Prompt Surgery May Be Best for Heart Valve Leak

[NotHuman]

https://www.webmd.com/heart-disease/...t-valve-leak#1

This kind of freaks me out. I have moderate AI (mean gradient 25mmHg and velocity 3.3). A year ago, my mean was 15mmHg and velocity was 2.6, so it got worse in a year.

Neither my cardiologist or surgeon recommends surgery but I doubt they are aware of this study.

Part of me just wants to get the valve replacement to get it over with, however I am desperately trying to avoid another open heart surgery. I was looking into TAVR but there seems to be concerns about how long the valve lasts (I'm only 32 years old and want to live a very long life). I also heard something about another way where they go into the ribs.

Anyone have any opinions on this?

 

[honeybunny]

Others here who have more knowledge about these issues would have more advice than I. But I do want to caution against panicking based on this source. When was the study done? Neither it nor the article are dated. Is there comparable research that you can review? Have you considered sharing this info with your doctors, asking them the reason for their not waiting to do surgery?

I say all this having felt the same way as you when I was diagnosed with moderate to severe stenosis in 2015. My cardio told me it wasn’t an emergency though I’d need surgery in a year. I had no idea I had a BAV so all this news shocked me. And I wanted surgery done ASAP. I don’t handle anticipation well. And I’d nearly met my deductible so it was a financial decision as well.

If if you are trying to avoid another surgery and your doctors advise you to wait, waiting seems the best course of action. Perhaps you can increase the frequency of your doctor visits to gain peace of mind.

I know this is scary stuff. I’m sending positive energy your way. You have support here. Please keep us posted.

Hugs,
Michele

 

[NotHuman]

Others here who have more knowledge about these issues would have more advice than I. But I do want to caution against panicking based on this source. When was the study done? Neither it nor the article are dated. Is there comparable research that you can review? Have you considered sharing this info with your doctors, asking them the reason for their not waiting to do surgery?

I say all this having felt the same way as you when I was diagnosed with moderate to severe stenosis in 2015. My cardio told me it wasn’t an emergency though I’d need surgery in a year. I had no idea I had a BAV so all this news shocked me. And I wanted surgery done ASAP. I don’t handle anticipation well. And I’d nearly met my deductible so it was a financial decision as well.

If if you are trying to avoid another surgery and your doctors advise you to wait, waiting seems the best course of action. Perhaps you can increase the frequency of your doctor visits to gain peace of mind.

I know this is scary stuff. I’m sending positive energy your way. You have support here. Please keep us posted.

Hugs,
Michele

The sources and research do seem valid, however, it is referring to the mitral valve and my issue is aortic regurgitation. I do not know if it's the same case for both instances. I do plan on printing it out and bringing to my next appointment, so good idea. Hard to find comparable research.

I can relate to not wanting to wait for surgery. When I found out I would need an aortic root replacement, the surgeon gave the option to have the surgery the very next day. I freaked out but said yes because I knew I couldn't prolong the inevitable.

One thing I do know, is I'm getting a minimally invasive procedure if I can avoid open heart again!

 

[epstns]

Not - I'd be wary of trying to use the results of a mitral valve study in your aortic valve case. The impacts and possible damage caused by the regurgitation are probably different.

Also, I did not read the study, only the abstract you linked. The article does not address when, if ever, the "watchful waiting" patients had surgery. The ultimate choice of timing for their surgery could drastically impact their outcomes. In other words, the fact that they had a delay before surgery is only part of the question. The question of "how long" a delay is the other part. Some delay is probably not harmful. Too long a delay probably is harmful. Who decides?

That said, it is probably worth having a chat with your cardio. You and your cardio should be on the same page with regard to the direction and timing of your care management. The existence of your valve condition is only part of the puzzle. Your echo measurements are another critical part of the puzzle, and your cardio has a full set of criteria to use in determining when it is time for surgery.

