Success Rate of AVR OHS

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I was "re-diagnosed" in September 2010. My diagnosis went from Marfan's-like symptoms to Loeys Dietz Syndrome. LDS is classified as the "deadly cousin to Marfan's". I went from just monitoring a pesky aneurysm and mild to moderate leaky valve one day to you need surgery sooner rather than later. When I met with my surgeon in September, he told me if it were up to him he would do the surgery "tomorrow". I opted to wait six months and let me tell you, they were the longest six months of my life. Nothing changed, I didn't feel any worse except for the mental h*ll I put myself through. I had anxiety and panic attacks, ER visits, etc. (I do wish I had joined this website months ago, it may have put my mind at ease...) Don't wait, have the surgery and get it out of the way.

I told my family a couple months after my OHS, if they ever come and tell me I have another aneurysm and need surgery again, my response is going to be "do you have time this afternoon?" because I don't want to think about it any longer than absolutely necessary. My mom was relieved to hear this because my initial comment while still recovering in the hospital was if they ever mention OHS again (or surgery on any aneurysm anywhere in my body) was to tell them to get away from me. ;-)
 
Hey everyone.. Mate you should not concern yourself with this.. Listen to my story..19th May had ascending aorta replacement.... 2 days later was told that they would open me again the next morning to cut out a major clot. 2 days after that operation one of my coronary arteries started to close due to all the trauma.. Yep you guessed it they reopened me for the third time and cut an artery out of my body and used it for a bypass... This time when they tried to close my chest on the slab my heart stopped... Opened chest and the heart started. Closed chest heart stopped... They rang my wife and said that I was close to death cause they could not close the chest... They put a balloon inside my chest and blew it up and then slowly closed chest and put me in a coma for 4 days whilst they slowly let the air out.. I woke up on the 1st June and now I am walking 2 kms per day living life to the fullest.
I am not telling you this cause of what I went through but rather to explain that most OHS is pretty routine but my case was one in a million....
You will be ok... Most of us have gone through it and you will make it to the other side... Feel free to email me if you want to talk...
Cheers
Dave
 
Hey everyone.. Mate you should not concern yourself with this.. Listen to my story..19th May had ascending aorta replacement.... 2 days later was told that they would open me again the next morning to cut out a major clot. 2 days after that operation one of my coronary arteries started to close due to all the trauma.. Yep you guessed it they reopened me for the third time and cut an artery out of my body and used it for a bypass... This time when they tried to close my chest on the slab my heart stopped... Opened chest and the heart started. Closed chest heart stopped... They rang my wife and said that I was close to death cause they could not close the chest... They put a balloon inside my chest and blew it up and then slowly closed chest and put me in a coma for 4 days whilst they slowly let the air out.. I woke up on the 1st June and now I am walking 2 kms per day living life to the fullest.
I am not telling you this cause of what I went through but rather to explain that most OHS is pretty routine but my case was one in a million....
You will be ok... Most of us have gone through it and you will make it to the other side... Feel free to email me if you want to talk...
Cheers
Dave

reading about it gave me the chills. you are one hell of a lucky guy.
 
+1 to all the previous comments. I'd just add that I think there's one good reason to wait a bit, if you're still asymptomatic, doing normal (and athletic) activities without special symptoms. The reason is psychological, and kicks in when you're recovering. Basically, the initial recovery from AVR surgery is usually amazingly quick and steady, with most of us getting discharged to home by a week post-op. But the rest of the recovery, including a program of cardiac rehab, takes months. And months. I just barely had symptoms for the month or so pre-op, and I probably could have skipped a minor(?) MV repair if I'd gone 6 months sooner. But now, at 7 months post-op, I'm pleased to say that I finally feel stronger and fitter than I did the day before my AVR! If I'd gone in 6 months sooner, I'd still be waiting to feel better than I did pre-op, and it might take 10 months or more (and my recovery has been excellent).
I have a pretty positive attitude toward these things, but I think spending that long feeling worse because I got "fixed" might get me down. Most of the accommodations your heart makes to compensate for stenosis and regurg in an AV, pre-symptoms, are naturally reversible after the AV is fixed, and most experts think the risk of "blowing up" pre-op is quite low until the symptoms start, then rises sharply and steadily. So many cardiologists and surgeons aren't in a big rush until symptoms start.
In my case, my cardio DID think I should go sooner, and he was frustrated that I was still so fit, and did so well on the treadmill (stress-EKG) when the other tests showed that my AV was turning to garbage. My surgeon was fine with waiting.

So the idea of getting it done quickly, and avoiding all possible heart damage from "accommodation" is sensible, but there's also a case for waiting until you start feeling some symptoms.

Also, there may be some health-outcome benefits from waiting -- e.g., tissue valves last longer in older patients, etc.

Talk to your Doctors, listen up, read, think. . . And don't worry -- it's not warranted, and it doesn't help, either!
 
I do not agree with waiting, Even though you might not have symptoms on the out side your heart is changing to keep you going. I thought the faster I got it done the less remodeling my heart would have to go through to get back to normal. What did I do to get it done a year early. I told them I was having chest pains and they could operate or I would go to another hospital. Im happy wiyh that decision. 5 weeks out walking 4 miles every other day. I was walking every day but it made me a little to tired. I think the stronger you are going in the stronger you are coming out.
 
just wondering if anybody can tell me. what usually is some causes of the small percentage of deaths from surgery? is it usually older people with weak bodies or is it surgeon mistakes? is your success rate higher if your young like me or does it make a difference?
 
just wondering if anybody can tell me. what usually is some causes of the small percentage of deaths from surgery? is it usually older people with weak bodies or is it surgeon mistakes? is your success rate higher if your young like me or does it make a difference?

