HeartDawg
Well-known member
So, three years out, I am told that I have a significant (I think the words used were "very large") paraprosthetic leak around my St. Jude's Regent valve.
Now for some quick background to lead up to my questions/concerns:
I was diagnosed in 1994 with a bicuspid aortic valve.
I had annual echocardiograms from 1994 until 2006. Because I had a number of moves during that time, I worked with a number of cardiologists, and automatically had a follow up discussion after the echo.
In the summer of 2006 (after another move) and feeling as if I was getting symptomatic, I had another echocardiogram with HOSPITAL A. However, it wasn't until three phone calls later that I finally got a return call telling me that the cardiologist wanted to see me in six months.
Because I was concerned about how this went, I did my next echo in January 2007 with another hospital ... HOSPITAL B. They were clearly shocked by what they were seeing, and were also shocked by the echo results from the previous summer ... visibly upset that HOSPITAL A had not replaced the valve back then. We underwent the valve replacement surgery three weeks later.
A couple months after surgery, I had a follow up echocardiogram with HOSPITAL B. The cardiologist called me a few days later and the first words out of his mouth were, "Are you feeling alright?" I was. He said he was very worried because he saw lots of leakage, but would get back to me.
The cardiologist called me a few days later to say that he spoke with the surgeon (a fairly highly regarded surgeon) who told him to, "Mellow out." That this valve was designed to have leakage. My recollection was that the leakage the cardiologist saw was designed into the valve to reduce clotting. The cardiologist told me that he was unaware of this and that it was the first he had heard of the valve ... which led me to lose confidence in that cardiologist.
I figured all was ok and went on my merry way. I have had regular appointments with my GP back at HOSPITAL A who told me he didn't see any reason for me to have regular (annual) echos. OK ... fine.
Now, 3.5 years later, I was experiencing some chest pain (which I still think is unrelated), that led to an echocardiogram at HOSPITAL A. The GP seemed to have changed his mind ... and said, "Well, you really should be getting annual echos anyway."
And, the results, the current cardiologist say show significant paraprosthetic leakage. A lot. Not sure what that means, but he stressed that it was a lot ... and he had reviewed thousands of echocardiograms of patients with mechanical valves. Additionally, he says he is seeing the SAME leakage that was evident in the echocardiogram seen in 2007 by HOSPITAL B, and that it is NOT supposed to be there. I relayed what I had been told in 2007, and this cardiologist scoffed.
What to do about the leak? Nothing says the current cardiologist. The options are replace the valve or leave it as is and do an echo every six months for awhile. My heart, he says, is fairly large, but no larger than it was immediately after surgery.
So, here are the questions and concerns.
Geez, at this point I don't know who to trust. Unlike others on this board, I have no expertise in my condition. I've trusted the medical experts. But, now, after these interesting turns, I'm not sure what to do.
I asked the current cardiologist if I should get another opinion. He says there is no need.
Should I get another opinion? I have an option of going to HOSPITAL M (for Mayo) and getting a good review of everything there.
Thoughts? Insights? Advise? I appreciate any input.
Now for some quick background to lead up to my questions/concerns:
I was diagnosed in 1994 with a bicuspid aortic valve.
I had annual echocardiograms from 1994 until 2006. Because I had a number of moves during that time, I worked with a number of cardiologists, and automatically had a follow up discussion after the echo.
In the summer of 2006 (after another move) and feeling as if I was getting symptomatic, I had another echocardiogram with HOSPITAL A. However, it wasn't until three phone calls later that I finally got a return call telling me that the cardiologist wanted to see me in six months.
Because I was concerned about how this went, I did my next echo in January 2007 with another hospital ... HOSPITAL B. They were clearly shocked by what they were seeing, and were also shocked by the echo results from the previous summer ... visibly upset that HOSPITAL A had not replaced the valve back then. We underwent the valve replacement surgery three weeks later.
A couple months after surgery, I had a follow up echocardiogram with HOSPITAL B. The cardiologist called me a few days later and the first words out of his mouth were, "Are you feeling alright?" I was. He said he was very worried because he saw lots of leakage, but would get back to me.
The cardiologist called me a few days later to say that he spoke with the surgeon (a fairly highly regarded surgeon) who told him to, "Mellow out." That this valve was designed to have leakage. My recollection was that the leakage the cardiologist saw was designed into the valve to reduce clotting. The cardiologist told me that he was unaware of this and that it was the first he had heard of the valve ... which led me to lose confidence in that cardiologist.
I figured all was ok and went on my merry way. I have had regular appointments with my GP back at HOSPITAL A who told me he didn't see any reason for me to have regular (annual) echos. OK ... fine.
Now, 3.5 years later, I was experiencing some chest pain (which I still think is unrelated), that led to an echocardiogram at HOSPITAL A. The GP seemed to have changed his mind ... and said, "Well, you really should be getting annual echos anyway."
And, the results, the current cardiologist say show significant paraprosthetic leakage. A lot. Not sure what that means, but he stressed that it was a lot ... and he had reviewed thousands of echocardiograms of patients with mechanical valves. Additionally, he says he is seeing the SAME leakage that was evident in the echocardiogram seen in 2007 by HOSPITAL B, and that it is NOT supposed to be there. I relayed what I had been told in 2007, and this cardiologist scoffed.
What to do about the leak? Nothing says the current cardiologist. The options are replace the valve or leave it as is and do an echo every six months for awhile. My heart, he says, is fairly large, but no larger than it was immediately after surgery.
So, here are the questions and concerns.
Geez, at this point I don't know who to trust. Unlike others on this board, I have no expertise in my condition. I've trusted the medical experts. But, now, after these interesting turns, I'm not sure what to do.
I asked the current cardiologist if I should get another opinion. He says there is no need.
Should I get another opinion? I have an option of going to HOSPITAL M (for Mayo) and getting a good review of everything there.
Thoughts? Insights? Advise? I appreciate any input.