One last thing - about your desire for a minimally invasive procedure. Unless you are a candidate for the "keyhole" surgeries in which the surgeon cuts between your ribs on the side, any of the classical median sternotomies (full or partial, etc.) will have the same recovery path. I queried my surgeon extensively prior to finding out that I was not a candidate for minimally invasive due to my need for a bypass, and his response was that in all of his experience, the recovery was literally the same between patients having partial or full sternotomies. His position was that as long as the sternum was properly and tightly wired at closure, the patient would not have to worry about bone problems, and the pain or discomfort would be no different either way. My sternum was "wired" and I never had any movement or sound from the healing bone. Either way, they don't want you to drive a car for a few weeks, so it really made no difference for me. It just made me think twice about when I could get back to doing my morning push-ups.

 

[NotHuman]

Not - I'd be wary of trying to use the results of a mitral valve study in your aortic valve case. The impacts and possible damage caused by the regurgitation are probably different.

Also, I did not read the study, only the abstract you linked. The article does not address when, if ever, the "watchful waiting" patients had surgery. The ultimate choice of timing for their surgery could drastically impact their outcomes. In other words, the fact that they had a delay before surgery is only part of the question. The question of "how long" a delay is the other part. Some delay is probably not harmful. Too long a delay probably is harmful. Who decides?

That said, it is probably worth having a chat with your cardio. You and your cardio should be on the same page with regard to the direction and timing of your care management. The existence of your valve condition is only part of the puzzle. Your echo measurements are another critical part of the puzzle, and your cardio has a full set of criteria to use in determining when it is time for surgery.

One last thing - about your desire for a minimally invasive procedure. Unless you are a candidate for the "keyhole" surgeries in which the surgeon cuts between your ribs on the side, any of the classical median sternotomies (full or partial, etc.) will have the same recovery path. I queried my surgeon extensively prior to finding out that I was not a candidate for minimally invasive due to my need for a bypass, and his response was that in all of his experience, the recovery was literally the same between patients having partial or full sternotomies. His position was that as long as the sternum was properly and tightly wired at closure, the patient would not have to worry about bone problems, and the pain or discomfort would be no different either way. My sternum was "wired" and I never had any movement or sound from the healing bone. Either way, they don't want you to drive a car for a few weeks, so it really made no difference for me. It just made me think twice about when I could get back to doing my morning push-ups.

All good points. My surgeon said he would do TAVR on me if I ever needed it but I worry about the longevity of those valves.

The good news is My EF is 60-65% by visual estimate so nothing wrong on the systolic side. My heart chamber measurements haven't changed in years, however, this includes my PWd is at 1.3cm, which I think is why they wrote grade 1 diastolic dysfunction on my echo. I wonder if I can reverse it with continuation of good lifestyle habits and supplements

 

[pellicle]

All good points. My surgeon said he would do TAVR on me if I ever needed it but I worry about the longevity of those valves.

TAVI as far as I know is intended for those who are so weak that a surgery is beyond their survival. My friends 70year old mother had conventional OHS and survived fine. The current state of the TAVI is that (as far as I know) you'll get up to 7 years out of the first and then (if possible) they can attempt a valve in valve which will get you another 4 or 5. After that a normal OHS must be undertaken to remove that clagged up mess and put in something else By then they expect most TAVI patients to pass away ...

So are you hoping for only another 10 years?

I recall you are "near athlete" level of activity so I'd divide all those numbers by 2 cos even regular bioprosthetice valves in the fit and health younger folk last only a few years. You'll find many stories here of 9 years, 8, even far less.

The human body is not like a machine. You can't just keep taking it apart.

One OHS in your life is fine, two is becoming more common, myself I've had three (and I'm 54) and I don't expect you'll see anyone out on the XC Track doing what I do after 5

If any Dr is offering you TAVI (as a young healthy adult) then frankly they're after you for other reasons than your health (publications come to mind, prospective studies come to mind)

Pick a better life ...

 

[pellicle]

a recent study:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5639224/

The source is reputable: Annals of Cardiothorracic Surgery.
published Sept 2017 (so as current as it gets really)

I'll bold the points that stand out to me, think critically when you read it (asking questions, comparing to your situation).
Look at the mean age 81 plus-minus 7 ... so between 74 and 88 years old. Sound like you?
Do you think that 28% survived to 7 years represents a good thing?

