Valve replacement timing

[SignlRun]

I have a BAV and ascending aneurysm. The valve is 1 cm2 with mean gradient of 52mm hg and the aneurysm is 4.8cm. I am for the most part asymptomatic; a little shortness of breath when I start running but it goes away after I warm up.

I was referred by cardiologist to "begin discussing" surgery. Once at the surgeons office I was advised by the surgeon to have surgery in 6-8 weeks; a bit sooner that I was expecting.

I am in the process of getting 2nd opinions but was curious as to how the timing went for other folks with similar issues.

Thanks!

[Ross]

In my opinion, your there now. The magic number is 5.0, but BAV's sometimes rupture before that because of tissue weakness.

[Cooker]

Welcome to the zoo....I don't know about ascending aneurysms but I just wanted to welcome you aboard...there are a lot of folks here that will give you good information.

[SignlRun]

Thanks for your input.

[briansmom]

My son dissected before we knew what was wrong with him. You will need surgery so IMHO you might as well get it done before you become symptomatic and risk damaging your heart.

I know it is scary, but read the stickys on this forum and educate yourself well and it will become a little less frightening.

Good luck and let us know when your surgery is.

[Bina]

Welcome to the group. There is not point in delaying a life saving operation. I delayed and almost ended up.....you know.....

[Susan BAV]

Did your surgeon state what specifically concerned him/her to the point that your surgery needs to be this soon?

It is my personal opinion, based on my experience and experiences I've read on this site, that an excellent and experienced and highly recommended heart surgeon isn't likely to recommend valve replacement surgery unless it's necessary.

When they did my last angiogram, they said I needed surgery right away and my surgery was less than two weeks later. Any length of time like that is practically a luxury compared to some of the emergencies experienced by other members here. Emergency OHS is not something you want to experience.

Hope all goes well for you. Take care and post again.

[SignlRun]

He was concerned about dissection. My cardio, however, seemed to think I was ok until 5cm.. He thought my stenosis would be an issue first.

[SignlRun]

Get out a ruler and see how big 0.2 centimeters is.

Believe it or not I already have.:)

[Tom F.]

I was at 4.8 when told I needed surgery. It was not a rush, and I put it off by several months. After 4 mos. of pretending it would go away I was essentially told that I was playing with my life and to get it done.

[SignlRun]

And what was your conclusion?

Pretty small.

[SignlRun]

I'll be blunt here....

So you have a BAV with an aneurysm approaching 5.0 (an artifically set guideline), you have stenosis, your surgeon is worried about dissection & your cardio is worried about the stenosis...

And you're wanting to delay why?

I know facing OHS is a scary thought & the suddeness of the knowledge of all of this is quite a shock - often referred as a kick in the stomach.

That being said, the risks you take by waiting are serious. I was in almost exactly your situation (although no stenosis, had BAV, aneurysm & major regurg). When I asked my surgeon whenn I should have this done he said - "2 years ago". I responded - "how fast can I have this done? How's tomorrow look for you?" :D

So in my view, I wouldn't want to be waiting a long time for surgery. Aneurysms are not be taken lightly. The sooner you get in & have this done - the better. You'll start feeling better & remove those risks.

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?".

[aussigal]

Welcome ....

I had a 4.8cm "annie" that my surgeon said "looked the same as a 5cm one" when he got in there...its a teeny tiny ammount and no way of telling without waiting for ages if it is growing, going to burst or is stable!?...I didnt want to risk it as my Dad died at 38 from the same thing...I had the OHS and can now rest easy.

Sure, give yourself some time to digest the huge news you have been given but dont stop moving forward with the plans to fix this while its still an option...Emergency situations turn the stats around from 95%+ survival to around 5% survival...and ask Ross, you dont want to go there.

[ALCapshaw2]

Ross neglected to tell you "the Rest of His Story".

HIS aneurism Disected at 4.8 cm.

He was rushed to his local hospital where they were trying to figure out the nature of his problem.

A Cardiologist came by, suspected an aneurism problem, ordered the proper test and confirmed the disection.

He was Med-Flighted to the Cleveland Clinic (#1 Heart Hospital) where he underwent EMERGENCY SURGERY.

I don't remember the details of his recovery,
But I do know, YOU DO NOT WANT TO GO THERE!

