repeat AVR looming after only 6 years!

[edjspi]

Hello everyone at VR!

I found this site in early 2004 when I was facing my first AVR after living with a worsening BAV my entire life. VR was a tremendous resource for me and I learned SO much about the subject from all the wonderful people here. THANK YOU SO much! I promised myself that I would stay involved after my AVR and become a resource for others here, but I did not follow through unfortunately, and I really do feel bad about that.... but now I suppose I have a chance to make up for it I was told yesterday by my cardiologist and surgeon that I need to have it replaced again....

I had an AVR with a bovine valve in April 2004 at the age of 29, at the time I was married with 1 child age 11 months. Minus a few days where I had rib muscle spasms that were the most rediculously painful thing I have ever experienced, my surgery was a screaming success. I was working online in 1 week, driving in 4 weeks, back to work in 6 weeks, and played a show on drums (I'm also a part time, semi-pro musician) with my bandbin 8 weeks post-op. My annual checkups were perfect, last had an echo in April 2008. since the AVR I've had very few issues, I live a completely normal , very active life. Had 2 more kids, changed careers a few times and started my own businesses, playing more clubs than I have in years....

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?

2. Is there any recourse available if in fact the valve was a 'lemon'? Is there any way to even prove that?

3. considering I'm 35, facing my second AVR, and very happy with my cardiologist, should I reach out to other hospitals and groups to see if there are other, minimally invasive techniques I should consider out there? I'm hesitant to get a second opinion from someone I don't know at all, but I don't want to miss out on something that might be better for me either...


Thanks in advance for your help and advice.... and good to see everyone here again!
-Eddie

 

[dick0236]

3. considering I'm 35, facing my second AVR, and very happy with my cardiologist, should I reach out to other hospitals and groups to see if there are other, minimally invasive techniques I should consider out there? I'm hesitant to get a second opinion from someone I don't know at all, but I don't want to miss out on something that might be better for me either...
-Eddie

I can't give an opinion on #1 or #2. With an apparent failure after such a short time, I think I would get a second opinion before going thru surgery again. Your cardio may welcome another opinion. I know very little about "minimally invasive heart surgery", but I wonder if it should be of major concern to a young, healthy person. A full OHS thru the sternum should not be a problem unless there are other circumstances. Good luck!

 

[mainframe]

Eddie, sorry your back after only 6 years. My bovine valve lasted 7 years. Didn't really get a solid reason for the failure, my original surgeon said it would probably last 12-15 years. My second surgeon suggested I probably only got 1 good year out if it.

I can't address the minimally invasive techniques but I felt my choices in November in terms of vavle choices/techniques weren't alot different than they were 7-8 years ago. Things are progressing, just not as fast as we would all like.

 

[Ross]

Eddie I don't know what to say. Get the second opinion, but honestly, I think your going to get the same answers. Sorry you have to endure this yet again.

 

[pikacat]

2. Is there any recourse available if in fact the valve was a 'lemon'? Is there any way to even prove that?

3. considering I'm 35, facing my second AVR, and very happy with my cardiologist, should I reach out to other hospitals and groups to see if there are other, minimally invasive techniques I should consider out there? I'm hesitant to get a second opinion from someone I don't know at all, but I don't want to miss out on something that might be better for me either...

-Eddie

2. that's a complicated products liability case. you'd want to talk to an attorney who specializes in defective medical devices. you seem to be positing that it was manufactured incorrectly. a good products liability attorney with expert witnesses he trusts could review your case and have a better idea. one issue here though is that your only damages are lost time because you always expected a second surgery. while we tend to be indignant to these things, in a products liability case you would need to show that the defect caused your injury. in this case, from what i can see, showing the manufacturing defect may be difficult enough. but showing an actual injury aside from emotional distress would be pretty much not possible. but then again, not a lawyer looking at your case, just someone on the internet. you'd absolutely need to talk to a very good products liability lawyer. it's a highly specialized field.

3. i was told that with 2nd valve surgeries, minimally invasive procedures were very difficult bc everything was all scarred up and difficult to maneuver. my surgeon did not recommend it.

 

[edjspi]

thanks all for the replies so quickly!
Chris - why did you change surgeons for the second AVR? did you consider going with another tissue valve or did you decide on the mechanical valve for the same reason I am: to hopefully not go through the surgery again?