Transcatheter aortic valve implantation/replacement (TAVI/TAVR) is becoming more frequently used to treat aortic stenosis (AS), with increasing push for the procedure in lower risk patients. Numerous randomized controlled trials have demonstrated that TAVI offers a suitable alternative to the current gold standard of surgical aortic valve replacement (SAVR) in terms of short-term outcomes. The present review evaluates long-term outcomes following TAVI procedures.

Thirty-one studies were included in the present analysis, with a total of 13,857 patients. Two studies were national registries, eight were multi-institutional collaborations and the remainder were institutional series. Overall, 45.7% of patients were male, with mean age of 81.5±7.0 years. Where reported, the mean Logistic EuroSCORE (LES) was 22.1±13.7 and the mean Society of Thoracic Surgeons (STS) score was 9.2±6.6. The pooled analysis found 30-day mortality, cerebrovascular accidents, acute kidney injury (AKI) and requirement for permanent pacemaker (PPM) implantation to be 8.4%, 2.8%, 14.4%, and 13.4%, respectively. Aggregated survival at 1-, 2-, 3-, 5- and 7-year were 83%, 75%, 65%, 48% and 28%, respectively.

The present systematic review identified acceptable long-term survival results for TAVI procedures in an elderly population. Extended follow-up is required to assess long-term outcomes following TAVI, particularly before its application is extended into wider population groups.

 

[epstns]

In my case, almost 7 years ago at age 63, my surgeon told me that "They may try to tell you that by the time you need a second replacement, they will do them trans-catheter, but my own opinion (surgeon's) is to be mentally prepared for either one. Do not base today's decision on tomorrow's promise. Things may be better or worse in the future, but the present facts are known." Pretty wise, I'd say.

 

[epstns]

P.S. pellicle - I wonder what the aggregated survival rate of that population having a mean age of 81.5 +/- 7.0 years would be in a "normal" population not needing heart valve replacement at that age. The rate might not be all that different. . .

 

[pellicle]

Hi Eps

P.S. pellicle - I wonder what the aggregated survival rate of that population having a mean age of 81.5 +/- 7.0 years would be in a "normal" population not needing heart valve replacement at that age. The rate might not be all that different. . .

totally ... indeed that's the problem ... there just isn't enough data about the long term effect. However read those other PDF's I posted too and see some other difficult stuff.

Bottom line as I heard it from CoryP (who doesn't answer anymore) is that the surgeon who was pushing him towards TAVR (and he was in his late 40's IIRC) was that the TAVR would be expected to last 7 years then a valve in vale (restricting the diameter) would last at most 4 or 5 ... then he'd absolutely need a OHS no questions about it.

My point is always that younger patients need to look at this all carefully and impartially ... people look at the OHS as the end point where I look at it as the window through which to view the rest of your life.

I guess I'm more conservative, I'd like to pick from something which I know is the well understood gold standard - not something which might work for me.

 

[pellicle]

epstns I refer you to read this document:

http://circ.ahajournals.org/content/.../2332.full.pdf

To save a lot of words which may distract from the primary issues, the following are sub headings within it :

TAVR Does Not Improve Survival in Operable High-Risk Patients

Stroke Remains an Issue With TAVR

TAVR Leaks

and from the discussion:

TAVR has proven to be a safe and efficient treatment for inoperable
patients with aortic stenosis, and there is equipoise with
regard to early and midterm mortality for operable high-risk
patients. Before the indications of this technology are extended
to a lower-risk group and younger patients, the net risk-benefit
ratio needs to be evaluated. As it is the case with most disruptive
technologies, a lack of refinement and performance problems
exist also with TAVR. These problems materialize in a stroke
rate in excess of surgery, a high rate of paravalvular leaks, a
high rate of persistent LBBB after the procedure, vascular complications,
and uncertain durability, all of which may impair the
long-term outcomes of this promising technology.

as if I need to say this to you, but this is not my opinion on the matter but that of Volkmar Falk, MD who authored that paper.

My opinion however is simple: its too risky and for what benefit? Escapism? If someone is shocked and depressed about the death of someone they love does that make it ok for me to stand by and watch them hurt or kill themselves saying "well its their choice"

I believe people who are recently informed of a valve issue are indeed in shock and are grasping for anything to make that easier to swallow ; a kind of grief reaction if you will.

