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

[sharky7]

Thank you and thanks for sharing. I was overwhelmingly in favor of mechanical but if I’m not considering that and just looking at tissue vs Ross, given I am really indexing on minimizing stroke risk, it feels like it’s worth serious consideration.

I’ve been trying to read the studies and it’s hard for me to form a conclusive opinion given my medical and general ignorance. Each suggested article seems to contradict the last… For example Long-Term Outcomes of the Ross Procedure Versus Mechanical Aortic Valve Replacement: Propensity-Matched Cohort Study - PubMed

I think to what you said about this...>>>"form a conclusive opinion given my medical and general ignorance. " part of what you stated, its a larger club then some of us even think about, and I am a member of for just about my entire 70years! I try and although no matter what I do, most of what I should and need to comprehend, I do not! It goes as it were, right over my head!

But as I have said here and recently, this is why this PLACE here, and is perhaps just a small part of social media, it happens to be for most of us, a very important part, and it helps in a very awesome way for me any how, to understand more then I would without it, I understand that, and very much appreciate this fact!
Point being then i think is, dont feel that you are alone in trying to figure this all out, and this place and all of these wonderful folks that share is now, and has become part of a whole, instead of what the Medical Practitioners, etc., part usta be all by itself!
Sorry to hear about what you are going thru, and wish you luck with whatever you decide to do, and wish the best outcome for you all!
[what troubles me about all of this is, there are so many that do not use this place, and for whatever reason....shy, introvert, antisocial. But for anyone to not come here, or anywhere, and ask anything because they think their question is stupid or whatever, the only stupid question/s are the ones that are not presented so others may reply. [I hope that came out as I intended, and anyway, its the thought that counts, right? So please, if you have anything troubling you about something, or anything concerning things that are talked about here, do not hesitate, please ask anything and everything!!!]

{{{rant finished, hope I did not offend anyone!}}}

 

[pellicle]

Thank you and thanks for sharing. I was overwhelmingly in favor of mechanical but if I’m not considering that

if I may ask, what switched you and what is your rationale?

NB: this is just to inform me, not to attempt to sway you. I will not counter your points (unless invited to).

 

[BCAVR]

.

 

[BCAVR]

I’m always down to hear additional perspectives and welcome any counterpoints.

I think you’ve got the gist of my history, so I won’t recap it entirely, but for me it ultimately boiled down to weighing concern over stroke vs concern over reoperation.

After three strokes, w/the last at 2.7 INR, I feel like I’ve dodged my share of bullets and my anxiety around a real bad stroke is fairly high. I also feel it’s warranted. My work and a big part of my identity is tied up in my ability to think on my feet and communicate well. A stroke threatens that and more. And while they think the small dissection is a likely culprit, it’s not a smoking gun. So there’s no great answer for why these strokes have occurred. That, coupled with my brothers clot history, has me thinking maybe mechanical just isn’t the best fit for me, maybe I have some propensity for clotting or something that isn’t captured by current tests, idk. Could be that the repaired tear + mechanical would set me on the right path. But I don’t think that is my best gamble based on my priorities.

Meanwhile, my trust in docs to do a good re-op today and (hopefully) in 20 years is pretty strong.

 

[Protimenow]

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.

I'm late to this thread - I just discovered it.

I have a St. Jude valve - it was implanted in August 1991.

I also had a TIA -- the meter that I trusted was telling me that my INR was 2.6 - it was 1.6 in the hospital. My left leg felt 'heavy.' It didn't feel right. I suspected that I may have had a stroke and took two regular (not the 81mg) aspirin. I had no medical insurance at the time, so I avoided going to E.R. at the time.

I put up with this - it didn't get better - and the next day, I did some shopping, and made a few phone calls, and was told that the County hospitals can help me at no charge. On the evening of the second day, I went to County hospital, didn't tell the Triage people that I thought I had a stroke, and the NEXT day, they checked me out.

My stroke was no doubt related to my weeks (?) of having a much lower INR than my meter told me.


I've been using my own meters for testing, and maintained my INR in range almost always since then.

I expect my mechanical valve to last as long as I do.