I'm thinking that I will get the same answer on a second opinion also... why I'm tempted to stick with the people I know


-Eddie

 

[edjspi]

3. i was told that with 2nd valve surgeries, minimally invasive procedures were very difficult bc everything was all scarred up and difficult to maneuver. my surgeon did not recommend it.[/QUOTE]

pikacat - that makes sense because yesterday my surgeon said that they first step would be a CT scan to see how much scar tissue is there, because he would want to 'cut out all that' when he goes back in...

 

[james]

Scarring is a major issue on second cuts and limits any chance of minimally invasive surgeries. It took two extra hours to cut out my old tissue. I will say that I am surprised at 29 you got a bovine valve instead of a mechanical one as for the most part they are the ones that last the longest.

As someone who has had two open heart operations by age 40 I will tell you I never want a third.

 

[ALCapshaw2]

I'm thinking that if you need to have your Aorta repaired or replaced, most surgeons would prefer to do a full sternotomy for better access to assess and 'do what needs to be done' to your aorta. FYI, BAV and Aortic Aneurisms are often a sign of "Connective Tissue Disorders". See the BAV and Connective Tissue Disorder Forum for LOTS of information on these issues.

BTW, Surgery of the Aorta is More Complex than 'mere Valve Replacement', especially if your have 'issues' in the Aortic Arch where there are many branches coming off the Aorta. Ask any surgeon you interview about how much experience they have doing surgery of the Aorta and recognizing and dealing with defective tissues.

FYI, There just happens to be a Famous Aorta Surgeon in St. Louis, Dr. Nicholas Kouchoukas, who has taught his specialty to other surgeons, including the top Aorta Surgeon at the Mayo Clinic, Dr. Sundt.

'AL Capshaw'

 

[Bill B]

Here's what Lars Svensson of the Cleveland Clinic had to say last year about your main question:

For patients with ascending aortic and arch surgery - acquiring just the first part of the arch to be replaced we can do that mini invasively including an aortic valve repair or replacement. When I first was developing the mini invasive technique, we replaced the entire aortic arch and also the elephant trunk procedures using the mini invasive J incision.

However, we found it took a bit longer and although not statistically significant we felt the results were not as good. Similarly, for reoperative aortic valve or ascending aorta surgery we can do them mini invasively but prefer not to unless there is a reason such as a patient is a Jehovah witness and the blood loss may be less. Nevertheless, all isolated mitral valve repairs or replacements, aortic valve repairs or replacements and ascending aortic aneurysms I will do as mini invasive procedures.

http://my.clevelandclinic.org/heart/webchat/aorta_aortic_valve_webchat_transcript_svensson.aspx

 

[tprice54]

Sorry to hear your valve was short lived. I just wanted to pipe in with some facts on the "lemon law" part of your post. In the US, medical devices are covered under a special federal law that does not allow law suits UNLESS it can be proved the device (valve) was not made per the specifications approved by the FDA. It is called the preemption law.

 

[pikacat]

Sorry to hear your valve was short lived. I just wanted to pipe in with some facts on the "lemon law" part of your post. In the US, medical devices are covered under a special federal law that does not allow law suits UNLESS it can be proved the device (valve) was not made per the specifications approved by the FDA. It is called the preemption law.

kind of. it's actually that the constitution states that the "laws of the united states" shall be the supreme law of the land. therefore, federal law may preempt state law. there's no special law called the preemption law. riegel v. medtronic is a supreme court case regarding medical devices and courts have been split in interpreting it. one should absolutely talk to a products liability lawyer licensed in the state in which you live to know how the courts are dealing with medical devices.

http://www.faegre.com/showarticle.aspx?Show=10797

riegel does state that the fda regs constitute federal law that state tort law may not preempt. however, some courts have interpreted this liberally to mean that, 'the MDA does not prevent a state from providing a damages remedy for claims premised on a violation of the FDCA, and on that basis allowed a product liability claim involving a PMA-approved device to proceed. According to this view, a medical device manufacturer could be liable under state tort law for any departure from its approved PMA. Thus, under Hofts, common-law tort claims that many thought were preempted by Riegel—such as strict liability and implied warranties—may proceed.'

products liability is very complicated. absolutely consult with a lawyer licensed in your state.

(this is not legal advice, i'm just some person telling you to get real legal advice if you think you have a medical device products liability issue!)

 

[mainframe]

Hi Eddie,

I choose a mechanical to hopefully avoid a third surgery. The first one was easy, the second ended up almost killing me. Hopefully a third one won’t be necessary. Dr Miller didn’t even discuss a tissue valve for me.

