Early 30s, 3 strokes over 7 years of On-X

[BCAVR]

Funnily enough I almost posted here right before my third stroke (which happened this week). The title is the quick explanation.

I got my bicuspid aortic valve replaced when I was in my early 20s (2015) after a handful of years monitoring. Surgeon recommended the on-X and, daunted by specter of multiple OHS, I agreed, wanting a lifelong valve. It was supposed to be a better option w potential for running at lower INR. I’m otherwise fit and healthy, work out lift/cardio 5x or so weekly. Mostly a model patient. I ammeticulous with tracking INR. Rarely dip below therapeutic, if anything, trend too high.

Thankfully I’ve got no major neurological deficits as of now.

The first stroke (2018) was a loss of balance that lasted a minute, I didn’t go in until next morning when I still felt… weird. Two minor dots on the scan but recovery felt complete.

The second one (2019) required a thrombectomy, the clot was nearly wholly occluding whatever part of the brain allows me to process audio input. The impact ebbed and flowed but didn’t dissipate until clot removed.

The third one (this week) was a very temporary loss of speech (stuck saying “I can’t… I feel…” without finishing sentence — this went away within a minute). They almost choppered me to another facility for thrombectomy on that last one, but decided risk was too high with surgery+Anticoagulation level and — thankfully — the clot sort of moved downstream to a less important spot to occlude that part (haven’t pinpointed any impact from this) and I guess the rest dissolved.

For context, INR was above 2 for each of these 3 events, and was 2.7 for this last stroke. It might be noteworthy that each incident has occurred during periods of real intense stress (low sleep, intense work, divorce/financial stress). Neurologist during my most recent stay did say my INR being high has likely kept these events smaller but this doesn’t inspire confidence. Feels like I’m playing Russian roulette.

There’s obviously a lot more to this but just wanted to vent somewhere where someone might really get it.

I’m left contemplating another replacement valve because it seems this on-X valve really ain’t ****, not for me, anyway. Cardiologist during my most recent stay said recent on-x studies have shown it has higher incidence of stroke for some folks. Suppose they didn’t know that in 2015 (nor did I hear anything about Ross). With that in mind, guess I can either go with bioprosthetic or as one cardiologist recommended go with the other older prosthetic valve and just keep my INR high. Follow-up appointments scheduled. Curious whether Ross is an option. Curious how many times they can really operate on your valve.

Anyway, confidence is at an all time low and not sure what I want, but strokes are so ******* scary that I can’t help but feel like I want this literal ticking time bomb out of my chest. Hard to get along without anxiety when you never know if you’re gonna lose the ability to wipe your own ass. Enough rambling. Thanks for listening.

 

[pellicle]

Hey there

sorry to read about your issues.


Firstly I'd ask are these strokes or TIA? If stroke what cleared them? Did you have tPA?

Either way I think this underscores the view that I have expressed here many times that there is nothing magic about the On-X and that the studies done to pass the FDA do not properly represent long term assessment.

I would ask was the valve properly aligned in the heart? I understand that this can be an issue.

Next I'd ask your about anti-platelet treatment (aspirin)

next you ask this:

Curious whether Ross is an option. Curious how many times they can really operate on your valve.

this is simply a reckless line of thought and the body is not a zipper bag. Each surgery exposes you to an increased amount of risk for bad outcomes. These bad outcomes of additional surgeries are often down played by surgeons who answer it with a slight deflection to saying the risk of death only goes up a little.

There are far more risks than being dead (nerve damage, needing a pacemaker, having ongoing AFib from the surgery, infections, the list is as long as your arm). There are only a few of us here who've had 2 or more surgeries. In my lifetime I've had 3.

Getting back to your clotting issues:

• have you had d-dimer tests?
• What was the circumstances of each of your situations? (activity, INR, ...)?
• do you have any other health issues?

Lastly to me the Ross is a surgery desired by people with magical thinking and which has statistically no chance of lasting 40 years without reoperation, unlike a mechanical. Worse you can find yourself with three bum valves in later life ... but then lovers of the Ross also seem to think in shorter time scales and place priority over the now than the future. In truth eventually the future becomes the now.

