questions to ask...

[Mark]

I have a meeting with my cardiologist next month, and I know I am close to needing surgery on my mitral valve. What are some important questions I should have the cardiologist answer for me? Are there questions some of you wished you had asked before your surgery? Thanks.

 

[gary]

Number one question if MVR is assured

Number one question if MVR is assured

is who he/she recommends as a surgeon and if they know how many Mitral valve surgeries that heart surgeon does per year?

If not assured of surgery, which tests were already performed? Catheter? TEE? Resting and stress echo? Nuclear? MRI? ----that leads the Cardiologist to the conclusion a replacement is imminent?

If intrested in post-op expectations, and you now have symptoms, which of those if any might be alleviated?

What are the possibilities for onset of A-Fib post-op and how would it be controlled?


Any possibility for repair may be a question for the Surgeon instead.

I found I had more questions post-op than before, once a definite replacement diganosis was given. All the other questions pre-op were for the Surgeons to determine which valve and team I wanted to perform it.

Made my cardiologist was mad as hell that I did not take his suggestion to have it done at his preferred institution, with his preferred surgeon. (Who retired from practice the following year, which I suspect was due to boredom or a loss of Edge in his skills, taking too long).


AVR; 4/00; C-E Bovine Pricardial, 25 mm; CCF; Cosgrove

 

[ALCapshaw]

Gary,

Maybe your cardio was mad as H*** because he didn't get a referal fee since you opted to use another surgeon...?

or maybe I'm totally off base with this guess...

 

[gary]

Al: I think it was much more serious than being

Al: I think it was much more serious than being

about money, and fees. He's fairly well off by inheritance and a thriving practice.

My suspicion, confirmed by his aide, was that he thinks he's the pre-eminent Cardiologist in the city, maybe the country and doesn't need no stinkin second opinions... his C-V department at HIS hospital is every bit as great as CCF. Forget the fact that his preferred surgeon does maybe 50 AV replacement surgeries in his lifetime, and is really a Heart Transplant guy who thinks of Valve surgery as clipping fingernails, in spite of the fact he would not tell me how long his average AVR takes on the pump and X-clamp.

Ego, in a word.

In all fairness, he is an outstanding Analyst, diagnostician and writes the most thorough reports I've yet seen. His personal demeanor in direct contrast to that, once you question him.

 

[Jennie]

Hi Mark,

My valve was aortic, so maybe some mitral valve people will have more insights to offer you....

If you are truly close to surgery time, I would want confirmation from the cardio about the timing - can it wait, and why or why not. I would make sure that you've had tests at least within the last couple months - definitely an echo. See if you might need a TEE (transesophegeal echo) to get a real good picture of your valve. Ask what your numbers are - your ejection fraction (a measure of the output of blood from your heart) (diminished?), size of your ventricles (enlarged?). Talk to him about your symptoms, if any. From my experience, it seemed that these three items (EF, ventricle size, and symptoms) were main factors in determining whether or not surgery was needed. Ask if you can take any drugs to help prolong the need for surgery, or to help ease the strain on your heart, if it's looking that you could wait a while. I would also ask him what valve he would recommend - mechanical, tissue (human, bovine, porcine) - and WHY. Talk about risks and benefits of each valve - their longevity, drugs that you would need to be on, risks of repeat surgeries - as related to YOU in your current age, lifestyle (sports etc), current health status, etc.

If it's looking like the time is near, ask what surgeon would he recommend, does he do a lot of mitral valves (as opposed to aortics), does the surgeon do REPAIRS. From what I hear from the mitral folks, they have a better chance for repair than the aortics. And, if you can find a surgeon who does repairs (not all of them do), a repair (from what I am told) would be preferable over a replacement. I would insist that your cardio set you up for a consult with the surgeon, and discuss all this with him.

Ask the surgeon:
* what your possibilities might be for a repair
* how long such a repair might be expected to last
* what valve he would recommend if a replacement was necessary - mechanical, homograft, porcine, bovine
* time on the bypass pump
* options: full sternectomy, or minimally invasive procedure?
* how many does he do a year of each
* is the time is NOW or what?

