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

Help Support ValveReplacement.org:

BCAVR

Member
Joined
Jun 11, 2022
Messages
14
Location
Usa
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)
Oh this is fascinating. So it wouldn’t necessarily be during a workout. Because I do lift fairly intensely. Curious whether it’s just heart rate (ie is cardio going to have roughly similar impact to lifting if HR is comparable)

*a baby aspirin a day btw, ever since the first incident

** and the d-Dimer was a few months before my second stroke (7/19), pretty far in time from the first one (5/18)
 
Last edited:

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
10,088
Location
Queensland, OzTrayLeeYa
Curious whether it’s just heart rate (ie is cardio going to have roughly similar impact to lifting if HR is comparable)
as far as I know HR is the issue for damage to platelets and haemoglobin ... you should look at your haemolysis levels as well as platelet damage levels.

I hope this is giving you some food for thought and avenues of investigation.

Best Wishes
 

BCAVR

Member
Joined
Jun 11, 2022
Messages
14
Location
Usa
as far as I know HR is the issue for damage to platelets and haemoglobin ... you should look at your haemolysis levels as well as platelet damage levels.

I hope this is giving you some food for thought and avenues of investigation.

Best Wishes
It is, and much appreciated.
 

Juli

Well-known member
Joined
Dec 27, 2015
Messages
56
Location
Oregon
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 the target back then). I’m trying to pull my records for the 2019 event (happened at a large but unconnected hospital) but I recall being in the mid to low 2s.
I take 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.
Your experience is very similar to mine - I had a stroke (multiple events on that day) in the middle of nowhere while riding my mountain bike and lost control temporarily of my left arm and leg - and also speech as I found out later when I finally made it back to the car and my wife was waiting for me. Was not able to communicate. But I made it somehow and recovered that night in the hospital. I had no idea that I had a stroke when I came home my son immediately called an ambulance - but at that time hours had passed and there was no emergency procedure possible. However, MRI shows damage to my brain and I had a seizure one year later. Needless to mention that I am very upset about the On-X valve and the false promise of low INR.

The three baby aspirin (3 x 81mg) is only for emergency situations with no access to medical help (mountain biking, sitting in a plane, etc) - recommendation came from my son who just became a doctor - is supposedly a standard procedure if there is suspicion of an ischemic stroke (for us with a mechanical valve) since it acts very fast. This is also what they administered in the hospital.

I am not taking a daily aspirin since there is a long-term stomach risk - warfarin is much better controllable and can be measured - provided we were given the proper INR range.

I am still puzzled about your most recent event - that does not fully fit into the picture. BTW - I am still doing a lot of road and mountain biking - but now always with a satellite emergency transmitter.
 
Last edited:

BCAVR

Member
Joined
Jun 11, 2022
Messages
14
Location
Usa
Your experience is very similar to mine - I had a stroke (multiple events on that day) in the middle of nowhere while riding my mountain bike and lost control temporarily of my left arm and leg - and also speech as I found out later when I finally made it back to the car and my wife was waiting for me. Was not able to communicate. But I made it somehow and recovered that night in the hospital. I had no idea that I had a stroke when I came home my son immediately called an ambulance - but at that time hours had passed and there was no emergency procedure possible. However, MRI shows damage to my brain and I had a seizure one year later. Needless to mention that I am very upset about the On-X valve and the false promise of low INR.

The three baby aspirin (3 x 81mg) is only for emergency situations with no access to medical help (mountain biking, sitting in a plane, etc) - recommendation came from my son who just became a doctor - is supposedly a standard procedure if there is suspicion of an ischemic stroke (for us with a mechanical valve) since it acts very fast. This is also what they administered in the hospital.

I am not taking a daily aspirin since there is a long-term stomach risk - warfarin is much better controllable and can be measured - provided we were given the proper INR range.

I am still puzzled about your most recent event - that does not fully fit into the picture. BTW - I am still doing a lot of road and mountain biking - but now always with a satellite emergency transmitter.
That is awful. Good on you for making it back quickly. Glad to hear you’re ok.

It doesn’t make sense to me either. It was fairly late at night, after a pretty long day that started with an intense leg workout.
I’m starting to think it’s somehow exercise related, I also do occasionally use some very small amount of pre workout (half a can or less of Bang) which is what I did that AM. But that was some 12 hours earlier. Beyond that I’d had about 2 alcoholic drinks (figured that’d play the opposite way!).

