Stroke Machine?

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Julian

Julian

VR.org Supporter
Supporting Member
Joined
Jun 20, 2011
Messages
585
Location
Southern California
I don't know if a mechanical valve has ever been referred to as a "stroke machine" or "stroke factory". I have worry and anxiety about having mini strokes or TIA's or an actual stroke. I don't obsess over it but it comes into my mind daily. I may feel a little dizzy, can't think clearly, vision gets a little blurry, or have general strange sensation or sensations and then a thought pops into my mind, "oh no mini stroke... oh no is this a TIA, oh no stroke". "Maybe all these little symptoms I've had will build up like a volcano until it erupts into the mother of all strokes!" :tongue2:

At times makes you wish you got a tissue valve for peace of mind. Studies have shown that well managed ACT puts your stroke risk at about 1% a year, and without ACT about 10%. If you meditate/obsess on the 1% you can find yourself wanting to get this "stroke machine" out of your body ASAP...Panic! :eek2:

Every week it seems like there is a new post in the Anti-coagulation section of the forum about people freaking out about too high or low INR's followed by a post of stroke symptoms they're feeling followed by responses from other forum members "go to the ER my mom forgot to take her warfarin for 2.5 days and had a massive stroke." This is enough to make any prospective mechanical valver choose tissue in a heart beat. How I envy you tissue valvers, going to bed every night with no worries about having your INR in range or if that dizzy spell you had earlier in the day was a mini stroke. :confused2:

All in the same thought concerning tissue valves how I would dread repeat surgery along with repeat slow recovery. I equally dread the thought of having to endure another surgery of this magnitude in my lifetime a guarantee if I had a tissue valve considering my age. I've said this before and I'll say it again, go mechanical and you have a little worry everyday...sigh. Choose tissue and you will face a big worry all at once eventually. :thumbup:
 
Brother Julian,

I know how you feel. I told my cardiologist about the eye event I had 2.5 weeks ago and I also got my eye checked out by an eye doctor. They think I may have had AMAUROSIS FUGAX, which is a small blood clot to the eye. My INR was 2.2 at the time so my cardio wants me to go up to 2.5-3.5 which is a bummer. Now I will worry about stroke more than I would have.

Every time I feel sorry for myself, however, I remember a father of 3, at church, who's dying of colon cancer, a former high school classmate of mine who's dying of multiple myeloma or my neighbor who's had a brain tumor and is blind. In spite of my situation, I'm grateful to God that I'm alive and that I feel good right now.
 
Julian, I can't comment on the stroke machine, however I found redo surgery not as bad as I had imagined.
Chaconne when I think VR is bad I always remind myself that it would be much worse to have cancer.
 
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Hi Julian.

Remember that well managed INR puts you only slightly more at risk of a stroke than with a tissue valve.. And 1% is pretty low. Robert Emery did a 20 year study with mechanical valves- the first st Judes mech valve and 97% were free from a stroke, nobody died of a stroke and event free survival of 92% with most incidents happening in the first 6-12 months. And you have a nice new on x valve which potentially has a lower incident rate with much better INR management than 20 years ago.

I must admit I worry about the same thing and getting infections etc. But this is only because we know about it. Statistically 1 in 3 people get cancer during their lives. People don't worry about this everyday. It's just a bit more obvious for us with a scar, valve noise and taking a Dailey pill. It's only normal I guess but I think after a certain time it will just become a way of life. And remember there are plenty of 'normal' people who have strokes!

Oh and I just had a redo op after my failed tissue valve. I must say it made me think 'what the hell was I thinking wanting this op again'!
 
Hey Julian

TIA is a scary place I'm familiar with. Back in 2006 I had an event which emerg said was a TIA, my doctor went with that and put me on all kinds of meds and yellow alert. The same symptoms came and went every week, I spent many nights in the ER. Eventually - a year later - I got to see one of Ontario's formost Neurologists and he said it wasn't TIA at all - it was a MIGRANE without the headache mimicing the symptoms of a stroke. All the doctors previously involved bowed down and took his estemed postion and backed off so I figured I should too and went back to living life.

I still get "complex Migraine Aurea" but the syptoms are better since surgery. My face dosn't droop, my speech dosn't slurr but I get weak and vision goes loop de loo if one comes along. Since then I learned that doctors are indeed "practicing" medicine, it takes a while for them to come up with an answer so I try not to worry until they have a result from their practicing and keep my uneducated thoughts outa their territory.

Bob
 
Wow Julian, that's a new one....stroke machine?? I used to think the little "ball" in my valve would get stuck open or closed and "what would happen" if either ocurred....I don't think about this anymore. It is natural to have a bit of "buyers remorse", but try not to dwell on it.....it can drive you nuts.
 
