Still leaky :(

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Ryanvs

Well-known member
Joined
Jan 10, 2016
Messages
116
Location
Newcastle, New South Wales, Australia
Hello,

So I had my 12 month Echo & check up with my cardio yesterday and apparently I have a 'leak' from around the edge of the valve (Paravalvular leak I think it's called). He said that my scan showed that the swelling and size of my heart had gone down since my operation however there was a leak. He said it is mild and he doesn't think it's anything to worry about however "as doctors are pessimistic in nature we'll check again in 6 months. If it hasn't got bigger in this time you should be fine, however if it does get larger we will need to do something about it."

He does think it's only minor and combined with the fact I don't have any symptoms he did say he doesn't believe it's anything to worry about, but of course I'm worried. I mean, my heart has been 'stuffed'for so long I don't think I remember what a 'good' heart feels like. When he says minor, is he just saying minor compared to how bad it was before? Ugh - 6 months of this again.

Anyway - I've looked through the forum and most posts on this topic seem quite old. Has anyone else had this? Had any procedures to correct it? It's incredibly deflating, one minute thinking you're all clear, next minute having to worry about things all over again.
 
I'm sorry you are going through this - my cardio thought I had a leak at my 6 week post op, but my surgeon advised it was just the way my valve works (with attached conduit). I have a st Jude. I did research back then, but there was not much available.
 
Hey there
Thats a bummer.
Myself also not knowing much about para leaks, is this basically leaking between the aortic root and the valve stitching ring if I understand the mechanisms behind it.

I understood that there are some trans catheter repair options.
For instance
http://www.interventions.onlinejacc.org/content/5/2/121
With careful anatomical assessment, procedural planning, and procedural execution, successful closure rates of 90% or more should be attainable with a low risk of device impingement on the prosthetic valve or embolization.

I understand that it's uncommon, and that it implies some underlying tissue issues.

Sorry if you've already researched this, but here are a few things to read that I've found
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3060745/

https://www.dicardiology.com/article...avalvular-leak

https://www.radcliffecardiology.com/...r-leak-closure


This last one although brief clears up my understandings and may help you a bit too

https://my.clevelandclinic.org/healt...r-leak-closure


I assume your surgeon is aware if this and has discussed options

If you felt like a chin wagg let me know

Best Wishes.
 
Hi pellicle.

Yeah, so basically from what I understand the leak is where the valve is (should be) stitched. From what I have read it seems to occur if the stitching hasn't held or sometimes post opp when the swelling goes down it can create small 'gaps'' between the valve ring and the root. There are other possible causes but one of these two seem the most likely, to me anyway. That said, most of what I know about it I've found via google.

I assume my cardio may/will send the echo results to my surgeon, but no idea really what happens behind the scenes. Cardio mentioned that he believes the repair is usually done by transcatheter but he didn't go into it in great detail. Actually it wasn't discussed in great detail, partially my fault for mentally 'freezing' again and not asking questions.

He didn't seem too fazed, but good for him. I am. Part of the reason for his concern was I didn't have an echo post opp (no idea why) so he has nothing to compare the leak against. By having an echo in 6 months he'll have an idea if it has gotten larger.
 
Ryanvs;n876641 said:
... By having an echo in 6 months he'll have an idea if it has gotten larger.
Yep, it's all we can really do, acquiring more data , observe and plan.

It's pretty hard to stay chill through this though.

I added a few more links into my post between initial lost and maybe your reply.

Working from the phone is like as useless as it gets.

Staying focused at work and not letting it play on your mind are the biggest short term problems I reckon.

:)
 
Cheers, thanks pellicle, the other links have showed up now. Hmm, a couple I haven't read yet so I'll read shortly. Yeah the whole ''it's uncommon'' bit is what worries me the most.

