Valve replacement timing

[ALCapshaw2]

The Low / NO anticoagulation studies are being conducted under the direction of Emory University. There are at least 3 Surgeons who are very familiar with ONX valves there, Dr. Puskas(sp?), (call Catheran Burnett, RN, at 888-339-8000 ext 265 for the names of the Atlanta Surgeons).


(This new Forum "upgrade is driving me NUTS!
The screen is way behind my typing. I cant' to on like this.


'AL sdCapshaw'

 

[CCRN]

To cut or not to cut........

To cut or not to cut........

I say find a cutter and a good one. The number "5" is a ballpark figure for an average size male. Listen to the good experienced people here. I did and I'm a nurse actively working in cardiac surgery. I challenged my surgeon with all the advice I picked up on this web site and I believe HE learned something. If you are short of breath you are symptomatic and things will not improve without some sort of medical intervention. Any valve is a good valve as long as it fits you and your situation. Don't be afraid to investigate all angles. AND if you're not happy with your Doc, fire him/her.....cardiologists are a dime a dozen. (I've fired three myself) DO get a first and second surgical opinion. There are cardiothoracic surgeons who specialize in valvular and aortic procedures. Hope this helps.

 

[SignlRun]

I say find a cutter and a good one. The number "5" is a ballpark figure for an average size male. Listen to the good experienced people here. I did and I'm a nurse actively working in cardiac surgery. I challenged my surgeon with all the advice I picked up on this web site and I believe HE learned something. If you are short of breath you are symptomatic and things will not improve without some sort of medical intervention. Any valve is a good valve as long as it fits you and your situation. Don't be afraid to investigate all angles. AND if you're not happy with your Doc, fire him/her.....cardiologists are a dime a dozen. (I've fired three myself) DO get a first and second surgical opinion. There are cardiothoracic surgeons who specialize in valvular and aortic procedures. Hope this helps.

Thanks for advice. I am working on getting 2nd/3rd opinions this week.

 

[ALCapshaw2]

Another good group is Peachtree Cardiology in Atlanta.
Dr. Wolfe comes highly recommended and he does use On-X valves.

 

[Arlyss]

I have posted links to three medical papers about valve choice options, the most recent published this year. The thread is in the valve selection category.

It might be helpful to read them; they touch on a number of the challenges/trade offs that exist regarding valve choice.

Best wishes,
Arlyss

 

[cday]

No early symptoms -- then WHAMMO!

No early symptoms -- then WHAMMO!

You sound like an active guy. My husband is too. Diagnosed with murmur about 10 years ago -- no restrictions regarding activities (plays competitive tennis).

We can't remember if we knew at the time that it was a BAV. His first recognizable sign of trouble was chest heaviness, followed by fainting, followed by going into cardiac arrest during light warm-ups on the tennis court. By the grace of God, there was a doctor 10 feet away who was able to revive him.

ER Cardio says - BAV w/ stenosis. Echo says - severe. Cath says - 48 mmg

We wanted AVR ASAP! Had surgery the following week with a Bovine valve.

From what little I've read the Bovine valve is better at keeping the pressure gradients even. That might be a factor if you are very active.


Just to let you know that you might suddenly have VERY severe symptoms without any warning.

 

[gerrys]

I am planning surgery in the next few weeks.. just wanting to get input from those with experience. I have had both feelings of panic (want it done now!)and second thoughts of "am I rushing into this?".

Your history closely mirrors my experience - long term knowledge that there was a valve issue, interim diagnosis said don't worry as you have time (in my case they said 10-15 years down the road), then some symtoms popped up and I was facing the "WHEN" issue big time. Finally, I was at 90 mmHg and deciding whether tomorrow or the day after would be OK.

My advice is to get the operation done BEFORE you have other issues. It is tough to know there are risks and the "out of commission" time will be pretty long. But in the long run you'll actually be reducing the risk and decreasing the recovery time if you get it done sooner rather than later.

Here' to a long, healthy future!

 

[SignlRun]

Surgery date

Surgery date

Well, I have my surgeon and date. 6/25 at Emory University Hospital in Atlanta, GA. Dr. Edward Chen. Still deciding on valve; medtronics vs on-x. Dr. Chen is very comfortable with both. I am leaning toward on-x but am not 100% there yet.. beginning to think I wont ever be 100%.

Here's to 6 day vacation in Atlanta..

 

[ross3]

I got bad advice

I got bad advice

In 2004 I was 46mm by echo and my internal medicine doc said, no problem we'll look again in a year. In 2005 it was 47mm and he said it was fine to skip a year till the next checkup. In December 2007 it measured 51mm by CT scan and my cardiologist said 'no problem' but let's check again in 6 months.

After discovering this forum a few weeks ago I realized that I'd been getting poor advice so last Friday I got a detailed MRI and consulted with a surgeon who said that at its present size of 52mm I should get it fixed.

I'm about to schedule for surgery but have been stressing over how to do what so many here advocate (i.e. - 'find the best').

I note that you live in TN. How did you come to select Dr. Chen and Emory?

