Confirming my diagnosis.....

[Mickey]

Confirming my diagnosis: How do I do this? I have been diagnosed with severe aortic stenosis, though I have no symptoms. I got 2 separate opinions, with EKG?s and echocardiograms, and both doctors recommend valve replacement. I am reluctant to rush into surgery because I have no symptoms. 1) What more can I do to confirm my diagnosis? 2) Is surgery my only option? Any advice would be appreciated. Thanks.

 

[sue943]

Welcome.

If two doctors have diagnosed the same thing and both recommend replacement then it is confirmed already. Even if you think you are not experiencing any symptoms the problem is still there. Delay can only make matters worse and probably cause permanent damage to your heart, or worse.

 

[Ross]

Welcome.

If two doctors have diagnosed the same thing and both recommend replacement then it is confirmed already. Even if you think you are not experiencing any symptoms the problem is still there. Delay can only make matters worse and probably cause permanent damage to your heart, or worse.

I fully concur. Before they'd do any surgery, they'd still give you a few more tests. Nontheless, if what they've seen already is indicative enough for both of them to agree on surgery, your valve must be in critical shape as it stands.

There is no other treatment option but surgery.

The human body is great at compensating for a faulty valve. While you feel fine, the fact is, you've probably had symptoms for a long time, but haven't realized it. When you'll really realize how bad it had become is when you have it replaced.

 

[Woodbutcher]

Hi Mickey,
I too had no symptoms before my surgery last year, it's a tough one to get yoour head around ? I was working 10+ hrs a day in construction and sailing, surfing etc ... I'd only gone to the doctor for a routine check up as I'd passed 40 and hadn't seen a doc for 20 odd years.. Next thing I knew was I had an Aortic valve of 0.5cm2 and maybe only months to live !? I felt fine though !?
It's only natural to question the severity of the diagnosis as it sounds crazy and scary too.
Looking back I'm only glad they did diagnose it.
Good luck.

 

[netmiff]

I agree with all of the above. I had known for a number of years that my valve was going to have to be replaced "some day", and was being followed up annually by a cardio, echos etc. I did not think I was symptomatic, put my SOB (shortness of breath) down to age (50-ish), weight (too much), inactivity and years of smoking. Once the valve was replaced, my non-symptoms vanished!

Before any final decision is made, the surgeon will want you to have at least a heartcath done. These are more accurate than echos, and provide the surgeon (and you) with a ton more information.

It is hard news to hear, that someone is going to knock you out, stop your heart beating, cut it up and then put it all back together. But these guys know what they are doing. One thought I clung to was that my regional heart cente did more of these in a week than my local hospital did tonsils and appendectomies in a year.

So, get thyself to a surgeon ASAP. The heart is a muscle nd will compensate for any inefficiencies in its functioning. I am still on beta-blockers and BP meds, almost two years after surgery, because my heart enlarged itself tring to force enough blood through my stenotic aorta to get enough oxygen to the rest of me. Trust us, the sooner you get it fixed, the better!

 

[Lisa in Katy]

I agree. It sounds like you've had confirmation. Now comes acceptance. I also had symptoms that I didn't realize were symptoms until after the surgery. You can wait until you feel terrible, but you're causing further damage to your heart, adding risks to the surgery itself, and lengthening your recovery. If surgery is inevitable, better early than late.

 

[ALCapshaw2]

Did you get copies of your EchoCardiograms?

If not, I highly recommend that you do so.
You will need to sign a Release of information form
(to yourself) and there may be a copying charge.

An Aortic Valve Area of 1.0 sq cm or less is usually considered to be a sign of Severe Aortic Stenosis.
Many Cardiologists and Surgeons use 0.8 sq cm
as their 'trigger' for recommending surgery.

FWIW, Symptoms are a Sign of Damage being done to the Heart. At some point, this damage can become PERMANENT and is NOT totally correctable by Surgery.

Bottom Line: It is best to get a Stenotic Valve Replaced BEFORE there is Permanent Damage to your Heart Muscles and Walls.

You will be pleased to know (I hope) that Valve Replacement Surgery has advanced to a Highly Refined Art with an Outstanding Rate of Success (98% on a National Basis, with a 1% risk of mortality and 1% risk of morbidity .... Even Less with the Most Experienced Surgeons). The Top Rated Valve Surgeons are typically found at Major Heart Hospitals and perform over 100 Valve Replacements/year. Experience Counts!

'AL Capshaw'

 

[Montrealer]

I had no symptoms till chasing a bus.......be careful.

 

[Montrealer]

It`s confirmed.....now comes the hard part of dealing with it...............I know it`s not easy but once my Wife and I sat down and discussed it .............it was time for the next step. You are lucky to have found this forum now. it`s a long row to hoe to be sure but I can`t begin to tell you what a difference in my life since I made that step of acceptance and moving on to the next. And no it won`t be easy but as you see we prevail.......

 

[epstns]

Hi, Kickey, and welcome to The Waiting Room -- the virtual room where many of us wait for our own turns at valve surgery.

I am in a situation somewhat similar to yours. I can only say somewhat, as your member profile doesn't say anything about your history. I am now 61 yrs old, and was originally diagnosed with aortic stenosis at approximately age 54. Mine was discovered through the evaluation of a murmur noted during a routine physical.

Like you, I know that valve replacement surgery is in my future. I do not know when, as we have been watching my echo's for a number of years and have noted only slight progression. I am diagnosed as a "severe" case, and have annual echo's. So far, I have no clinical symptoms, only some gradual reduction in exercise tolerance (I'm a logger, and I've slowed down).

The best thing to do is to read all you can about our condition and its surgical treatment (as there is no approved medical treatment). Visit this wonderful site often and ask all the questions you can think of. There is no better source of real information anywhere (well. that's my opinion), and the folks here treat each other like family.

Again, welcome, and feel free to spend some time with us.

 

[Mickey]

Thanks to all who replied. You provided me with much needed information and helped me to reach a decision, hopefully the right one. Yes, I do have the echocardiogram results, and yes, they indicate a problem.

 

[towerman]

Mickey I too was diagnosed with severe aortic stenosis and a bad bicuspid valve. All 4 doctors said to get it fixed, so I did. Dr. Bush at CC Florida said it was the same thing John Ritter had so its just a roll of the dice for when it happens. Anyway 4 weeks later I was playing golf.

 

[Mentu]

Hi, until recently, I too was in the same boat although now I have begun to display symptoms. My GP provided me with an article that address the issue of how do you know it's time for surgery. "Natural History of asymptomatic aortic stenosis in adults" by Doctors William Gaasch & Edgar Schick. The article essentially says that if the stenosis is severe and no symptoms are present that on any given day surgery may be more dangerous than living with the stenosis. The article also says that there are other factors that Doctors must consider. If you have not done so, I would suggesting asking both doctors very directly about the criteria upon which they based their recommendations.

 

[Ross]

Hi, until recently, I too was in the same boat although now I have begun to display symptoms. My GP provided me with an article that address the issue of how do you know it's time for surgery. "Natural History of asymptomatic aortic stenosis in adults" by Doctors William Gaasch & Edgar Schick. The article essentially says that if the stenosis is severe and no symptoms are present that on any given day surgery may be more dangerous than living with the stenosis. The article also says that there are other factors that Doctors must consider. If you have not done so, I would suggesting asking both doctors very directly about the criteria upon which they based their recommendations.

I do not agree. A several stenosed valve could malfunction/stop the heart at any time. It's almost as bad as having an aneurysm at 6.0 and walking around like a time bomb.