2nd Cardio Opinion More Confusing Than First

[Ann L]

Hi All,
I hope someone can shed light on why the difference in diagnosis' and test results. Like Harry said on his thread, "Let the games begin." That's kindda how I feel right now!

I first wrote a couple of weeks ago about my 1st cardiologist's diagnosis in 1999 of moderate AVR, moderate MVR & mild TVR. But in 2004 & 2005, the echos showed improvements to mod. AVR, mild MVR, trace TVR yet symptoms recently got worse. He also said I needed yearly checkups and would eventually have the aortic valve replaced although it wasn't progressing as fast as most others. I took the advice and saw a new cardiologist who was highly recommended. This week I had a nuclear stress test, EKG and echo. My heart rate got to 127 before they stopped me on the stress test (tech wanted it to 145) due to SOB and chest tightness.

The next day I saw the cardiologist for a review of the tests. He looked me straight in the eyes and said, "There's nothing wrong with your heart." Silence. My husband's jaw about hit the ground. I grinned thinking he was kidding. Silence. I asked about the symptoms and his response was, "I don't know but it's not your heart, except maybe for the mild to moderate AVR."

AVR is nothing? He also can't explain the 15 lb. edema gains, the fatigue, SOB on slight exertion, lightheadedness, or thumping heart beats when at rest. He went on to say that there is nothing wrong with my arteries or electrical system, that my mitral valve is just fine and the triscupid is only trivially regurg.. Furthermore, I don't need to come back for 3-5 years and will probably never need surgery.

Before leaving his office, I asked for copies of everything. The M.D. who read the nuclear test said that because I didn't reach 145 HR, the results were "non-conclusive". Am I to assume that the doctor still felt the results were enough to give me this wonderful diagnosis?

I don't know whether to feel angry that I was possibly misdiagnosed back in 1999, jump up & down for joy, or write it all off to asthma and possibly stress (which I feel is average)? I do know that my husband and I are quite frustrated as he sees evidence of my symptoms.

I may have to learn to live with it. I don't know how other's feel about this, but the recent increase in symptoms started the day after having a Reiki attunement. I could look at it this way... by the next time I go back to a cardiologist, heck, my aortic valve regurgitation may be gone too!

Ewww, thanks for letting me vent. Please feel free to tell me how you would interpret this situation if it were you.

 

[Nancy]

But, but, but, you Do have aortic regurg. right? Moderate is nothing to sneeze at, and you should be under the care of a good cardiologist with that in your diagnosis, they both agree on that diagnosis. If you are symptomatic and have edema, SOMETHING is wrong here.

I think I would be looking for a second "second" opinion. Or go back to the more conservative cardiologist and get a repeat echo. Perhaps the first one you had was faulty, they are dependent on the abilities of the tech doing them. But the first cardio. responded to the results, and was going to watch you. He was the more careful of the two, IMO.

With such divergent diagnoses, it's very hard for anyone to assertain a bottom line diagnosis.

 

[Rebecca]

I agree with Nancy and think you should go for a 3rd opinion. I have had moderate ARV for about 11 years. My 1st cardiologist told me that one day my valve would need to be replaced. When I started to have symptoms of chest pain, tightness in chest, my heart pounding and total fatigued my cardiologist had drop my insurance so I had to find a new cardiologist. I went to a cardiologist that always makes the ?Atlanta Magazine? of top doctors. After seeing him with my symptoms and he did do his own echo, he had me visit a surgeon. My last words from him was that he thought my valve was leaking more then what the echo was showing. I went to a 3rd cardiologist who is still my doctor. He told me he thought my symptoms were do to my high blood pressure. My top number was running 140 to 170. He put me on med. and I am now symptom free. I do know that I did have one echo that put me in the moderate to severe range but the last one was back at moderate. I do go to the cardiologist twice a year. Once I tried to skip my 6 month visit and I got a phone call from his office that it was time for a visit. I?m now used to after each echo is it time for surgery yet? At my last visit he told me that if things do not change that I may never need surgery. The cardiologist that I now see is not at the same hospital the other ones are at. I drive half way across town to see my cardiologist. He gave me free drugs until we found the right ones to bring down my bp. His nurse also has called when drugs have been added to check on me. The key is to find a good doctor who will listen to you.

