Re-repair or replace????

[irishmiz]

Hi all!

Just received word from Dr. Gillinov at the Cleveland Clinic, who has reviewed my case, that he thinks that there is a 70% chance that he can re-repair my mitral valve. If not, he said that he'd replace it. According to his nurse, he specializes in re-repairs. I was sort of excited then, reality set in. What if.....? What if he does re-repair the valve and the same thing happens--the repair falls apart a month or a few years later? :eek: What if I travel all the way to Cleveland and spend all that money on travel & lodging to end up with a replacement valve anyway?:mad:

I have appts. with Dr. Kanda at the Wash. Hosp. Ctr tomorrow and with Dr. Speirs on Monday but I'm fairly certain they will tell me that replacement is the best option. Has anyone had a successful MV repair performed by Dr. Gillinov? Any recommendations/advice on this matter is certainly welcome :)

Thanks!

Christie

[geebee]

Christie,

You are indeed faced with quite a choice. It is commonly thought that repair is always the best option but, as I understand, you only got 1 year out of the last repair - correct?

I cannot tell you what to do but I can tell you what I would do if it were me. I would have the valve replaced. If you go tissue, you will get at least 10 times the longevity than you did with the last repair. If you choose mechanical, it could be a lifetime.

I would seriously discuss options with your cardio and surgeon and express all your concerns. Only then will you be able to make the choice that makes you the most comfortable.

Best wishes.

[sylviayasgur]

hi christie,
i agree with gina. i would ask the cardio and surgeons that exact question.
they must have a better idea.

please let us know what you decide and what they say.

good luck and be well,
sylvia

[Mary]

If it were me, I'd not take a chance on another repair. I'd have it replaced.

[RCB]

Hi all!

Just received word from Dr. Gillinov at the Cleveland Clinic, who has reviewed my case, that he thinks that there is a 70% chance that he can re-repair my mitral valve. If not, he said that he'd replace it. According to his nurse, he specializes in re-repairs. I was sort of excited then, reality set in. What if.....? What if he does re-repair the valve and the same thing happens--the repair falls apart a month or a few years later? :eek: What if I travel all the way to Cleveland and spend all that money on travel & lodging to end up with a replacement valve anyway?:mad:

I have appts. with Dr. Kanda at the Wash. Hosp. Ctr tomorrow and with Dr. Speirs on Monday but I'm fairly certain they will tell me that replacement is the best option. Has anyone had a successful MV repair performed by Dr. Gillinov? Any recommendations/advice on this matter is certainly welcome :)

Thanks!

Christie

Christie,
Dr Gillinov is a great doctor and highly respected. You must realize that the 70% he quoted you is only a guess( though a highly educated one at that). I would be more interested in how long he thinks the repair would last. If he tell you, he is making another guess. Since, you all ready have one surgery, this would be your second. If it fails you are looking at a third.

Messing around with the mitral valve is very prone to AF. I would ask him for a Cox-Maze III procedure and the valve of your choice. This is the conservative way to go, but I am against more surgeries if you can avoid them. Good luck in your choice!:)

[Barbara Stewart]

I agree with the others. I wouldn't take a chance on another repair. You could have a replacement and use a tissue valve which would last you 10-15 years and you wouldn't have to take coumadin.
Good luck.
Barbara

[Ross]

I'm in agreement with the rest of the folks. This isn't something that you want to keep on doing again or one day, your luck will run out.

[MikeHeim]

I would disagree with many of the above statements. I did extensive research into mitral repairs before I had mine, and found the statistics to be very favorable. In one study, well over 90% of the repairs performed by one surgeon in the mid-80's were still holding up. (I will try to find the link to this study, right now I am just referring to my personal notes that I made three months ago.) Assuming the repair is successful, you should get a much longer life than you would out of a tissue valve, as well as not having to deal with anticoagulation as with a mechanical. There is also a lowered risk of developing endocarditis and other complications after surgery.

On the other hand, I have never seen any data pertaining to a second repair. I would ask your Cardiologist and Surgeon why the first repair failed. If there is something in your body type that would make a repair less likely to hold up, you definitely need to re-evaluate. However, if they feel that a second repair would hold up, I would almost certainly go that route.

Here's the link to the study I mentioned above. It's ungodly dry, but there is a lot of encouraging data:
http://circ.ahajournals.org/cgi/content/full/circulationaha;104/suppl_1/I-8

[geebee]

I would always agree that repair is the way to go. However, the replies are because Christie has already had one repair that failed in (I believe) less than one year. If the same thing happens, she is looking at, the very least, a third surgery. I agree she should talk to the surgeon and find out why another repair would work when the first one did not.

