Hey guys, just wanted to post an update here.
Who I talked to:
I ultimately wound up getting other opinions - one useless one from a Stanford doc shortly after this post (I won’t even dive into it, it was a waste of time)
***and then a very comprehensive week long panel at the Mayo Clinic. I flew to Rochester MN for a week (and got trapped in a snowstorm trying to leave) but got a little more clarity on what’s potentially up, with the ultimate recommendation (they didn’t reach consensus at their conference but the majority opinion) of reoperation replacing the aortic root and valve. And my cardio there raised the Ross as an option while flagging that while he wouldn’t typically recommend it (for reasons known in this forum) it was worth discussing in my case.
The findings:
*Valve itself looks great. Zero evidence of thrombosis vegetation etc. There has never been any evidence of this in any of my multiple tests
*comprehensive CT scan revealed what the radiologist termed a limited Intimal tear in the aorta. Followed this up with another more directed TEE
*TEE clearly demonstrated the Intimal tear which can technically be termed an aortic dissection. Doc says likely happened during surgery in 2015. How ******* annoying is that? It is a very small tear but goes through the intima and somewhat into the media. Evidence that blood is collecting there and this seems to be what folks think has caused the strokes but again there was no 100% consensus. Doc said there was a patient who presented similarly, had root repair and did not have another stroke. This was not exactly a smoking gun, some folks have these tears and they don’t cause strokes. But in the absence of anything else…
*also found evidence of a small PFO (hole in septum that 30% of folks have) with the multiple echocardiograms they did and ultimately confirmed via TEE. Patching the PFO is a no brainer but seems unlikely to have caused the 3 strokes — my understanding is PFO doesn’t cause clots but just lets them pass over to go through the aorta. So wouldn’t explain why I had a stroke after being very anticoagulated. Also youd think I’d have had clot issues elsewhere which to my knowledge I’ve never had.
*also chatted with my estranged brother who - without valve disease - I learned had two different clot issues in his early 30s, one in lungs one in liver, a few years apart. After first clot was on Coumadin for 6 months was permitted to go off then had another one. No known cause, had hematology workups. Now on eliquis for a few years without issue. You’d think someone in my family would’ve mentioned this but better learning this late and having an additional data point
this is something of a confounding data point for me because 
*a third (maybe fourth) repeat massive panel of blood work for anti clotting and everything else. My **** all looks great or as expected, nothing out of range.
Next steps:
*patch PFO (not a likely cause but this is a no brainer) think they’d do this during ohs if I get the valve replaced
*add plavix to my AC regimen
*ultrasound to confirm I don’t have evidence of clots elsewhere
*decide wtf to do next. Another on-X? Tissue valve? Ross? I am just not having a great time with this artificial valve, although I’ve still been waffling on whether to go tissue or mechanical - if the tear is what’s causing the issue then the valve is fine (as it has always appeared to be on the vast array of imaging across multiple media). But without consensus, and knowing my brother also has had random clot issues… imagine getting another on-X and having this issue recur again. Woof
To that end, cardio basically asked whether I’m more worried about stroke or reoperation. When I first answered this question at 25, I was more worried about reoperation. Three strokes later, very different calculus. Reoperation is not what gives me anxiety. Maybe it should. But losing brain function / part of my identity is a lot scarier to me at this point.
If I’m going with a tissue valve I’m thinking Ross because of the potential extra longevity, my relative youth, etc. Trying to book a consult at Sinai NY to discuss w the surgeon.
Anyway, that’s the lengthy update. Probably missed some stuff but think those are the high points. Thanks for listening
Who I talked to:
I ultimately wound up getting other opinions - one useless one from a Stanford doc shortly after this post (I won’t even dive into it, it was a waste of time)
***and then a very comprehensive week long panel at the Mayo Clinic. I flew to Rochester MN for a week (and got trapped in a snowstorm trying to leave) but got a little more clarity on what’s potentially up, with the ultimate recommendation (they didn’t reach consensus at their conference but the majority opinion) of reoperation replacing the aortic root and valve. And my cardio there raised the Ross as an option while flagging that while he wouldn’t typically recommend it (for reasons known in this forum) it was worth discussing in my case.
The findings:
*Valve itself looks great. Zero evidence of thrombosis vegetation etc. There has never been any evidence of this in any of my multiple tests
*comprehensive CT scan revealed what the radiologist termed a limited Intimal tear in the aorta. Followed this up with another more directed TEE
*TEE clearly demonstrated the Intimal tear which can technically be termed an aortic dissection. Doc says likely happened during surgery in 2015. How ******* annoying is that? It is a very small tear but goes through the intima and somewhat into the media. Evidence that blood is collecting there and this seems to be what folks think has caused the strokes but again there was no 100% consensus. Doc said there was a patient who presented similarly, had root repair and did not have another stroke. This was not exactly a smoking gun, some folks have these tears and they don’t cause strokes. But in the absence of anything else…
*also found evidence of a small PFO (hole in septum that 30% of folks have) with the multiple echocardiograms they did and ultimately confirmed via TEE. Patching the PFO is a no brainer but seems unlikely to have caused the 3 strokes — my understanding is PFO doesn’t cause clots but just lets them pass over to go through the aorta. So wouldn’t explain why I had a stroke after being very anticoagulated. Also youd think I’d have had clot issues elsewhere which to my knowledge I’ve never had.
*also chatted with my estranged brother who - without valve disease - I learned had two different clot issues in his early 30s, one in lungs one in liver, a few years apart. After first clot was on Coumadin for 6 months was permitted to go off then had another one. No known cause, had hematology workups. Now on eliquis for a few years without issue. You’d think someone in my family would’ve mentioned this but better learning this late and having an additional data point
this is something of a confounding data point for me because *a third (maybe fourth) repeat massive panel of blood work for anti clotting and everything else. My **** all looks great or as expected, nothing out of range.
Next steps:
*patch PFO (not a likely cause but this is a no brainer) think they’d do this during ohs if I get the valve replaced
*add plavix to my AC regimen
*ultrasound to confirm I don’t have evidence of clots elsewhere
*decide wtf to do next. Another on-X? Tissue valve? Ross? I am just not having a great time with this artificial valve, although I’ve still been waffling on whether to go tissue or mechanical - if the tear is what’s causing the issue then the valve is fine (as it has always appeared to be on the vast array of imaging across multiple media). But without consensus, and knowing my brother also has had random clot issues… imagine getting another on-X and having this issue recur again. Woof
To that end, cardio basically asked whether I’m more worried about stroke or reoperation. When I first answered this question at 25, I was more worried about reoperation. Three strokes later, very different calculus. Reoperation is not what gives me anxiety. Maybe it should. But losing brain function / part of my identity is a lot scarier to me at this point.
If I’m going with a tissue valve I’m thinking Ross because of the potential extra longevity, my relative youth, etc. Trying to book a consult at Sinai NY to discuss w the surgeon.
Anyway, that’s the lengthy update. Probably missed some stuff but think those are the high points. Thanks for listening
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