repeat AVR looming after only 6 years!

[Jkm7]

<snip>

Yes - I know of Dr. Nicholas Kouchoukos in St Louis - I even spoke to several nurses and my own cardiologist about him the first time around. he is probably the most well respected cardio in the St Louis area, and definitely one of the most experienced. I chose not to go down that path the first time because my cardiologist would not have been able to oversee my post-op care because he is not on staff at the same hospitals as Dr. Kouchoukos.... thus one of the reasons I'm hesitant to look elsewhere this time.

I did have my first AVR at Barnes Hospital in St Louis, and I still go there for everything (was there Friday for my cath). I know my surgenon (Dr Marc Moon) is one of the if not the most well-repected and experienced at Barnes in terms of AVR, and people come from all over to see him...

I think I'm leaning more toward the opinion that if I do get a second opinion it will probably be similar to the first, but I may still do it for peace of mind, if nothing else!

Thanks again for all the replies and please keep them coming, especially if anyone else has an experience simliar to mine or know someone who does...

-Eddie

If you would like to use this very experienced surgeon but are hesitant because your cardio cannot oversee your care, give it a bit more thought. I had my surgery at Mass General and my cardio practices at an associated hospital but doesn't admit or round at Mass General. For the five days I was in the hospital (my second surgery), my cardio communicated with my surgeon and they agreed upon a MGH cardio to oversee my care while in the hospital and my regular took over my care immediately I came home. I saw him 10 days post homecoming but spoke with him several times and that worked fine for me.

If that surgeon is considered so superior, it is logical to know he would not ask an 'inferior' cardio to see his patients. The cream of the crop usually deal with others of the same ilk.

Whatever you decide, very best wishes.

 

[ALCapshaw2]

Good luck with the second opinion. It's never good news to hear about a member needing to do valve replacement surgery again.

Bottomline, artificial valves have a better track record of longevity. Speaking of records, here's another case of, "Geez, my doctors were really surprised that my tissue valve didn't last as long as expected." This stuff is beginning to sound like a broken record. And yes, I do respect those who opt for tissue for whatever reasons they have for doing so.

Bored... sure, let's talk lawsuits and malpractice... if one is really bored perhaps a research project on how lawsuits affect medical costs in this country might be a good way to pass some time.

-Philip

Philip -

It's not clear to me what you mean by "artificial valves".
I'm guessing you mean Mechanical but that is not totally clear.
To *my* mind, any non-native valve is artificial, whether Mechanical or Tissue.

'AL C'

 

[daveguy14]

..................

 

[Lily]

. . . At my annual checkup in July of this year, my doc noticed that the echo results were unexpectedly not good! I had a cath yesterday and they verified what I feared: my bovine valve that I received a little over 6 years ago is failing, and they are recommending it be replaced. My cardiologist and surgeon are "as surprised as I am" at how quickly it wore out. He said it's happened only a handful of times in his career, and there's no way to pinpoint a reason. Could have been a faulty valve, the way my body reacted with the valve, or both. He said he's never seen the functionality of the valve degrade that significantly in 2 years. I have no symptoms to speak of - I've even been playing more shows that are all-night ordeals than I have in years, and I feel great! They are recommending I go through the same surgery "6" incision with full sternum cut, and replace with a mechanical valve and replace the aorta as well. I asked them about more mininally-invasive techniques and what was available since 2004, and they said they are doing some like that in high-risk patients, but the preferred method was still to do the full sternum cut with 6-8 week recovery, espsecially for someone my age and health.

I'm hesitant to get back out there and start researching and talking to everyone I know, for fear that I will just confuse the issue. My heart tells me that I should just go with the cardiologist who has overseen my care for over 15 years, and the surgeon he recommends- the same surgeon who did my first AVR. But I can't help but think that there is another, minimally invasive option out there that I should explore. I am in agreemenet with my cardio that I should go with a mechanical valve this time to hopefully avoid another premature wear-out of a tissue valve... but I do have a few questions for the VR community:

1. has anyone experienced a tissue valve failing in 6 years or less? What did your docs say the reason(s) were, and what did they recommend? . . .

