Potential replacement of mitral mechanical to tissue valve, age 40

Help Support ValveReplacement.org:

Christyleedh

Member
Joined
Oct 22, 2021
Messages
21
Hey everyone! Like most of you, I have quite a history, and would love to hear any input you may have on my current situation.

2012, age 32 - aortic valve replacement- porcine valve. Had heart and kidney failure, in ICU for 10 days, but completely recovered, back to work in six weeks after surgery.

2017, age 37- had mechanical mitral valve replacement, tricuspid repair and CABG because the first surgeon had apparently sewn shut my coronary artery. We did not find this out until a heart cath five years later. luckily the collateral arteries took over, but it explains my complications after first surgery).

within the last four years, I’ve been having recurrent episodes of stroke like symptoms - couple times per year. I have spots on brain that show recurrent strokes- some silent, some not. Luckily everything has been minor so far but doctors are concerned the next ones might be more severe.

My INR has been in range during most recent episodes, and they have never found a blood clot on my valve. I check my INR twice a week at home, and am also on a daily dose of warfarin. They recently switched me from aspirin to plavix.

2021- now I’m 40, and still have an aortic tissue valve which will need to be replaced eventually- but for now it’s looking good. My doctors are saying as a last resort to prevent these recurrent strokes, they are recommending a third OHS to replace the mechanical mitral valve with a tissue valve.
They feel confident that my strokes are due to my mechanical valve. However, I have several risk factors that make me at risk for strokes, regardless of my valve.

I am a 40-year old woman, migraine with aura, severe raynaud’s, and small vessel disease. All of which could independnetl

My questions are:

have any of you replaced your mitral valve with a tissue valve when you are this young?

How long do they last?

Also, anyone had strokes attributable to raynaud’s or migraine?

My fear is that my mitral valve is not causing the spots on my brain/stroke-like symptoms. I have a follow up with my neurologist but I’m wondering what other specialist I should see to evaluate everything and for a second opinion before I make a decision about a third surgery, and I will probably need a fourth and fifth eventually as well.

Thanks everyone!
 

MdaPA

Well-known member
Joined
Jul 8, 2020
Messages
203
My INR has been in range during most recent episodes, and they have never found a blood clot on my valve.
they are recommending a third OHS to replace the mechanical mitral valve with a tissue valve.
They feel confident that my strokes are due to my mechanical valve.
Do they suspect a defect with your mechanical MV which might indicate replacing with another mechanical MV?

2012, age 32 - aortic valve replacement- porcine valve.
I’m 40, and still have an aortic tissue valve which will need to be replaced eventually- but for now it’s looking good.
As your porcine AV is approaching 9-10 years, if they replace your MV in your 3 OHS, would it make sense to replace your AV valve as well?

If you are having strokes regardless of the mechanical valve, will you still require warfarin if they replace your MV with a tissue valve?
 

Christyleedh

Member
Joined
Oct 22, 2021
Messages
21
Do they suspect a defect with your mechanical MV which might indicate replacing with another mechanical MV?




As your porcine AV is approaching 9-10 years, if they replace your MV in your 3 OHS, would it make sense to replace your AV valve as well?

If you are having strokes regardless of the mechanical valve, will you still require warfarin if they replace your MV with a tissue valve?
They have not detected a defect in it. I think they think I’m getting very tiny blood clots on it. They may require warfarin or other blood thinner, because I may still have a risk of stroke.

And I don’t know the answer to the other questions.

Previously, when I replaced the mitral valve they had planned to do a mechanical aortic valve whenever the tissue valve failed, which would have been my final OHS. at the time, they thought it was an unnecessary risk to replace the aortic when it was looking good, and the second OHS was already complicated enough.

The AV still looks good. so I think they would be hesitant to replace it, but that will be what I need to discuss with them. If l get a mitral tissue valve now, I’m looking at multiple ones in the future where they could replace the aortic valve then.

They think I’m only having strokes because of the mechanical valve, but I’m worried if the valve is not the cause, then replacing it with a tissue valve won’t make a difference.

It’s the most obvious cause, but might not be the cause.

I meet with the doctors next week. Im hoping they do a thorough investigation for stroke without the doctor assuming it’s my mechanical valve.

I wonder if others have had a similar issue- where the cause of the strokes is not clear?
 

MdaPA

Well-known member
Joined
Jul 8, 2020
Messages
203
I meet with the doctors next week. Im hoping they do a thorough investigation for stroke without the doctor assuming it’s my mechanical valve.
Have they ruled out/tested for other things like irregular heart rhythms, blood or genetic disorders, etc?
WHAT’S AT THE HEART OF MY CRYPTOGENIC STROKE?

