Looking for someone who has done procedure / Quadricuspid valve and PFO repair

[ichnur]

Hello,
This is likely a little silly, reading through the forum and seeing how many people have gone though crazy surgeries and multiple valve replacements, but I am looking for a little input from someone who had a PFO repair. I ended up here because i also have a valve issue that was discovered during testing. The procedure seems a lot less bad than what most everyone in this forum deals with, but i am still a little scared about effects on the heart afterwards etc. I had a mild stroke at 45 (loss of speech and fine motor skills) and recovered rather quickly. Doctors found through testing that i have a PFO that should be repaired to avoid a second stroke. It is rather small, but repair is recommended regardless. They also found a quadricuspid aorta valve, but after two TEE's i was told the valve should not be an issue right now since it is working correctly. They will just keep an eye on it. However, after the doctor i was working with left (2 hour drive away) now i am being send to a new doctor that is a 7 hour drive away, and i am just honestly a little concerned after reading about irregular heartbeats and such after procedures and while driving home etc. I feel very "healthy" at the moment and i am on blood thinners, and i am a little scared that the procedure could do more bad than good. But obviously that might just be me being a chicken and the long term benefits are more important......Anybody on here that had the cufflink PFO repair and would tell me about their experience?

 

[perrybucsdad]

@ichnur I do not have a PFO, but I have had other surgeries. I recall when I had to have my 2nd open heart and have my valve replaced, the surgeon gave me a very stern talk, as I came in with all kinds of info that I had gleaned off of the internet (this was back in 1997) and he basically told me to stop researching, as I was scaring myself to death.

It is great having all this data, and resources but sometimes, our personalities cause us to get too much data, that may not be relevant to our issues, and this can cause us to have anxiety issues. Not everyone has that, but I am one of them.

For my case, I have to be very careful when/if I need a procedure done. I have to trust the medical caregivers. I DO believe in being my own advocate, but that can also cause me issues so I have to find the right balance.

You mention irregular heartbeats, etc, and trust the medical staff. Yes, ask questions, yes, be your own advocate, but try not to worry about the things you can't control. I know that is hard as I struggle with it too.

 

[ichnur]

@ichnur I do not have a PFO, but I have had other surgeries. I recall when I had to have my 2nd open heart and have my valve replaced, the surgeon gave me a very stern talk, as I came in with all kinds of info that I had gleaned off of the internet (this was back in 1997) and he basically told me to stop researching, as I was scaring myself to death.

It is great having all this data, and resources but sometimes, our personalities cause us to get too much data, that may not be relevant to our issues, and this can cause us to have anxiety issues. Not everyone has that, but I am one of them.

For my case, I have to be very careful when/if I need a procedure done. I have to trust the medical caregivers. I DO believe in being my own advocate, but that can also cause me issues so I have to find the right balance.

You mention irregular heartbeats, etc, and trust the medical staff. Yes, ask questions, yes, be your own advocate, but try not to worry about the things you can't control. I know that is hard as I struggle with it too.

Thank you. I probably needed to hear that again. In theory i know that i have to trust the staff anyways, and if any complications are happening, they happen and i have to deal with it then. I do stress to much, in comparison. Sigh....

 

[V__]

I am looking for a little input from someone who had a PFO repair.

Cannot directly answer your question. I have a small PFO and was told that, in an unlikely case it grows, it could be plugged in through a transcatheter method. But I'd certainly be interested in hearing your experience

 

[ichnur]

Cannot directly answer your question. I have a small PFO and was told that, in an unlikely case it grows, it could be plugged in through a transcatheter method. But I'd certainly be interested in hearing your experience

Hello,

I believe that is the procedure they are proposing to fix mine. They go through a large artery into the heart (i was told most likely the thigh), through the hole and open a device that is sort of like a umbrella, then pull back and another little umbrellas covers the other side of the hole. Sort of like a cufflink. I am still missing a heart cath test and the actual procedure. The other test have been done. I just wish i could have stayed with the same doctor. My doctor changed, everything will be a 7 hour drive each way, and i am scared that side effects after the procedure (irregular heart beat etc.) will freak me out now. Maybe i am just overthinking it. I am a bit of a chicken.

 

[pellicle]

Hi

in case you haven't used the search here to search for PFO discussion (keep it simple, only search for pfo) here are some results to read (there may be other points within each discussion thread)

https://www.valvereplacement.org/threads/feeling-a-whirlwind-of-emotions—sadness-confusion-bewilderment-…-etc-after-my-recent-“bubble-echo”-test-which-uncovered-a-hole-in-my-heart.889637/#post-934364

https://www.valvereplacement.org/th...ver-7-years-of-on-x.888595/page-4#post-923170

https://www.valvereplacement.org/threads/30-ejection-fraction-limitations.889306/#post-928122

Its true that most people who join here remain active for a short time (I'd say months; until after recovery; when they get what they need) and a few stay here to help with ongoing pragmatic issues which they know to be common.

Accordingly you may not actually get a response to any question asked on a topic which is not a common discussion (on a forum named valve replacement). However IFF you reply to someone who's said PFO in their post they may see a notification of that and reply back. Its your best chance.

Make sure you actually "reply" (which includes quoting exactly their text which happens when you "reply"

and don't delete anythying, write above or below (NOT within) their text

HTH

 

[ichnur]

Hi

in case you haven't used the search here to search for PFO discussion (keep it simple, only search for pfo) here are some results to read (there may be other points within each discussion thread)

https://www.valvereplacement.org/threads/feeling-a-whirlwind-of-emotions—sadness-confusion-bewilderment-…-etc-after-my-recent-“bubble-echo”-test-which-uncovered-a-hole-in-my-heart.889637/#post-934364

https://www.valvereplacement.org/th...ver-7-years-of-on-x.888595/page-4#post-923170

https://www.valvereplacement.org/threads/30-ejection-fraction-limitations.889306/#post-928122

Its true that most people who join here remain active for a short time (I'd say months; until after recovery; when they get what they need) and a few stay here to help with ongoing pragmatic issues which they know to be common.

Accordingly you may not actually get a response to any question asked on a topic which is not a common discussion (on a forum named valve replacement). However IFF you reply to someone who's said PFO in their post they may see a notification of that and reply back. Its your best chance.

Make sure you actually "reply" (which includes quoting exactly their text which happens when you "reply"

HTH

Thank you! This is helpful and i will definitely check out the links.

 

[pellicle]

Thank you! This is helpful and i will definitely check out the links.

welcome, I edited a bit which you may not have seen, so refresh the page.

Best Wishes