 

[geebee]

Ann,
I am so sorry to hear of the confusion you now have. I know you were optimistic at the thought of seeing the new cardio hoping you would find some answers. Now all you have are more questions.
I wish I had some suggestions for you in the area but, as you know, I am looking myself. I have heard the name Dr. Coy but I am not sure where. I will be seeing a new PCP next month and can ask about cardios so maybe that might be an option for us.
I also think a third opinion would be optimal for you but who to see is the big unknown right now.
Let's talk soon and maybe we can gang up on someone.

 

[Nan]

Agree that you absolutely need another opinion. And you certainly need follow up more than every 3-5 years with mild to moderate AVR. As you will see on this site, for some folks when a valve starts to go, it goes really quickly! You need to be monitored.

Hopefully the cardio (#2) is right that you might not need surgery....but you need to be monitored to make sure your condition doesn't change!

Can you go back to the first cardio? Or get another recommendation from his/her office?

Take care.

 

[tobagotwo]

Did he really say "non-conclusive?" You would think someone giving out test results all the time would know the word is "inconclusive." Remember a doctor can pass a course with a C, too.

I used to live in Indian Hill, then Delhi Hills, which should be near your stomping grounds.

Having 15 lbs of edema is serious business. Fatigue, SOB on slight exertion, lightheadedness, and thumping heart beats when at rest are all signs of heart trouble. Depending on your general condition, moderate aortic regurgitation can be quite problematic. What about your left ventricle size?

One of the things that is coming to light regarding women's heart health is that women often don't have the large vessel obstructions that men get. Instead, they get obstructions to the tiny blood vessels that feed the heart. Most of the tests don't detect that well, and it's not what most doctors are looking for. It's just as dangerous, though.

You need another opinion. If it's not your heart, what's causing that edema?

Best wishes,

 

[Ann L]

Right after posting here, I got a call and had to leave immediately and just got back in. I needed to go with my brother to the hospital ER. He was admitted for suspected TIA's, partial blindness which is new, his BP was 205/95 and although he's had 2 OHS, they discovered a murmur for the 1st time tonight. This from a man who rides a bike 35+ miles on most days.

Yes, yes, yes (lol)... I do have aortic regurgitation. I honestly hadn't thought about a 3rd opinion but it does sound like a good idea. Like Gina said, we're both looking in our area. There seems to be 2 main cardio organizations in town. I was going to call my PCP on Monday and run this past him so maybe he can come up with somebody else. Gina, I'll let you know if I come up with somebody else.

Rebecca, I'm sorry you had to go through this too to find a doctor that listened...but am very happy for you that you did find one. It seems like 11 years is a long time to have moderate AVR. Isn't it? Also, may I ask what your blood pressure was before you were put on medication? That struck a chord with me. I tracked mine for this past week and it sure bounces around a lot...with the systemic number having the most fluctuation.

Tobagotwo, yep, the doctor used the word "non-conclusive". I don't understand why the cardiologist wasn't even going to tell me about this. The only way I found out was because I asked for copies of the reports. I've thought about calling and questioning the cardiodoc about this and how he could come to his conclusions with a "non-conclusive" diagnosis. BTW, Indiana Hill is pretty central for Gina and myself.

My husband agrees with you all that waiting 3-5 years for another checkup is too long, and so do I. I did remember reading here how quickly some AVR cases got severe in a short period of time.