Yeah I'll do my best
 
Doing the reading in answering the above post I was struck (yet again) by the apparent contradictions in readings. To me the obvious answer is that we (as a collective of humans and shared knowledge) just don't know with certainty. Some authors prefer to write in ways which suggest they are sure (perhaps for the reasons of showmanship needed to be perceived as a top surgeon in your field by your clients) ... maybe they are ... or maybe its just the science trained that choose to accept that we don't know everything. Once upon a time the idea of "egoless" writing was pervasive in science ... once upon a time.

My first link was this one (from the European Society of Cardiology:
Paravalvular leak (PVL) is a relatively rare complication related to the surgical replacement of mitral and aortic valves. Most PVLs are hemodynamically non-significant, however large leaks lead to heart failure and increased risk of infectious endocarditis. Intravascular hemolysis causing anemia is also common in small PVLs. In many patients reoperation is associated with very high risk and alternative methods using transcatheter closure have been designed. Such techniques are less invasive and can be used in most of high-risk patients.

Seems encouraging ... over the atlantic it seems debate is more divided ...

And this source suggests:
Paravalvular regurgitation affects 5% to 17% of all surgically implanted prosthetic heart valves.

which means not common but not "unheard of" .

This source goes on to clarify who:
Paravalvular leak (PVL) occurs when there is backflow around a prosthetic valve. This can occur through a variety of causes. Paravalvular Leak is accompanied by regurgitation and is often a significant problem for patients with bioprosthetic or mechanical heart valves.
{underline mine}
so both prosthetic types (and they have a reference to support their claim:(Vongpatanasin W, Hillis LD, Lange RA. Prosthetic heart valves. N Engl J Med 1996;335:407–16.)
so its not just something they pulled wriggling out of a hole

Yet curiously this source has a different view:
Paravalvular leaks are a common issue with mechanical valve implantation.

common ... sounds "worrying" .. yet they single out mechanical and fail to clarify what common means; is 5% common?

They clarify their view point perhaps by inference:
In 15-50 percent of cases, small paravalvular leaks are detected, but these are typically of minimal clinical significance.[1] However, in 1-5 percent of these cases, the leaks are associated with hemolysis, arrhythmias or congestive heart failure.

so of the "common" occurrences only 1 ~5% of these are associated with problems ... as many as half are of "minimal clinical significance" (which is good news for Ryan) ....

Clearly its not like a proper science (like engineering or physics) where you can go and pick a bolt from a shop and we'll know everything about that bolt, what forces it can take, how it will last in the environment and measurements down to its most tiny details. [IMG2=JSON]{"data-align":"none","data-size":"full","src":"http:\/\/atmedia.imgix.net\/af1f489c39c1de5ecb388a47c723df5f3c0d57c6?auto=compress&w=640.0&fit=max"}[/IMG2]








Of course material science has been acting like a science since at least the 16th Century (not a "Theatre" as Medicine remained until recently). [IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/elbrecht.files.wordpress.com\/2014\/01\/surgicaltheater.jpg"}[/IMG2]







So onto treatment, the guys at Radcliff have this to say:
The mechanism of leaks is not well understood....
How can PVL be treated? Unfortunately, repeat surgery portends a worse prognosis, with mortality rates for the first redo, second redo or third redo surgery of 13 %, 15 %, and 35 %, respectively2. Each repeat operation is less likely to be successful. Therefore there is ample room for percutaneous approaches.

so that's (to me) encouraging. They recognise that:
  • repeat OHS surgery brings worse outcomes for the patient (something surgeons like to play down when selling you a tissue valve)
  • each repeat is less likely to be successfull
  • no mention of needing to be "frail" to benefit from a percutaneous patch solution.
which is encouraging I'd say, unlike the view expressed by dicardiology:
Transcatheter repair of these leaks represents a new treatment option for these patients, who are often too frail for repeat surgery.

what's my point?
my point is that medical opinion is just that ... OPINION.
Unlike the hard sciences (stuff that can put sattelites in orbit or send Cassini to Saturn with incredibly fine margins for error) people in Medicine often argue about the most obtuse issues, making clear that there is ambiguity and uncertainty in their community.