Julian - I posted some of this recently in another thread, but it applies equally well here:

Consider how many valve replacement patients, that were data points establishing stroke risk per year due to prosthetic valves, have had one or more of the following characteristics: age 55 or above, AFib, high blood pressure, previous stroke, high cholesterol, diabetic, overweight, and the list goes on and on... Then consider how many of the stroke events were actually multiple events of the same patient. Many studies suggest that patients risk factors are much more directly responsible for stroke in valve patients than the valve itself. The takeaway point for me is to control what's controllable. It's not just anticoagulation and INR, it's things like healthy diet, exercise, and obviously smoking is a big no-no. Now, getting older, unfortunately I haven't come up with a solution for that one yet...

As Mark pointed out, the good news for modern day mechanical valves is that many studies are suggesting comparably low stroke events as tissue valves. Yes, my tissue valve puts me at a heightened risk to the population at large too, so I think about it at times. But you know what...did you worry about stroke everyday when you were walking around with your bicuspid aortic valve? I didn't. Guess what, though, you were at a higher risk of stroke than your non BAV friends then too. As you know, at your age it wasn't just one more surgery, it was multiple. Valve surgery is yet another way to cause a stroke.

Truth is, you potentially have the best mechanical valve out there. No one has a clue what the long term stroke risk really is for someone in their 20s with well controlled INR. Best guess, lower than what they think it is now. Perhaps in 50 years, someone roughly your age will post a question here about whether he should worry about a 0.001% risk of stroke with the valve of the future. You need to plan on being the one to tell that guy not to worry, because you've been stroke free for 50 years with your ancient On-X valve...
 
Julian said:
At times makes you wish you got a tissue valve for peace of mind. Studies have shown that well managed ACT puts your stroke risk at about 1% a year, and without ACT about 10%. If you meditate/obsess on the 1% you can find yourself wanting to get this "stroke machine" out of your body ASAP...Panic! :eek2:
Click to expand...

Julian, if it helps you feel any better thinking about this. The increased stroke risk of a tissue valve is about the same as having well managed ACT with a mechanical valve. But I can certainly understand your thoughts on this matter. Either way though, either valve type is a great choice.

However the well managed ACT part is mostly the reason I did change my mind from 100% sure of mechanical valve for past three years, to preferring the possibility of one or two more tissue valves via open heart surgery. Maybe next time I need a replacement I will feel more comfortable with being capable of well managing ACT. But for now, I'm almost certain there would be often out of range periods due to fluctuating eating habits. Being a shift worker doesn't help the situation either. I'm almost certain I would have been out of range often. Some days i hardly eat and other days I'll binge on four teen burgers for lunch.

To me the risks associated with second or third surgeries would probably be a lot less than the increased stroke risk from being out of range frequently. Who knows, maybe I would have been better at it then I thought. However, I thought it better to just not take the chance for now.
 
The risk of stroke/bleed/TIA is so low if you just keep things reasonably under control that it is essentially negligible. Most of the problems occur in the very elderly, and at 64 I have 20 years or so before I'll start to worry much. There are competing risks with tissue valves. Also low but in the same range. After watching firsthand what a buddy I met through this group went through, spending many nights with him and his worried wife in the hospital, all due to the precipitous failure of his tissue valve, I don't regret my choice for a microsecond. Get on with your life. I'm so thankful I have this piece of remarkable hardware that is so reliable, durable and makes me able to do whatever I want and live just as long as anyone else who did not have the disease I had, that I can't see spending a lot of time worrying about what bad things might happen. Be aware of them, do what's appropriate to manage the risks without allowing them to discourage you or interfere with your enjoyment of life. "Stroke machine" seems sensationalistic and hyperbolic considering how well people do with these valves. Beyond that, you have an On-X valve, which if you accept the manufacturer's assertions, presents a far lower risk of thromboembolism and stroke than any other mechanical valve.
 