I changed surgeons in part because of insurance coverage. My first surgeon was out of network and the referred in network surgeon said several things that a patient wouldn’t want to hear, “how complicated the surgery was”, “he may not replace the aorta which had been measured at 5.0 cm. because of complications from where my coronary arteries were” and best of all “we all have to go from something”. Not words of confidence. He even had scheduled my surgery without my knowledge. I got a call from his office asking what time I wanted to come in for my pre-op appointment since my surgery had been scheduled for the following Tuesday. HUH? First time I fired a surgeon. I sent my cardio an email saying “I don’t think so”.

It was at that point I decided why not go to the best. My coverage allows for out of network self referrals through a third party insurer (Beechstreet) so I sent my records to Cleveland Clinic and Stanford. Stanford had an opening a lot sooner and I really needed the surgery as the bovine valve was going downhill quickly. I’m not sure I’d still be here if I hadn’t gone to where I did and received the excellent care I did. I was sick.

 

[Lynlw]

One reason I might consider getting a 2nd opinion, is I would want to make sure your surgeon who did your first surgery has alot of expereince with REDOs. IF he does and you are happy with him, I would probably get a 2nd opinion just to hear what someone else would recomend, but go to your first surgeon, because IMO I think it is helpful having the same person do your surgeries, since he knows exactly what he did/how he did it, unlike other surgeons who can just look at your tests or read the report.

Ps, I know how disapointing it is to find out you need surgery much sooner than expected. Justin's dacron conduit should have lasted just about forever, but he only got 2 years out of it.
I just wanted to add, for people who are young and healthy with no other medical problems going into their 2nd surgery the success rates are very good, especially with experienced surgeons

 

[ALCapshaw2]

Eddie,

You may be interested in some of the recent studies of Valve Durability

"Are allografts the biologic valve of choice for aortic valve replacement in nonelderly patients?
Comparison of explantation for structural valve deterioration (SVD) of allograft and pericardial prostheses."
Nicholas G. Smedira, Eugene H. Blackstone, Eric E. Roselli, Colleen C. Laffey, and Delos M. Cosgrove (of CC)
Journal of Thoracic Cardiovascular Surgery 2006:131:558-564
DOI: 10.1016/j.jtcvs.2005.09.016
OR http://jtcs.ctsnetjournals.org/cgi/content/full/131/3/558

Aortic valve replacement in patients aged 50 to 70 years:
Improved outcome with mechanical versus biologic prostheses
Brown, Dearani, Sundt, McCregor and Orszulak (some or all? from Mayo Clinic)
Journal of Thoracic Cardiovascular Surgery 2008;135:878-884
DOI: 10.1016/j.jtcvs.2007.10.065
OR http://jtcs.ctsnetjournals.org/cgi//content/full/135/4/878

Aortic Valve Replacement:
A prospective Randomized Evaluation of Mechanical Versus Biological Valves in Patients Ages 55 to 70 years
Stassano, Tommaso, Monaco, Iorio, Fepino, Spampinato, and Vosa (from Italy)
Journal of American College of Cardiology 2009;54:1862-1868
DOI: 10.1016/j.jacc.2009.07.032
OR http://content.onlinejacc.org/cgi/content/full/54/20/1862

'AL Capshaw'

 

[catwoman]

Eddie:

You haven't detailed in what way your AV has "worn out." One thing I would ask your doctors is if your age was a factor. Seems like I've read several places that tissue valves need replacing at an earlier age the younger you are.

You're in the St. Louis area, and there is one very good hospital there -- Barnes-Jewish, which is #12 on the U.S. News & World Report rankings for 2010-11. There should be surgeons on the staff there who are well-versed in AV redos. That may be where you had your first AVR.

 

[drivetopless]

HI, Eddie-
Just wanted to chime in. So sorry you are facing a redo so soon. You are still young, so hopefully you'll have another good recovery from round 2. From what I've been reading as I research the type of valve I want, it's sort of a crap shoot (other than age of implantation being a factor) with the tissue valves on longevity. They can't tell who will have one that lasts longer. They do offer some nice benefits and are the best choice for some as long as they don't wear out too soon. What I'm finding is that most surgeons have a personal preference on what they want to install. Some seem to work with one or two particular types of valves or to have a preference for tissue over mechanical. This is probably good, because they become experts at working with that particular valve.

So, go get another opinion or two from some surgeons who are known for their mechanical valve prowess (like the On-X or the St. Jude Regent which seem to be the preferred mechanicals of today) since that is what you are thinking of going with next time.

