starkone's question for the board.

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.

Ross

Well-known member
Joined
Dec 15, 2001
Messages
25,981
Location
On The Hot Seat
quote:
--------------------------------------------------------------------------------

starkone wrote on 05-29-2002 02:57 PM:
This is my first post so bare with me.
I have just last week been diagnosed with AS.
The echo showed sever the cath now says not quite so bad.
I am going for a stress test tomorrow.
My cardiologist says we can wait my primary care doc says
we need another opinion. Did most you you seek second opinions before any surgery?
I have tons of questions but this is a start.
Thanks,
Karen

--------------------------------------------------------------------------------
 
Re: Hello
Hi Karen and welcome to the board and family.

By AS, do you mean Aortic Stenosis? I'm assuming you are.
Anyway, most people do not need a second opinion, as the testing procedures are pretty darn accurate, however, I wouldn't say that a second opinion is unnecessary. In my case, the catheterization showed severe, the echo showed severe, so they did a T.E.E. and it showed moderate to severe. My surgery is coming up on June 10th. I've been playing with this since the severity was discoverd in November, last year.

If your doctor wants a second opinion, then I'd follow his suggestion. It's your life at stake, so any additional needed opinions should be welcomed with open arms.

I hope that helps answer your question. Feel free to fire away with any others. If I can't answer it, someone will.
Again, Welcome to VR.
 
Hi Karen,

And welcome to our growing family of valvies. A few had similar surgeries but we welcome all.
Karen, I never sought a second opinion, because the cardiologist did not beat around the bush when he told me that I needed surgery sooner, not later.
I believed him!
I don't think they say things like that for fun to a patient when in fact it is not the truth. I saw the seriousness on his face, so I did not take the time to seek another opinion and believed what he told me. Ooh yes, I wanted to wait and put it all on hold, but they told me not to do that.
The cath was done the following Wednesday and the surgeon said exactly the same thing after it was over. I needed the surgery yesterday and had not much time to spare, so we set a date the following week when I saw him at his office.
I couldn't persuade them to give me a stress test the day that I went in to see the cardiologist. The valve was in bad shape and it would be dangerous.
I had one afterwards and did fine.

Hope this already helps.

Christina
Congenital AS
AVR's 8/7/00 & 8/18/00
St.Jude's Mechanical
 
Thanks to all for the replies.
I am still in the beginning stages of all this and am not sure what will transpire next. All I know is they think I am ok for the stress test...lets hope so!
I am glad I found this site and know it will be useful in the near future.
Thanks again,
Karen
 
First of all, I had bypass, not valve replacement. But I had a cardio and he brought in the surgeon and I didn't seek another opinion. They said 'you need surgery; you have 4 blocks' and not knowing a thing about heart matters, I was so stunned I just said ok. Didn't have a clue til I found this and one other site. Ignorance was bliss in my case, I guess. Glad I had it done or wouldnt be here today. God bless
 
Hi Karen

I really believe more information can never hurt. As I went through the different tests before my surgery, I met with 2 different cardiologists. I viewed these as sort of "built-in" second opinions. In the end, my surgeon thought I should have the surgery within a month, where my cardiologist originally said within a year. Since I had picked the surgeon beforehand, I went with his reccommendation.

Welcome to the site and a wonderful group of people who've gone through or will go through what you're experiencing now.
 
Hello Karen,

I had a similar situation when first diagnosed with Aortic Stenosis, i.e. there was some disparity between the basic Echocardiogram and my latest heart catheritazation. An internist friend recommend some additional tests.

Since my chosen surgeon and primary cardiologist were on vacation (1 week before my scheduled surgery), I made an appointment with another cardiologist in the (very large) group who I liked and had done my first angioplasty. He agreed that more definitive tests were needed to sort out the disparities and performed a TEE (TransEsophagael Echogram) which provided a clearer picture of three different contributing factors. From this information, he was able to readjust my medications and I was able to go another 15 months before surgery was ultimately required. At this time, the results from yet another catheterization and regular echogram were nearly identical.

If you have not had a TEE, perhaps that would be a good test to supplement your other data. Since it is not an exercise based test, the risks should be low.