2017, age 37- had mechanical mitral valve replacement
within the last four years, I’ve been having recurrent episodes of stroke like symptoms - couple times per year.
But from your timeline, it looks like your stroke symptoms started around the time/after you got the mechanical MV, correct?

My INR has been in range during most recent episodes, and they have never found a blood clot on my valve. I check my INR twice a week at home, and am also on a daily dose of warfarin. They recently switched me from aspirin to plavix.
What is your current INR range and did they also up it for additional prevention from another stroke?

have any of you replaced your mitral valve with a tissue valve when you are this young?
How long do they last?
My wife was 33 when she had her MV replaced with a Bovine tissue value and it lasted 17 years. She had it replaced with a mechanical valve in 2017 (her 3rd OHS).

Similar to your case, her AV (previously replaced with her PV from a Ross procedure) was in fairly good shape after 20 years but her surgeon recommended that it also be replaced with a mechanical AV during that same surgery as her MV valve was replaced to reduce the likelihood of a 4th OHS (note she did get a 2nd opinion with another surgeon who said he would only replace her MV with a tissue valve, not mechanical valve, and would not replace her functioning AV in that same OHS but she did not go with this).
 

Christyleedh

Member
Joined
Oct 22, 2021
Messages
21
They have done testing before but I don’t know if they have exhausted all possibilities, which I’m hoping they do. As for the timeline, they did start after my surgery, but I’ve also been getting older and risk of stroke I think goes up with age- and the symptoms of all my other issues start to show too around this time.
My INR range is now 3.0-3.5 and it was 2.5-3.5, so they are keeping me on the higher end. My INR was in the 3.0 when I had my most recent episode. I’m going to review the thread you linked.
also, I’m glad to hear your wife went so long with her mitral valve. I’ve heard the tissue valves in the mitral position may only last five years.
Thanks!
 

drleng

Active member
Joined
Oct 22, 2021
Messages
26
It sounds like you have a systemic autoimmune disease which can cause your original aortic valve disease. Vasculitis also can explain your recurrent strokes without attributing blame on your mechanical valve. Moreover, your INR is already in high therapeutic range.
A neurologist is the right specialist to consult. A full workup with autoimmune studies etc should already have been done. If necessary get a 2nd opinion. I would question having so many surgeries. Why replace something that ain't broke?
Yup, get a 2nd opinion
 

Christyleedh

Member
Joined
Oct 22, 2021
Messages
21
It sounds like you have a systemic autoimmune disease which can cause your original aortic valve disease. Vasculitis also can explain your recurrent strokes without attributing blame on your mechanical valve. Moreover, your INR is already in high therapeutic range.
A neurologist is the right specialist to consult. A full workup with autoimmune studies etc should already have been done. If necessary get a 2nd opinion. I would question having so many surgeries. Why replace something that ain't broke?
Yup, get a 2nd opinion
I think you are on to something. I’ve been evaluated for MS, but they don’t think I have it. The hematologist did blood work but didn’t find anything. I went to a rheumatologist who just looked at me and said why are you here? It wasn’t very helpful. I do think I need a second opinion!
 

drleng

Active member
Joined
Oct 22, 2021
Messages
26
Sigh, that's the problem with subspecialization... They only look at what concerns their field and don't see the big picture. Neurologists and rheumatologists are also internal physicians and either should have been able to give you a proper diagnosis based on a full history and investigations. I'm surprised they have not over the years.
You need to pool all the results of your tests so far (scans, blood work), surgery reports and a detailed history with timeline. Present to an internal physician who specializes in autoimmune diseases. There may be tests which have not yet been done but which can give you a proper final diagnosis. Search for a good one near you.
If it's vasculitis causing your strokes, another OHS is totally unnecessary.
Good luck!
 

Christyleedh

Member
Joined
Oct 22, 2021
Messages
21
Sigh, that's the problem with subspecialization... They only look at what concerns their field and don't see the big picture. Neurologists and rheumatologists are also internal physicians and either should have been able to give you a proper diagnosis based on a full history and investigations. I'm surprised they have not over the years.
You need to pool all the results of your tests so far (scans, blood work), surgery reports and a detailed history with timeline. Present to an internal physician who specializes in autoimmune diseases. There may be tests which have not yet been done but which can give you a proper final diagnosis. Search for a good one near you.
If it's vasculitis causing your strokes, another OHS is totally unnecessary.
Good luck!
Thank you! I think that is a good approach!
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
1,175
Hi Christy.