I’m almost convinced to just go for the bovine valve so I don’t have to constantly think about this stuff, but not making any big decisions in the immediate wake of this.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
10,088
Location
Queensland, OzTrayLeeYa
That is awful. Good on you for making it back quickly. Glad to hear you’re ok.
another similar post on the matter


this is not what the title may suggest, the member is warning about adherence to the low INR protocol and perhaps also had problems with thrombosis similar to you.

HTH
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
10,088
Location
Queensland, OzTrayLeeYa
Hey Juli, sorry to read of your situation

I agree that the On-X protocol of lower INR really should be a case by case situation and not a blanket. I and I believe others here have argued for some time that there is nothing magic about the On-X design and that the usual protocol for mech valves should be observed (NB keeping it over 2.0 and being willing to elevate towards 3 as the target if evidence warrants). The reality is that nobody has exactly the same situation and so it really does warrant a considered response, not a blanket response.

The three baby aspirin (3 x 81mg) is only for emergency situations with no access to medical help (mountain biking, sitting in a plane, etc) - recommendation came from my son who just became a doctor - is supposedly a standard procedure if there is suspicion of an ischemic stroke (for us with a mechanical valve) since it acts very fast. This is also what they administered in the hospital.
aspirin is an antiplatelet and (I encourage you to discuss this with your son, but tPA is the gold standard for dealing with strokes. Aspirin does not break up a clot, it just slows down the snow balling while the body breaks down the clots. tPA actively breaks clots.

The American Stroke Association has this guideline.
  • Emergency non enhanced CT imaging of the brain is recommended before any specific treatment for acute stroke.
  • Eligible patients should receive Alteplase intravenous r-tPA even if endovascular treatments are being considered.
I am not taking a daily aspirin since there is a long-term stomach risk
I would urge you to follow up on that and consider taking baby aspirin every alternate day, especially now that you have a known risk.

The situation with Asipirin is usually blanket simplified and ignores specifics. For instance from this article:

even lower doses of aspirin are being increasingly recognized as a cause of gastrointestinal bleeding (Stack et al 2002).​

but when you read Stack et al they write of this:

which is really addressing patients with ulcers, which are best treated by treating heliobacter pylori directly first


- warfarin is much better controllable and can be measured - provided we were given the proper INR range.
I would argue that the effect of warfarin is better able to me measured and that we should focus on being in range as much of the time as possible. I would suggest that better than 95% should be your baseline for Time in Therapeutic Range.

I am still puzzled about your most recent event - that does not fully fit into the picture.
what in particular is the question?

Best Wishes
 

Gator Chief

Member
Joined
Jan 18, 2022
Messages
7
Could you please list a link to the article that shows a high rate of stroke and thrombosis in the On-x valves.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
10,088
Location
Queensland, OzTrayLeeYa
@BCAVR

some additional data for you to consider and to bring up and discuss with any second opinion you may seek from another cardiologist.

firstly on the accuracy of the Coaguchek system with comparison to other methods of determining INR

1655169258378.png


make sure when reading these graphs you check what the INR scales are:

1655169491239.png


1655169547804.png



The Guidelines for management of INR after a mechanical valve are:
1655169407793.png

note the patient related risk factors and how they vary the INR target. I'd say you are no longer a theory risk, you've had evidence.


then about the iterative damage to platelets caused as they go around and around the circulatory system (they exist on average about 10 days)


Abstract
A model for platelet activation based on the theory of damage, incorporating cumulative effects of stress history and past damage (senescence) was applied to a three-dimensional (3-D) model of blood flow through a St. Jude Medical (SJM) bileaflet mechanical heart valve (MHV), simulating flow conditions after implantation. The calculations used unsteady Reynolds-averaged Navier-Stokes formulation with non-Newtonian blood properties. The results were used to predict platelet damage from total stress (shear, turbulent, deformation), and incorporate the contribution of repeated passages of the platelets along pertinent trajectories. Trajectories that exposed the platelets to elevated levels of stress around the MHV leaflets and led them to entrapment within the complex 3-D vortical structures in the wake of the valve significantly enhanced platelet activation. This damage accumulation model can be used to quantify the thrombogenic potential of implantable cardiovascular devices, and indicate the problem areas of the device for improving their designs.​