Now - as far as statins are concerned (I see that you take Atorvastatin), for some people, the use of statins is a political issue - as is the definition of 'good' or 'bad' cholesterol, or LDL values as predictive of cardiac outcomes.

(The book 'The Great Cholesterol Myth' discusses this pretty fully, and cites a great deal of research. )

I took statins briefly after my stroke - I didn't like what it did to me (lack of muscle mass, for example).

I'm not going to weigh in on the Ross procedure.

I'm also a supporter of using a target value of 2.5 - 3.0 for people with On-X valves - I don't see the value of having an INR around 1.5 if the benefits are low and risks are high.

 

[pellicle]

Good morning (at least that's what it is here)

I think you’ve got the gist of my history, so I won’t recap it entirely, but for me it ultimately boiled down to weighing concern over stroke vs concern over reoperation...

actually I wasn't consciously aware of it (people say a lot here and I don't remember all of it, which is why I never assume people know my history and that's why I repeat it so often) and I didn't see it in your history (...bio /about) page but you've reminded me.

I'll start with saying "there are lots of things I don't know the answer to and lots of questions to ask to find them. sometimes we never ask the correct questions and sometimes we lack the ability to even resolve with todays equipment".

I see your hesitations and understand your reasoning (even more now in the light of what you've written above). It reminds me of a situation some years back when a "wife of a patient" reached out to me (not on the forum, but having read my blog) and we had some conversations over a few weeks. He had similar TIA and mini-stroke issues but had a tilting disc valve. It was functioning otherwise perfectly. That solution involved taking INR to 3.5 in specific situations and combining with platelet cover as well. I don't want to give too many details but lets just say he's the sort of guy that you say "thankyou for your service" (and if polite salute) to.

I don't think anyone wants the debilitation of a stroke, I don't think you need to justify it in terms of "my job needs me to be able to ..." , I think that's just natural.

Myself I've decided to discontinue my antibiotics after my particular (over ten years ago) post reoperation surgical recovery rough landing. I am left with a bit of a Damoclesian situation while I watch and wait for either nothing to happen of a major threat to my life to happen.

Luckily I seem to manage stress well.

I believe that there is too much going on with either of our situations to put here, so if you wish to just have a yak about it, please reach out via PM and I can call you (I get free calls to the USA among other places on my phone plan)

However we all make calls (as I have done above) on what we'll do, only we can make them. I have discussed my call years ago with my (now retired) infection control specialist (and had a number of 2nd opinions).

Ultimately only we can decide what to do, especially if we feel ourselves sufficiently informed on all the options and all the outcomes.


Best Wishes

 

[Protimenow]

One more thing to consider about repeated OHS -- each time, it's harder for the surgeon because of scar tissue that develops post-surgery. (I'm not a surgeon, so I'm quoting what I've read here and elsewhere).

It seems to me that the best choice (aside from the decision that you ultimately make, after consulting with doctors, family, and research) is the one that will require any reoperations (if possible). I'm not confident that any game changer, in terms of repairs or other technologies that make your/our situations more manageable down the road will come along.

(My joking prediction of an valve replacement done through the nose will never happen. Maybe AI technologies will be useful in the future to design a valve that is specifically made to fit your heart, sometime in the future (but FDA approval will probably take YEARS).

Good luck with your decision - whatever it is.

I'm sure all of us would like to learn about it.

 

[sharky7]

One more thing to consider about repeated OHS -- each time, it's harder for the surgeon because of scar tissue that develops post-surgery. (I'm not a surgeon, so I'm quoting what I've read here and elsewhere).

It seems to me that the best choice (aside from the decision that you ultimately make, after consulting with doctors, family, and research) is the one that will require any reoperations (if possible). I'm not confident that any game changer, in terms of repairs or other technologies that make your/our situations more manageable down the road will come along.

(My joking prediction of an valve replacement done through the nose will never happen. Maybe AI technologies will be useful in the future to design a valve that is specifically made to fit your heart, sometime in the future (but FDA approval will probably take YEARS).

Good luck with your decision - whatever it is.

I'm sure all of us would like to learn about it.

You bring up a very good point, it being about AI and what role it may and/or may not play in dealing with, what we all here are now dealing with, and those in the future, and what choices they will have, perhaps that we did not have!