[irishmiz]

Thanks to all of you who posted:) I truly value everyone's input. Assuming that I receive different opinions than Dr. Gillinov's from both of the local surgeons who I will be consulting with, I plan to speak further with his office. I'd like to inquire as to why or how he thinks he could possibly save my mitral valve. If it's due to something the other surgeon did or did not do, or something that could be done differently or, perhaps a new pathology that has developed, I may give the CCC further consideration. The fact the my first mitral valve repair only lasted a month makes me a bit suspect in the first place.....

Will report back when "all the votes are counted" :D

Christie

[KathyH]

I too would be leary of a second valve repair in such a short time. If it was a different surgeon who did the first surgery, I would tell this one, if you can't fix it to last my lifetime, then replace it. Personally, I would just replace it, but that of course your decision. You are the only person who knows what is right for you.
Kathy H

[Christian]

Do you hope to have a child in the future? If you do, that's a factor in favor of another repair attempt.

There are at least two people here who have had Gillinov valve repairs. He was our second choice behind Dr. Cosgrove (also at the Cleveland Clinic), who ended up repairing my wife's valve 4 months ago.

[catwoman]

Christie:

Your profile shows that you had a VSD repair and your first MV repair in October 1969 (I'm assuming perhaps as an infant or very young child). And then the re-repair in 2005 that didn't last very long.

You have a tough decision ahead.

I would agree with most here. A replacement will last longer than another repair at this point based on your history. Unfortunately, there's no crystal ball to see what would happen either way.

[MikeHeim]

I am really shocked by some of the reasoning used in some of the other posts in this thread. There are several people on this list that have had mechanical valves fail after just a few months and need to get them replaced. Would you suggest to those people shouldn't go mechanical again? It seems like the assumption being made is: "well, your last repair didn't last, so the next one probably wouldn't either." Based on what?!?!?!?!?! There is a certain small percentage of valve repairs and replacements that fail very quickly for a variety of reasons. I don't think that anyone can say that because one failed, the next one will as well.

I would challenge anyone out there to find one website or piece of literature that advocates replacement when a repair is possible. I did extensive research for my own case and never found anything, so I'm reasonably sure that it doesn't exist.

Of course (as I stated in my previous post) if your surgeon or cardiologist tells you that there is a high likelihood that another repair would not hold up, that changes everything and replacement is almost certainly the way to go. My frustration with this thread is that many of the posters have made the non-fact-based assumption that a second repair would not hold up. I think judgement calls like that are best left to a medical professional.

[geebee]

I am really shocked by some of the reasoning used in some of the other posts in this thread. There are several people on this list that have had mechanical valves fail after just a few months and need to get them replaced. Would you suggest to those people shouldn't go mechanical again? It seems like the assumption being made is: "well, your last repair didn't last, so the next one probably wouldn't either." Based on what?!?!?!?!?! There is a certain small percentage of valve repairs and replacements that fail very quickly for a variety of reasons. I don't think that anyone can say that because one failed, the next one will as well.

I would challenge anyone out there to find one website or piece of literature that advocates replacement when a repair is possible. I did extensive research for my own case and never found anything, so I'm reasonably sure that it doesn't exist.

Of course (as I stated in my previous post) if your surgeon or cardiologist tells you that there is a high likelihood that another repair would not hold up, that changes everything and replacement is almost certainly the way to go. My frustration with this thread is that many of the posters have made the non-fact-based assumption that a second repair would not hold up. I think judgement calls like that are best left to a medical professional.
The title of this thread is re-repair or replace???? That indicated to me that Christie was looking for thoughts not for us to make her decision. As with all other threads on this site, it is about giving our opinions to help guide someone make the correct decision for them. None of us are telling Christie what to do, only what WE would do in her place. Also, this would be a third repair not a second, certainly an indication that something is going on that needs to be investigated. Granted there was a great deal of time between the first and second repairs but it has only been six months since the last one. The question of whether a repair would last is certainly something that would be on the top of my question list.

[Karlynn]

Christie, have they given you any hint as to why it failed so quickly? I know I would want a statement from a surgeon doing a re-repair that they are pretty close to 100% certain that they can do a re-repair that will last a long time or they will go to plan B. I would also want them going in with a valve replacement choice on hand. Christian mentioned having children. I personally don't think I'd be comfortable having children on a re-repaired valve. Pregnancy can be tough on valves. If having children is in your future, I'd skip the re-repair and go tissue.