Bileaflet mechanical heart valves (BMHVs) are among the most popular prostheses to replace defective native valves. However, complex flow phenomena caused by the prosthesis are thought to induce serious thromboembolic complications. This study aims at employing a novel multiscale numerical method that models realistic sized suspended platelets for assessing blood damage potential in flow through BMHVs. A previously validated lattice-Boltzmann method (LBM) is used to simulate pulsatile flow through a 23 mm St. Jude Medical (SJM) Regent™ valve in the aortic position at very high spatiotemporal resolution with the presence of thousands of suspended platelets. Platelet damage is modeled for both the systolic and diastolic phases of the cardiac cycle. No platelets exceed activation thresholds for any of the simulations. Platelet damage is determined to be particularly high for suspended elements trapped in recirculation zones, which suggests a shift of focus in blood damage studies away from instantaneous flow fields and toward high flow mixing regions. In the diastolic phase, leakage flow through the b-datum gap is shown to cause highest damage to platelets. This multiscale numerical method may be used as a generic solver for evaluating blood damage in other cardiovascular flows and devices.​

Best Wishes
 

Juli

Well-known member
Joined
Dec 27, 2015
Messages
56
Location
Oregon
Hey Juli, sorry to read of your situation

I agree that the On-X protocol of lower INR really should be a case by case situation and not a blanket. I and I believe others here have argued for some time that there is nothing magic about the On-X design and that the usual protocol for mech valves should be observed (NB keeping it over 2.0 and being willing to elevate towards 3 as the target if evidence warrants). The reality is that nobody has exactly the same situation and so it really does warrant a considered response, not a blanket response.



aspirin is an antiplatelet and (I encourage you to discuss this with your son, but tPA is the gold standard for dealing with strokes. Aspirin does not break up a clot, it just slows down the snow balling while the body breaks down the clots. tPA actively breaks clots.

The American Stroke Association has this guideline.
  • Emergency non enhanced CT imaging of the brain is recommended before any specific treatment for acute stroke.
  • Eligible patients should receive Alteplase intravenous r-tPA even if endovascular treatments are being considered.


I would urge you to follow up on that and consider taking baby aspirin every alternate day, especially now that you have a known risk.

The situation with Asipirin is usually blanket simplified and ignores specifics. For instance from this article:

even lower doses of aspirin are being increasingly recognized as a cause of gastrointestinal bleeding (Stack et al 2002).​

but when you read Stack et al they write of this:

which is really addressing patients with ulcers, which are best treated by treating heliobacter pylori directly first




I would argue that the effect of warfarin is better able to me measured and that we should focus on being in range as much of the time as possible. I would suggest that better than 95% should be your baseline for Time in Therapeutic Range.



what in particular is the question?

Best Wishes
Appreciate your comment about the more sophisticated treatment options in a hospital - but keep in mind that hours away from any hospital taking immediately Aspirin is better than doing nothing - that was what the advice is about.

After five years with no incidents and thousand of miles of mountain biking and 100k miles of international air travel most years with I feel pretty safe.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
10,088
Location
Queensland, OzTrayLeeYa
Hi

... but keep in mind that hours away from any hospital taking immediately Aspirin is better than doing nothing - that was what the advice is about.
somehow I got the impression that you were also treated in hospitals ... my mistake

But I made it somehow and recovered that night in the hospital.
and had assumed that you were not given more than aspirin or maybe heparin there.
 

BCAVR

Member
Joined
Jun 11, 2022
Messages
14
Location
Usa
I think he's talking about himself here ... he's had 3 (mini?) strokes already right? Isn't that high?
Yes, the cardiologist who saw me during my admission also referenced data re: on-X performing less well than other valves post the clinical trials. I don’t have that study or data, it was a verbal conversation.

From my personal experience it’s a higher risk valve (3 mini(?) strokes over 7 years is high).

I think my target needs to be 3.5. And maybe test at home twice a week vs weekly.