If you have not had your lipoprotein(a) tested Lp(a), I would strongly recommend getting it tested. High levels are strongly correlated with valve calcification and also correlated with strokes, yet it is not even on the radar screen of most US cardiologists, although that is changing slowly. Europe is a few years ahead of us in this regard and their guidelines now recommend universal testing.

Hopefully, your cardiologist has at some point ordered you an advanced lipid panel. If he ordered it from Quest Diagnostics, it would have been the CardioIQ, and if it was ordered after 2015 it should include Lp(a). If your advanced panel was done at Labcorp, it will not include Lp(a)

Lp(a) and stroke:

“Conclusion— This meta-analysis suggests that elevated Lp(a) is a risk factor for incident stroke.”

Lipoprotein (a) and Stroke

Lp(a) and valve calcification:

“Over 20 studies (Table 1) have established lipoprotein(a) [Lp(a)] as a genetically determined and likely causal risk factor for calcific AV stenosis and a predictor of faster calcific AV stenosis progression.”

The Role of Lipoprotein(a) in Calcific AV Disease and Insights Into Its Medical Therapies - American College of Cardiology


I expect your cardiologist or GP would order the test if you ask them to, but if for some reason they don’t, I would strongly encourage you to order it yourself. You can place a lab order through Direct Labs, to be done by either Quest or Labcorp for $55.

Lipoprotein (a) Blood Test | Walk-In Lab

Once you have had Lp(a) tested, if it is in the normal range, you should not ever need to have it tested again, as its level is determined genetically and diet and exercise have virtually no effect on it.
 

Christyleedh

Member
Joined
Oct 22, 2021
Messages
21
Thanks for the tip. That sounds familiar but I didn’t find it specifically in my chart. I’ll ask about it.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,101
Location
Queensland, OzTrayLeeYa
Hi

sorry I can't answer your questions, but with respect to this:
They feel confident that my strokes are due to my mechanical valve. However, I have several risk factors that make me at risk for strokes, regardless of my valve.
...
My fear is that my mitral valve is not causing the spots on my brain/stroke-like symptoms. I have a follow up with my neurologist but I’m wondering what other specialist I should see to evaluate everything and for a second opinion before I make a decision about a third surgery, and I will probably need a fourth and fifth eventually as well.
I would be very cautious about accepting their confidence, as you've said (and has been observed) there are other causes of stroke.

My doctors are saying as a last resort to prevent these recurrent strokes, they are recommending a third OHS to replace the mechanical mitral valve with a tissue valve.
pardon this slant, but what if they continue? Asking surgeons if you need surgery is a bit like asking a car spray painter if your car needs re-painting ... they're inclined to say yes.

Your situation is unusual, but I would wonder also (there have already been a bunch of good conjectures) if the coronary artery issue is not a contributor.

I'm curious if you've had a d-dimer test, as it may, as I understand it, clarify if the strokes are caused by thrombosis.

I would be very cautious about rushing into an operation to replace the existing and functioning valve. There are many risks to having a 3rd, not to mention a 4th and 5th surgery. You may not be anywhere near as healthy as you are now.

Of course this cause for stroke must be resolved.

The most I can say is to advise you to become your own advocate (or someone close who cares about you) and go through the data from scans and studies to inform your enquiry for what to do next. Seek professionals who are willing to engage with you. Set emotions aside and don't be pushed into a surgery you may not need. Keep asking with more data under your wing here for opinions, sort through those and pick what seems helpful and follow that lead. Diversity is only a benefit.

Best Wishes
 

Christyleedh

Member
Joined
Oct 22, 2021
Messages
21
Hi

sorry I can't answer your questions, but with respect to this:


I would be very cautious about accepting their confidence, as you've said (and has been observed) there are other causes of stroke.



pardon this slant, but what if they continue? Asking surgeons if you need surgery is a bit like asking a car spray painter if your car needs re-painting ... they're inclined to say yes.

Your situation is unusual, but I would wonder also (there have already been a bunch of good conjectures) if the coronary artery issue is not a contributor.

I'm curious if you've had a d-dimer test, as it may, as I understand it, clarify if the strokes are caused by thrombosis.

I would be very cautious about rushing into an operation to replace the existing and functioning valve. There are many risks to having a 3rd, not to mention a 4th and 5th surgery. You may not be anywhere near as healthy as you are now.

Of course this cause for stroke must be resolved.