I've gone on about the Ross many times here, you can seek a few of those posts out. However I will say that the Ross has been known for decades, yet it has been largely not take up. Is this a "Mystery of The Lost Aztecs" or are there valid reasons why only a sewing circle of specific surgeons tout it to the faithful who seek Koolaid?

Here is my quick critical analysis of a post that has been cited here in the past in the Lancet as "proof" that the Ross is superior.

There are places where the Ross is still useful, is it mainstream? Well the fact that it certainly isn't is either evidence to ponder or conspiracy to wonder about.

Read carefully and critically.

Best Wishes

 

[ashadds]

Would that not be two bum valves , the ross only touches the aortic and pulmonary valves.

 

[pellicle]

Would that not be two bum valves , the ross only touches the aortic and pulmonary valves.

in the first instance yes, two bum valves, however I've certainly seen people develop mitral valve issues as they progress in their cardiac surgery career after just an Aortic. So if you win the jackpot you could get 3 ... only if you're lucky

Not sure how many Arnold S got in the end, but you can read about people getting two here a fair bit.

 

[pellicle]

Hi again

thanks for the details on the INR ... I saw them before, but didn't want to type a missive and wanted to fish out some more data.

For context, INR was above 2 for each of these 3 events, and was 2.7 for this last stroke.

That's good to know, but what's also important is the amount of time in range, not just what it was on the day (so a fuller history, not that I'm asking for it) is needed) This is because that thrombosis can grow on the valve leaflets and in particular this is exacerbated by the valve not being fitted 100% straight. Even 1 degree makes a difference. So if the surgeon didn't get it right (and doppler via TEE will be a pretty good tool for the analysis of that) you could get exactly this.

Some time ago (me being who and what I am) I did (what I call a bit of a literature review, but some people may call a lot of "research") reading about mechanical valves and delved into some fluid dynamic modelling (and as far as it can go) comparison with the (in vivo) physical systems (mainly comparing my valve the ATS with the St Jude).

Among the interesting stuff I found was this article from which I'll post a few of the (paints a thousand words) pictures. This shows the influence of tilt on the performance of a valve.

Fig 5 shows how this would influence the growth of thrombosis on the backs of the valves (which may under higher intensity break off) as well as the problems with thrombogenesis caused by pressure jets and indeed platelet damage (also exacerbated by intense exercise).

... It might be noteworthy that each incident has occurred during periods of real intense stress (low sleep, intense work, divorce/financial stress).

normally I'd blame exersize, but blood pressure can count I'm sure

Neurologist during my most recent stay did say my INR being high has likely kept these events smaller but this doesn’t inspire confidence. Feels like I’m playing Russian roulette.

and why is your neurologist making more sensible guidance than your cardio?

just to reiterate, are you taking aspirin?

 

[s9acasl]

.

 

[BCAVR]

This is great, it’s very late here but I’ll chime in with what I have handy.

-my understanding is these each qualified as strokes because there was evidence of impact visible on the MRIs. The first one resolved on its own, very small visible impact (apart from occluded vertebral artery); the second one was removed via thrombectomy; the third also resolved on its own but was visible on the MRI.

-I had d dimer tested in 2019 after the second event and it was .36 ug feu/ml (in range).

-I’ve been on aspirin since the first event, as well as atorvastatin since the second.

-No TPA because I was anticoagulated. I test about once a week and here are the preceding readings.

3.1
2.8
2.8
3.6
2.8
3.0
2.6
3.4
2.8
2.8


-I had a TEE after the second event and then one this week. There was no comment on the angle of the valve, nor was there any mention of clotting on the valve (which is what they looked for w another CT scan before clearing me for discharge). I’m very curious on this poin

-I’ve always exercised hard, lifting and lighter cardio. I imagine I was doing that on or around each of the prior events, but for this most recent event I had worked out about 12 hours earlier and hit legs, which can be particularly intense.

-No other known health issues

 

[MdaPA]

I don't know how much support you will find here for the Ross however. Some people here speak poorly of anyone who performs or people who are interested in the procedure, which I find odd, as it's a perfectly viable choice.