I think that AI will have a huge impact on all of us, one way or another! I think first figuring out what is wrong with us, and coming up with the best solutions that have the better chances of giving us all the best health options available currently! And in the OR, the chance for the best surgeon no matter where you live! The surgeon being I think, AI! Yes, AI will even replace in time, those that are now in the OR.
Tech is now, I think moving so fast, that this all will take place faster than most think that it will. Right now, I am able to, and right in my own home. test myself for the following, EKG, Oxygen level in blood [during the night&while I am sleeping], heart rate, blood pressure, INR, and oh ya, check my blood sugar! Although back when and as I grew up in NYC, the only things we had back then was, two different ways to check the body temp, and a scale in the bathroom....and that was it!
TECH has come a very long way since then. And that aint even counting the ways to check for whatever, thru and using a lab at the hosp., or VA or where ever the LAB may be!
Not sure about others, but I feel blessed to have all of those options out there, we all did not have only 30-40+ years ago, or so!
Without the manmade Mitral Valve I now own, I believe I would have died years ago. And those cataract surgeries, WOW, now I have one eye for distance, and one for reading! AND only a few years before, I would have no lens, and those glasses I would have had to wear were called, bottle cap glasses because the lens were so thick! one of my uncles usta have to wear them, and now I have and own a pair internal contact lens! WOW

 

[pellicle]

Maybe AI technologies will be useful in the future to design a valve that is specifically made to fit your heart, sometime in the future (but FDA approval will probably take YEARS).

I wonder if we'll ever get to the point where FDA approval is based on an AI evaluation of the submitted data.

Mate, I'd love to see how that AI gets trained ;-)

 

[sharky7]

I wonder if we'll ever get to the point where FDA approval is based on an AI evaluation of the submitted data.

Mate, I'd love to see how that AI gets trained ;-)

NP with the training of the AI, only thing ya need is the data/info you need it trained in, hmmm, to be in digital form, than ya only need to feed it to the AI, and it is instant, well depends on how large the file is that is being used to train the AI! If it is a few thousand ZIGABYTES, than it may take a bit longer!

 

[sarashreen]

Hi Sarashreen.

If you have any question about whether Cryolife promotes the Ross Procedure, please click the link below, which will connect you to the arm of their website promoting the Ross. You will notice that this is nothing short of a strong promotion, basically an advertisement, for the Ross Procedure.

https://www.cryolife.com/avr/the-ross-procedure/

Home > Aortic Valve Replacement Solutions > The Ross Procedure

In cyrolife website, there is link aortic valve replacement solutions. If you click this link, there are promotions for

On-X Aortic Valve,​

ROSS.

You are creating impression here that cyrolife only promotes ROSS.

Below link promoting on-x

https://www.cryolife.com/avr/on-x-aortic-valves/

 

[Chuck C]

Home > Aortic Valve Replacement Solutions > The Ross Procedure

In cyrolife website, there is link aortic valve replacement solutions. If you click this link, there are promotions for

On-X Aortic Valve,​

ROSS.

You are creating impression here that cyrolife only promotes ROSS.

Below link promoting on-x

https://www.cryolife.com/avr/on-x-aortic-valves/

Well, they do not only promote the Ross. I'm not sure what I said which gave you that impression that they do. They also own the patent for the On-x valve, and they clearly promote that as well, per your link. They have many other products, which they also promote. They are a large corporation with financial interests in many areas of medicine. I will say that, in my observation, they are very aggressive in their promotion. There is nothing illegal with promotion, but just important to understand that it is indeed promotion.

 

[pellicle]

Why should cyrolife promotes ROSS?

I wonder if you have thought about what the cryo means in cryolife?

Would it be perhaps cryopreservation?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5395684/
do On-X valves need cryopreservation?

 

[Protimenow]

AI is certainly advancing at a fast rate. There are still many issues with it, and it will take years to eliminate these.

As a writer/editor, I'm a bit challenged by the ability of ChatGPT to come up with readable articles - readable, but not always accurate.

AI may wind up proofreading a lot of material that is written. It'll probably all be pretty bland, sometimes inaccurate - but will be good enough for plagiarism, easily written reports, perhaps technical papers based on existing knowledge, etc.