This question keeps running over & over in my mind ....
If cardiologist's diagnosis' can vary so widely, when do you know you're getting the correct one that suggests that it's time for surgery? Or more so, that you're told you're not ready for surgery and should keep on waiting? I guess it'd be just too easy if science was more exact. I thought symptoms and test results were the main indicators.

Before reading your responses, I was beginning to think that mild to moderate AVR just maybe wasn't anything to be so concerned with in my case. I'm glad I stopped tonight to read what you have written. Oh, I added another 40mg of furosemide & potassium to my dosage and I've finally started dropping water weight (9 lbs. in 24 hours). Wow, my breathing sure is easier! It's mostly coming off my belly area. I feel so much better yet not one doctor recommended increasing it to this. (I will be careful doing this and will run it past the PCP on Monday also.) Thanks again for posting. It is so appreciated.

 

[geebee]

I used to live in Indian Hill, then Delhi Hills, which should be near your stomping grounds.

Small world (although I know your comment was meant for Ann). I work part-time at the Indian Hill Fire District station and my sister lives in Delhi. I also lived in New Jersy from 1977-1988.

Ann,
Sorry to hear of your brother's trouble. I will add him to my prayer list. Let's wish each other good luck in the cardio search. Maybe between the two of us we will find someone really great.

 

[Karen7]

I had two cardiologists tell me my symptoms weren't heart related in spite of a leaky & stenotic aortic valve. (Stress was the diagnosis.) But after I had an AVR and aneurysm repair, all the symptoms disappeared plus some that I didn't recognize until they were gone. Women's heart health is (or should be) a separate discipline. It's often experienced entirely differently. After my AVR, EVERYTHING got healthier. Metabolism, reproductive health, respiratory system, skin & hair.... I even have some acne that I never thought I'd see again! I just turned 40 and it's amazing. You have to be your own advocate because there really is an element of "infancy" to women's heart health right now. Certainly, if I was symptomatic, I would insist on 3 or 6 month regular echos.

God bless, I wish you all the best.

 

[strawberry]

Ann, your story is soooooooo familiar. Do your new echo reports use the word myxomatous? That's what your original dx is, correct? I have a myxo. mitral valve, only mild AI and TR, and I go once a year for a checkup with twice a year for echos. 4-5 years sounds ridiculous to me. Your cardio sounds like the arrogant one I had. I went cause my GI doc heard an "extla hotbeat" (English not her first language). I said a murmur? She said no and extla hotbeat. I had been feeling palps so I went. He told me I probably had pvcs, but get an echo in case. I get the echo then see him right after. He didn't look at the tape, just the techs notes. He comes in and goes your echo was fine. THEN he looks at the paper and goes well, a mild mvp. You don't even need antibiotics. Oh, you have some AI too so I guess you should. Huh? What happened to "fine"? I said could that get worse? He goes I'd be more worried about the mitral valve. Huh? I thought MVP was benign. Six months later I can't put my shoes on, my ankles are huge and I've gained 10 lbs on a 110 frame. I go to see him, he tosses my chart onto a table and goes they don't look that bad to me (I was finally on bumex and had lost 7 pounds). He goes I'm not going to repeat an echo your heart sounds exactly the same (I got one from my gp and it was the same except the tr went from trace to mild). Once the diuretics kicked in (it took a while) I realized I too had swelling in the belly as well as the ankles. When I start to retain fluid now I feel it in my belly and breathing gets hard. My new cardio also says it's not my heart but after a year of still needing the bumex she did say she guesses I need it. Isn't it peculiar that I have mild and you have moderate of the same type of valve problems and we're both retaining fluid and told it's not the valves???

I would definitely find a new cardio. He sounds like someone who thinks very narrowly and doesn't want to be bothered.

PS I grew up in Ohio but north of you in Dayton.

