Newbie here; I need advice... would I be out of line in asking for a second opinion?

[S.Filpansick]

Hi Everybody!

I've been reading this forum for a few days now, and this is my first post.


I was born with a bicuspid aortic valve and they watched it very intently when i was a child; they told my parents that surgery was a very real possibility. Once I got a little older (around 12), they said that it seemed to be pretty stable, so I didn't need to go to the cardiologist regularly anymore, just to make sure that I went to my regular doctor once a year for a general checkup, at which point my Dr. should be able to listen to my heart and make the determination of if/when I needed to start being seeing a cardio again.

I've always been a very active person; grew up working on the family farm, manual labor jobs all through junior high and high school, skateboarding, BMX, rollerblading, etc. I've never noticed my BAV holding me back, but since I've had it since birth, I wouldn't know the difference!

I'm currently 35, and once I hit 30, my Dr suggested I start seeing the cardio again; not that she heard anything new, just as a "better safe than sorry" approach. So, for the first couple of years, I went every six months, so they could establish a baseline. The cardio said nothing was changing, so I could do every 12 months instead. I did that for a couple of years and again, nothing changed.

All of the cardio visits I'd had in my 30's, the echos were done by the same tech, and I saw the same cardio.

Then my cardiologist left the practice... I really liked him, and was bummed out, so I didn't go back for 18 months. My regular Dr got on to me about it, and scheduled me an appt with a different cardio at the same practice the old one was at. This time, the echo was done by a different tech (with zero personality... he didn't even speak unless I asked him a direct question! That makes it a little awkward!), and then of course I met with the "new" cardio.

Definitely not a fan of the new cardio either... zero personality on this guy as well.

Here's how the meeting with him went: "Hi, I'm Dr. *******. That valve needs to come out, when do you want to do it? You also need to decide if you want a bio or mechanical valve. If you go bio, you'll need at least one additional surgery in your lifetime, but if you go mechanical, you'll need to be on Coumadin the rest of your life; which way would you like to go?"

Seriously? I've never met this guy before, he's been in the room for 30 seconds, just told me I need open heart surgery (which I most definitely was NOT expecting to hear), and wants an immediate answer as to what type of valve I want and when I want to do it?

I hadn't researched this at all... to be honest, I knew very little about AVR before this meeting; I knew that they used porcine or bovine valves, but I didn't even know they had mechanical valves! I knew nothing about risks, down time, recovery, restrictions, etc... I need to know what I can do about work, I'll need to see what I can line up for help with things around the house, and with my children, and all kinds of other stuff! Do they really expect people to make a decision like that on the spot? :confused2:


For the last 20+ years, every time I've gone to the cardio, he says "No change, we'll see you next time!", and now the echo is done by a different tech, which is read by a different cardio, and I need surgery. I've always known it was a real possibility, but it wasn't like "ok, things are starting to change a little, you're going to want to start thinking about valve replacement", it was "That valve needs to come out, when do you want to do it?".

Am I wrong to think that I need a second opinion?


Thanks in advance for any insight!
Steve

 

[Duffey]

Steve,

I would want copies of all the echos done in this practice. Besides the numbers, there will be a summary of the results. I would want to know what has changed so dramatically that the new cardio thinks you need replacement.
Maybe the report will confirm what the cardiologist has said, maybe not.
Either way, I'd find a new cardiologist.

And by the way, welcome to VR!
Mary

 

[Superbob]

Steve,

That really ruffles my feathers reading how your new cardio handled delivering his verdict. I, too, was followed for many years, and when I reached my 60s a cardiologist told me in great detail and with compassion what I would need to have done. And he highly recommended a surgeon who turned out to be as great as he said.

You would not be out of line at all to seek a second opinion. Indeed, you are entitled to pick a new cardiologist if you decide to do so. Can you ask around about the availability of good ones, or check a physician referral service? A different cardio may reach the same conclusion but hopefully he or she would work with you with empathy and set up a timeline for preparations...

Welcome to the forum -- you will find a lot of support here.

 

[dick0236]

If it were me, I'd see another cardio. Unfortunately, cardios I have liked, have sometimes moved, died or "went out of network".....I even had one quit medicine and open a bookstore. I don't always agree with my cardio, but I have to like him, and respect his judgement. If I can't develop that kind of relationship, I am doing myself a disservice.