You also have to watch out for those surgeons who are getting kick backs from one particular valve manuf, though, to make sure you are getting an unbiased opinion.

As far as minimimally invasive technique--if they are replacing the aorta, too, they may need more room to work. The surgeon's I've consulted with indicated if my aorta needs to be replaced I could end up with a larger incision. Still TBD.

So far, for me, the On-X is winning as a choice because it so far has been superiour for not having issues with pannus tissue growth over time. Pannus growth can be an issue (another reop) if you have a smaller sized mechanical valve. (google it). On-X and SJM Regent both have great hemodynamics.

I'm not afraid of long term anticoagulant therapy thanks to the folks on this forum.

 

[Luana]

My first surgeon was out of network and the referred in network surgeon said several things that a patient wouldn’t want to hear, “how complicated the surgery was”, “he may not replace the aorta which had been measured at 5.0 cm. because of complications from where my coronary arteries were” and best of all “we all have to go from something”.

"We all have to go from something." Shut the front door! What a crappy thing to say.

I remember when you were in the hospital because your surgery was about a week-and-a-half before mine. I thought of you when I was in the hospital and hoped that when I got home I'd read that you were better and home, too, only it didn't play out that way. I know you had one helluva long haul and I'm glad you were at Stanford, too.

I think Bill B should be canonized for sainthood for all the news and updates he posted here and asking for prayers and going to Stanford to visit your wife; it touched me. That was one long ongoing thread and I'm so glad it had a good ending. Valerie had her surgery the week before mine, and she didn't make it. I still think of here. Those were some dark days around here.

Eddie, I'm sorry I've digressed here, but, since you are a BAV person, you really do need someone above average. We want you to be around a long time, too.

 

[ALCapshaw2]

Here's what Lars Svensson of the Cleveland Clinic had to say last year about your main question:

For patients with ascending aortic and arch surgery - acquiring just the first part of the arch to be replaced we can do that mini invasively including an aortic valve repair or replacement. When I first was developing the mini invasive technique, we replaced the entire aortic arch and also the elephant trunk procedures using the mini invasive J incision.

However, we found it took a bit longer and although not statistically significant we felt the results were not as good. Similarly, for reoperative aortic valve or ascending aorta surgery we can do them mini invasively but prefer not to unless there is a reason such as a patient is a Jehovah witness and the blood loss may be less. Nevertheless, all isolated mitral valve repairs or replacements, aortic valve repairs or replacements and ascending aortic aneurysms I will do as mini invasive procedures.

http://my.clevelandclinic.org/heart/webchat/aorta_aortic_valve_webchat_transcript_svensson.aspx

Note that Dr. Svensson is the Director of the Aorta Center at Cleveland Clinic

'AL Capshaw'

 

[Lynlw]

Eddie,

You may be interested in some of the recent studies of Valve Durability

"Are allografts the biologic valve of choice for aortic valve replacement in nonelderly patients?
Comparison of explantation for structural valve deterioration (SVD) of allograft and pericardial prostheses."
Nicholas G. Smedira, Eugene H. Blackstone, Eric E. Roselli, Colleen C. Laffey, and Delos M. Cosgrove (of CC)
Journal of Thoracic Cardiovascular Surgery 2006:131:558-564
DOI: 10.1016/j.jtcvs.2005.09.016
OR http://jtcs.ctsnetjournals.org/cgi/content/full/131/3/558

Aortic valve replacement in patients aged 50 to 70 years:
Improved outcome with mechanical versus biologic prostheses
Brown, Dearani, Sundt, McCregor and Orszulak (some or all? from Mayo Clinic)
Journal of Thoracic Cardiovascular Surgery 2008;135:878-884
DOI: 10.1016/j.jtcvs.2007.10.065
OR http://jtcs.ctsnetjournals.org/cgi//content/full/135/4/878

Aortic Valve Replacement:
A prospective Randomized Evaluation of Mechanical Versus Biological Valves in Patients Ages 55 to 70 years
Stassano, Tommaso, Monaco, Iorio, Fepino, Spampinato, and Vosa (from Italy)
Journal of American College of Cardiology 2009;54:1862-1868
DOI: 10.1016/j.jacc.2009.07.032
OR http://content.onlinejacc.org/cgi/content/full/54/20/1862

'AL Capshaw'

Al, Are you able to read those links with out paying? If so could you let me know how.