Hi Eddie -

Sorry to read this. Some of the comments have digressed of course :rolleyes2: but I wanted to ask you if any of the doctors suggested the sudden failing situation of your valve could be related to a stitch coming loose, taking into consideration your BAV condition? Your comment about them wanting to replace your aorta too caused me to wonder if this might be a suspected cause.

I mention it too because there is another member here whose tissue valve has suddenly and recently gone bad prematurely, but it is apparently due to a stitched area going bad (maybe from a related BAV connective tissue situation?) which may have happened no matter what the first valve may have been, tissue or mechanical. Her member name is LLJ.

 

[Lily]

Comments like this aren't necessary.

Comments like this aren't necessary?

. . . I feel like I've opened a can of worms here that I certainly did not MEAN to! :eek2: . . .

But Eddie, who began the thread because he's quite reasonably distressed about this premature tissue valve failure, mentioned a can of worms; and a lot of the rest of the thread is just off-topic joking about product liability.

I intended my comment to be helpful: Hi Eddie -

Sorry to read this. Some of the comments have digressed of course but I wanted to ask you if any of the doctors suggested the sudden failing situation of your valve could be related to a stitch coming loose, taking into consideration your BAV condition? Your comment about them wanting to replace your aorta too caused me to wonder if this might be a suspected cause.

I mention it too because there is another member here whose tissue valve has suddenly and recently gone bad prematurely, but it is apparently due to a stitched area going bad (maybe from a related BAV connective tissue situation?) which may have happened no matter what the first valve may have been, tissue or mechanical. Her member name is LLJ.

How is my comment not necessary?

 

[pikacat]

a lot of the rest of the thread is just off-topic joking about product liability.

It was not off-topic joking on my part. He asked a question about recourse. I answered it. I have a JD with a focus on health law. I also cleared up any misconceptions of law. It was my intention to have a proper answer to that question on this thread should anyone have similar thoughts about what they should do in case they also wonder about their options if they feel their valve failed. My answers, while addressing this as a hypothetical, were intended to provide a serious answer for people who wonder, as the OP did, what their recourse in this situation is. I hope that if anyone sees this post in the future, they'd know what sort of claims they might be able to bring, if they might be viable, and what sort of lawyer to seek out. That was it.

 

[Nancy]

regarding whether a valve is failing or a stitch has come loose, I can tell you what Joe's surgeron said. He said, "Joe, a stitch has come loose and is causing these symptoms", not that the valve was failing.

And he went in and fixed the stitch and did not do a whole valve redo.

So, I believe the two things are quite different.

 

[Lily]

regarding whether a valve is failing or a stitch has come loose, I can tell you what Joe's surgeron said. He said, "Joe, a stitch has come loose and is causing these symptoms", not that the valve was failing.

And he went in and fixed the stitch and did not do a whole valve redo.

So, I believe the two things are quite different.

Yes, they would be quite a different animal, wouldn't they. Occasionally, however, a diagnosis changes. And, of course, sometimes things change after the surgeon gets in there and really sees what's going on.

Really hoping everything went well for Laura on the 3rd.

Here's one of her later posts which should better explain what I mentioned earlier to Eddie; her doctors had earlier said or indicated that her valve had suddenly failed, then later changed their thinking that it could have been, as she says a "popped stitch," and anyone truly interested in the details can search LLJ's posts and threads:

"Just I wanted another chest cracking.....
Update! Saw Dr RockStar (aka Dr Leonard Girardi Columbia Pres NYC) Wish I had him the first go round.. Great doc,lots of time to discuss and very experienced. His view is the aortic valve is pulling away from it's setting having possibly "popped a stitch" Unusual in someone 5 years out. He will know more whne he goes in and takes an up close and personal look.
Plan: Repair stitch if possible (I asked him flat out to take it out and give me a ON-X-I don't need another surgery-but he felt it better to repair than replace at this time--we might need further discussion about THAT!) Replace the whole aorta as it is enlarged (who knew??)
POST surgery: No more threshold training or Triathlon racing. He said no one knows how threshold training affects a valve(in terms of power of heart contractility and stroke volume pressures)-if they tell you they do--they don't. As we all are painfully aware here :THERE IS NO REAL RESEARCH ON CARDIAC ATHLETES OUR AGE WITH THIS VALVE REPLACEMENT. I wish someone would do some. I can continue to run, bike, swim and generally have fun playing outside with my friends-just no all out efforts. I am A-OK with that.
Surgery Date: Aug 3
In enough time to join my cardiac buddies at the HArrisburg Marathon Relay in Novemeber!!!!"