 

[AgilityDog]

Not out of line at all. I'd get the records, and see another cardio ASAP.
If you tell us what large city you are near, we can probably recommend some!

 

[escargome]

I agree with everyone. This is your body and you deserve to be treated with respect. You need to be informed of all the possibilities and all your options. I too say get another opinion. I am on my 3rd cardio in 4 years. The first two were so "God" like in their heads that they never heard a darn thing I said. So, welcome to this great forum and good luck in your search for answers which make you comfortable and secure.

 

[tprice54]

Definetly get a second opinion...and a new cardio. I went through one or two before I found one that could relate to me, and I to him. Now, this did not change my need for surgery at all, but makes life so much easier. I say this to warn you: he may be right, and surgery may be near, but you need to hear from someone you have trust in.

 

[chaconne]

You might try to get him to tell you why he thinks you need immediate surgery when you have have been so stable. It seems like each cardio has a different standard for when surgery should happen. I think you need to be a part of the decision process and found out a lot of different viewpoints. In some ways, you know your body and situation better than any doctor. Make them talk to you and give rational reasons for what they suggest.

 

[Mentu]

I agree with everyone else that it is important for you to have a good working relationship with your cardiologist but, remember, your doctor works for you. As his patient, you are also his employer and you have little to lose by asking for answers to your questions. Any competent doctor will take the time to make the information clear. Seeing another cardiologist for a second opinion is something any respectable physician would support.

In the mean time, get copies of the reports of your echo cardiograms for the past two or three years. The basic information is very comprehensible and will allow you to see what kind of change is taking place. These are your records and you have every right to them. If you are going to seek the opinion of another cardiologist, he will want to see your record history so you will need the records for that as well. Going into surgery, there should be no doubts in your mind that it is something you need. This process of discovery generates enough anxiety by itself without the added problem of dealing with a doctor who doesn't have enough time for you.

Larry

 

[ajg]

My situation is different but I did switch cardiologist and the new one saw me for 5 minutes and starting talking surgery and the other doctor I had been seeing for several months and never said anything about it. Therefore I did get a second opinion! I am so glad I did. It just made me feel better and gave me time to process everything! In the 2nd opinion I learned that surgery was an option but he agreed I could wait and watch a little longer. Now at least I know it is coming sooner than later and I have time to start planning and thinking about kind of valve..etc. Start reading and researching on your own so you will know more questions to ask on your visit. I just told my doctor that I wanted a second opinion and he did not seem offended. (might have been but this is an important decision) I got all my records and echos from them and actually went to Cleveland Clinic.

 

[Jkm7]

Not only would I get a second opinion from a different Cardiologist, I would also consult with a surgeon and get their opinion. I think it important to consult with a surgeon when it gets to the point you are at.

Can your PCP recommend another cardio or do you think because that is who sent you to this one, that might not be the best place to get another name.

The way you were treated is reprehensible and that cardio needs a few lessons in bedside manner.

Let us know how you are making out.

 

[Boston Tiger]

I agree with the others that seeing a different cardiologist would be the thing to do. You could do that by researching the hospitals in your area, since you want to have good rapport with your surgeon, if you end up getting recommended for surgery. I know everything about my visit to the dedicated heart center I chose made me feel more comfortable than the hospital my PCP and cardiologist work for.

 

[clfhangr]

Steve,
Lets cut straight to the point here. You are the one paying the bill and it is your life that you are putting in your cardio's hands. If you are not comfortable with him/her then it is time to move and find someone you can build a good positive working relationship with. Get all your records and get a second opinion from someone that you feel fully comfortable with.

Thanks,
Keith

Renal Transplant 2008
AVR 2005 and full Aortic Root and valve May 7th 2012

 

[Rick]

I would definitely look for a different cardiologist.....this one sounds better suited for auto repair than working on human beings! I hope someone treats him better in his time of need; probably when he will realize that patients are people.

I would also follow some of the other suggestions: (1) Get your echo readings: the reports and if at the same place, have someone compare the actual tapes if they were saved --- either there has been a very rapid deterioration or your prior cardio was not worrying until it was time (2) If your second opinion mentions surgery at all, I would see a surgeon as well.

