when is best time to have avr ?

[coach]

im 52,male. valve has shut down to 1.0 . has been this way for over 3 yrs. doc says lose some lbs. so im now a walker , dont no how hard to push when im out there,i get sharp pain in my jaw and neck area then later it leaves . i golf 3 times a week and no problems. doc says to wait for symptoms to encrease . got a second opp. about 2 years ago and that doc. said lets do it now ! last visit was told heart was enlarged but that was normal for this problem ! for some reason i feel that my cardio doc is taking a very non caring or should i say insurance awareness way of treating me . kaiser ! how bout some help from the ones that have been there ! this is a great site !

 

[Ross]

Fire your cardio and go see a surgeon. Your showing plenty of symptoms.

You don't want to wait for enlargement or damage to set in, then it's too late.

 

[Lynlw]

I agree with Ross. Maybe you should go back to the doc that told you 2 years ago to have surgery. Lyn
ps were you ever able to get that paper open?

 

[coach]

yea,the second oppin doc is not in our group any longer ! sure is hard to trust your doc when you read all that is out there that points to not waiting ! and just have it done . i sure dont want to have a blow out !

 

[Adam 12-21-05]

Hey there Coach,

I'm not a doctor, caridologist or a cardiothoracic surgeon.

I'm a former patient that, like you, had valve issues (stenosis and regurg) which triggered an enlarged heart.

Both my first- and second-opinion cardiologist were not in favor of a dilated (englarged) heart due to its impact on the heart. This condition is known as dilated cardiomyopathy. The heart dilates (becomes enlarged) and pumps blood less well. Various symptoms may develop depending on the severity of the condition.

One of my cardiologists suggested surgery within six months. The other cardiologist suggested thirty days.

I followed the advice of Dr. Chaikin (my second opinion card) and had my aortic valve replaced a few weeks later.

I share that information not to scare you but to provide you with additional information if your situation correlates to the issues I was having.

I wish you the best,

Adam

 

[Bina]

Hi coach,
I saw my cardio annually, then every 6 mths, then every 3 mths, and I was still refusing surgery. Yes, I was tired, having trouble breathing.....and SCARED.
My GP told me that I could very well end up dead within a year or two. That was the kick in the butt that I needed.
My angiogram showed the aorta itself was having stress, not good.
So, I saw the surgeon, really liked him, and went for it.

Coach, you have the advantage that you found this wonderful group before surgery; everyone will be here for you

 

[Nancy]

Fire your doctor, the sooner the better! This is your life we're talking about, you need the best care and the best advice, and right now you aren't getting either.

There is only one you, your doctor has many patients (unfortunately), and he doesn't care about you the way you care about you.

 

[67walkon]

Coach, you have to decide. I'm 57 and extremely active. My valve is down to 1cm. My aorta was recently measured at 5 cm. The 5 cm aorta pretty much stopped me in my tracks. If I were sedentary, which I am not, I have about a 5% chance of dying from my aorta in the next year.

You have symptoms. I don't. About a month ago, I rode a bike 150 miles over 2 days, averaging about 16 mph. I had none of the symptoms you have.

About 10 days ago, I had a new CT which showed the dilated aorta. It was part of a consult with a surgeon. I expect them to give me a surgery date sometime in July; I'll know within the week.

If your vavle is at 1cm, have them check the other stuff. Ross and others convinced me the risk of dying is too great to fool around. I'm not doing some of the things I was doing because the surgeon told me not to. I am still riding my bike 25 to 50 miles 3 or 4 times a week, but I'm keeping my HR fairly low.

Be careful. If something in there blows, it ain't pretty!

 

[ALCapshaw2]

Sharp pain in Jaw and Neck, Enlarged Heart...

These are symptoms that can lead to Permanent Damage to the Heart Muscle or walls or SUDDEN DEATH.

When an Aortic Valve Shuts Down, it's ALL OVER, ADIOS AMIGOS, and that can come on quickly.

Best to interview Surgeon(s) NOW. Let them decide on when to replace your faulty valve. They like to get in there BEFORE the heart is permanently damaged, for good reason! (And Old School Cardiologists tend to drag their feet until you are on your last gasp or at least highly symptomatic).

'AL Capshaw'

 

[briansmom]

Please read below what my son has been through. In his case, they did not believe that he could have heart trouble so they ignored all of his symptoms. It darn near killed him and he now faces a lifetime of heart issues. Then go read some of the post ops from healthy members that got their surgery BEFORE their hearts were damaged. They bounce back quickly and go on to lead mostly "normal" lives.
Get a 2nd opinion.
I wish you the best with this difficult time.

 

[Lisa in Katy]

How old is your cardiologist? The accepted practice has changed over time. When I had RF in 1976, my heart became enlarged. The doctor said I would need surgery within 4 years. Over time, it became more enlarged. I was pretty much asymptomatic, though, so they decided to continue watching me. They were looking for a series of symptoms - SOB (which I had at times, but not severe), chest pain, irregular heartbeat, general bad health, etc. Finally, in 1998 I was tired of playing the waiting game, so I had surgery even though I was still very healthy. The cardio told me that after looking at my heart during cath, it was amazing that my heart had adjusted so well to the crappy valve.

Anyway, my heart did shrink back to normal size, even though it had been enlarged for 22 years.

Regardless of my successful story, the thinking now is that you shouldn't wait until you are really sick. Have it when it is convenient for you, sooner rather than later.

 

[Marguerite53]

Coach. Please make an immediate appointment to consult a surgeon. There are lots of threads here discussing what to ask the surgeon.

Before your surgical consult have your cardio mail or fax all of your medical test records to you (echoes, angiograms, stress tests, etc.)so you can take them to the surgeon. Normally, the cardio would send them over directly to the surgeon. And, if you want to just TELL the cardio to do that and that you are going in to consult a surgeon...do that. Just get your butt into a surgeon ASAP.

You are symptomatic. The jaw pain is angina. Your heart is enlarging. You need the advice of a surgeon.

My heart was "mildly enlarged" and I waited until I was narrower than .7 and now, one year past my surgery, the heart has not corrected itself yet. Sometimes they do, sometimes they don't. This minor enlargement isn't really affecting my quality of life much, but it's not the perfect heart I ought to have at age 53, either!

You will love talking with the surgeon. He will give you excellent advice and information. If you get to wait.....fantastic. If it's high time for the surgery....you get to live.....also fantastic. It's a win-win proposition.

Get thee to the surgeon!!

Marguerite

 

[coach]

thanks to all

thanks to all

wow! what great advise . thank you so much for the time and the imput. i will take your advise and seek out a appt. with a surg. asap. i really belive that the type of ins . i have has kept my cardio from pulling the trigger. that should be against the law ! i will let you all know the outcome of my meeting with a surg. thanks again ! everyone.