There are several people on this list that have had mechanical valves fail after just a few months and need to get them replaced. Would you suggest to those people shouldn't go mechanical again?

Digressing from the topic a bit. Sorry Mike, but I'm going to ask you to back this statement up with fact and let us know the several members who have had their mechanicals fail within a few months:confused: . I can think of one recent member who's mechanical of about 6 months needs replacing due to endocarditis - this is not a problem strictly associated with mechanical valves. Not sure why you singled out valve type here. Those that have responded here are pretty much across the board on valve type and are just stating what they would do if in such a situation.

[Superbob]

Hi again Christie,

Sounds like you are faced with one of those decisions for which a crystal ball would be most helpful. I can only echo the others who've said they would make avoidance of a quick third (or would that be fourth?) surgery a priority. Probably the safest call would be a replacement, but if an expert tells you chances of an enduring re-repair are very, very good. . . well, you have a tough call to make.

Glad to hear you have an appointment with Dr. Speir on Monday. This is not to be nitpicky but just FYI -- it is Dr. Speir, not Speirs, as it sometimes incorrectly appears. The name is a bit unusual and I've had to look it up more than once to remind myself. But he's my hero, so I take pains to get his name right . :)

I bet he'll give you an excellent consultation. Look forward to hearing more as you go through the decision-making process.

Best wishes,

Bob

[RCB]

I would challenge anyone out there to find one website or piece of literature that advocates replacement when a repair is possible. I did extensive research for my own case and never found anything, so I'm reasonably sure that it doesn't exist.



Mike, I could have saved you, perhaps days of searching. You are trying to prove a negative- impossible, because nobody advocates for a replacement when a repair is clearly possible. That is not the thesis being put forward here. As I see it the poster doesn't know whether or not IT IS POSSIBLE that valve can be repaired and how long would it last, since it would be a second repair. You seem to be putting forth the idea that a repair should be attempted no matter what the chances are for success and the duration of the repair. Gillinov's opinion is 70% chance of repair with a resulting 30% it can't be repaired and no guarantee of how long it will last. All repairs aren't the same, even your own study show a lot of pre-selection in choice of pts. Certain groups were ruled out; anybody knows if a surgeon can pre-select their pts.
they can improve their statistics. Gillinov and Cox said the Cox-Maze III procedure wouldn't work on me. By giving me a Mini-Maze version of the procedure, CC stat. for the Cox-Maze III remains high to due to pre-selection of which pts. gets which procedure (yes, they call it a procedure but it still is major surgery-jeffp is right!)

By challenging people to go search for a website, that nobody claims exist, is setting up a “strawman argument.” As the Wicked Witch of the West one said “ Hey Strawman, want to play with fire?” I think not.

If you think I’m being rude in my opinion, I am truly sorry for that. Perhaps someone could suggest an editor.:)

[RCB]

If you can get reasonable assurance and an explaination as to why the repair failed, I would def get another repair without a doubt...But they better be from the best of the best surgeon..

Good luck!

Mark


Well I agree with the best of surgeons and the Good luck remark, but that's it.

You are assuming that the "reasonable assurance and an explaination as to why the repair failed,..." would provide information explaining how a second repair would be more successful. That may not be the case and they might not know that until they examine the valve first-hand. For example the valve itself could have been very friable, it is possible that the repair damaged tissue that makes another repair impossible, maybe there is not enough good tissue left to make a repair, maybe the repair never should have been attempted in the first place so a second repair would be insult to injury.
I guess if Mike can be shocked then so can I that anyone would conclude that the only possible outcome of "reasonable assurance and an explaination as to why the repair failed,..." would result in thinking one should "get another repair without a doubt".

Can you explain this to me, because I am dumfounded!:confused: :confused: :confused:

[BillCobit]

Q to the replacement advocates (and it's NOT cuz I already think I know the answer and I'm playing Lt. Columbo): Are the common reasons a repair might fail largely exclusive to the set of reasons a replacement might fail? The theme here seems to be that replacement avoids the risks that caused Miz's repair failure. As an unbiased (really) but sympathetic participant in this discussion, that's the part that's eluding me. Further explanation might help Miz weigh her choices.

Some info I AM confident about from my prior research: Repairs are more technically difficult procedures than replacements. A less-skilled surgeon is less likely to execute a successful, lasting repair. There are people in the biz who cannot preserve valves that more talented surgeons could.

