When to operate...?

[dwb71]

Seems like the decision of when to operate is changing. Before, a .9 valve area and a 4.5 ascending aorta dilation would be cause for caution, not for surgery. Yet, many "state of the art" institutions, like the Cleveland Clinic, take the position that it is better to operate on a person that once was thought to be too healthy. I am in this grey zone , and frankly find it quite uncomfortable. When the lead instituitions recommend you take action, it is very difficult to go against the grain. Yet, upon reflection, there is little if any downside to their change in philosophy. In fact, it can only be good. Healthier people stand a better chance of survival and therefore the outcomes can only improve. As we know, outcomes are the basis upon which decisions are made with respect to where to receive treatment. With valve replacement, when would it become apparent that delay might have been the better course of action? The answer would most likely be "never", or worst case, when the majority of these "early birds" come around for their "redos", or suffer complications from a regimen of coumandin.

So, I ask, has anyone been in this grey area where the debilitating symptoms are not necessarily prevalent, yet they are getting advice to proceed with surgery? Even bettter, has anyone chosen the "early bird" decision, and would they do it again? This is my first post, and I apologize for the longwindedness

dwb71
AVR and Hemashield in waiting

 

[temp69]

Early Bird Speaks

Early Bird Speaks

I could play two sets of tennis and feel fine
just was starting to barely slow down
at 55
but was a bit "off my feed."
4.6 aneurysm took four years to reach 5.1
my opening was .9

my body gradually was telling me I was slowing down (feet and hands fell asleep, a symptom all cardiolgists told me was UNRELATED, yet now, post op, the symptoms are gone!)

I was told by one card to get on the treadmill and walk an hour a day uphill and I'd be fine.

I feel like I could have gone a year, maybe two, maybe FIVE, but the surgery was inevitable, so I did it, somewhat on the early side.

Now I'm three weeks post op and am doing better every day. I suspect that I will be a New Improved model of myself within a month or so.

Let me know if you have any questions. And good luck. The success rate for this operation is remarkable.

temp69

 

[dwb71]

Thanks, "early bird", and congratulations on your successful outcome. I commend your courage to take the initiative. Being 50 with a young family, etc. makes me debate this issue ad nauseum with myself. Compounding the issue, as you may have noticed, is the likelihood that you can get opposite opinions about exercise as well as when to operate, etc. I think, like you did, my best bet is to listen to my body as best I can.

dwb71

 

[MrP]

With respect to ascending aneursym, here's an excellent article by Yale researchers regarding timing of surgery....see url below.


http://72.14.203.104/search?q=cache...horacic+surgery+yale&hl=en&gl=us&ct=clnk&cd=4

Also, an echo is not very accurate for measurement of your ascending aorta, whereas a CT scan with contrast will provide an accurate measurement. The dilation increases in size slowly. Usually the size will increase about 0.1 cm per year, and surgery is recommended at 5cm unless you begin having symptoms..... in which case surgery is advised right away. Good luck....this grey area is a real drag....been there.
__________________

 

[Ross]

Well let me tell you this, not to scare you, but to shed light on your thoughts.

I was healthy and walking around with a 4.5 annie. Mine only got to 4.7 before it ruptured, it never made it to their designated 5. By all rights, medical and physical, I should not be alive today to be writing this to you. I can say this, I'm proactive when it comes to getting this dealt with early. I have no desire to see someone go through what I did. I would not wish it on my worst enemy.

If your considering a mechanical valve, please read our resident expert and anticoagulant specialists website, Al Lodwick's www.warfarinfo.com and learn all you can about Coumadin. There is so much misinformation being said about the drug that it's no wonder people fear it. His site will dispell many of the myths that are still circulating today. Coumadin is not the big bad monster that many would have you believe if you weren't educated about it.

 

[RCB]

The times they are a changen

The times they are a changen

Many conservative institutions like CCF are starting to believe that early intervention is the most prudent choice for better outcomes and lowered mortality. A Mayo doctor (Sarano? Sp.) published an article last year
that recommended exactly that course of action.

In my own case, I feel I should have surgery about 10- 12 years sooner.
However, only provided that surgery was done by one of the best surgeon who specialized in the procedures I needed because I was such high risk.

My best advice:
Do your research and Git er done!