Edit to add the link for Laura's "Oink to Tick" thread: http://www.valvereplacement.org/forums/showthread.php?35494-Oink-to-tick&highlight=

 

[Kathy McCain]

Hi Eddie,
I am truly sorry to hear that you will need another AVR sooner than expected. Please let us know how you are doing.

 

[joanie]

If you would like to use this very experienced surgeon but are hesitant because your cardio cannot oversee your care, give it a bit more thought. I had my surgery at Mass General and my cardio practices at an associated hospital but doesn't admit or round at Mass General. For the five days I was in the hospital (my second surgery), my cardio communicated with my surgeon and they agreed upon a MGH cardio to oversee my care while in the hospital and my regular took over my care immediately I came home. I saw him 10 days post homecoming but spoke with him several times and that worked fine for me.

If that surgeon is considered so superior, it is logical to know he would not ask an 'inferior' cardio to see his patients. The cream of the crop usually deal with others of the same ilk.

I agree, completely.

I live in South Carolina and had my AVR at the Cleveland Clinic. For me, the Cleveland Clinic was the best place to go. My cardiologist took care of me prior to surgery. While in Cleveland, one of the cardiologists on my surgeon's team, cared for me. The CC sent a copy of my records to my cardiologist and he was prepared to care for me when I returned. It was seamless and I wouldn't have done it any other way.

As far as I am concerned, the selection of a surgeon is completely independent from my regular care.

AND, I think a second opinion is always the way to go. I would look for someone who is especially skilled in re-dos.

Good luck!!
Joanie

 

[edjspi]

Thanks again to everyone for the responses... just to give an update:

I've spoken with my cardiologist and got some first questions answered. I have scheduled the surgery for 9/7 with the surgeon that did my first AVR, planning to get an On-X valve. I will be talking to my surgeon again with more questions in the next few weeks, and getting a second opinion from another surgeon at another hospital as well.. but my guess is that they will give me the same advice and ultimately, the valve decision is up to me!

now I'm moving to preparation mode for next few weeks... lots more to plan for this time around - 3 kids, job that takes a ton of time, and wife who works more than ever at her job!

thanks again
Eddie

 

[ALCapshaw2]

Did you ask your surgeon how many Re-Do's he has done in the last 6 and 12 months (and in his career)?
Same Question about how many Aorta Repairs / Replacements he has done.
And then ask about any 'complications' (i.e. morbidity and mortality numbers).

It takes a while to become comfortable asking those kinds of questions, I KNOW, but that is important information to have when selecting a surgeon to open you up and work on your heart!

'AL Capshaw'

 

[Lily]

Thanks again to everyone for the responses... just to give an update:

I've spoken with my cardiologist and got some first questions answered. I have scheduled the surgery for 9/7 with the surgeon that did my first AVR, planning to get an On-X valve. I will be talking to my surgeon again with more questions in the next few weeks, and getting a second opinion from another surgeon at another hospital as well.. but my guess is that they will give me the same advice and ultimately, the valve decision is up to me!

now I'm moving to preparation mode for next few weeks... lots more to plan for this time around - 3 kids, job that takes a ton of time, and wife who works more than ever at her job!

thanks again
Eddie

Thanks for the update and please keep us posted, Eddie. Best wishes to you

And AL, those are good points, good reminders

 

[hook]

I am not sure where you live, but one of the pioneers in this surgery is at Vanderbilt in Nashville, TN. His name is Dr. Michael Petracek, and he invented many of the procedures we all have. He passed the 10,000 valave surgerys over ayear ago; the man is a machine. People come from all over the world to get his skills, and would easily say he is rated one of the top three valve guys in the world. He can do minimally invasive for many things, but I think it depends on your situation. I was done this way, and I am lifting weights after only 9 weeks.

If you would like his number send me a pm. I will warn you though, he will not have warm conversation about your options and what brand of valve you may want to consider. He will evaluate you, fix you, and send you on your way. Whwn it comes to this specific skill set, this man is an artist.

