, why not perform it now while I am still young and in decent shape?
The articles that I’ve read state that 4% of people with this condition die instant death as the first symptom, these odds don’t sit well as I have not been advised of any medications that may help.
As for being symptomatic I occasionally get a cramping like sensation under the right side of my chest, I also have bone deterioration in my jaw (TMJ) and now have arthritis in those muscles is this possibly related to the valve issues?
When I was in college I was diagnosed with chronic fatigue syndrome and alopecia - do these have any relation to the Aortic Valve Stenosis?
I am often tired but have three children the first of which are 9 year old twins, when they were about 3 my general doctor detected for the first time a very loud murmur it was stated at that time that I had Mitral Valve Prolapse, which apparently mimics the AVS sound –could carrying the twins have progressed the condition. The last echo also shows the MVP but it is not major, I have taken antibiotics prior to dirty procedures since then.
Please advise as to what your opinion is on the matter.
Thank you,
Marianne
I am curious as to the benefit of waiting for 5 years - if my heart is comparable to someone in their 70's and there is no doubt that I need the surgery, why not perform it now while I am still young and in decent shape?
The articles that I’ve read state that 4% of people with this condition die instant death as the first symptom, these odds don’t sit well as I have not been advised of any medications that may help.
As for being symptomatic I occasionally get a cramping like sensation under the right side of my chest, I also have bone deterioration in my jaw (TMJ) and now have arthritis in those muscles is this possibly related to the valve issues?
When I was in college I was diagnosed with chronic fatigue syndrome and alopecia - do these have any relation to the Aortic Valve Stenosis?
I am often tired but have three children the first of which are 9 year old twins, when they were about 3 my general doctor detected for the first time a very loud murmur it was stated at that time that I had Mitral Valve Prolapse, which apparently mimics the AVS sound –could carrying the twins have progressed the condition. The last echo also shows the MVP but it is not major, I have taken antibiotics prior to dirty procedures since then.
Please advise as to what your opinion is on the matter.
Thank you,
Marianne
Doctor's Answer
by CCF-M.D.-RCJ, Apr 27, 2004 12:00AM
Marianne,
Thanks for the post.
Q:"why not perform it now while I am still young and in decent shape?"
Presumably, you should still be in "decent" shape at age 44! Two reasons to put off surgery: (1) the mechanical valves, if that is what you will need, can deteriorate with time, and (2), if (God forbid) something untoward were to happen to you during surgery, you would have missed out on 5 years time without disability.
Q:"The articles that I’ve read state that 4% of people with this condition die instant death as the first symptom"
This number is too high.
Q:"... arthritis in those muscles is this possibly related to the valve issues?"
There is no known association.
Q:"When I was in college I was diagnosed with chronic fatigue syndrome and alopecia - do these have any relation to the Aortic Valve Stenosis?"
There is no known association.
Q:"Please advise as to what your opinion is on the matter."
I would seek careful consultation with a well-respected cardiologist at a large medical center. Valve repair may be possible, and is the number one reason to go to a large center that has a surgeon skilled at this operation.
Hope that helps.
Thanks for the post.
Q:"why not perform it now while I am still young and in decent shape?"
Presumably, you should still be in "decent" shape at age 44! Two reasons to put off surgery: (1) the mechanical valves, if that is what you will need, can deteriorate with time, and (2), if (God forbid) something untoward were to happen to you during surgery, you would have missed out on 5 years time without disability.
Q:"The articles that I’ve read state that 4% of people with this condition die instant death as the first symptom"
This number is too high.
Q:"... arthritis in those muscles is this possibly related to the valve issues?"
There is no known association.
Q:"When I was in college I was diagnosed with chronic fatigue syndrome and alopecia - do these have any relation to the Aortic Valve Stenosis?"
There is no known association.
Q:"Please advise as to what your opinion is on the matter."
I would seek careful consultation with a well-respected cardiologist at a large medical center. Valve repair may be possible, and is the number one reason to go to a large center that has a surgeon skilled at this operation.
Hope that helps.
My husband had a highly calcified stenotic bicuspid aortic valve. His valve failed rather abruptly, and he went into full congestive heart failure prior to having his valve replaced. He later was found to have an ascending aortic aneurysm. Only then did we learn that there can be more to bicuspid aortic valve disease than just the valve. Fortunately for him, he had a very successful surgery to replace the aneurysm with a Dacron graft. Not everyone is so fortunate. It is important to know as much as possible about this.
I want to share some information with you. Here is a paper published in the AHA journal Circulation that gives a good overview of this condition. I encourage everyone who is bicuspid to discuss this with their doctors. http://circ.ahajournals.org/cgi/content/full/106/8/900?eaf
And here are some links with additional information
http://www.cedars-sinai.edu/aorta
http://www.cedars-sinai.edu/bicuspid
Best Wishes,
Avel
Many of the other doctors (or nurses, as the case may be on certain forums) give "general" advice and often do not speak directly to the question presented without some qualifier (i.e., without having seen you, I am unable to ...., or "this is for general educational purposes only..")
Here, both these doctors push the envelope and seem intent to actually providing useful, reliable, comprehensive, and pertinent information to the patient.
THIS forum is exactly what the Cleveland Clinic sought to accomplish (as evinced through the Mission Statement). Timely responses from cardiologists at one of the most reputable heart clinics in the world. Hats off to job well done.
I live in the Jacksonville, Fl area and have Shands, St. Vincent's, Flagler, and the Jacksonville Heart Center for resources. If anybody is familiar with any of these centers and knows of a specialist in this area like always any information is welcome.
Thanks,
Marianne