Ross was lucky. Over 90% of patients with a Disected Aortic Aneurism DO NOT SURVIVE. (Remember John Ritter?)

A Planned Surgery, without Major Complications or Damage is MUCH Safer and Has Better Outcomes.

By the way, did you ask your Surgeon how much experience he has repairing Aortic Aneurisms?
Surgery to repair / replace the Aortic Arch is not for the inexperienced.

Did anyone order a CT Scan or MRI of your ENTIRE Aorta?
(Echocardiograms do NOT visualize the entire aorta from my understanding of the issue)

Sorry for being so blunt.

'AL Capshaw'

[MrP]

My advice is to find the very best thoracic surgeon available for this procedure...period.
All my best,
MrP

[Duff Man]

Get out a ruler and see how big 0.2 centimeters is.

Kudos to you Oaktree. I've done that too. :)

You need the surgery. Find the best surgeon with the most experience.

[lcwhitney]

If your anuerysm is at 4.8cm it needs to be repaired immediately When my anuerysm was discovered it was 4.5cm. and I was told that if it reached 5cm. it could start dissecting. If that happens you are in big trouble !
Lettitia

[surfsparky]

Welcome to this great site.
It looks like it's a good time for getting it fixed...just remember that the surgery is life saving, not life threatening. Research and arm yourself with knowledge so that you can make the best decisions for you.
All the very best!

Yolanda

[perrypiratesdad]

Welcome! In my opinion, the sooner the better to get it done. The way my doctor explained it to me, and my aneurysm was about the same size, if I were all prepped and ready to go to surgery AND the aneurysm ruptured, I would never make it to the OR. So, why take unnecessary chances. More than likely, you could wait until after 5cm, but why take that risk.

[SignlRun]

Ross neglected to tell you "the Rest of His Story".

HIS aneurism Disected at 4.8 cm.

He was rushed to his local hospital where they were trying to figure out the nature of his problem.

A Cardiologist came by, suspected an aneurism problem, ordered the proper test and confirmed the disection.

He was Med-Flighted to the Cleveland Clinic (#1 Heart Hospital) where he underwent EMERGENCY SURGERY.

I don't remember the details of his recovery,
But I do know, YOU DO NOT WANT TO GO THERE!

Ross was lucky. Over 90% of patients with a Disected Aortic Aneurism DO NOT SURVIVE. (Remember John Ritter?)

A Planned Surgery, without Major Complications or Damage is MUCH Safer and Has Better Outcomes.

By the way, did you ask your Surgeon how much experience he has repairing Aortic Aneurisms?
Surgery to repair / replace the Aortic Arch is not for the inexperienced.

Did anyone order a CT Scan or MRI of your ENTIRE Aorta?
(Echocardiograms do NOT visualize the entire aorta from my understanding of the issue)

Sorry for being so blunt.

'AL Capshaw'

Thanks for your input. A bit more history about me. I have know about the BAV for about 20 years. In May of 2006 I was about to compete in an Iron Man Triathlon competion in Couer d'Alene Idaho and thought it may be a good time to see how the BAV was doing. I have a friend that is a cardio so I asked him for eval. He ordered echo and said "yep you have BAV and moderate stenosis but I would not restrict your activity at all. Lets follow again in 1 year to see if/how fast it is changing?" In May of 07 I got another echo.. not much change in valve but the tech did get better image of aorta and it looked dilated. Cardio ordered CT and determined dilation of 4.7cm. He said we will get another in 6 months to see if/rate of change. Oct of 07 CT showed still at 4.7 cm. Next step was echo again in six months to check the valve. April 08 echo show valve narrowed to 1 cm2 with 52 mmHg mean gradient. That's when I was sent for another CT and sent to CV surgeon. Most recent CT shows 4.8 cm. My biggest issue now is deciding on valve type. I am leaning toward ON-X but the CV Surgeon I was referred to prefers tissue and won't use it. While I am sure the surgery is "no big deal" for him.. I'd just as soon have a shot at doing it once and moving on. I am investigating docs in Atlanta, Birmingham and Nashville. I do understand that aneurysm repair is more complex (my training partner for triathlons is CRNA and has done those cases - he is not about to let me go to someone without lots of experience with DHCA-Deep Hypothermic Circulatory Arrest).

Again - thanks for input from everyone.

[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]

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]

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]

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]

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?!?! :D

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?!?! :D

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!