 

[Duff Man]

dude i'm way out of sorts about my aneurysm/valve replacement timing. I just got a letter back from one of a few top surgeons on aortas saying that it's prudent to get it done now... but it won't be so freakin prudent if I die in the process. I find the 5% unacceptable. I don't understand well enough how people die from this surgery, and if I could understand or have some experience with it I think that I would be more comfortable. Maybe.

Every doctor I've spoken to has said my aneurysm is small for an aneurysm. But they don't remark on the odd sharp angles of it or the location right above the root. I've never seen pictures of an aorta like mine with a kind of sharp bulge, so I have no way to know what kind of risk I face with waiting.

I know that I feel not great. I have chest pain, and my heart pounds hard when I do things like walk up steps. I get dizzy spells. I have asthma all the time so I can't be sure if I have shortness of breath.

Sex is still OK so maybe I should wait?!?!

Sorry, I'm frustrated and I had to vent. I don't mean to steal the thread from SignlRun, but I'd love your thoughts while we're on the subject.

 

[LLJ]

It wont get better-time waiting buys you nothing. My doc said "We could wait 6 more months-your anneurysm is small" Ok why?

 

[tommy]

It was a scary day in early October when my cardio told me that the valve had to go. He said, "I'm not calling 911, but don't wait until February". At some point it is clear that you have to chose your risk. Sure it's scary, but waiting may only make the odds worse.

 

[ctyguy]

Im 43 and other than a bum aortic valve I was in really good health, I lifted weights and did alot of aerobic stuff. I never gave a thought as to why when I went all out at certain things I would get short of breath and have discomfort in my chest. As soon as I stopped I would catch my breath and the pain would subside. But it got worse over time so I went to a cardiologist just to get myself checked as a precaution, there has been heart issues in my family history. My cardiologist did the EKG, the echo, and then basically told me that if he took 100 people with my condition and came back in 2 years, over 1/2 would be dead. He was direct and to the point but it hit home and within a few weeks I was on the table for surgery. I chose my surgeon on reputation and what I could find about him on the web. When I actually met him for the first time I knew I made the right choice. Very knowledgeble and I could tell that he didn't fluster easily, I liked that. I also wanted an On-X valve and my surgeon had put that specific valve type in place about 50 times at that point. Hundreds, possibly thousands of other operations under his belt as well.

The bottom line is you need a procedure, you have multiple issues. You need to find a surgeon you like and trust and get your surgery setup. If its an On-X valve you want and Dr Chen is someone your comfortable with, then take that leap of faith. The longer you wait the more risk your going to have deal with.

Best of luck...

 

[SignlRun]

In 2004 I was 46mm by echo and my internal medicine doc said, no problem we'll look again in a year. In 2005 it was 47mm and he said it was fine to skip a year till the next checkup. In December 2007 it measured 51mm by CT scan and my cardiologist said 'no problem' but let's check again in 6 months.

After discovering this forum a few weeks ago I realized that I'd been getting poor advice so last Friday I got a detailed MRI and consulted with a surgeon who said that at its present size of 52mm I should get it fixed.

I'm about to schedule for surgery but have been stressing over how to do what so many here advocate (i.e. - 'find the best').

I note that you live in TN. How did you come to select Dr. Chen and Emory?

I live in Chattanooga (about 2 hours north of Atlanta) and there is one surgeon in town that does enough aneurysm repairs to make me comfortable (3-4/month). He is good surgeon with very good reputation. The bad part is that he leaned heavily toward tissue valve and did not really want to talk about on-x mechanical. I looked around to find someone who would. From what I can gather in very laymens terms the valve replacement is something the majority of CV surgeons do on routine basis. The anuerysm repair is less frequent and more complex. While all CV surgeons are "trained" to do the anuerysm repair it was my goal to find someone who does alot of them. Dr. Chen has specialized training in aorta surgery and anuersym repair makes up a significant amount of his practice. He does 3-5/week.

 

[SignlRun]

dude i'm way out of sorts about my aneurysm/valve replacement timing. I just got a letter back from one of a few top surgeons on aortas saying that it's prudent to get it done now... but it won't be so freakin prudent if I die in the process. I find the 5% unacceptable. I don't understand well enough how people die from this surgery, and if I could understand or have some experience with it I think that I would be more comfortable. Maybe.

Every doctor I've spoken to has said my aneurysm is small for an aneurysm. But they don't remark on the odd sharp angles of it or the location right above the root. I've never seen pictures of an aorta like mine with a kind of sharp bulge, so I have no way to know what kind of risk I face with waiting.

I know that I feel not great. I have chest pain, and my heart pounds hard when I do things like walk up steps. I get dizzy spells. I have asthma all the time so I can't be sure if I have shortness of breath.

Sex is still OK so maybe I should wait?!?!

Sorry, I'm frustrated and I had to vent. I don't mean to steal the thread from SignlRun, but I'd love your thoughts while we're on the subject.

I don't know you specifics but am surprised at the 5%. Dr. Chen told me more along the lines of 1-2% and I had heard the same elsewhere. 5% is something they quoted for a valve re-do; if you go tissue and it wears out.

When discussing my issue with friend who is Dr. he told me not too lose sight of the fact that my current state carries risk as well. He said many people get spooked by the risk numbers associated with surgery and lose sight of the fact that they are walking around with much higher risk than the general public.

Good luck with your process!