My uneducated guess is that the risk of surgical death has a LOT to do with the heart damage done by waiting too long before deciding to have corrective surgery....and, yes, younger ages should be able to cope with the trauma of surgery better. Surgical mistakes are way down the list as a reason for heart surgery failure. And remember, the heart is only a big, firm muscle that is easy to work on.....at least that is what they told me:wink2::tongue2::biggrin2:.
 
I agree with Ken, I don't believe in waiting either. You don't want to stress your heart while it's compensating for that bad valve. This is why I have made the decision to go ahead with the surgery early next year even though my valve is at 1.0 and my left ventricle is only getting slightly enlarged. Sorry, I'm not going to wait around until things get worse. This is an enevitable process so it's better to get it done before the damage is done.... less work for the heart to get back to normal after surgery.

I know it's easy to think about "oh what if I am the 2 percent that doesnt' make it" but I suspect it might be a higher rate of mortality when driving to work in the morning!! LOL. Seeing all these people go through it and come back DAYS later to post about how they are doing has given me extreme confidence. I'm still scared as hell but I know I am doing the right thing.. and given the other option of not doing anything??? Ill take the surgery! :biggrin2:
 
I know a woman who had a stroke during her VR surgery. She was in her early 40s, in very good health and had no discernible damage to her heart. It was not discovered until after the surgery when she could not be weaned from the ventilator or regain consciousness. She was pronounced brain dead several days after surgery, and life support was discontinued.

A friend's sister also had a stroke during her VR surgery, though it was not fatal, it left her totally disabled. Anesthesia does not come without risk, and a stroke is one of those risks. It's rare, and it does happen.

There was a woman on this list who died several days after her surgery in Nov 2009 from a heart attack and multiple organ system failure. She was 29 and her name was Valerie. She's is listed in the In Loving Memory section here.
 
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I know a woman who had a stroke during her VR surgery. She was in her early 40s, in very good health and had no discernible damage to her heart. It was not discovered until after the surgery when she could not be weaned from the ventilator or regain consciousness. She was pronounced brain dead several days after surgery, and life support was discontinued.

A friend's sister also had a stroke during her VR surgery, though it was not fatal, it left her totally disabled. Anesthesia does not come without risk, and a stroke is one of those risks. It's rare, and it does happen.

There was a woman on this list who died several days after her surgery in Nov 2009 from a heart attack and multiple organ system failure. She was 29 and her name was Valerie. She's is listed in the In Loving Memory section here.

True true... There was also this lady from a church I used to go to that had gallbladder surgery very routine. They didn't clamp the removal sight after the surgery and bile leaked into her. She was on life support and amazingly she came back, doctors said it was a miracle.

Also in the news today bunch of people in perfect health got killed in car accidents from all around the world. I bet if those people knew they were going to die today they wouldn't of got in the car... but then of course if they would never get in cars they wouldn't go anywhere :rolleyes:
 
this stuff scares me even more. i know a girl that was having mitral valve replaced and some how during surgery lost oxygen to the brain, she lived but will never be the same. she was only 14 at the time.
 
I'm surprised no one else here mentioned Valerie. Kind of sad that people have forgotten so soon, or maybe there aren't that many people still here.
 
I'm surprised no one else here mentioned Valerie. Kind of sad that people have forgotten so soon, or maybe there aren't that many people still here.

I remember Valerie clear as day even her face from her avatar. I remember following her post as a lurker almost 2 years ago. At the time I was visiting family in Arizona, I remember reading the post from her fiance and it floored me. Knowing that she was about to get married and had a child; it burned me deep. This is real life and serious!
 
My fave article*
entitled "Hancock II Bioprosthesis for Aortic Valve Replacement: The Gold Standard of Bioprosthetic Valves Durability?" by Tirone E. David, MD, Susan Armstrong, MS, Manjula Maganti, MS, in Ann Thorac Surg 2010;90:775-781, abstract at ats.ctsnetjournals.org/cgi/content/abstract/90/3/775? .
includes a table of "Independent Predictors of Death of All Causes" for their 1100-odd recipients of the Hancock II valve, over 25-odd years. Unfortunately, that table doesn't distinguish between early and late deaths, which would be helpful in this discussion. But I believe that its general conclusion would hold -- that "co-morbidities" are generally associated with, and "explain" most of the mortality. The table shows the following results:
Renal Failure, Hazard Ratio 2.168;
COPD, HR 1.579;
PVD, HR 1.561;
NYHA Class IV [That would normally mean waiting MANY YEARS too long!], HR 1.316;
LVEF <0.40, HR 1.316;
Hypertension, HR 1.241;
Coronary artery disease, HR 1.201; and
Age (in 5-year increments), HR 1.043.

It's worth remembering that some of these data go back over 25 years, and several of these "hazards" are probably better controlled in 2011 than they were 15 or 20 years ago, or even 10.

There's always a small chance that any surgery will go terribly wrong, and those cases are usually tragic, vivid, memorable, and newsworthy, out of proportion to their number. But the total risks of this surgery, albeit major surgery, are remarkably low, and the residual mortality risks seem to be dominated by co-morbidities. While it's true that going in healthier should generally make your prognosis better, I don't actually see any of the listed "Independent Predictors" that would be triggered between the time shortly before AV-deterioration symptoms begin, and the time soon afterwards. E.g., having early symptoms would make a patient NYHA Class II, not Class IV. I think a LVEF of 0.40 is pretty low, too, isn't it?

It's certainly true that the trend in AVR is to operate sooner, as the procedures become safer and more "routine". And the anticipation is often worse than the reality, too. But I still think there's a good argument for waiting for (minor) symptoms before leaving the waiting room.
 
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