Some stuff I MERELY SUSPECT based on intuition: A really talented surgeon MIGHT be tempted to push the envelope trying to save a valve that perhaps should have been (with hind sight) replaced. Also, it seems intuitive that your natural valve can only suffer so much remodeling...just like your heart can only suffer so much surgery...without functional compromise. Maybe that's the unexplained rationale of the replacement advocates?

And finally a PERSONAL EXPERIENCE, Miz, that I am not attempting to project on to your very different situation, but merely sharing it. I am a big fan of Dr. Gillinov. He performed a complicated repair of my badly trashed mitral valve. I had prior endocarditis that munched some holes in my valve leaflets and involvement of anterior and posterior leaflets. He remodeled my annulus and lealets and performed a sliding patch repair to cover the perforations. I had no A-fib, and the only drug I use is a daily baby aspirin. Four years later, I have no leakage or other problems. I treat my engine like it's OEM equipment, enjoying cycling and triathlon (including Ironman) and am an avid caffeine abuser. My local cardio believes I have a life-long repair (I hope he's right). I was only a "first-timer," but I think Gillinov is top notch. I'm emotionally involved in my own opinion, but I suspect he is as good as anyone you'll find in the biz. I personally would trust him to perform a repair or a replacement. I found him to be a very good communicator. If you haven't already, I'd pose your questions and concerns directly to him. Prior to my surgery, I found him willing to discuss my situation and concerns by phone (I'm not local to Cleveland).

Good luck and best wishes to you, whatever course you may decide to take.

Regards

[tobagotwo]

A surgeon can only tell a likelihood of repair, even from a really good TEE. You need to have a backup valve ready before surgery.

In your place, I would want a surgeon with a great deal of successful experience in mitral repair. I would want to know what he thinks is causative (broken or stretched chordae, damage to the papillary muscle, etc.) and his tentative plan for the repair. I would want to know what he thinks caused the failure of the first repair. I would want him to be well versed in determining whether myxomatous changes are happening to the tissue that might sabotage the repair down the road - and maybe even know that it would be checked in the lab while I was on the table, if there were any question.

If his answers satisfied me, I'd vote for the repair again. In my mind, it's still the best option, if the confidence is high that the repair is solid before closing. There are no guarantees for any method.

If you go all that way and spend that money and effort to have it done at CCF, and you wind up with a replacement anyway? You'll be able to have great confidence in that replacement, and know that the smallest toll will have been taken on you by your second surgery, due to you having had a top-knotch surgeon do the job. Still worth it.

Best wishes,

[BillCobit]

If you go all that way and spend that money and effort to have it done at CCF, and you wind up with a replacement anyway? You'll be able to have great confidence in that replacement, and know that the smallest toll will have been taken on you by your second surgery, due to you having had a top-knotch surgeon do the job. Still worth it.

Best wishes,

Darn good point! While replacements aren't as technically difficult, you still want a good surgeon and hospital, especially since you've already gone through the trauma of prior surgeries.

[cocoalab]

I don't have any advise as to whether to chose to repair again or not but Andrew did go into a very skilled pediatric thoractic surgeon who felt very confident he could repair his valve. He did three attempts and was not satisfied with the results. Andrew's valve was replaced with a St Judes at that point. He was 6 at the time and it lasted 9 years.

If you decide to attempt to have it repaired again just be mentally prepaired if it doesn't work. We knew there was a chance it might not work but it was still emotionally hard for me when I heard it had failed.

All the best to you and I swear the decisions of which way to go are as hard as going through it. At least for me it was.

[Randy & Robyn]

Christie,

I am sorry you have to be in such a confusing situation. I know how you feel. I had a repair fail last October and just had the valve replaced two weeks ago. It is such a horrible feeling when you get the news that it didn't take and you have to do it all over again.

I can't really offer any advice since my condition involved the aortic valve, a totally different situation. I wish you all the best with your very difficult decision.

Randy

[RCB]

Maybe if irishmiz could give some feed back on precisely what the question is
that is being asked in the thread starter. I really don't think we are all that far apart on our thinking, just we have a different idea about what the real question is.

I think one point we all agree on is this is a redo of a repair and therefore it really deserves a high degree of technical expertise. If there is to be a lasting repair, there is no better place then CC to get it done. I also agree that if you don't have any special problems you can get a perfectly fine replacement, either tissue or mech. in most hospitals.

Until we hear more from irishmiz, I for one will not try to read the mind of the thread starter. I think everyone one here did a wonderful service to irishmiz in presenting a very in depth and probing discussion. I think you all are a great bunch of swell guys. I just wish we could all express our views sitting around a table overlooking
our favorite view with our choice of food and beverage, instead of having to bang away at this stupid keyboard!

