Aortic and now mitral

[DByrner]

Hello, I’m 43 years old and in 2014 had my aortic valve replaced (tissue) then again in 2020 (mechanical). I unfortunately just found out I need OHS again with my mitral valve needing replaced (mechanical). Has this happened anyone here before ?… I’ve a young family and I’m up the walls with worry Thanks for your help

 

[tommyboy14]

First of, I am very sorry to hear this. Yes it is possible. I once saw a paper where 20% of aortic valve replacement patients needed work on their mitral valve later. But that was a paper on Ross patients and we dont know if they are the same or different from regular AVR patients. But I think (someone please correct me if wrong) such data is very hard to come by, so I think we know it can happen, but we dont know how often and when.

Second, I think the best approach is to deal with it and understand that you will need to get this fixed. You already know the drill and if you do need another OHS, your youth is on your side in terms of recovery.

Third, I would say that you should see a surgeon who specialises in reoperations. My surgeon's 'business' at Cleveland Clinic London was 60% reoperations. He also said that he replaced someone's aortic valve six times without issues before. So multiple reoperations can be done safely.

Finally and most importantly, you want to get a second opinion and try to speak to the best doctors out there on your issue. Clearly if it is OHS and since you are on warfarin anyways, a replacement would be sensible, as we never know how long a repair can last. Have you explored the mitraclip option as a less invasive way to repair your valve? Perhaps this would be a way to hold off OHS for sometime if that is your concern.

Good luck

Tommy Boy

 

[DByrner]

Tommy Boy, thanks so much for your kind reply. I literally had a TOE 10 days ago, had no follow-up so doorstopped the surgeons clinic today and got the news. They said it was too severe for a clamp but that it does not need to be done immediately. I was so mind numbed (and the actual surgeon that was in my meeting after the TOE wasent there) so I’m not sure when. Ive a meeting booked for 2 weeks to discuss a this. Closest they could give me? Agh. Dig in time I guess.
Once again, thanks for your reply and I wish you the best my friend.

 

[pellicle]

Hi

Yep, there are a few double valvers here

Some of the single valve folks have had multiple operations spanning years.

You will be in good hands.

Best Wishes

 

[vitdoc]

I had a somewhat similar story with three aortic surgeries and problems with gradually worsening mitral regurgitation. Finally the mitral issues caused rather sudden decompensation over just a one week period. I was scheduled for a forth open heart for the mitral with little enthusiasm from the surgical community to do it due to the less than ideal odds for doing well.
I was fortunate to have been in contact with a physician who had done the most mitral clip procedures in the US at that time nearly seven years ago. He thought I had a pretty high probability of doing well with the clip. So at the last moment I switched from surgery and had the clip. I had two clips placed and so far seven years later they are still working very well without much leakage from the mitral valve. The procedure was nothing compared to open heart surgery which I detest.

Now having said that each situation is different. Your valve problem may not be ideal for the clip. But also it is possible that where you are being seen may not have too much experience or have someone who is adept at the procedure. So make sure that the information you are getting is not based on local expertise but on your specific pathology. The learning curve for placing clips is fairly steep and only a handful of interventional cardiologist place them.

 

[pellicle]

Hey @DByrner

The learning curve for placing clips is fairly steep and only a handful of interventional cardiologist place them

What this means is select your craftsmen with a very discerning eye. Because if it's not successful then its probably another open heart surgery for you. I don't think they can just have another go at it (or can they vitdoc?)

 

[DByrner]

I had a somewhat similar story with three aortic surgeries and problems with gradually worsening mitral regurgitation. Finally the mitral issues caused rather sudden decompensation over just a one week period. I was scheduled for a forth open heart for the mitral with little enthusiasm from the surgical community to do it due to the less than ideal odds for doing well.
I was fortunate to have been in contact with a physician who had done the most mitral clip procedures in the US at that time nearly seven years ago. He thought I had a pretty high probability of doing well with the clip. So at the last moment I switched from surgery and had the clip. I had two clips placed and so far seven years later they are still working very well without much leakage from the mitral valve. The procedure was nothing compared to open heart surgery which I detest.

Now having said that each situation is different. Your valve problem may not be ideal for the clip. But also it is possible that where you are being seen may not have too much experience or have someone who is adept at the procedure. So make sure that the information you are getting is not based on local expertise but on your specific pathology. The learning curve for placing clips is fairly steep and only a handful of interventional cardiologist place them.