 

[Kate]

Not only did I agree to go early, I fought very hard for it. My aortic valve was probably within 6 months of needing surgery, but I had an aneurysm that had been measured variously at 4.5, 4.6, and 4.8. Almost no one would consider me a candidate for immediate surgery in that situation. However, I did lots of research and discovered more than one researcher recommending that body size be taken into account when considering aneurysms. One guy has come up with a formula to figure this out and when I plugged my 5'3" height and even the smallest estimate of my aneurysm, ended up higher than the ratio recommended for surgery. Now, of course, this is only one researcher, but my feeling was - if this surgery can be done at the Cleveland Clinic with a less than 2% risk of dying, my current annual risk of dissection is around 5% and that would like result in death or at least long-term health problems, why wait? I had to pressure my cardiologist to refer me for surgery, but I am very pleased I made the decision to be an early bird. Who cares if I probably could have waited six more months? In the grand scheme of things, it just isn't worth the risk (in my opinion ) Good luck figuring out your own grey area! Kate

 

[Ross]

Who cares if I probably could have waited six more months? In the grand scheme of things, it just isn't worth the risk (in my opinion ) Good luck figuring out your own grey area! Kate

Exactly! Waiting is just too dangerous a game to be played.

 

[Philip]

Like Kate I pushed for and had my AVR earlier than required from a medical view. I choose this because my active lifestyle was being effected and in decline. I felt the risk, reward ratio for early surgery was in my favor and doing nothing other than waiting on the sofa was not an acceptable option. If it was solely up to me I would have had the surgery even earlier. I am almost 3 months post-op and would make the same decision again.
Philip

 

[MikeHeim]

I did not have an aneurysm or stenosis, but rather a very leaky mitral valve. Regardless, I think many of the principles are the same. I was told that I could be medicated and avoid surgery for probably a few years. However, I was 28, very active, and couldn't stand the idea of spending the next few years with the exercise restrictions and waiting for the inevidable decline that my leaky valve would cause.

I chose to have my surgery ASAP so that I could get back to the lifestyle I enjoyed and not "waste" by late 20's and early 30's on the couch.

So far, so good.

 

[dwb71]

This was my first posting, and, boy, I am happy to have found this site. The Yale Research article is excellent. This is all about risk assessment, and the comment about comparing mortality rates for a rupture or dissection to that of cardiothoracic surgery is a compelling one. Plus, I think the CT scan is an excellent idea. I did the angio at CCF, which is where the dilated aorta was discovered. With respect to the CT scan - does anyone know if they carry any risks (stroke, death, etc.), and is the 64 slice the way to go?

dwb71

PS: And thanks for the tip on the coumadin article. What a tough decision to make between mechanical and tissue.

 

[lopearredlady]

Only two weeks post-op. but glad I did it

Only two weeks post-op. but glad I did it

I only had aortic stenosis identified, and my in-town cardiologist said to wait for my symptoms to get worse. I told him I did not want to drop dead. He said there was no guarantee of that, of course.
I researched all procedures; found the Ross; found a very experienced surgeon out-of-town; met with the surgeon; chose to go ahead based on his recommendations. What he found inside was an enlarged aorta that did not show up on any of the tests I had, and other heart abnormalities.
Each person's case is unique, I know, but I am so thankful I went ahead with the surgery.

Several of us have been in your position; it is definitely an uncomfortable journey through the unknown and involves difficult decisions. Mine was rather short; others have been so patient and waited. Either way, you will make the best choice for yourself; go with it; and don't look back.
Terry

 

[Ross]

There is very little risk with the Catscan. It's possible to have a reaction to the dye they use, so you might want to be aware of that, but outside of this, piece of cake. The 64 slice toaster is fairly new. Haven't seen too many pics with it yet, but seems to be a main thing in Australia. EXCELLENT Pics with it!

 

[dho]

This is an interesting topic because I too am in the grey area (with a 4.5 cm dilated aorta and a bad aortic valve). While the perspectives in this thread are all reasonable, I'm wondering what people think about the advantages of waiting with respect to improvements in technology. If I can stave off surgery for two years vs. five years vs. ten years by keeping my blood pressure low and hopefully retarding further growth of the dilation, even if the daily risk of rupture remains and the heart suffers a little bit pre-op, isn't there also a collateral gain in medical technology, the ability to do more effective surgery more quickly, and the potential of new and improved therapies? It seems like this needs to be factored in to any equation that compares the risk of surgery vs. the risk of non-surgery. But this would be a better question for someone who has been around for a while -- what is better now than five years ago? Ten years ago?