The most I can say is to advise you to become your own advocate (or someone close who cares about you) and go through the data from scans and studies to inform your enquiry for what to do next. Seek professionals who are willing to engage with you. Set emotions aside and don't be pushed into a surgery you may not need. Keep asking with more data under your wing here for opinions, sort through those and pick what seems helpful and follow that lead. Diversity is only a benefit.

Best Wishes
Thank you!
I don’t know if I have had the d-dimer test, or if being on warfarin or plavix would skew the results. I think I might have, as the hematologist did specific blood work to determine if I had any clotting disorders that may have been causing the strokes.
I am definitely going to ask questions about this. My neurologist has not yet seen the most
Recent imaging from after my Stroke this week, but he will be looking at it this week.
He has previously said the location of the spots on my brain showing the strokes makes him think it was from the valve. I’m interested to see if this one shows something similar. I am going to ask him what his opinion would be if I came to him with no heart history, what he would think the cause was.
I do think I need to find a vascular and autoimmune specialist as well before seeking a surgeon’s opinion.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,101
Location
Queensland, OzTrayLeeYa
Hi
I don’t know if I have had the d-dimer test, or if being on warfarin or plavix would skew the results.
to my knowledge ... no

I think I might have, as the hematologist did specific blood work to determine if I had any clotting disorders that may have been causing the strokes.
I am definitely going to ask questions about this.
absolutely always worth asking :)

My neurologist has not yet seen the most Recent imaging from after my Stroke this week, but he will be looking at it this week.
good...

He has previously said the location of the spots on my brain showing the strokes makes him think it was from the valve.
well its interesting ... looking at the anatomy

1635043028723.png


freshly oxygenated blood from the lungs come into the left via the pulmonary vein into the heart. The Mitral and the Aortic vaves work to prevent blood going back to the lungs (the Mitral) and preventing blood pushed OUT of the heart into the body from flowing back into the pump (which is the job of the Aortic).

So as nothing flows out of the heart from the mitral valve I'm a bit confused why he would be fingering the Mitral when (as you can see) there isn't much distance between the two valves and it could just as easily be the Aortic valve throwing a clot or somewhere in the lungs.

I am going to ask him what his opinion would be if I came to him with no heart history, what he would think the cause was.
that's a great question and I'm wondering if he'd say "aortic" ...

I do think I need to find a vascular and autoimmune specialist as well before seeking a surgeon’s opinion.
agreed

I think a lot of this stuff needs to be thrashed around rather than just chucking you on a table and doing another valve replacement.

Best Wishes
 

RAS

Well-known member
Joined
May 1, 2020
Messages
54
Location
Omaha, NE
You've received great responses with potential areas to research. I'll add just a couple more.
stroke like symptoms
I had brief stroke like symptoms once within about six months of my AVR in 2006. An echo showed fibrin strands were visible on my valve. I was told the episode was likely from embolized fibrin strands. Recommended treatment was a daily aspirin thereafter. Eventually after 7 years no strands were visible on my echo. Presumably they embolized, but caused no symptoms (but the strands returned this year). You might want to discuss the possibility that fibrin strands are forming on your valve and possibly embolizing. It's a rather debatable concern since for most people these strands seem to cause no issues, however it's worth asking.

severe raynaud’s,
I also have Reynaud's, but it's very mild. No indication from my Cardio of any correlation to the stroke like symptoms, however both symptoms showed up around the same time. Another thing that started after my surgery was low white blood cell count. My WBC has been low, but stable ever since. Eventually I saw a Hematologist to do further testing. One of the tests was for lactate dehydrogenase (LDH) which is an indication of tissue damage somewhere. My LDH was slightly high. The Hematologist concluded this was likely the result of damage to red blood cells flowing across the mechanical valve. If you have not had that test already, it might be worth looking into. I did see one study that indicated high LDH in association with mechanical valves could be an indication of valve malfunction. I would guess that implies a higher probability of thrombotic events.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,101
Location
Queensland, OzTrayLeeYa
If you have not had that test already, it might be worth looking into. I did see one study that indicated high LDH in association with mechanical valves could be an indication of valve malfunction. I would guess that implies a higher probability of thrombotic events.
great suggestion. I would wonder if this is more prevalent with older valves (such as the single tilting disc models)? I can't be sure.

However as there is always diversity in any genetic group it could be that platelet aggregation is being triggered by either the whack on the arse on the way out the (closing valve) door, (which it may get a few times due to their (about) 10 day half life) or the pressure at the "squirt" on opening and closing (platelets can be activated by such pressure jets.

I concur with the aspirin (I find I need it too ...)