Standard Aortic Valve replacement with either a bioprosthesis or a mechanical prosthesis is well known well understood and right now the most reliable option for someone who is a healthy adult.

That's my opinion and why I encourage people to step back, take their time and think carefully.

but if someone wants to do anything that's entirely up to them. All I hope they have the guts to do is own it and to post here so that others can take that experience into account.

Best Wishes

 

[DJM 18]

P.S. pellicle - I wonder what the aggregated survival rate of that population having a mean age of 81.5 +/- 7.0 years would be in a "normal" population not needing heart valve replacement at that age. The rate might not be all that different. . .

Here is the data...actuarial life table

https://www.ssa.gov/oact/STATS/table4c6.html

At 81.5 a male has about a 7% probability of dying in a years time
At 86.5 the probability is about 11%

Agreed that in surgical valve replacement we have TODAY a fantastic option. No one is implying that OHS is easy, but it is most certainly not a death sentence. And the important thing is making the most of the limited time we all have here on earth.

 

[dick0236]

I visit valve replacement and vascular surgery patients in a local hospital once or twice per week. Most of these patients are senior(older people 60+). Most of the valve replacements are OHS tissue valves but I am seeing TAVR more frequently. The TAVR patients seem to be between their late 70s and mid 80s(even one 92 YO). Given that a heart valve has +/- 80bpm, or about 42,000,000 beats annually, a TAVR tissue valve with perhaps one re-catherization valve should last their lifetime. For a younger person, like I was at the time of my surgery, a valve, even with a re-catherization that might last last a couple hundred million beats which would not have been nearly long enough. My current, and only mechanical valve, has already lasted over 2 billion(2,102,400,000) beats So far, there is no valve for the younger person that has a proven history of longevity better than the mechanical valve......and even cardios I talk with don't see TAVR as a viable option except in the very old with limited life expectancy.

 

[Midpack]

Hi! Just 2 comments on the original subject:

1- This study is not particulary new. It is from 2013, as far as i can see.
2- Mitral and Aortic valves are 2 different beasts. VERY different indeed. No study results about the mitral valve can be automatically extended to the aortic one (and viceversa).

 

[epstns]

Just to clarify my opinion on this point -- I feel that TAVR is an interesting concept and is worthy of ongoing research. I do NOT feel that it should be an element in any current patient's decision process regarding valve replacement, unless the patient is very elderly AND unable to withstand the rigors of traditional OHS. The current valves and procedures are too effective to make it worth trying a new technology without some very compelling reasons.

I do not know if TAVR as we now know it will ever become the mainstream standard of care for valve replacement, but unless we continue the research we may never get to know what actually will be the next great thing. If I live long enough, I could need another valve replacement. I will not try to decide now what I will do then. It is that simple to me. When I reach the decision point, I will use the best information I can get at the time, and make the best choice for myself. And then I will not look back and second-guess my choice.

 

[d333gs]

For me,psychology ,prompt action would be good. I had no symptoms until I was told last week that my numbers where getting high 37 HHMG. Now I am worried every time I walk up our 5 flights of stairs and take a big breath at the top.......
Seems like I was born with a loose Aortic Valve I am 63 now and thought
I was in the best shape of my life playing 8 hours of hard tennis a week and feeling great afterwards......

 

[pellicle]

Hi

be guided by your medical team ... if you are not feeling symptoms and the only thing is that numbers are "getting a little high" then it likely means that you don't need surgery.

many get this discovery and don't need surgery either ever or for another decade.

play the long game on this one (not the win with a killer serve).

For me,psychology ,prompt action would be good. I had no symptoms until I was told last week that my numbers where getting high 37 HHMG. Now I am worried every time I walk up our 5 flights of stairs and take a big breath at the top.......
Seems like I was born with a loose Aortic Valve I am 63 now and thought
I was in the best shape of my life playing 8 hours of hard tennis a week and feeling great afterwards......

 

[d333gs]

Good advice Pellicle , thank you, I am still in a mild state of shock !