'AL'
 
For Karen:

I am definitely a supporter of second opinions. When my husband got seriously sick last year in April, when he was finally diagnosed as being in a-fib and congestive heart failure, the first cardio we went to, prior to an echo being done, said he wasn't ready for valve surgery. At first we belived him, but just a couple of days went by, and we realized we needed another opinion. So, off to the second cardio. The echo was done, and it showed severely leaking mitral and aortic valves, and surgery was a must. When he finally had the surgery, out of town, there had to be a cardio there that could treat him, so we got the third cardio (by the way, we never went back to the first one). Because it went so long, he is still in a-fib, has a LVEF of 40%, and has recently developed a severely leaking tricuspid valve. He also has some electical abnormailities. He will be getting a pacemaker implanted sometime this summer.
So, second opinions? Oh, yes. I look at it like going to someone who got B's or C's in class, or going to someone who got A's. Frankly, I'd like the A student, when you are talking about heart disease.
That's my two cents! Best of luck!
Marybeth
 
Second Opinions?

Second Opinions?

Karen,
In my opinion, increasing your knowledge of the problem and its solutions is perhaps more important than second opinions. Search this board's archives and other internet sites for all the info you can get. Then you will be able to judge for yourself the many opinions given to you about your condition. I think second opinions are important, but you still need to be informed enough to decide which opinion is the closest to correct or if neither of them are close. From experience, I think proactive patients are in the best positions to demand and get excellent care. Good luck and come back to us when you need help or even encouragement. God bless.
 
2nd opinions:

2nd opinions:

Absolutely, though it really angered my world-renowned cardiologist here in Pgh. when I had a 2nd at Cleveland Clinic.

Though the diagnosis was confirmed there, she bought me another 9 months to do my homework with no damage done.

That was two years and 8 months ago and the information available on the 'net since then is light years ahead, the individual stories pre and post op, grown exponentially.

Catheter is about as good a view as they will get. I would stake any surgery on the outcome of that exam alone. None of the other tests (echo, stress echo, Ekg, holter) confirmed the damage to my valve like the 'wedge pressure' test on the catheter. Had that not been done, the TEE would be a good substitute.

I don't think you need to go any further for testing. If the Catheter test says you have lots of time, or indicates urgency confirmed by two cardiologists, I would accept it.

My cath was read by both Cardiologists and Surgeons at both hospitals and the only difference was timing, the first one wanting to get it done immediately and the other in Cleveland not nearly as alarmed, within 8 months.


AVR 4/11/00
CCF C-E Bovine Pericardial Valve
Cosgrove
 
Thank you Gary,
That was a great reply.
How did you settle on a bovine valve?
I think the cardiologist says I can wait awhile. The results are still coming in and the second opinion has not been obtained. That gives me lots of time for more questions and answers. My feeling of panic is lessening!
Thanks,
Karen
 
Karen-
Getting a second opion is always a help.
I was diagnosed with AS/AI at age 3 or 4 ( I can't really remember). Anyway, I always knew I'd need surgery, but I got a second opinion anyway.

Good luck
Mara
 
Hi Karen-

Just wanted to say Hi and wecome to this wonderful and very helpful site. Everyone here "gets it" as far as heart surgeries, valves and others. You won't find this kind of understanding in the people you meet every day. You really, really have to live through the exprience or have someone close to you go through it.

In my case, my husband is the patient, and he's had 3 valve surgeries and lots and lots of other very serious things.

Researching your problem is one of the very most helpful things you can do. The more educated you are about what is happening inside of your body and what can be done to help you, the more comfortable you will feel.

It's always good to get other opinions, providing that the one giving the second opinion is as good or better than the original one. So you will have to do some checking around about who you wish to deal with. Not everything is equal. Be a careful and judicious consumer, and be your own best friend.