If you're not convinced or satisfied with the answers you get (or don't get), move on and get a second opinion. You only get one go-around for this. You are the one who has to get up on the table, you are the one who has to live with your choices. If they recommend a particular valve, contact the valve manufacturer and get some literature, and read up. Do the same with Coumadin. Get on the board here and read up and ask questions. Unlike Gary, I found I had most of my questions before the surgery. That was almost the hardest part - doing the research, following my leads, pushing docs to get answers, and listening to myself to learn what risks I was willing to accept and what aspects of my life I was not willing to give up. Once I was settled in my mind and sure of my plan, the rest was go with the flow (relatively speaking!!!!!).

Best wishes, I hope this helps. Let us know how your visit goes.

Jennie

 

[gary]

Jennie: To clear any misunderstanding about

Jennie: To clear any misunderstanding about

my questions, thought I'd amplify a bit.

My 2 cardiologists in both cases did not recommend a valve type but deferred those questions to the surgeons.

My 9 months of research was done PRIOR to surgery and the file on that is about 2 inches thick. But nearly ALL of it was 'stuff' that cardiologists could only guess at. And a lot of CCF post-op case information directly from patients and their experiences. Trying to get an EF from my cardiologist (pre-op( post-op was a wasted effort since everyone's 'squeeze' on those first few heartbeats coming off X-clamp varies dramatically. Ditto with other important post-op eventualities.

This board didn't exist at the time of my surgery 2.5 years ago. If it did I would have known more than my cardiologist. I still think I do since he did not know that the C-E bovine pericardial valve was considered 'Stented', even though it's as plain as day in any chest x-ray with it's lazy, wavy silver line and he has hundreds of patients with them.

Maybe it was his style in communicating but the CCF cardiologist was only a bit more helpful in my questions. The key one: Can I postpone for a few months till I sorted out other people's experiences and the risks? was that I did have a window of 6-9 months to gather the data, nearly all of which was far more important to me to know what I might experience going thru it and on the other side, the range of possibilities.

 

[Jennie]

Hi Gary,

I thought that MUST have been a misunderstanding! From what I know of you, I couldn't imagine that you would have blindly accepted whatever valve that some doc was pushing you into, without some form of research! Sorry to have assumed otherwise - and thanks for clarifying this and setting me straight! I do hope that you've ended up with a valve you are happy with.

I guess I get a bit sticky on this sort of thing, as I had a rough time finding my way through the maze of opinions from miscellaneous cardiologists, and who knows what shape I'd be in if I'd not questioned and educated myself along the way. The timing and the valve choice were major controversies in my case. One cardio (after consulting with a surgeon - over the water cooler, probably!) wanted me to have a bovine (which I wasn't necessarily opposed to), but the only reasoning he would give me is that there was another woman (ten years older) who was "just like me", and that's what she was getting, so that's what I should get....???!!! I really didn't feel like I'd hit on someone who REALLY knew what he was talking about and had something definite to tell me until I met with my surgeon.

I can't imagine what I would have done without this board prior to my surgery. I didn't even know tissue valves were an option, I'd been hearing "mechanical" all my life. It was so nice to be able to read up on the different issues and get some background, so I could arm myself with questions regarding my situation when I went to see a doc. I did a little visit to CCF for a second opinion, and the cardio didn't tell me anything I didn't already know. It was just a warm fuzzy for me at that point....

And reading up on people's post-surgery issues here and elsewhere on the net gave me literally ALL of my knowledge regarding what to expect for the actual surgery experience and recovery (other than the CC heart book). None of my docs discussed ANY of this with me beforehand. And my time with the docs was too precious, in making sure I wasn't signing up for something I would regret....

Jennie

P.S. Mark, just a suggestion, ask for copies of your records and tests and stuff, for your own education and in case you want to get another opinion.