What Are Mortality Rates for Valve-Sparing/Aneurysm Repair Surgeries

[cbdheartman]

Sorry to bother with yet another question. You all are so great. Can you tell that I am a nervous nelly and an information overload kind of guy.

I am trying to drill down on this number: What are the mortality rates for Valve-Sparing/Aneurysm Repair Surgeries in the hand of top surgeons like Svensson at Cleveland Clinic or Duke Cameron at Hopkins? Does that number go down for someone like me who is younger and in good health and asymptomatic?

Also, what are the greatest risks of surgery? Are people generally dying from complications like infection or pneumonia? Or are people often dying on the table?

Also, sort of unrelated, did anyone find out after surgery that things that one thought were non-symptoms were actual symptoms? I have squirrely pains in my chest area that I've thought to be psychosomatic and GERD related. I wonder if they might have something to do with the aneurysm.

A few final questions (for now until I think of something else): does a stabilized aneurysm really mean anything? Does it mean less likely to rupture?

What sorts of post-operative -- and I mean after recovery -- limitations were you put on? Will I be able to run, play basketball, etc?

During my life I have gotten weird tissue/muscle pulls. For instance, in 2004, I had a very weird chest wall muscle pull that I couldn't attribute to anything. I seem more apt to these sorts of weird muscle issues. Could these be connective tissue related?

THANKS IN ADVANCE TO ALL OF YOU!! I am sorry if I driving you insane!! Imagine what my wife is going through!

 

[bugchucker]

Yes people die on the table and a few get sick and/or die from pneumonia in recovery, that number (keep in mind I'm no doc or expert) is a fraction of those that die from disection/rupture...

My doc told me after I found out about my needed surgery that everything was psychosomatic, you feel strange things, everything is magnified, etc. In my opinion he was right and wrong. Knowing there is a problem with your ticker creates lots of anxiety=interpreting feelings differently...Feeling "things happen" in your chest needs to be addressed with your cardio and surgeon.

In my non-professional opinion no...If you have an aneurysm you have risk, period...

Again, no professional here, but I'm young and in good health. I have every expectation of returning to a life of scaring the hell out of my cardio doc and surgeon...(skiing off rediculous cliffs, summiting the highest mountains in my radius, etc. For 1.5 months I am restricted to lifting no more than 10 lbs, 40 lbs at 2.5 months, 80 lbs at 3.5 months and no restrictions at 4.5 months. I'm in the process of all this of course and everything is subject to change if I do something stupid like trying to wrestle with my 7 year old son and damage my sternum...

Hang in there and as Ross said, go with your gut (or in this case your ticker)...

Sorry to bother with yet another question. You all are so great. Can you tell that I am a nervous nelly and an information overload kind of guy.

Also, what are the greatest risks of surgery? Are people generally dying from complications like infection or pneumonia? Or are people often dying on the table?

Also, sort of unrelated, did anyone find out after surgery that things that one thought were non-symptoms were actual symptoms? I have squirrely pains in my chest area that I've thought to be psychosomatic and GERD related. I wonder if they might have something to do with the aneurysm.

A few final questions (for now until I think of something else): does a stabilized aneurysm really mean anything? Does it mean less likely to rupture?

What sorts of post-operative -- and I mean after recovery -- limitations were you put on? Will I be able to run, play basketball, etc?

THANKS IN ADVANCE TO ALL OF YOU!! I am sorry if I driving you insane!! Imagine what my wife is going through!

Your not driving me insane, if you don't ask the questions, you'll never know other's experiences...Again, I'm no expert or doctor...

 

[Blanche]

cbdheartman

cbdheartman

dear friend:

it seems to me that when you settle down and release your brain instead of your emotions you will be able to find something that at least approximates your concerns. Please know that we all here care about folks who are wandering all over the board in search of that which might help the their circumstances.

Good person, you are wandering all over the place..up and down and sidewise. All responses are acceptable ones. Now it is time for you to get centered and deal with some of the specific concerns that you might have.
The what if this, and what if that is ok but, does it really address the concerns that you have. I think not...but I have been wrong before.