Best wishes to you and I am sorry you had to hear of this news this way. God Bless.

Rick

 

[Mom2izzy]

Get a second opinion (my second opinion was from a surgeon rather than the cardio), but be prepared for it to be the same...although hopefully delivered in a more sympathetic way. I was the same as you...since birth...no change, no change...maybe you should see a surgeon, but let's do some more invasive testing first (only saw that guy once)...no change for 5 more years...at 40, I fainted which started me on my own quest for knowledge...I asked to talk to a surgeon and what I found out was that the procedure (in my case, a mitral valve repair) was becoming so much more routine that they are now doing them before things begin to change...while one is still heathy. My cardio is close to retirement too, and I believe that may be a factor. He is still not convinced that early surgery is the way to go because it isn't what was done in "his day". You may not be ready for surgery yet, but if you can find doctors on both sides of the fence, it might help to understand why each has the opinion that they do.

I also want to give a little disclaimer for doctors that are so direct. How do you want them to deliver bad news? There are some who do it better, but in my opinion, I'd rather hear it outright than have them beat around the bush about it. I found my surgeon to be way better at having this conversation. He was pretty arrogant, but I wouldn't have wanted a wishy washy guy...I liked knowing he had confidence in his abilities.

I hope you are able to get the information you need and want from your next doctors!

 

[S.Filpansick]

Thanks everyone! :thumbup:

I'll start making some phone calls to see what I can come up with. I'm in the greater Flint MI area, if anyone knows of any exceptional doctors around here; but keep in mind that I'm not afraid to drive if it comes to finding the right cardio/surgeon!

 

[epstns]

Steve,

I would second the motion to get a second opinion. I would get the second from another cardiologist. That way you might find another one you might decide to stay with. I would not stay with a cardio whose manner I found blunt and unpleasant. This is far too important to be dealing with a doctor who doesn't treat you as a real person. My first cardio was that way. I fired him immediately, no loss to me. I then started doing some research on the web to find cardio's who specialized in valve disease among patients of all ages, not just the elderly (I was only in my early 50's at the time). I found a great cardio, and stayed with him for 6 or 8 years until he moved away. He referred me to a partner who was staying in the same original practice group, and I've stayed with him for about 5 years. We have a great relationship. I never forget that he is the doctor and he never forgets that I am the patient. We discuss and debate treatment options, un=ltimately agreeing on what is best for me. That sort of rapport has infinite value for me.

As for your present cardio, go for the second opinion. It is well within normal patient protocol, and doctors are used to the practice. Any doctor who takes issue with patients seeking second opinions is not worth the title Doctor, in my opinion.

Good luck with it all. I kept my original BAV until my early 60's, and did pretty much anything I wanted until the last 6 months or so before surgery. I knew it was time to operate - but that's probably material for another thread. If you want to discuss how I knew, just ask, but I don't want to hijack this thread as it is well-focused and very worthwhile.

 

[Mom2izzy]

Thanks everyone! :thumbup:

I'll start making some phone calls to see what I can come up with. I'm in the greater Flint MI area, if anyone knows of any exceptional doctors around here; but keep in mind that I'm not afraid to drive if it comes to finding the right cardio/surgeon!

Being in Flint, I would go to U of M for sure. That's where I had my surgery with Dr. Bolling ( he's a mitral valve specialist, so they may recommend a different surgeon, but I LOVED my Surgeon!). You are also close to Cleveland Clinic, which is touted as the best, but I've heard a fair amount of negatives too.

 

[jpattillo]

Be sure you find a cardiologist who reads the echo films himself and doesn't just rely on the written report. It can make a huge difference!

 

[Rachel]

Being in Flint, I would go to U of M for sure. That's where I had my surgery with Dr. Bolling ( he's a mitral valve specialist, so they may recommend a different surgeon, but I LOVED my Surgeon!). You are also close to Cleveland Clinic, which is touted as the best, but I've heard a fair amount of negatives too.

I second what Mom2izzy says here, being that you live in Flint, you're not that far from Ann Arbor. I'm also from Michigan and although I didn't end up going to U of M, it was high on my list.

I ended up going to West Michigan Cardiology and also Spectrum Hospital in Grand Rapids for my surgery (Dr. Hooker – amazing surgeon) and had excellent experiences at both places.

Rachel