It may even be useful to drill down, based on existing medical research papers and other sources, and find appropriate diagnostic materials or even come up with 'cures' or appropriate diagnostic procedures and, yes, diagnoses and treatment plans.

I'm not entirely sure about robotic, or AI machine controlled surgery - but it may not be too long until we see the role of the surgeon as a specialist who monitors the autopilot robot doing the surgery. (This may be something like making sure that the car stays in its lane, and doesn't rear-end the car in front of it, or hit a motorist who jumps in the way of the car).

There's enough misinformation out there that it'll take years to whittle it down to usable fact vs. erroneous speculation, but we may get close enough that much of it is useful.

And, as others have said, this may happen sooner than we think it will.

At that point, the only REAL jobs that will continue to be of increasing value are the ones that involve actual hands on experience and expertise and are unlikely to be replaced by robotics or AI - plumber, electrician, construction worker, etc. doing jobs that robotics and AI can't take over.

 

[BCAVR]

Next steps— scheduled a Ross with Dr. El-Hamamsy in a couple months. Thanks for the discourse here, y’all.

 

[tommyboy14]

I wish you best of luck with your surgery. I am in your age group so know how shocking this can be. Please let us know once you are on the other side.

All the best and I will keep my fingers crossed.

 

[ashadds]

I'm late to this thread - I just discovered it.

I have a St. Jude valve - it was implanted in August 1991.

I also had a TIA -- the meter that I trusted was telling me that my INR was 2.6 - it was 1.6 in the hospital. My left leg felt 'heavy.' It didn't feel right. I suspected that I may have had a stroke and took two regular (not the 81mg) aspirin. I had no medical insurance at the time, so I avoided going to E.R. at the time.

I put up with this - it didn't get better - and the next day, I did some shopping, and made a few phone calls, and was told that the County hospitals can help me at no charge. On the evening of the second day, I went to County hospital, didn't tell the Triage people that I thought I had a stroke, and the NEXT day, they checked me out.

My stroke was no doubt related to my weeks (?) of having a much lower INR than my meter told me.


I've been using my own meters for testing, and maintained my INR in range almost always since then.

I expect my mechanical valve to last as long as I do.

Now - as far as statins are concerned (I see that you take Atorvastatin), for some people, the use of statins is a political issue - as is the definition of 'good' or 'bad' cholesterol, or LDL values as predictive of cardiac outcomes.

(The book 'The Great Cholesterol Myth' discusses this pretty fully, and cites a great deal of research. )

I took statins briefly after my stroke - I didn't like what it did to me (lack of muscle mass, for example).

I'm not going to weigh in on the Ross procedure.

I'm also a supporter of using a target value of 2.5 - 3.0 for people with On-X valves - I don't see the value of having an INR around 1.5 if the benefits are low and risks are high.

if I may ask what changed from now to then ? Did you replace the meter, do you have a coagucheck now ? How do you calibrate the meter for reference

 

[Protimenow]

Long story:

I was using (and trusting) the Hemosense meter. This meter was later removed by the FDA because of accuracy issues (it WASN'T accurate for some people - including me). Once I had my TIA, I had a goal of finding the meter that I would trust my life with.

I tested the Protime Classic and the newer Protime meters. I tested the Coaguchek S (a model that was replaced by the XS), the XS and XS Plus, and the Coag-Sense PT1 (the original model) and the Coag-Sense PT2 (the new, slicker, model). I ran tests comparing certain meters to certain other meters, and ran lab tests.

The Protime meters were apparently discontinued, so they dropped out of the list (testing was more difficult than with the other meters, and strips had to be refrigerated). The InRatio were a definite no no.

I ran into labs that were grossly wrong.

At first, I was a strong proponent of the Coag-Sense meter. The results were often slightly below those of the XS, and I felt more comfortable with an INR that may have been slightly below the actual value (so that my INR wouldn't drop below safe numbers) than I did the XS, with was slightly above the labs and the Coag-Sense - because I prefer dosing for a value that is too low, rather than too high.