There are folks here who will help you in any way that you choose. Perhaps you could be just a bit more specific about your concerns...None, the less, if I am in left field, please ignore me....or strike me out.

I know that when your concerns are met and your heart problems have been solved that you will be back here. I just wish that could be sooner than later.

Kindest reagards,
Blanche

 

[ALCapshaw2]

The numbers you are looking for from specific Surgeons would best be obtained from Those Surgeons.

That kind of data is hard to find and probably impossible to find from Free Sources. WE as fellow Heart Patients are NOT likely to have that kind of information.

Numbers I have seen reported (and I don't know the source) are 1% risk of mortality and 1% risk of morbidity for Valve Replacement Surgery on a National Basis. The Links to reports on Aneurism Risks quoted some other numbers for Aneurism Repair Surgery which varied between different studies / hospitals (2 to 5% I think).

My *Hunch* is that you may be more afraid of the surgery than you are of the Aneurism and are trying to make a case for delaying the surgery. That's understandable but not very helpful.

I suggest that you talk with the Surgeons again, either in an office visit or via telephone if they will agree to a call. Hopefully the Surgeons can put things in a better perspective for you and calm your fears. You need to be able to take that "leap of faith" with confidence in your surgeon. Without that confidence, you will likely be 'all over the map looking for a way out'. (sound familiar?)

MANY of our members report a sense of Peace and Calm coming over them once they reach a state of Acceptance and turn their fears over to God or their Families or their Surgeon. I hope you can find that place.

'AL Capshaw'

 

[bugchucker]

Amen! It can be a challenging journey, but you can do it!

My *Hunch* is that you may be more afraid of the surgery than you are of the Aneurism and are trying to make a case for delaying the surgery. That's understandable but not very helpful.

MANY of our members report a sense of Peace and Calm coming over them once they reach a state of Acceptance and turn their fears over to God or their Families or their Surgeon. I hope you can find that place.

'AL Capshaw'[/QUOTE]

 

[Reddog]

I totally agree with Al - you need to be asking your individual surgeon candidates about their specific mortality and complication rates for the surgeries that you are seeking. The national rates should be of far less interest to you than your own surgeon's percentages... and the percentages vary dramatically from surgeon to surgeon because experience and skill is critical in this kind of surgery.

Yes, your chance of survival will be better because you are young and in good health, but your surgeon should be able to give you a figure that takes this into account.

(I asked several candidate surgeons their mortality rates for the kind of surgery that I will be having, and guess what... this helped determine which surgeon I chose!)

Red

 

[skeptic49]

A better question you should maybe ask yourself is what are the mortality rates if you dissect or rupture!

Best wishes,

Jim

 

[BillCobit]

The numbers you are looking for from specific Surgeons would best be obtained from Those Surgeons.

That kind of data is hard to find and probably impossible to find from Free Sources. WE as fellow Heart Patients are NOT likely to have that kind of information.

'AL Capshaw'

Yep, that was my frustration when I was surgeon shopping...and I wasn't inclined to believe anything a surgeon told me verbally about his skill or success rate. One of the reasons I chose the Cleveland Clinic is that they DO INDEED publish their stats for all to see, and they are impressive:

http://my.clevelandclinic.org/Documents/Medicine/HVI283082A_LR.pdf

I found this forthright presentation to be far more reassuring than the arrogant bum at St. Joe Shmo community hospital bragging "I can fix anything!"

 

[ALCapshaw2]

A better question you should maybe ask yourself is what are the mortality rates if you dissect or rupture!

Best wishes,

Jim

Yes, I thought about adding a line about the option of Doing Nothing (after I had already submitted my previous reply).

The numbers I recall (and I do NOT recall the source) are that the Survival Rate for a Ruptured or Disected Aneurism is LESS THAN 10% and many have debilitating collateral damage (as Ross reported from his experience). He survived ONLY because he was air-lifted to the Cleveland Clinic "just in time".

Many of those "Sudden Death" reports we read / hear about on the News (e.g. athletes falling over dead on the field or court) are due to undiagnosed Aneurisms or Heart Valve Failure.