 

[ALCapshaw2]

Hook -

Interesting comment about Dr. Petracek and Valve Selection Conversations.
It is my understanding that he only (or at least primarily) uses St. Jude Valves.
Do you know if that is true? Do you know if he has used other valves?

It is also my understanding that Dr. Petracek is (or may be) the most prolific user of the Thoracotomy Approach for Valve Replacement. Do you know if that is also true?

 

[hook]

Hook -

Interesting comment about Dr. Petracek and Valve Selection Conversations.
It is my understanding that he only (or at least primarily) uses St. Jude Valves.
Do you know if that is true? Do you know if he has used other valves?

It is also my understanding that Dr. Petracek is (or may be) the most prolific user of the Thoracotomy Approach for Valve Replacement. Do you know if that is also true?

He is a St. Jude user from what I know. As for the Thoracotomy approach, I am not sure. I was just happy that he would tune me up.

 

[Lisa2]

Eddie,
I had AVR with a homograft two months after my 31st birthday. I let them crack my chest wide open I figured, hey, take all the room you need. Seriously, I lost my brother to this same disease in 1991, after his 4th OHS. He was 14. He was born with a mono-cuspid aortic valve.

My surgeon and cardio said I would most likely get 7-15 yrs out of the homograft. As I get closer to the 7 year surgical anniversary date, I'm questioning myself about my previous decision. I can *feel* that things are changing. Also, my husband can hear a difference in the way the valve sounds..especially in the last few months. I'm really leaning toward mechanical this time, wish I done it 7 years ago, and will opt for the full sternotomy. It's different for all of us, but my vote is let them do what they need to do.

Best wishes,

Lisa

 

[Lisa2]

regarding whether a valve is failing or a stitch has come loose, I can tell you what Joe's surgeron said. He said, "Joe, a stitch has come loose and is causing these symptoms", not that the valve was failing.

And he went in and fixed the stitch and did not do a whole valve redo.

So, I believe the two things are quite different.

I forgot the mention in my reply that I have some leaking around some stitching and I'm wondering if that will contribute to needing AVR sooner than later!

 

[ALCapshaw2]

I forgot the mention in my reply that I have some leaking around some stitching and I'm wondering if that will contribute to needing AVR sooner than later!

When I read this comment, my first thought was "I wonder if she had a BAV" and sure enough, your profile confirmed that fact.

We have had other BAV patients who have developed Aortic Aneurysms, and a couple who had failing stitches, due to Connective Tissue Disorder(s) which often accompany BAV, especially in patients who are considered to have Congenital Heart Defects. If/when you interview surgeon(s) again, be sure to ask about their experience level in dealing with BAV and Connective Tissue Disorders. (I know that Dr. McGiffin is often considered to be the High Risk Guy at UAB and expect he would have recognized the signs of CTD if they existed at the time of your surgery).

'AL Capshaw'

 

[Lisa2]

When I read this comment, my first thought was "I wonder if she had a BAV" and sure enough, your profile confirmed that fact.

We have had other BAV patients who have developed Aortic Aneurysms, and a couple who had failing stitches, due to Connective Tissue Disorder(s) which often accompany BAV, especially in patients who are considered to have Congenital Heart Defects. If/when you interview surgeon(s) again, be sure to ask about their experience level in dealing with BAV and Connective Tissue Disorders. (I know that Dr. McGiffin is often considered to be the High Risk Guy at UAB and expect he would have recognized the signs of CTD if they existed at the time of your surgery).

'AL Capshaw'

Al,
Thanks for the response and thanks for helping me since I first joined in 2003. My original user name was Lisa and I believe my profile was deleted because I didn't post for a while. I didn't have CTD when the valve was replaced. My BAV is congenital. I'm considered high risk (hence the need for Dr. McGiffin) because of my family history. My brother died during his 4th OHS (born with a monocuspid valve) - an aneurysm was one of the main causes. My mother and uncle also have BAVs. My uncle's has been replaced with a mechanical valve and my Mom has been considered mild to moderate for years. Here's hoping she never goes through it. Thanks for listening to me ramble

As for me, I'm hoping to only have one more surgery. I hope I can get at least 50years out of the next one.