Hope to see you often with lots and lots of questions and as you go along, maybe you can educate us on a few things.
 
hi karen!
welcome to this site; it's a great place, as you've probably already noticed.
everyone has said it all, and i have very little to add. you have nothing to lose by getting a second opinion to confirm the first. i think it 's a good idea too. it will also give you a stronger sense of control over this situation of which you have very little control.
please let us know how things go.
be well, sylvia
 
To Starkone: Choice of Bovine Pericardial

To Starkone: Choice of Bovine Pericardial

valve was relatively easy after I had pretty much filled every brain cell with all the information I could gather from all over the world and I mean All over the world, contacting researchers and teams in Glasgow, China and Australia over 8 months time. Things then weren?t as prolific as they are now thanks to the ?net and all the life experiences so well documented in this great forum . Just three years ago about the only board was CCF?s Heart Forum, a great resource at the time and still.

The valve I really wanted more than any other which is used routinely in Asian countries was the "Homovital" Aortic valve. This is a 'live' Aortic valve from a very recently deceased donor harvested and implanted within 72 hours, tissue matched, size matched and treated by a variety techniques to insure it is not rejected. (has to do with esoteric stuff like 'Leukogens'). It has a large 'installed base' in homogenous cultures like the Chinese, and Japanese where their gene pool had not been 'diversified'. In my naive days I actually considered going to Hong Kong or England to have it done because I could get nowhere here in this country, no one seemed to want to talk about it. The impracticality of that for Westerners was brought home by a Dr. Yakouv in England thru a paper he wrote about the Homovital Valve. Great for the Asians because of their similarity to each other in body structure and tissue DNA.

I didn't know at the outset that this valve is extremely rare in this country even if you have the time to wait for years for the right one to be available till I spoke with the team doing this surgery in England, and wrote to another in Australia. China was not very helpful due to language problems. It was a disppointment because the science on it was so thorough, very encouraging for longevity, superior hemodynamics, and a very little incidence of a second surgery with many lasting a minimum of 25 years.

The 'natural' solution was reduced then to the Ross.

After passing the candidacy for a Ross, I spoke with a dozen who had it, and three surgeons who performed it settling on Dr Elkins in Oklahoma, a pioneer in performing many successful ones.

He candidly told me his fail rate was 12-15% while the fail rate for the mechanical and Bovine or Porcine tissue valves was +- 1%.

No contest for me. I wanted the lowest fail rate on the planet. I don't consider myself real real lucky re: heart issues having had them since near birth.

I explored the Dr. Tirone David Aortic valve which was really intriguing, very high tech, but when I e-mailed my material to him in Toronto, he responded that his valve was for other applications, not purely and only Aortic Valve implantation and he considered the Mechanical, porcine or Bovine as my best choice.

All in all after gathering and sifting the information, ruling out the Ross and the David valve, I learned that Surgeons have their preferred favorites and there is little one can do about it, nor should they since expertise by a team with a certain valve and procedure is as important as the valve chosen. I looked for a surgeon who specialized the majority of the time ONLY on valves--no transplant guys, no by-pass gurus, only valves as a specialty, preferably mechanical and animal tissue. That led me to Cosgrove at CCF thru the Forum.

I never actully met him till on the table. He came in shook my hand, his chief OR nurse said he was going fix me up and he had three choices he would use based on what he saw when the aorta was finally opened and he saw the field: C-E Bovine Pericardial Valve, Mechanical Valve or Ross operation. He said there was a 5% chance he would do a Ross based on available data; I asked him if his brother was on the table what valve he would recommend. He said that two weeks earlier he had a fellow my age, same leakage, regurg, and stenosis, a Professor in Cardiology or Heart Surgery from Harvard University, on the table and presented him with the same three choices. The professor chose the Bovine Valve without hesitation, and, "does that tell you anything?" I guess if a guy who teaches this stuff selected it and is that distinguished I might want to follow his lead.

Age matters greatly in the choice of prosthesis as does Personal tolerance for an assured second surgery for another valve when the Bovine wears out, which it will slowly, over 5-18 years, depending on pretty much on many uncontrollable factors. I have read in these forums of people who, even under an early death sentence write that they will not go thru it again. I didn't consider the surgery that gruesome to rule out a number 2.

