Frustrating Cardiologist Visit

[swim mom]

Hello,

I have been quietly listening and learning from everyone. I was diagnosed with moderate to severe mitral regurgitation several years ago. Now I need advice as I am totally confused as to what I should do next. I will also apologize in advance for a very long post.

Last spring my cardiologist thought my echo showed a decrease in heart function and increased heart size. My cardiologist did a TEE and MRI. The TEE showed from mild to very severe depending on how he looked at it. He then sent me for an MRI to confirm the TEE results before he referred me to a surgeon, especially since he feels my valve is repairable. He wanted the verification because instead of filling the atrium it leaks at an angle at a greater velocity causing the blood to leak around the wall of the atrium. Unfortunately the MRI only showed mild regurgitation but he said he was disregarding it due to the fact that it definitely didn?t show what he saw and the difficulty of measuring my regurgitation. When he called me with the MRI results he said he wasn?t sure what to do so he wanted me to come again in 3 months. Since then I have had a few additional problems with an elevated heart rate, and shortness of breath.

Monday was the 3 month follow-up. He said my echo was basically the same as last time and he didn?t feel comfortable referring anyone to a surgeon he wasn?t 100% sure was ready for surgery because ?surgeons operate on everyone?. He feels every time a person is referred to a surgeon they operate whether they need it or not.

At the end he asked ?are your symptoms so debilitating you can?t live with them or are they just really irritating but you can put up with them?. I have problems with the question. First, prior to this he told me he didn?t feel comfortable referring me to a surgeon, making me feel like he was saying I don?t want to refer you to a surgeon but maybe I will if you ask me to. I can also still run and go to the gym, but I almost always have to take a nap afterwards. If we have a busy weekend it can take me several days to catch up. He knows all of this as we discussed it. I honestly told him how I feel and I can put up with a lot but I don?t know how bad my symptoms really are, what is normal? His answer was to wait and see. So he wants me to come back in 6 months. I think he is very young and afraid to make a decision. Sorry I have rambled so much but I am SO frustrated.

 

[Lynlw]

I could see how frustrating this is. IF I were you I would get a second opinion. Lyn

 

[Phyllis]

I think it's time to see a surgeon for a second opinion or at very least another cardiologist. When Dick was told by his cardiologist that it was time for surgery, we got another opinion from another cardiologist at Brigham and on confirmation, he set us up with the surgeon, Dr. Cohn at Brigham. It sounds like you are having symptoms and you don't want your heart to become too enlarged.

 

[Karlynn]

I'd ask for a surgical referral as well. First of all, we know he's wrong about all surgeons always wanting to operate. My surgeon turned me down the first time I was referred to him.

Secondly - if you are physically active in running and working out, sometimes your symptoms can be masked by your physical fitness. If you are physically fit and are experiencing them, it MAY be that they would be much worse in someone with your level of disease.

It also might be that your body has already begun to compensate for symptoms and you don't notice as much as you would if they'd come on suddenly. Sometimes the onset of symptoms is so stealthy that people don't even know they had them until after they've had surgery and realize they feel so much better.

A second opinion is definitely in order, and, in my opinion, it might as well be from a surgeon.

Best wishes!

 

[tcopel]

You mentioned that he seemed young. Nothing like a few grey hairs and experience to help guide you. It would seem your cardiologist needs to introduce himself to surgeons that he trusts, not just for their surgical expertise but the timing and ramificataions of surgery. Ones that he would send his own family to. I hope it all works out for you.

 

[maka]

I second the opinions here and would go for a second opinion from another cardiologist before going to the surgeon but don't wait 6 months to see him/her

 

[Philip B]

Opinions

Opinions

I'll echo what others have said about seeking a second opinion. It's also very true that one's body develops a tendancy to compensate and this sometimes masks symptoms.

Prior to my visit with my cardiologist last February, I had avoided doctors in general for twenty-seven years. Despite the fact that my aortic valve was due for replacement and I had developed a large aortic aneurysm, I did not feel that I had any symptoms.

A second opinion will either confirm what your cardiologist is telling you or give you different data to consider as you make decisions which will affect your life. Timing your surgery is critical. Waiting too long can complicate your situation with permanent heart damage.

-Philip

 

[ALCapshaw2]

YEP, it's definitely time for a second opinion.

Old school cardiologists like to wait until symptoms are debilitating. Surgeons like to operate before there is permanent damage to the heart muscles and walls.

I would expect that Good Surgeons at Major Heart Hospitals would NOT rush to surgery if it was not warranted. Hopefully they have plenty of business and would not operate on someone just to 'cash in' on their insurance. I'm not familiar with surgeons in Maryland, but I expect Johns Hopkins has several.

'AL Capshaw'

 

[Kathleen]

I doubt I would have alot of confidence in a cardiologist who felt that way about surgeons. They should work in tandem and you certainly should feel they respect each other. I would shop for a new cardio that you feel more comfotable with. You will be together for a long time so get someone you trust.
Kathleen

 

[WayneGM]

......he didn?t feel comfortable referring anyone to a surgeon he wasn?t 100% sure was ready for surgery because ?surgeons operate on everyone?. He feels every time a person is referred to a surgeon they operate whether they need it or not.

