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Marcia58

Well-known member
Joined
May 27, 2009
Messages
446
Location
Northern Indiana, US
Wow! I hope I'm putting this in the right place, but I had to tell somebody who'd get it. (DH is a sweetheart, but he's never had OHS.)

Anyway, I was reading the surgeon's summary of my MV repair last year (a year ago today) and read his notes on what he did to repair my atrial septal defect and my pericardial defect! What the...?! This is the first I'd heard of it! (DH, too)

Is that common, to repair something like that and never tell the patient?

If I hadn't already ordered a copy of my complete records from my hospital stay...I WOULD NOW!
 
So what's the issue here ? You went in for MVR, but unknown to you there was an ASD there which your surgeon kindly fixed, along with the pericardial problem. Thats a good thing surely, or would you prefer two heart surgeries ? I guess there are things that scans don't show, that surgeons only find once they get in there. And once they find'em they fix 'em. I'd be happy if I were you.

Ade
 
This is precisely why it's important for us to get our records. There are things in there that have NOT been disclosed to us and it's always interesting to find out exactly what was done.
 
I am happy! I'm very thankful the other was found and fixed. It just surprised me that if it was significant enough to fix and to write up in the report, it wasn't significant enough to tell the patient about. I just prefer to be more "in the loop."

Besides, my children are married and in their childbearing years. Now, if their pediatrician asks, "Is there a family history of ASD?" we know that the answer is yes.
 
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I agree. I think this was important enough to mention to you. I wanted to know everything there was to know about my own surgery, but found that some surgeons can be very closed mouth. I asked mine how bad my Mitral valve was once he got in there....meaning I wanted the diameters, and all I got out of him was....."It needed to be replaced!" Well, I knew that. I don't know if they don't understand that some of us really do want the details, or they think we are just asking to make sure the surgery was indeed needed...which is what I felt like my surgeon interpeted from my questions. I let it go because I wasn't going to get better answers.

Mileena
 
Marcia58 said:
I am happy! I'm very thankful the other was found and fixed. It just surprised me that if it was significant enough to fix and to write up in the report, it wasn't significant enough to tell the patient about. I just prefer to be more "in the loop."

Besides, my children are married and in their childbearing years. Now, if their pediatrician asks, "Is there a family history of ASD?" we know that the answer is yes.
Click to expand...

Did it say what kind of ASD it was? IF not you might want to find out.
 
There is also the case where the drugs make us not remember what we are told. I was TOLD about my subaortic stenosis and damaged aortic valve, but it didn't get mentioned again until 6 months after my mitral valve surgery, when I read my records. But they couldn't do the aortic valve at the same time, it wasn't bad enough then, and I was too ill for more surgery.
 
Marcia58 said:
Wow! I hope I'm putting this in the right place, but I had to tell somebody who'd get it. (DH is a sweetheart, but he's never had OHS.)

Anyway, I was reading the surgeon's summary of my MV repair last year (a year ago today) and read his notes on what he did to repair my atrial septal defect and my pericardial defect! What the...?! This is the first I'd heard of it! (DH, too)

Is that common, to repair something like that and never tell the patient?

If I hadn't already ordered a copy of my complete records from my hospital stay...I WOULD NOW!
Click to expand...

Marcia, i would think that surgeons must be like airline pilots. if something goes wrong they don't tell the people involved unless they absolutely have to in order to not unduely worry the patient / passenger. this is just a guess though.
 
Lyn - What are the different kinds? I'll have to go back and re-read.

Laurie - "Med fog" is a definite possibility for me. But the surgeon took my DH, my son, and my sister back to his office, told them about the surgery, showed them a video clip, answered their questions. It would seem really for all of them to forget, too!

Ryan - You could be right. Unfortunately, that's just the opposite of how my mind works. My "writer's brain" left to its own devices can come up with something at least as bad as what happened, if not worse!

Marcia
 
There are several types, depending on the location, also I believe a PFO is also considerred an ASD, but it isn't really a hole in the atrial septums that never should be there, but something that is an opening in a fetus that should close when you are born but sometimes it doesn't close all the way and a stitch or 2 will close it, unlike some ASDs that need patches. I can find a good link describing them if you want
 
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Yeah, I knew it was supposed to close at birth or soon after. I think mine was small, because the report talked about closing it with suture. Maybe that's why he didn't mention it.
 
atrial spetum

atrial spetum

.
it seems it is normal proceedure to close the atrial spetum (chamber??) when the mitral valve is replaced as the "as" is a place where blood can hang around and potenially clot.

the surgeon did not mention this before or after surgery, but i read it on his report to our g.p. there was no mention mine was defective.
 
Pfo

Pfo

I had a PFO (patent foramen ovale) which was found when my surgeon went in to repair my valve and do a left maze. A PFO (if I am not mistaken) has a thin membrane rather than being a completely open hole. In any case, my surgeon told me about it when I woke up and I was still on the respirator. I remember thinking "OMG, I had that too"!!
 
Marcia:

I had an ASD repaired during my surgery. While I was still on the vent, I overheard one of my nurses say "ASD." I may have been groggy, but I knew what an ASD was. That let the cat out of the bag. I don't remember hearing ASD mentioned during my heart cath the day before my surgery.

http://www.ispub.com/journal/the_in...l_valve_prolapse_in_atrial_septal_defect.html

Lynlw said:
It sounds like a PFO then. Here is a link (its a pdf) describing the different ASDs (actually despribs most CHDs but the ASDs start at page 23 http://testing.childrensheartfounda...s/filemanager/files/its_my_heart/Chapter2.pdf
Click to expand...

Lyn:
I tried to download the link, but got an error.

Is this pretty much what you were referring to?

http://www.mayoclinic.org/atrial-septal-defect/types.html
 
catwoman said:
Marcia:

I had an ASD repaired during my surgery. While I was still on the vent, I overheard one of my nurses say "ASD." I may have been groggy, but I knew what an ASD was. That let the cat out of the bag. I don't remember hearing ASD mentioned during my heart cath the day before my surgery.

http://www.ispub.com/journal/the_in...l_valve_prolapse_in_atrial_septal_defect.html



Lyn:
I tried to download the link, but got an error.

Is this pretty much what you were referring to?

http://www.mayoclinic.org/atrial-septal-defect/types.html
Click to expand...

Kind of but this book "its my heart" has a little more and describes the PFO. It is a great book that I think does the best at explaining all the CHDs, testing, surgeries and has good diagrams of the CHDs and surgeries ( they used to have copies for heart families, but have been out of stock for a while, but you can read it online)
I don't know why the link won't work, Hopefully this will take you to the "Its my Heart" page. At the bottom you can click on english or spanish http://testing.childrensheartfoundation.org/publications/its-my-heart which will take you to the table of contents Then Chapter 2 is CHD (its a pdf) they are listed alphabetically and PFO is listed under ASD at the beginning.
I'll try this which hopefully takes you to the table of contents http://testing.childrensheartfoundation.org/publications/its-my-heart/english

OR if the other links don't work, you go to the main page of the Org www.childrensheartfoundation.org click on "publications " and the bottom of that page has a picture of a heart w/ kids link to the Table of contents
 
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