After learning those stats, most people opt for the Risk of Surgery over the Risk of a Ruptured or Disected Aneurism.

Are you convinced yet?

I don't know what else we can tell you.

 

[Ross]

IF it doesn't kill you immediately, your chance of surviving is only 3 to 5%. It was presented to me this way, "Ross you need emergency surgery right now. There is only a 5% chance of you making it out alive." My answer was, "Yeah, well it's 0% if you don't do something, so do something. That's the last thing I remember and woke up 30+ days later. During the course of it all, I had a stroke, DVT, pneumonia, renal failure, respiratory distress syndrome, and a whole host more things go wrong. I promised Al Capshaw when I go through my papers again, I'll post what all happened to me.

Dr. McCarthy, my surgeon, came to see me a couple WEEKS after leaving ICU because he hadn't heard how I was doing. Anyone that knows Dr. McCarthy knows that he doesn't just come visit someone. He did me. He looked at me and shook his head then said, "For all medical and scientific reasonings, you should not be sitting here talking to me right now." He has no idea why I made it. I coded on the helicopter just before landing. The flight physician and nurse were squeezing bags of blood into me all the way in.

If this post doesn't convince you, nothing will.

 

[Ross]

I found this forthright presentation to be far more reassuring than the arrogant bum at St. Joe Shmo community hospital bragging "I can fix anything!"

Yeah and I bet under he's breath he was saying, "And if I can't fix it, I'll fix it so no one else can either."

 

[Tom F.]

I had a valve sparring procedure done in 2002 to fix an aneurysm and at that time was told that the risks from that procedure were basically no different than any other open heart surgery.

 

[dick0236]

THANKS IN ADVANCE TO ALL OF YOU!! I am sorry if I driving you insane!! Imagine what my wife is going through!

You need not worry about driving us insane since we have all "been there, done that". You cannot find YOUR stats on the internet, in books or on forums like this....since YOU ain't been there yet. Once you have done your "due diligence" working with your medical team....go for it. Like others who have posted, I get the feeling that your primary concern (and rightfully so) is surviving the surgery. That is an unknown that many, many have faced and come thru it OK. This is no longer "cutting edge surgery".

Cut your wife some slack and don't bombard her with all the "what ifs". Remember that with two young children, she also has many concerns and fears.

Good luck to you.

 

[cbdheartman]

You need not worry about driving us insane since we have all "been there, done that". You cannot find YOUR stats on the internet, in books or on forums like this....since YOU ain't been there yet. Once you have done your "due diligence" working with your medical team....go for it. Like others who have posted, I get the feeling that your primary concern (and rightfully so) is surviving the surgery. That is an unknown that many, many have faced and come thru it OK. This is no longer "cutting edge surgery".

Cut your wife some slack and don't bombard her with all the "what ifs". Remember that with two young children, she also has many concerns and fears.

Good luck to you.

Thanks so much for that. I actually am doing pretty well on a day to day basis. I am a nervous nelly by nature and so this doesn't help. Like some on this board, I am a believer and am finding consolation in that and the prayers of friends and family. I have a deep fear of death which is surprisingly not bothering me as much as one would think with this reality in front of me. I am seeing this journey as a gift in some ways.

My concern about surgery is the death rate and also the chance that I start the whole timeline of future surgeries earlier than I need to. But no one can tell me what might happen with my aneurysm.

Everyone tells me -- and if anyone thinks differently let me know! -- that I will have to have the surgery some day. That keeps bring me back to the thought: well then why not now? I am going to have to take the risk of surgery sometime. The surgeons I am considering are among the best in the business and the mortality rate for this surgery cannot get much lower. So why not now when I have sort of primed myself for it? There isn't much difference between 4.9 and 5.0 or 5.1/5.2 (where Svensson recommends surgery for my height). So why wait?

On the flip side, I wonder whether I can wait and see. Maybe the thing will just stay there for years.

But then I push back and say, "That whole time you will be wondering whether that little pain is the beginning of the big one."