I think one needs to sift through someone else's unprofessional opinion in this forum (probably everyone posting here) and understand and learn from their experiences and any facts/data/publications they might share. It's also important to understand why someone has such a different opinion and try to rationalize that.

Best of luck, if you decide to pursue the Ross there's other online communities that are far less hostile to it, might be worth reaching out there as well.

Yeah, there may be some that seem more opinionated than others formed based on their own research, experiences, etc. but I think that's how they communicate. Maybe "harsh" or "too direct" but I don't think "hostile". Most everyone I have seen post on this forum tries to help the OP with their questions/situation, which may include their strong difference of opinion, in their own, friendly, manner.

 

[s9acasl]

.

 

[pellicle]

I find using a term to describe Ross surgeons and patients that was born from a cult leader influencing his followers to ultimately commit suicide due to misguided beliefs is a bit hostile. Especially on a forum dedicated to helping people making choices about heart surgery.

well perhaps you're too old, but its common vernacular

https://en.wikipedia.org/wiki/Drinking_the_Kool-Aid

"Drinking the Kool-Aid" is an expression used to refer to a person who believes in a possibly doomed or dangerous idea because of perceived potential high rewards. The phrase often carries a negative connotation. It can also be used ironically or humorously to refer to accepting an idea or changing a preference due to popularity, peer pressure, or persuasion.

so good for you in picking the most extreme interpretation you could pull out of that.

You have yet to explain why (nearly) every surgeon on the planet ignores it except for special cases .. but then those surgeons are probably wrong too ...

"you've done your research"

Best Wishes

 

[pellicle]

I don't know how much support you will find here for the Ross however. Some people here speak poorly of anyone who performs or people who are interested in the procedure, which I find odd, as it's a perfectly viable choice.

"speak poorly" ... well that's a claim, you seem to speak with authority and veracity. Yet I doubt that you have much experience on the issue or understand the surgical challenges.

You have not yet addressed (or if you have I'm sorry, I missed it) why 99% of surgeons don't perform "The Ross" ... are they somehow not seeing the light of truth? Perhaps there is something they've seen and you haven't (I know that's unlikely).

You know next to nothing about me and you run me down. Great. When you've done ten years of actually helping people here, doing actual things, giving them actual support you can run me down. So please do go find that "more supportive place".

I would ask: if you are so in love with the Ross why don't you consider a cryo preserved homograft? This does not ruin a non-diseased valve in the process. They have excellent results if done properly. I got nearly 20 years out of mine and it was put in at 28yo

For all cryopreserved valves, at 15 years, the freedom was​

47% (0-20-year-old patients at operation),​

85% (21-40 years),​

81% (41-60 years) and​

94% (>60 years).​

I'd put more data in here to support that but I doubt you'll read it, for you have already found the solution you want.

Lastly: has it occured to you that I'm trying to support your decision process (not just add more confirmation to your apparent bias)?

 

[Juli]

BCAVR - I am sorry to read about your incidents.

I can state based on my own bad experience that the claims of the On-X regarding lower INR are dangerous. No matter how many times that company changes their name: now Artivon, previously CryoLife previously On-X Life Technologies and before that MCRI - their claims for lower target INR (1.5-2) based on the 2015 PROACT study seem to be questionable - but the FDA does not seem to step in despite many entries in the Maude database.

After my "experience" at an INR of 2.1 I had to increase my target INR to 2.5 - 3 and always get nervous if it dips below the 2.5. I measure diligently twice a week - just to be on the safe side - and for the past 5 years had no issues. Your readings that you posted in conjunction with your most recent incident would fall into my current range. Do you recall your INR for the 2019 event?

I can feel for your frustration and concerns and do not have any scientifically based answer. I assume that you always carry Aspirin with you to take immediately when you feel symptoms (3 x 81mg).

 

[s9acasl]

.