Best Wishes

PS:

The velocities measured at the leaflet tip resulted in sustained shear rates in the range of 1500–3500 s−1, with peak values on the order of 11,000–23,000 s−1...
...Red blood cells and platelets are activated, damaged, or lysed by elevated fluid stresses. Prolonged exposure to laminar shear stresses above 1500 dynes/cm2 is generally thought to cause hemolysis [4]. Similarly, submerged fluid jets with Reynolds stresses above 4000 dynes/cm2 can cause red cell lysis [5].
 
Last edited:

Christyleedh

Member
Joined
Oct 22, 2021
Messages
21
Hi


to my knowledge ... no



absolutely always worth asking :)



good...



well its interesting ... looking at the anatomy

View attachment 888189

freshly oxygenated blood from the lungs come into the left via the pulmonary vein into the heart. The Mitral and the Aortic vaves work to prevent blood going back to the lungs (the Mitral) and preventing blood pushed OUT of the heart into the body from flowing back into the pump (which is the job of the Aortic).

So as nothing flows out of the heart from the mitral valve I'm a bit confused why he would be fingering the Mitral when (as you can see) there isn't much distance between the two valves and it could just as easily be the Aortic valve throwing a clot or somewhere in the lungs.



that's a great question and I'm wondering if he'd say "aortic" ...



agreed

I think a lot of this stuff needs to be thrashed around rather than just chucking you on a table and doing another valve replacement.

Best Wishes
I’m hoping I can avoid the third OHs! Thanks!
 

carolinemc

Well-known member
Joined
May 31, 2010
Messages
978
Location
kansas city, mo
They have not detected a defect in it. I think they think I’m getting very tiny blood clots on it. They may require warfarin or other blood thinner, because I may still have a risk of stroke.

And I don’t know the answer to the other questions.

Previously, when I replaced the mitral valve they had planned to do a mechanical aortic valve whenever the tissue valve failed, which would have been my final OHS. at the time, they thought it was an unnecessary risk to replace the aortic when it was looking good, and the second OHS was already complicated enough.

The AV still looks good. so I think they would be hesitant to replace it, but that will be what I need to discuss with them. If l get a mitral tissue valve now, I’m looking at multiple ones in the future where they could replace the aortic valve then.

They think I’m only having strokes because of the mechanical valve, but I’m worried if the valve is not the cause, then replacing it with a tissue valve won’t make a difference.

It’s the most obvious cause, but might not be the cause.

I meet with the doctors next week. Im hoping they do a thorough investigation for stroke without the doctor assuming it’s my mechanical valve.

I wonder if others have had a similar issue- where the cause of the strokes is not clear?
I have a St Jude's leaflet Aortic Valve and on Warfarin. No problems with clots, only when I was not on it for a short time. Had eye stroke and found out it is more common than it was not know a few years ago amongst Diabetics. And I am a Type 2 Diabetic. So keep being proactive and get more educated on what can cause strokes and the prevention for Heart Patients. Have a nice day.
 

Christyleedh

Member
Joined
Oct 22, 2021
Messages
21
You've received great responses with potential areas to research. I'll add just a couple more.


I had brief stroke like symptoms once within about six months of my AVR in 2006. An echo showed fibrin strands were visible on my valve. I was told the episode was likely from embolized fibrin strands. Recommended treatment was a daily aspirin thereafter. Eventually after 7 years no strands were visible on my echo. Presumably they embolized, but caused no symptoms (but the strands returned this year). You might want to discuss the possibility that fibrin strands are forming on your valve and possibly embolizing. It's a rather debatable concern since for most people these strands seem to cause no issues, however it's worth asking.



I also have Reynaud's, but it's very mild. No indication from my Cardio of any correlation to the stroke like symptoms, however both symptoms showed up around the same time. Another thing that started after my surgery was low white blood cell count. My WBC has been low, but stable ever since. Eventually I saw a Hematologist to do further testing. One of the tests was for lactate dehydrogenase (LDH) which is an indication of tissue damage somewhere. My LDH was slightly high. The Hematologist concluded this was likely the result of damage to red blood cells flowing across the mechanical valve. If you have not had that test already, it might be worth looking into. I did see one study that indicated high LDH in association with mechanical valves could be an indication of valve malfunction. I would guess that implies a higher probability of thrombotic events.
Thanks for the ideas!
 

Patrick2018

Member
Joined
Mar 17, 2021
Messages
13
I have been diagnosed with severe mitral stenosis in my bovine mitral valve. Do you know if replacement are being performed arthroscopicly.
 
Top