Question of timing of surgery.

[DeuxofUs]

Hi all,

I am curious.... I know I am at 1.0 right now and have dropped from 1.6 in one year. Ouch. I have a few questions though and wanted to get your opinions.

1. I swear I have some mild chest pains and they radiate to my back area. I can't tell if it's anxiety or my valve. Is it possible to have symptoms at 1.0cm?

2. Are there risks in waiting to have surgery?? When do these cardios think it's time? 0.9? 0.8? I mean really???? I am only a couple of notches away. Can I demand it in August (after my next echo) if I degrade more???

3. I know it's a big surgery but with the amount of anxiety it causes, would an insurance company allow it now especially since it's interfering with the quality of my life now? ie, It's on my mind all the time and I hate not knowing when it's going to give out finally. In other words, I would like to move with my life!


thanks everyone!

Jacqui

 

[Lynlw]

Have you gotten a second opinion from another cardiologist or surgeon? If not I'd start there. I would imagine at 1.0 if it degrades more in August, you would probably be told it's time, since it would be smaller than 1.0

Actually thinking about it, have you have any tests beside the echo? Since they aren't the most reliable at measurements.

 

[mainframe]

It's been my experience cardio's think it's time when you show definitive symptoms.

My first surgeon told me less than 1.0 is a candidate for surgery. Mine measured .6 at the time, but I was fit enough not to have any symptoms. At the time my primary doc told me I needed surgery within the next couple of years, the cardio said within the next year, the surgeon told me he'd do the surgery any time I wanted as with my .6 measurement he felt I was ready. I wanted to get it over with and move on with my life.

My second surgery was easier to tell when I needed surgery. My bovine valve failed quickly and it became "NOW" rather fast.

 

[DeuxofUs]

Have you gotten a second opinion from another cardiologist or surgeon? If not I'd start there. I would imagine at 1.0 if it degrades more in August, you would probably be told it's time, since it would be smaller than 1.0

Actually thinking about it, have you have any tests beside the echo? Since they aren't the most reliable at measurements.

Lyn,

I haven't had a second opinion. My cardio said she didn't believe in waiting for symptoms to appear for surgery. She just feels I am not ready yet because the rest of my heart looks so good.

I asked *her* for an MRA but decided not to do it because of the stuff they shoot in your veins... some people have reactions to it. I thought that's ok.. Ill pass. I could do a CT scan but she didn't like the idea of radiation.

Feeling a little lost.... I guess secretly, I would love to do the surgery NOW at 41... and healthy.

 

[DeuxofUs]

One more thing

One more thing

BTW, I did have one of the top surgeons look at my two echos.. one year apart. He agreed I degraded fast but wasn't in the danger zone yet.

 

[ALCapshaw2]

Many Doctors (Cardios and Surgeons) use 0.8 as their 'trigger' for recommending Aortic Valve Replacement.

Many (most?) Surgeons will assess both your 'numbers', your symptoms, and 'impact on lifestyle' when deciding when to recommend surgery.

In my (non-medical-professional) opinion, Symptoms are a sign that Damage is being done to the Heart.
Most Surgeons want to FIX your valve problem before there is any permanent damage done to your heart muscles and walls.

FYI, most surgeons will want you to have an angiogram (heart catheterization) to assess your valves AND Coronary Arteries before doing surgery.

'AL Capshaw'

 

[reedonator]

Hi Jacqui,
I am 43 years old and am 1 month post op for aortic valve replacement. I was diagnosed with severe stenosis of the AO valve on Feb. 10, 2011. When it was discovered on the echocardiogram they initially planned on surgery at end of March or in April. I had an angiogram performed on Feb. 25th and the doctor discovered that the stenosis was worse than the echocardiogram indicated, it was less that .8cm. They moved my surgery to the following week. I am not questioning your doctor but it is my understanding that stenosis of the aortic valve creates a fair amount of back pressure in left ventricle of the heart which can lead to enlarged heart, thickening of the ventricle walls, and eventually cardiac dysrhythmias. I wouldn't want to wait for those things to happen before getting the surgery. Have you had any other tests performed besides the echocardiogram? I wish you the best of luck and feel free to ask me any questions.

Kevin

 

[Cooker]

I agree with Al ... my Cardiologist, Internist and Surgeon all emphasized the point of fixing the valve before any permanent damage occurred ...

 

[Marguerite53]

Hi Jacqui

Waiting is the hardest part! I honestly thought I was going to croak while I waited 3 years (after the 1.0 echo measure) for my valve to degrade.

Many of us have found that the farther along it gets (the tighter the valve from the stenosis) the faster it goes! In other words, you may find that everyone thinks you are ready for surgery after your next echo in 6 months. If you are nervous, I'm sure your cardio would be willing to give you an echo in 3 months. If I were in your shoes, I would ask her that now. And while you have her on the phone, ask her WHEN she advises her patients for surgery -- at what point; what "notch". Then you will know!! My cardio said she would call in the surgeon when my valve hit .7. Well, I was 51. It was November. Suddenly I realized that I needed a mammogram and a colonoscopy. I freaked -- why hadn't I done those sooner? Then, the mammogram wasn't perfect and I needed a needle biopsy to remove something. Whoa. Not expected. Then came the holidays. Then the husband wanted a quick little sunshine-y vacation. Yikes. So from November to April (when I finally "elected" to go in) my valve had closed from .7 to .53 -- very very small! I was lucky and there was no damage to my heart. It isn't always true that if you wait a bit your heart will enlarge while it has to work harder. But, it can.

As far as your chest pain... ask the doctor. If they aren't concerned, you can probably just learn to live with them. My guess is they'll go away after surgery, but no doctor will agree with you or tell you why. Also..... I had a real problem with acid indigestion prior to my surgery. Think about that.... maybe read up a little on it and change your diet some (like maybe you have some triggers that bring on those spurts).

You have every right to make an appointment with a surgeon any time!! Check with your insurance as to how that works. My surgeon, however, would not meet with me until I had had a heart cath (angiogram) and guess who performs those -- yep -- the cardiologist. So. Talk with your cardio. Voice your questions, concerns, impatience!! It will help unite the two of you in the "cause" of your success. Don't be shy.

:smile2: Marguerite

 

[Mentu]

Jacqui, there is no firm standard for when to trigger surgery before major symptoms appear and the heart is damaged. My surgeon said that if the valve diameter has changed more than 0.1 cm2 in a year that this is an indicator of accelerated stenosis. He believes that once a valve reaches 1.0 cm2 if the valve is degrading more rapidly than in the past that surgery should be discussed and then performed when the surgeon and patient, together, agree. We are all individuals. I began having symptoms at around 1.25 cm2 but I have a friend whose valve is near 0.7 cm2 who has no significant symptoms yet. Timing needs to be a negotiation between you and your surgeon.

Larry