 

[pellicle]

Morning

-my understanding is these each qualified as strokes because there was evidence of impact visible on the MRIs. The first one resolved on its own, very small visible impact (apart from occluded vertebral artery); the second one was removed via thrombectomy; the third also resolved on its own but was visible on the MRI.

ok ... so perhaps they were minor strokes, especially if they resolved themselves

-I had d dimer tested in 2019 after the second event and it was .36 ug feu/ml (in range).

ok ... was it long after the event? If not long, then this supports the possibility that its either platelet aggregation or thrombosis forming and washing off the valve when its "really active" (although on re-reading your above I would wonder if it was only stress not exersize activity that you were talking about. Was this after high intensity activity?

-I’ve been on aspirin since the first event, as well as atorvastatin since the second.

I have no idea how that would influence this, so I can't comment there

-No TPA because I was anticoagulated. I test about once a week and here are the

right ... no need to speed up the clot break down because you were anticoagulated and thus couldn't clot ... glad that the clots cleard themselves fast enough)

preceding readings.

3.1
...
2.8

those are all good readings, I guess that these are weekly data points preceding one of the events

-I had a TEE after the second event and then one this week. There was no comment on the angle of the valve, nor was there any mention of clotting on the valve (which is what they looked for w another CT scan before clearing me for discharge). I’m very curious on this point

ok, but that doesn't mean there wasn't one, perhaps because they were looking for a mass they didn't see the gorilla.

Perhaps mention this to someone else (a cardiologist perhaps) who can get someone else to look at the TEE data before ruling it out.

I'm also very curious.

-I’ve always exercised hard, lifting and lighter cardio. I imagine I was doing that on or around each of the prior events, but for this most recent event I had worked out about 12 hours earlier and hit legs, which can be particularly intense.

when we chat about this I'll go through a situation some years ago when I was asked about a stroke situation similar to this.

-No other known health issues

excellent.

Until next time

 

[pellicle]

It's simply where that term originates from, and I'm 31, is that too old?

Even in it's commonly used form it's still meant as an insult at best.

no, its meant to describe what was in that wikipedia article, I myself was using it to suggest firmly that you may not have been being properly detached and critical in your research. I know from years of experience that people will jump at anything when they feel they are able to avoid what they fear. I anticipate you have a fear of AC Therapy and are aware of the issues of SVD in a bioprosthesis.

Likely due to the complexity of the procedure. However there are surgeons bringing it back and working to implement training for it on a widespread scale.

while there may be some surgeons who love it, its very unlikely to be returning on a wide scale not least because of its complexity and added risks.

do you know much about valve leaflets morphology?

Homografts are a perfectly reasonable approach as well.

agreed ... at lesat equal to the ross but without stuffing up a non diseased valve. Both require a lot more experience and attention to detail than either tissue or mechanical. (hint: I've just mentioned a reason why its unlikely that the Ross will have a resurgence just as homograft hasn't)

For the record I find it difficult to be in love with any major surgery, especially when they all carry various risks.

and yet here we are with you championing something you know little about and running me down.

So you paint an entire group of people as shortsighted kool-aid drinkers being led around by a sewing circle of snake-oil salesmen then act like a victim when someone points that out, alright.

not acting like a victim, accusing you of calling me unhelpful and insulting and having nothing to back you up.

On an unrelated note, how does one delete their account here? Using the contact us button didn't yield results.

just stop using it, log out and don't come back ... if that's what you want.

Someone once said to me "you attract more flies with honey than vinegar" I have the view that you attract more with ******** than either of those, but why do I want to attract flies?

This is a serious decision you are making and you seem to have already made the decision, and come here for validation.

You should just go with your gut, it doesn't matter what the facts are or what I think.

Best Wishes

 

[BCAVR]

BCAVR - I am sorry to read about your incidents.

I can state based on my own bad experience that the claims of the On-X regarding lower INR are dangerous. No matter how many times that company changes their name: now Artivon, previously CryoLife previously On-X Life Technologies and before that MCRI - their claims for lower target INR (1.5-2) based on the 2015 PROACT study seem to be questionable - but the FDA does not seem to step in despite many entries in the Maude database.