Bill B said:
The risk of stroke/bleed/TIA is so low if you just keep things reasonably under control that it is essentially negligible. Most of the problems occur in the very elderly, and at 64 I have 20 years or so before I'll start to worry much. There are competing risks with tissue valves. Also low but in the same range. After watching firsthand what a buddy I met through this group went through, spending many nights with him and his worried wife in the hospital, all due to the precipitous failure of his tissue valve, I don't regret my choice for a microsecond. Get on with your life. I'm so thankful I have this piece of remarkable hardware that is so reliable, durable and makes me able to do whatever I want and live just as long as anyone else who did not have the disease I had, that I can't see spending a lot of time worrying about what bad things might happen. Be aware of them, do what's appropriate to manage the risks without allowing them to discourage you or interfere with your enjoyment of life. "Stroke machine" seems sensationalistic and hyperbolic considering how well people do with these valves. Beyond that, you have an On-X valve, which if you accept the manufacturer's assertions, presents a far lower risk of thromboembolism and stroke than any other mechanical valve.
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I, also, thank you Bill, for your post. I am a big believer in "keep things reasonably under control". The majority of problems arise due to ignorance. Had I, or Bobby Darin, not been ignorant, I would not have had my stroke, and Bobby Darin would still be alive. The value of VR.com is to help educate mechanical valve owners, to use common sense while living a normal life. The valve is not looking for a way to bite you and normally it requires simple maintenance and permits normal life activiaties. Sometimes, I think too much is posted here, esspecially reagarding ACT, and gives the impression that it is "time bomb just waiting to explode"....and that is very, very far from fact. The "glass half empty attitude" is that I have to take a little pill. The "glass half full attitude" is that the valve has doubled my life expectance, so far, and in fact has interfered little with my life....and that is a very good thing.
 
one other thing, why do we have to comment on tissue valves failing again? it seems some just want to get that into any discussion we have? if somebody had anxiety about tissue on here people wouldnt come on giving bad stories about mech and anti coags? thought this was a support forum,
 
neil brewer said:
one other thing, why do we have to comment on tissue valves failing again? it seems some just want to get that into any discussion we have? if somebody had anxiety about tissue on here people wouldnt come on giving bad stories about mech and anti coags? thought this was a support forum,
Click to expand...

You know what it is, it's the "I knew it would happen" character flaw in humanity. It's like watching a high speed chase to see it ends safely... right? I don't care how caring of a person you think you are, there is large or in some people a microscopic part of your being that wants to see it end in disaster. In the case of the situation we find ourselves in on this forum there is so much thinking that goes into deciding what type of valve to choose. It's such a personal choice, not to forget the fact that this thing goes in your body and is what's keeping you alive!

You go to any other "enthusiast" forum on the internet and people will argue Ford VS Chevy all day long to the point of violence. Can you imagine heart valves, Judas Priest! I guess what I'm trying to say is that people make their decision and involuntary express themselves as to why they made the choice they did and why its better. Its like a self comforting/reassuring thing that all stems from insecurity of our choices in life, "I drive a Ferrari because its fast not because I'm trying to compensate for something else" :tongue2: LMAO!
 
Julian, I understand that is is easy to become anxious about our valves and all this talk about strokes.
BUT, we all seem to be educated about our various conditions and know that we, ourselves, can be the
best advocates for our own health and well being. Live a good healthy lifestyle and enjoy all that is around you,
regardless of valve type. :)
 
I may have misinterpreted Julian's original post. It seemed to me he was bemoaning the risk of stroke with her mechanical valve as opposed to tissue valves. I didn't mean to turn this into another tissue versus mechanical controversy thread - I hate those and generally stay out of them. My main point was intended to be that regardless of the choice of valve, the risk of serious complications, although present with either valve type, is so low and the benefits are so high that the focus of attention on the possibility of complications should be low in either case. Anyway, I meant my comment to be encouraging to all prosthetic valve recipients. I'd like to go back and edit my original reply, but that wouldn't be kosher. If you've seen any of my other posts here, you'll know that my focus is on trying to help people reduce their fear of upcoming valve surgery and to be more positive about their prospects after surgery.
 
Bill B said:
I may have misinterpreted Julian's original post. It seemed to me he was bemoaning the risk of stroke with her mechanical valve as opposed to tissue valves. I didn't mean to turn this into another tissue versus mechanical controversy thread - I hate those and generally stay out of them. My main point was intended to be that regardless of the choice of valve, the risk of serious complications, although present with either valve type, is so low and the benefits are so high that the focus of attention on the possibility of complications should be low in either case. Anyway, I meant my comment to be encouraging to all prosthetic valve recipients. I'd like to go back and edit my original reply, but that wouldn't be kosher. If you've seen any of my other posts here, you'll know that my focus is on trying to help people reduce their fear of upcoming valve surgery and to be more positive about their prospects after surgery.
Click to expand...
Thanks Bill! I always liked the expression that any valve you choose will be better than the original diseased one you have!
 
BTW Bill I'm a he not a she. : ) I don't care what anyone says I still watch car chases to watch destruction at all levels. LOL but seriously my above comment wasn't directed to anyone on this thread, if anyone took offense I'm sorry, I was just commenting on humanity in general. Technically if I was talking about humanity then that means I was actually referring to everyone on this thread LOL muhahaha!
 
So I just told my surgeon to go ahead and order the On-X valve. I finally decided to go mechanical. Worrying about strokes or worrying about the next surgery are both evils we have to deal with.
 
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