I find myself limiting myself athletically -- I am not sure I am going to run even though they say that is okay -- limiting myself in how often I pick up my kids or what I pick up. If that is how I am going to live until the day I reach the magical number, why not just get it over with.

Thanks for letting me think this stuff "out loud" with all of you. Please continue your helpful and wonderful comments.

 

[Ross]

The death fear: There isn't one of us that didn't fear it. Some of us had no time to think about it, most of us did, and by far, waiting is the worst part of the whole deal. I think your very correct in limiting your activities and picking up heavy objects until this is taken care of. Let me put this the best way I know how, In the 8 years I've been on this forum, I have yet to see or hear of someone die from the surgery if it's an elective and not emergent. If it gets to the point of emergent, you already know what I've said about that.

What disturbs you the most, whether you know it or not, is not having control of the situation. Humans by nature are programmed to be in control and this is one thing where you have absolutely 0 control. If you believe in God, your simply going to have to place it all in his hands and go forth. Whatever will be, will be. As I said above, in 8 years and 6600+ members through the gate, I have seen nor heard of anyone dying from surgery BEFORE rupture or dissection occurs. I cannot say that for those that had them rupture or dissect. I think there is only 3 or 4 of us here that survived.

 

[Jkm7]

The death fear: There isn't one of us that didn't fear it. Some of us had no time to think about it, most of us did, and by far, waiting is the worst part of the whole deal.

Not exactly. Not for me.
I've had two OHS (in four years) and I really did not fear death. I feared I would NOT die but would suffer debilitating stroke or parallysis or horrid quality of life issue and would rather I would have died than be so totally incapacitated. But that is only my personal viewpoint.

But without question I cannot agree more the waiting is the worst part. It is absolute torture day by day waiting for date of surgery to finally arrive.

 

[bugchucker]

I find myself limiting myself athletically -- I am not sure I am going to run even though they say that is okay -- limiting myself in how often I pick up my kids or what I pick up. If that is how I am going to live until the day I reach the magical number, why not just get it over with.

I would recomend you follow your cardio's advice on exercise. The better shape you in pre-surgery, the better you recover (in most cases), just don't over do it. Do you happen to have a heart monitor you can use for jogging/walking? My doc (post surgery) does not want me more than 30 bpm above resting heart rate. Its comforting for me to feel like I have a sense of what is going on "in there" while exercising.

Sounds like your on the right path mentally in terms of coming closer to a decision. Your family and friends will be your bedrock for some time now. Cheers and best wishes!

Phil

 

[tobagotwo]

It sounds like you are referring to the David procedure, whish is more commonly used than the Yacoub procedure. Both procedures are still being used and modified, but the David Procedure nearly does away with reoperations for the same issue.

Stanford says their rate is 1.2% for the David procedure (valve-sparing procedure). Johns-Hopkins puts theirs at 1.5%. St luke's Roosevelt is at 2.3%. I was unable to locate Cleveland Clinic's numbers, but they would be at the same level.

For perspective, these numbers are lower than the statistical chance of an untreated 4.5cm aneurysm (or even a smaller one) causing death to its owner over the next year, according to charts that have been posted elsewhere.

Best wishes,

 

[Maryka]

Hi again, Neighbor!

I guess it is good advice to exercise as much as your doctor recommends, BUT, having thought I had Marfan syndrome since 1991, and meeting lots of Marfan guys (many of whom are 6 feet 4 inches, hint, hint, hint), I would wonder about the wisdom of lots of exercise at this time. I have known a lot of not-quite-Marfan people who dissected while exercising. I chose to give up aerobic exercise as I was advised and my aneurysm stayed stable at 4.6 cm. until my aortic valve went bad.

Please pray but be careful!

 

[Maryka]

By the way, my good freind Patricia, born with Marfan, had several OHS surgeries, but died at age 60 after her last OHS because she was forced to use her neighborhood medical establishment and got C-def (however it is spelled). My experience was that Hopkins practiced excellent infection control. I bet the other top-contenders for your surgery do too. Still, you should look at the incidence of that infection, not just pneumonia.