Over the past few years, with new management, strips that were unavailable on eBay, and results that I no longer trusted, I switched my faith to the XS. I have two or three XS meters, and one XS Pro (designed for hospitals or clinics), and the results of testing on each meter are very close. The meters are RELIABLE - they work, they give the same results, and the results are within accuracy limits of lab tests that are done correctly.

I'm not a spokesperson for Roche (manufacturer of the XS family), nor am I in any way compensated by them for writing my opinions, but it's my sense that Roche takes great care in assuring the accuracy of its meters and testing (there was a strip recall a few years ago, and Roche handled it well), because they have way too much to lose if meters fail or strips provide inaccurate results.

I'm comfortable trusting my life to the XS, but occasionally run lab tests just for verification.

I was hospitalized on September 11 - 13 and had INR tested each day, and went to E.R. a few days later with broken ribs, and an INR test was conducted in the E.R. All results at the hospital lab were well withing range of the INR reported by the XS.

So - a short answer to your question: -- it was an InRatio tester that gave the wrong result. After a few years of testing, I've decided to use meters that use the CoaguChek XS strips.

 

[DrCooper]

This is an old topic, but somehow revived recently.

I've read several studies that compared mechanical vs biological complications.
It turns out that the risk of thrombosis is either the same or slightly higher with mechanical (~50% more).

Risk of bleeding on the other side is significantly more with mechanical in all these studies (roughly 2 times higher).
At the same time and as expected risk of re-op is significantly more with tissue (roughly 3 times higher).

So that is to say that even bioprosthesis may bear the risk of thromboembolism.

Citing a relatively recent study here:
https://www.sciencedirect.com/science/article/abs/pii/S0022522321002178
The table below is actually describing the modelled relative risks by age group is quite interesting:

Mainly with biological for patients below 55 years old, the rate of bleeding is about the same, while reintervention is 6.5x higher in the biological group. Last stroke seems to be approx. 1.3x more in mechanical.

Not sure if the tissue valve patients receive anticoagulation. I guess it's typical to do so in the first 3 months post-op, but not in the long-term, so a bit confused about the bleeding events being roughly equal.

 

[pellicle]

Not sure if the tissue valve patients receive anticoagulation. I guess it's typical to do so in the first 3 months post-op, but not in the long-term,

this is true, but then (as I understand it) the requirement to be on some type of ACT due to other factors such as:

• afib or some arrhythmia
• a stroke
• the valve begins to "throw clots" (or thombose)
• ...

may see those patients commence ACT some time later but perhaps before they require a redo or other intervention.
This was discussed by Dr Schaff in his may presentation from 2009


... but is also addressed in the literature (variously)
https://www.sciencedirect.com/science/article/pii/S0735109717360163

Abstract​

Bioprosthetic valve (BPV) thrombosis is considered a relatively rare clinical entity. Yet a more recent analysis involving a more systematic echocardiographic follow-up, the advent of transcatheter heart valve (THV) technologies coupled with the highly sensitive nature of 4-dimensional computed tomographic imaging for detecting subclinical thrombi upon both surgically implanted and THVs, has generated enormous interest in this field, casting new light on both its true incidence and clinical relevance. Debate continues among clinicians as to both the clinical relevance of subclinical BPV thrombosis and the value of empirical oral anticoagulation following BPV implantation. Furthermore, currently no systematic, prospective data exist regarding the optimal treatment approach in THV recipients.​

...

Conclusions​

The advent of TAVR, and recent findings of subclinical leaflet thrombosis in both transcatheter and surgically implanted BPVs, has spurred intense interest in the thrombogenic profiles of BPVs per se, particularly with regard to defining optimal therapeutic strategies for preventing thromboembolic complications. Meanwhile, the lack of prospective, randomized data following surgical BPV implantation has also led some to question the role, efficacy, and duration of empirical systemic OAC following surgical BPV implantation, particularly within the aortic position. ​

​

so a bit confused about the bleeding events being roughly equal.

I suspect that the answer lies in the answer to these questions:

• what is the age related risk of a bleed in the general population
• does the risk of a bleeding event increase with age (I'm suspecting its yes)
• how far away from the age related risk of a bleed are "tissue valve" patients

HTH