[Ross]

I think you all are a great bunch of swell guys. I just wish we could all express our views sitting around a table overlooking
our favorite view with our choice of food and beverage, instead of having to bang away at this stupid keyboard!
Can we have pole dancers too? :D

[geebee]

I think you all are a great bunch of swell guys. I just wish we could all express our views sitting around a table overlooking
our favorite view with our choice of food and beverage, instead of having to bang away at this stupid keyboard!
I second (or third if Ross is seconding) the motion.

[RCB]

Can we have pole dancers too? :D

Why do you always try to give new meanings to my words!:mad:

"our favorite view":eek:


;) :D :D :D We still love you, just make sure you bring a roll of 20s for the view!:p :p

[Atlanta Sweetheart]

Christie,

Did you consult with the other dr's about re-repairing your mitral valve? What was the result of your consultations? Good luck with this and I will be thinking and praying for you! Cindy

[Atlanta Sweetheart]

Christie,

Did you consult with the other dr's about re-repairing your mitral valve? What was the result of your consultations? Good luck with this and I will be thinking and praying for you! Cindy

[Granbonny]

Please let us know..whatever is decided.:) And know, that we will be here for you...:) ...From your posts..sounds like it will be a few more days..before you gather all your information..Then, let us know.. the surgery date, ect.We will post it on our calendar..Then, you can start posting in Pre surgery thread....Most Active members will be here to answer those questions.( places to stay, ect.)for Family members, ect...and we always love to know..if there is anyone that can post for you..after your surgery.:) If ..not..I will be glad to give you my telephone number to give to a Family Member.:) Just PM me on my name Granbonny....on this member site. Click on the G's..You will find me.:) My prayers are with you..:) Bonnie

[MikeHeim]

Digressing from the topic a bit. Sorry Mike, but I'm going to ask you to back this statement up with fact and let us know the several members who have had their mechanicals fail within a few months:confused: . I can think of one recent member who's mechanical of about 6 months needs replacing due to endocarditis - this is not a problem strictly associated with mechanical valves. Not sure why you singled out valve type here. Those that have responded here are pretty much across the board on valve type and are just stating what they would do if in such a situation.

I realize that this thread is pretty much dead, but I haven't had a chance to reply to this part of it. I've spent about 20 minutes trying to search and find some of the threads I was referring to, but I've been mostly unsuccessful. I found the post you mentioned above, and also there was the post last week which referred to someone who died from a mechanical valve that failed a few months after it was implanted (the valve ended up being recalled). Regardless, since I haven't been able to find the specific situations I referred to, I apologize and retract the statement.

On another note, I wanted to explain why I got upset in the first place. The people who responded and said they were only offering an opinion were not the people who I had an issue with. I completely agree that this thread was basically asking "what would you do?" and most folks correctly treated it as such. What upset me was quotes such as "A replacement will last longer than another repair at this point based on your history." That one almost made me fall off my chair.

[Mary]

I think maybe you're referring to Bart in Georgia and Kathy Canistro. I believe Kathy's was due to an infection, but Bart had paravalvular leaking.
You can check their threads to see if that's whom you were thinking about.

[Karlynn]

You are also referring to Billy's wife who died from the Silzone valve. I don't think anyone will argue the point that there are rare instances when there will be issues with mechanical valves when they fail. Many times, it's not due to the valve, but due to the way it was sewn in (Bart's case?), or if it is implanted when there is infection present (possibly Kathy's). I also don't think anyone will argue the fact that there are rare instances when tissue valves fail shortly after implantation.

We say that mechanical valves last a lifetime - the valve itself most definately can. The unknown is how the individual's body is going to respond to the valve being in place. Most often, when mechanical valves are replaced, it's not because the valve itself went bad, the the person's body is doing things to the valve to cause it to perform less than optimal.

I do think repair is a different story. Repairs seem to fail more often than tissue or mechanical replacements. However, I think this is due to the repair being done by a doctor who doesnot specialize in repair. One of our mantra's here is that if you are going to have a repair - go to a doctor that does nothing, or almost nothing, but repairs.

I understand your passion. I think people who responded here were just concerned that there wasn't a better estimate for success and that another surgery would be in the near future.

I also think I still have Billy's BBC interview on DVD, where he spoke about his wife Myrtle's case. If you'd like to see it, PM me your address and I'd be happy to send it to you. It's already made the rounds 1 time.