 

[Kate]

Hi Dho,
You raise a good point. If my research had suggested that a promising new technology or technique was close to approval and would have helped me, I certainly would have held out for it if I could have done so without undo risk of permanent damage. Of course, that kind of research and decision is much easier when the choice is between "now" and "in six months". It's much harder to know or guess what will be available 10 years from now. For example, the mortality rates for aortic aneurysm repair have dropped significantly in the last decade - if memory serves me, from 40% risk to less than 5%. I think if I thought I could stretch it 10 years, I'd try - but I'd certainly get my checkups regularly to watch that aneurysm! Kate

 

[Ross]

This is an interesting topic because I too am in the grey area (with a 4.5 cm dilated aorta and a bad aortic valve). While the perspectives in this thread are all reasonable, I'm wondering what people think about the advantages of waiting with respect to improvements in technology. If I can stave off surgery for two years vs. five years vs. ten years by keeping my blood pressure low and hopefully retarding further growth of the dilation, even if the daily risk of rupture remains and the heart suffers a little bit pre-op, isn't there also a collateral gain in medical technology, the ability to do more effective surgery more quickly, and the potential of new and improved therapies? It seems like this needs to be factored in to any equation that compares the risk of surgery vs. the risk of non-surgery. But this would be a better question for someone who has been around for a while -- what is better now than five years ago? Ten years ago?

If you have an aneurysm, the only thing that is going to make it go away is surgery. Some people are lucky enough to stave off surgery with drugs, but I was not one of them. I cannot understand why someone with something that can potentially kill them in literally a heart beat, would even want to try it. I've been there and I promise you, you don't want too.

With that being said, I do not see, nor did my surgeon or any of the others I consulted with, any big strides in technology or technique when dealing with aneurysms. It's wishful thinking, but waiting to see could get you killed.

 

[BillB]

dw....our situations are nearly identical. Being 56 years old and TOTALLY asymtomatic...my Aortic valve has recently gone from mild/moderate-to-moderate and my anyeurism has remained rather stabile at 4.5cm. My cardiologist has expressed his opinion that I wait, my surgeon, AND his preferred surgeon have both indicated that I should have surgery within 6 months. Do I want to do this...heck no...but I've decided to go forward and and have it done while I am good health and feel terrific. As Ross stated...the annie will never get smaller...the valve will never self correct. Both surgeons stated that there is currently a 5-7% chance of rupture/dissection/sudden death (Hmmm) and the surgical risk is about 1-2%. If I didn't feel so great it would be a statistical no-brainer! There were also 3 instances in my family whereas there was sudden deaths at early ages, so I feel that this has also impacted the surgeons decisions. This might be a "gray area" to some, but the stress of this situation is turning me gray. Do I want to do it...NOPE....am I...yes...this October.

BillB

 

[PegB]

waited for technology

waited for technology

When I started my mitral valve journey 25+ years ago, the best they had to offer was bovine or porcine which would need to be replaced in about 10 years. Then came the disastrous Bjork-Shiley mechanical valves that suddenly stopped and resulted in sudden cardiac failure. Scary stuff! About 15 years ago, my cardiologist said they were starting to REPAIR your existing valve!!! Now they have the DaVinci robot that only makes 4 little incisions between the ribs, and they're working on that clip that slips into place and repairs the valve through the femoral artery - NO INCISION!. Am I glad I waited? Yes, but only because I survived to tell the tale so far. Do I wish I had it taken care of 10 years ago, and it was over and done? YES!! If I get out of this being able to have a repair and no lasting heart damage I'll be very happy. I'm not going for any of the new stuff anyway.

I think every case is unique, but there's no guarantee that you can wait. So many people report that things were much worse than they expected once they got inside, and waiting would have proved fatal. All the new technology can't bring you back. I have to vote for getting it done when they say it's time.

Peg
In waiting room for mitral valve repair at Cleveland Clinic

 

[Cooker]

My PCP told me the time to have the surgery is "before" symptoms. I took his advice and that of the good folks here and all is well.

Best of luck to you.

Cooker

 

[Mike]

I notice you're from Buffalo. That makes me wonder "where" you're going to have your surgery. Cleveland isn't too far from Buffalo, but I know a fair number of heart procedures are done at Buffalo General and ECMC. I am from Niagara Falls, NY, but live east of Syracuse now. BTW my VR surgery was at University Hospital in Syracuse. Just curious how the Buffalo hospitals measure up.

Mike