As everyone here will attest, the choice, within Surgical Team and institutional limits is yours, and a tough one it can be, unless you have absolute obsessions about some things, like I did. It can be bewildering. What I was sure of helped me greatly in narrowing it down:

1) I did not want Coumadin, not because of the inconvenience and chemicals but the constant monitoring, for another reason (see below)
2) I did not think I'd be averse to a second, possibly far superior valve being installed in my 70s, (should some other of life's caprices not get me in the meantime).
3) in relation to the noise of a mechanical valve I wanted freedom from ANY consciousness of my heart for at least part of my time on this earth, after living with the reminders of this disease for 56 years; I wanted, if possible, no reminders, day to day. (see above),
4) I wanted the LEAST amount of time on the pump,
5) minimal cutting and sewing - a mini sternotomy.

Those were my criteria. They were all met by the C-E Bovine Pericardial valve. I hope it did not bore you and that it helps a bit
and that you may NEVER need surgery.
 
Karen

Karen

Pleas go with the tsecond if you feel that it is necessary. You have to feel comfortable with the doctor as well as the diagnosis. You do what you feel is best. Do not let anyone pressure you. You will be fine and good luck on the stress test. You have come to the right place. And these people are right in saying that second opinion is good, so is third of fourth until you feel comfortable with the doctor and such. You hang in there. You will get anwers soon.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve
 
Hi Karen, and welcome!! Glad you are here!

My two cents! Second opinions I would recommend, particularly if there is something in you that questions what your current cardio is saying. Before you can bring yourself to surgery, you need to have peace in knowing that you are doing what YOU believe to be the right thing.

Not all cardios are valve experts. Most cardios know that the valve is bad and needs surgery someday, but NOT every cardio has a lot of experience with the finer details of timing the actual surgery. It's an art. They take into account your symptoms, size of heart and valve, amount of blood flow, etc. I had to go through a series of cardios (some of which were idiots, and one which told me up front that he was not a valve expert) before I found one I could trust, and it was an incredibly hard road emotionally, with all the differing opinions and such.

When I did find a good cardio, he told me that he thought I could wait, and that I should get a mechanical when the time comes. However, he was a good enough doctor to admit that my case was complex, and sent me on to Mayo Clinic. Plus, he wanted to see about the possibility of repair. On my second visit there I met with a surgeon who said NOW, and recommended a tissue valve. From his intelligent conversation on the matter, I knew it was true. I went home, thought about it, and realized that this surgeon was the only one I'd ever met who really knew what he was talking about, as he deals with this stuff every day, and in a very "hands on" way! However, I just wanted a warm fuzzy, a confirmation from someone else who also knew what he was talking about. So, I took myself to Cleveland Clinic. I got some slightly differing opinions there, but at least it confirmed that was on the right track.

Then I found that I had to answer three questions - timing, valve, surgeon - for MYSELF, no one else could answer them. I took some time to think, read, research, talk to folks here, and most importantly, listen to myself and find out what I thought was the best move for me, what I could look back on without regrets, what I would be most happy with, what risks I could live with. It took some time, it wasn't my favorite thing to do, but it amazingly came together. Making my decisions, then listening to myself to see if I was at peace - this (among other things, such as God and the support of friends) gave me the ability to climb up on that table in the OR and say YES, I know I'm doing the right thing. The rest was easy!!

By they way, I didn't mention to my cardio that I had sneaked off to Cleveland Clinic on the side!! It was just something that I knew I had to do, as I knew I would always wonder about it if I didn't. Mainly I was wondering about my chances of repair there, and it turns out they weren't offering anything different from Mayo in that respect.

So, I hope this helps!! Hang in there, you'll get through this. You're your best advocate, so don't hesitate to push for your best interests.

-Jennie
 
Dear Valvers: A fascinating discussion about the different valves. At my hospital, where I am to have a mitral valve replacement, it is the only choice, as animal valves (porcine?) deteriorate over time and thus have to be replaced. The titanium type, which I am to have is everlasting, but it causes blood-clotting' so you have to be on Warfarin or similar blood-thinning agent for the rest of your life. Apparently they give you a bracelet to warn any medical staff in an emergency. Has any one had a titanium mitral valve replaced to tell me about it? one frend said you can HEAR it! Creepy!
John Briggs
 
Back
Top