This is why the medical people only offer "OPINIONS" (imagine if NASA offered an Opinion "oh yes, we think we can do that"), science instead offers evidence and calculations. This is something which shits me off and is compounded by the "Stockholm Syndrome" relationship many have evolved into with their practitioners ....

So to Ryanvs I say that the outlook for you looks promising with many good alternatives that seem to have a good likelihood of success. I recall that you are in Sydney, and I am of the view that there are many good "catheter" drivers down that end of the sticks.

So keep in mind some of the above points (how likely it is that its trivial) and they they are just doing proper diligence on investigating it at this stage. IF they find there is a significant leak (were you symptomatic or was it just identified in a routine checkup?) there is "ample room" for a good treatment that does not require OHS

Best Wishes mate
 
Hi , FWIW my father who also has a mechanical aortic valve has had paravalvular leakage since his valve was fitted and he's had his valve for 34 years, so hope it works out for you.
All the best.
 
Update - had my follow up scan today and I get the results next Monday, 18th December which I will post once I get them. I have no idea how it went as sonographers can only discuss some things with you. The only thing that through me off was when he asked if I've had any fevers. No idea if this was general chit chat or if he's seen something, but either way I guess I'll soon find out.
 
Update - had my follow up scan today and I get the results next Monday, 18th December which I will post once I get them. I have no idea how it went as sonographers can only discuss some things with you. The only thing that through me off was when he asked if I've had any fevers. No idea if this was general chit chat or if he's seen something, but either way I guess I'll soon find out.
 
Ryanvs;n880680 said:
Update - had my follow up scan today and I get the results next Monday, .... but either way I guess I'll soon find out.

Stay chill my friend and try not to read too much into it.

Best Wishes.
 
Thanks mate. Trying not too. With my last scan, 10 minutes into it he asked if I got short of breath and at this point I figured out what was up before I got my results. Same guy so I guess due to my past history with him this is why I'm thinking about it.
 
After my surgery in September for double bipass and mitral valve replacement, doctor says that my other valves are slightly leaking but not to worry. Nothing needs to be done. Obviously not good news. I have heard dont worry before. I dont know the technical details and don't want to know. At least the one valve is totally fixed with tissue. I worry easily,that's how I am. I have all the data and graphs from before the surgery. I wonder if I should keep it.
 
Three months after my surgery in 2008, echo showed leaks from both of my mechanical valves! Neither my surgeon nor my cardio cared. They kept telling me not to worry about them, but I did for a long time (which I now regret to have wasted my energy on worrying). The good news: Until my last echo, the leaks are still minor!
 
So, met up with my cardiologist today. Whilst the leak has got no bigger and the heart doesn't appear to be under any further strain from my last appointment, he feels that as there is a leak, it makes sense to get it fixed (otherwise it simply defeats the purpose of having the surgery in the first place.)

The leak is graded as moderate/severe.

He is booking me in for a transesophageal echocardiogram for early 2017 to see how big the 'hole' is and will send the scans off to a few surgeons in Sydney to see what the best approach is.

He feels that re-op is the best, but will speak to a few surgeons and get there opinion if the hole can be blocked.

Here we go again...
 
Best of luck to you. I mentioned before that my cardio thought I had one, too. It has been two years now. The cardio feels it has gotten better and is now mild. My surgeon still says it's merely a function of how my valve conduit is designed (with purposeful backflow washing). I guess they are sure that's not the case for you. I'm sorry you are going through this again.
 
Hey

Ryanvs;n880773 said:
So, met up with my cardiologist today. Whilst the leak has got no bigger and the heart doesn't appear to be under any further strain from my last appointment, he feels that as there is a leak
...The leak is graded as moderate/severe.
...
He is booking me in for a transesophageal echocardiogram for early 2017 to see how big the 'hole' is and will send the scans off to a few surgeons in Sydney to see what the best approach is.

Ok, so it's still possible that it can be plugged, which I seem to recall has good results.

Keep us posted mate :)
 

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