Thanks for getting back on this vitdoc, it’s much appreciated. That’s interesting that your decompression was quick. I did a 5k yesterday so still waiting on the symptoms. From further coorspondence with the hospital they have said that they want to get ahead of this while im still healthy. Honestly, im past the freaking out mode now and just as long as there arnt any surprises and I can deal. I’ve a 2 and 3 year old that will need a taxi driver in a few years. I will definitely ask about the clips though as I too hate OHS…mentally and physically….thanks again my friend

 

[pellicle]

I will definitely ask about the clips though as I too hate OHS…mentally and physically…

just make sure you're not letting an emotional response get in the way of good decision making.

It would be a big mistake to "do anything to avoid OHS" which results not only in eventually getting OHS anyway AND also getting a worse outcome because of what went wrong (just conjecturing).
Look up my history

 

[DByrner]

just make sure you're not letting an emotional response get in the way of good decision making.

It would be a big mistake to "do anything to avoid OHS" which results not only in eventually getting OHS anyway AND also getting a worse outcome because of what went wrong (just conjecturing).
Look up my history

Big time, I’d say I’m 99.9% having OHS but I’ll ask the questions in any case to see why it’s not a viable option…thanks again

 

[Eva]

I had mitral insufficiency six years after my mild aortic insufficiency was confirmed in 1986. Both remained in mild condition until 2008 when the insufficiency became severe in both.

My surgeon was planning to replace my aortic valve and hoping to repair my mitral, but ended up replacing both as my mitral valve was beyond repair by that time!
Like you and like everyone else, I was extremely worried, but here I am!
So, look forward to the better days and years to come enjoying your family with better health and don’t waste your good energy on worrying. You’ll be fine!
Keep us posted.

 

[vitdoc]

Big time, I’d say I’m 99.9% having OHS but I’ll ask the questions in any case to see why it’s not a viable option…thanks again

I agree that one shouldn’t have something done or not done due to avoidance of open heart surgery. But as in my case the non open route probably was superior (at least so far).
Just get the specifics and if need be maybe a second opinion at a top heart center if you are not impressed with the explanation given.

 

[pellicle]

But as in my case the non open route probably was superior (at least so far).

I would agree that if possible and if medical evidence (including availability) suggests a clip is better than a valve then you should follow that

I would also weigh in surgery count and if a path leads to more.

All just things for the balance scale.

 

[carolinemc]

First of, I am very sorry to hear this. Yes it is possible. I once saw a paper where 20% of aortic valve replacement patients needed work on their mitral valve later. But that was a paper on Ross patients and we dont know if they are the same or different from regular AVR patients. But I think (someone please correct me if wrong) such data is very hard to come by, so I think we know it can happen, but we dont know how often and when.

Second, I think the best approach is to deal with it and understand that you will need to get this fixed. You already know the drill and if you do need another OHS, your youth is on your side in terms of recovery.

Third, I would say that you should see a surgeon who specialises in reoperations. My surgeon's 'business' at Cleveland Clinic London was 60% reoperations. He also said that he replaced someone's aortic valve six times without issues before. So multiple reoperations can be done safely.

Finally and most importantly, you want to get a second opinion and try to speak to the best doctors out there on your issue. Clearly if it is OHS and since you are on warfarin anyways, a replacement would be sensible, as we never know how long a repair can last. Have you explored the mitraclip option as a less invasive way to repair your valve? Perhaps this would be a way to hold off OHS for sometime if that is your concern.

Good luck

Tommy Boy

I have mitral valve calicification after having the aortic valve replaced with a St. Jude's aortic leaflet valve, so it does not matter of the valve replacement type, and it can happen with age.

 

[DByrner]

I had mitral insufficiency six years after my mild aortic insufficiency was confirmed in 1986. Both remained in mild condition until 2008 when the insufficiency became severe in both.

My surgeon was planning to replace my aortic valve and hoping to repair my mitral, but ended up replacing both as my mitral valve was beyond repair by that time!
Like you and like everyone else, I was extremely worried, but here I am!
So, look forward to the better days and years to come enjoying your family with better health and don’t waste your good energy on worrying. You’ll be fine!
Keep us posted.

Thanks Eva, I’m sorry I haven’t gotten back sooner. That message has meant a lot to me so thank you. I have gotten a bit more clarity today so feel a lot happier about facing the OHS. It’s amazing what a little reassurance will do. My daughters name is Eva BTW. She’s the best I will keep you posted

 

[Eva]

Thanks Eva, I’m sorry I haven’t gotten back sooner. That message has meant a lot to me so thank you. I have gotten a bit more clarity today so feel a lot happier about facing the OHS. It’s amazing what a little reassurance will do. My daughters name is Eva BTW. She’s the best I will keep you posted

I’ll be praying for you and for your Eva (and all of your family) with whom you shall be spending many years of happiness with better health.