Thanks again for the chat, Pellicle, super helpful in informing what kinds of questions I need to ask as I hope to avoid a surgery of switching out one mechanical valve for another because they just think (??) the other will do better. Also very avoidant of tissue prosthesis because I’m 32 and then we’re talking 3 or 4 open heart surgeries if I plan on leading a normal length life (unless maybe there are big advances in TAVR and I am eligible for it)
 

jlcsn2015

Liborio
Joined
Sep 20, 2015
Messages
246
Location
Toronto
Actually, if anything, OnX Valve is the only one mech valve that opens at 90 degrees, reducing turbulence and associated isses compared to all other valves, Ask any surgeon about it, do not ask a cardiologist, she/he will not know about mechanics of fluids, as any issue with such device is associated with its physical design, quality of materials and properties of the "liquid" that is flowing through it. So, we all have different ways of interacting with these valves , warfarin etc. Like Avicenna said in X century "There are not deceases, just patients".... meaning, we all are different and react to life events in different ways; Again, the fact that OnX leaves open at 90 Degrees is the only improvement over St Jude, since all the other materials are the same.
 

tom in MO

Well-known member
Joined
Jan 17, 2012
Messages
1,876
Location
MO USA
well perhaps you're too old, but its common vernacular



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
Things change with time. As someone in his 60s that gives training to 25-45yos, "Drinking the Kool Aid" is not socially relevant anymore and for those who do understand, it's not an appropriate reference. If you "Drink the Kool Aid" it means you are too stupid to even know you are committing suicide. Not Cool at all and highly insulting.
 

tom in MO

Well-known member
Joined
Jan 17, 2012
Messages
1,876
Location
MO USA
Yes, the cardiologist who saw me during my admission also referenced data re: on-X performing less well than other valves post the clinical trials. I don’t have that study or data, it was a verbal conversation.

From my personal experience it’s a higher risk valve (3 mini(?) strokes over 7 years is high).

I think my target needs to be 3.5. And maybe test at home twice a week vs weekly.

Thanks again for the chat, Pellicle, super helpful in informing what kinds of questions I need to ask as I hope to avoid a surgery of switching out one mechanical valve for another because they just think (??) the other will do better. Also very avoidant of tissue prosthesis because I’m 32 and then we’re talking 3 or 4 open heart surgeries if I plan on leading a normal length life (unless maybe there are big advances in TAVR and I am eligible for it)
Beware of blaming the Onyx valve without direct proof. Do your physicians have objective evidence it's the Onyx or is that the "likely suspect?" The few studies I've read about strokes and valves, there is often no proof it was the mechanical valve but the study design blames the valve by definition. There is no attempt to see if there are other comorbidities in the patient. Besides the valve, there is placement, for example, is it the valve or how it was placed and sewn in? Is there anything unusual about your anatomy into and out of your OnyX?
 

BCAVR

Member
Joined
Jun 11, 2022
Messages
14
Location
Usa
Beware of blaming the Onyx valve without direct proof. Do your physicians have objective evidence it's the Onyx or is that the "likely suspect?" The few studies I've read about strokes and valves, there is often no proof it was the mechanical valve but the study design blames the valve by definition. There is no attempt to see if there are other comorbidities in the patient. Besides the valve, there is placement, for example, is it the valve or how it was placed and sewn in? Is there anything unusual about your anatomy into and out of your OnyX?
Yeah, that’s valid and something I’m exploring. I wasn’t aware of the placement issue until pellicle mentioned it and having had multiple TEEs I *think* there’d be some mention of it along the line as we hunt for the reason behind these incidents with cardio- and neurologists. Imagine they can check again with that in mind and it’s something I’m raising at my next meet. I’ll be incredibly surprised if there’s an issue on placement.
Otherwise I’m not sure of any additional meaningful factors that would add to my risk profile. BP is controlled. Regular exercise (possible culprit I suppose). Moderate caffeine intake. They’ve tested for any clotting issues and come back with nothing.
The mention of on-X being riskier for some came verbally in the hospital last week. First I’d heard of it. I haven’t had time to research the basis for the claim but she (cardio) mentioned that data came out after clinical trials showing it was not as good as initially projected. Another thing I’ll ask in follow up with my regular cardio Thursday.
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
1,582
Again, the fact that OnX leaves open at 90 Degrees is the only improvement over St Jude, since all the other materials are the same.
Nobog is involved in valve research, and I would estimate that he knows more than anyone here about valve hemodynamics. Here is his comment about the claim that the OnX opens at 90 degrees and also about whether this truly would be an improvement:

 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
10,088
Location
Queensland, OzTrayLeeYa
Nobog is involved in valve research, and I would estimate that he knows more than anyone here about valve hemodynamics. Here is his comment about the claim that the OnX opens at 90 degrees and also about whether this truly would be an improvement:
just to let you know this has been tried before:

some people have their own facts



one thing I've noticed here is that there are people who think they are scientists and then there are people who are well informed. My other observation is that the difference between the two groups is also apparent to other rational members.
 

Latest posts

Top