In my experience, the first time my Card sent my file to the surgeon for an opinion, it was the surgeon's response to wait and do a follow-up exam in 6 months. If I was you, I'd seek a second opinion, Good luck.

 

[greg]

It took me a while to feel comfortable talking to my Dr. After I got past that I got sound and true information. Sounds like you are past the comfort level but not getting much guiidance. Like others, I suggest a second opinion.

 

[catwoman]

Monday was the 3 month follow-up. He said my echo was basically the same as last time and he didn?t feel comfortable referring anyone to a surgeon he wasn?t 100% sure was ready for surgery because ?surgeons operate on everyone?. He feels every time a person is referred to a surgeon they operate whether they need it or not.

At the end he asked ?are your symptoms so debilitating you can?t live with them or are they just really irritating but you can put up with them?. I have problems with the question. First, prior to this he told me he didn?t feel comfortable referring me to a surgeon, making me feel like he was saying I don?t want to refer you to a surgeon but maybe I will if you ask me to. I can also still run and go to the gym, but I almost always have to take a nap afterwards. If we have a busy weekend it can take me several days to catch up. He knows all of this as we discussed it. I honestly told him how I feel and I can put up with a lot but I don?t know how bad my symptoms really are, what is normal? His answer was to wait and see. So he wants me to come back in 6 months. I think he is very young and afraid to make a decision.

Swim mom:

You are already symptomatic. Now is the time to have surgery. If you wait too long, you'll be choosing which replacement valve you want the surgeon to use.
I had these "irritating" symptoms for years but chalked them up to burning the candle at both ends. I'd call in sick once or twice a year because I was too tired to get out of bed & go to work. I began sweating when I was under stress. I had some a-fib when I was stressed and just thought "everyone else" had the same symptoms.
I never thought to mention my symptoms to my PCP.
By the time I did they were debilitating. My mitral valve leaflets were so noisy I could hear the defective valve without a stethescope. I had some congestive heart failure. I had shortness of breath. I was cyanotic. No one should get to that point.

Time for you to get a 2nd opinioin -- either from a surgeon or another cardiologist. (I'd also consider getting a new cardiologist.) Surgeons prefer to operate before you become symptomatic, not when it is unnecessary.

My husband had MV repair in May 2007. His situation was the result of a head-on car crash in December 2005 that damaged 2 MV chordae and one leaflet. Thanks to this website, I found a surgeon who was experienced not only with repairs but also with minimally invasive surgery. John's incision was between the ribs, and his recovery was must faster than mine was. He got into surgery much earlier than I did & had less pain.

Granted, it is difficult to think about having surgery, particularly open heart surgery, when you're only needing to take an occasional nap now. However, the sooner you get into the OR, the sooner you'll be on the road to recovery and back to your normal busy life.

 

[MikeHeim]

All of the responses above are right on. If your TEE showed a decrease in heart function and increase in size, the time to act is now. Please get a second opinion.

 

[CathyK.]

I echo what everyone has said here. My Cardiologist thought it was time but my surgeon wanted to wait as long as possible. When I went in it was my choice to go ahead and get it done, the surgeon said the things were alot worse than they thought. So get that second opinion!! Good luck!

 

[swim mom]

Thank you for all of your responses. I think I knew I needed a second opinion but needed the encouragement to make that decision. It is all confusing and frustrating. Unfortunately, he seems to be a young cardiologist who is afraid to make a decision and has preconcieved ideas about surgeons....Unless I had probelms I probably wouldn't see him again anyway as we are moving, probably to Orlando but I am not sure when my husband retires from the military early next year.

 

[Lisa in Katy]

I agree with everyone else. I'm surprised that your cardio hasn't performed a cath to measure pressure, etc., or do the new tests do that less invasively? I thought I was asymptomatic until after my surgery when I discovered how healthy people are supposed to feel!

My heart was quite enlarged for several years; that, along with the increased heart rate and very high EF, were my body's way of compensating for the severe regurg. Many cardiologists are of the school, "Wait until surgery is absolutely necessary - a life or death situation." My cardiologist used to say "sex and stairs are the real judges of your condition." The problem was that I was only 14 when I had RF, so all of my experiences with sex were AFTER my heart was damaged! Plus, we lived in a one-story house!

I really think you'd be more comfortable with a second opinion. Don't let the damage get so bad that you "need" surgery.

 

[susieq14]

Hello Swim Mom,

Wow I hear you loud and clear - it is very confusing and frustrating. I think you definitely need to get a second opinion from either another cardiologist or from a surgeon. I know it is very hard to change doctors (been there done that within the last year for both my primary doctor and GI doctor - next will be my cardio) but you have to do what is right for you - always remember that you are the only one who really cares about you 110%. You mention that you are moving - one word of advice. If you have not done so alreasy, be sure to get copies of all your test reports and the "office notes" that the cardio wrote up. Also get the actual echo report - someone here told me they put it on a CD. Also get all your MRI films. Not sure about the Tee but you should ask for that as well.

I wish you luck and strength as you deal with your next step.