After my "experience" at an INR of 2.1 I had to increase my target INR to 2.5 - 3 and always get nervous if it dips below the 2.5. I measure diligently twice a week - just to be on the safe side - and for the past 5 years had no issues. Your readings that you posted in conjunction with your most recent incident would fall into my current range. Do you recall your INR for the 2019 event?

I can feel for your frustration and concerns and do not have any scientifically based answer. I assume that you always carry Aspirin with you to take immediately when you feel symptoms (3 x 81mg).

Thank you. What was your experience, if you don’t mind sharing?

Let me revise my initial data — looked at my records and for my 2018 event I was actually at 1.8 (for context, I think I was told 1.5-2 was target back then). I’m trying to pull my records for the 2019 event (happened at a large but unconnected hosiptal) but I recall being in the mid to low 2s.
I take an aspirin daily — no one has ever mentioned taking 3 if I feel symptoms. Is that a known thing? Amazed it was never told to me.

 

[BCAVR]

Morning



ok ... so perhaps they were minor strokes, especially if they resolved themselves




ok ... was it long after the event? If not long, then this supports the possibility that its either platelet aggregation or thrombosis forming and washing off the valve when its "really active" (although on re-reading your above I would wonder if it was only stress not exersize activity that you were talking about. Was this after high intensity activity?




I have no idea how that would influence this, so I can't comment there




right ... no need to speed up the clot break down because you were anticoagulated and thus couldn't clot ... glad that the clots cleard themselves fast enough)




those are all good readings, I guess that these are weekly data points preceding one of the events



ok, but that doesn't mean there wasn't one, perhaps because they were looking for a mass they didn't see the gorilla.

Perhaps mention this to someone else (a cardiologist perhaps) who can get someone else to look at the TEE data before ruling it out.

I'm also very curious.



when we chat about this I'll go through a situation some years ago when I was asked about a stroke situation similar to this.


excellent.

Until next time

I’ll be sure to ask about valve angle.

I’m curious on what the link between intense exercise / stroke/clot is. I am pretty committed to weightlifting. Have inquired on this but the issue was always maybe blowing the valve out not causing a lot and I try to be mindful of breathing etc when lifting. My most intense exercises are heavy squats etc. Heart rate can get up there 150ish at peak but there’s a bit of downtime between sets. HR can also get up there if I’m doing peloton HIIT (again maybe 150 at peak).

 

[s9acasl]

.

 

[pellicle]

I’m curious on what the link between intense exercise / stroke/clot is.

peak heart rate and the time that its at peak.

Valves close hard and generate jets on opening and closing, from what I've read the St Jude is the best compromise in that respect, I have not sought data on the On-X.

Think of it as the fact that a native valve is very soft while the pyrolytic carbon is very had. Both close with a tight seal, one is like a slamming door (the pyro carbon). This triggers platelets and each time the platelet gets a smack on the arse on the way through the gate that provides cumulative damage. Platelets have a half life of IIRC 10 days.

I've also missed where you have spoken to aspirin (pardon me if I missed that)

 

[pellicle]

Indeed, as I mentioned in my original post my wife's best friend died at a young age due to AC therapy.

which while I'm sorry to hear that, is no doubt due to poor control of AC Therapy (usually strongly associated with less time in therapeutic range.

From dosing issues to interaction issues. I have heard numerous horror stories first hand.

sure ... well one of the things you can find here (if you look for it) is the other side of that coin. I've witnessed many horror stories in nursing homes and nursing situations. I've seen lots killed on the road ... is it only stats or can you (by being a safer driver) account for that?

Generally bad practice to abandon inactive accounts with personal information around the interwebs.

on a forum like this, which is managed, I doubt that's a problem. On reddit yes.

Either way, some points to remember:

1. I'll be dead and gone when you are facing your potential issues with a Ross
2. what you decided impacts me not one way or another, in contrast a surgeon doing the Ross stands to benefit.
3. sometimes honesty is not wrapped in sugar.

Happy to discuss issues and be an advocate for what I've learned in the last 40 years of having 3 surgeries. Just FYI you should read up on my history, some of my posts and other general searching before you categorise me.

Best Wishes