 

[Ann L]

I am astonished at how many of us have to deal with doctor's who aren't getting to the bottom of the symptoms.... and how we are sometimes treated! Of course, there are some fantastic cardiologist out there. It's nice to hear that after AVR, the symptoms can disappear so completely. I don't know if or when that will ever happen for me but I'm not going to let up on finding a reason for what I'm feeling. Even after loosing some of the water, the odd heart activity is there. Loosing the fluids has helped some with the fatigue too. Isn't it something how much water retention can effect one's over-all feeling? My new reports do not mention myxomatous but refer to it as "a distant diagnosis of AVR, MVR and TVR."

Strawberry, you said, "Isn't it peculiar that I have mild and you have moderate of the same type of valve problems and we're both retaining fluid and told it's not the valves???" Yessssssss. I wonder if that constitutes a new thread to find out if many others have experienced this symptom/dx.

Gina, I pass by your workplace often as my brother lives in Milford also. I'd like to stop in sometime and hopefully catch you there so I can introduce myself to you. Would that be ok with you there at work? (I'd make it quick....)

Speaking of my brother, he learned today that he had a mild stroke and has a small hemmorage. He still has some blindness but anticipate that coumadin with fix that problem. The neurologist says he got lucky that it was limited to that. Thank you very much for your prayers. I do pray for you all here very often.... for a lot of reasons.

 

[geebee]

Gina, I pass by your workplace often as my brother lives in Milford also. I'd like to stop in sometime and hopefully catch you there so I can introduce myself to you. Would that be ok with you there at work? (I'd make it quick....)

Ann,
Absolutely stop by. I just didn't know too many people outside of Indian Hill actually know where the Fire Station is. I work M,W, & F for now because I am filling in for the other office person who is out with a broken leg. Usually I work there on Tuesdays & Fridays.

 

[aussigal]

Hey there Ann ...

I was feeling just as confused as you after I went and sought a second opinion...in the end I went back to my first Cardio with all the tests and info from "MR. 2nd opinion Cardio" .

I decided I was much happier to stay under the care of my original Cardio who is going monitoring me every six-months rather than the guy who said I may never need a new valve and to come back see him again in 12 months time. Oh yeah...Mr 2nd opinion said " if I had any pains etc before then I should "present urgently" to exclude dissection" ...

Make the decision you feel you can live with (pun intended )...you really gotta go with the Cardio you feel most comfortable with.

Good luck and keep us posted...

I'm sure us "waiting-room" people get the most out of being here at Vr.com with lots of other "waiters"...

 

[Ann L]

Thanks Aussigal for echoing what I've been considering ... going back to the first cardio. Still thinking about a 3rd opinion. In the meantime, I've got an appt. tomorrow with my PCP after a discussion with the gal who did the nuclear stress test at the 2nd cardio's office. Can't remember if I mentioned this here, but along with other good info, she said I should get my liver checked asap. After some research online, I see where that can also cause ascites and edema so off I go... one more stab at eliminating any possible cause of it. Will post if the PCP gives me any info that might help. Catch you later in the waiting room!

 

[Marguerite53]

Hi Ann. I have a question for you about the Reiki treatment. These natural treatments can be very effective and can also have widespread influence. Therapeutic massage increases bloodflow, acupuncture opens up circulation. I don't know about Reiki at all but wondered if the intensifying of your symptoms might not have been a temporary result of your treatment. Someday hopefully all these medical practices will be in concert, but in the meantime we need to be aware of possible conflicts, I think.

I know it is frustrating to not get the answers you seek. Many of us are in the same boat. I always try to listen to my gut about things. If I did not feel right about what was said to me, I contest it until I do feel right. OR I look somewhere else. Do not hesitate to seek further counsel.....at some point you will find a doctor with whom you find the right chemistry. It is an important relationship that will continue to develop, so find someone you trust and who is willing to listen to you without hesitation.

I hope your brother is continuing to mend from his frightening experience.

Best wishes.

Marguerite

 

[Ann L]

Hi there, I want to address 3 separate topics here previously mentioned...

Firstly, Margarite, about Reiki...I didn't have a treatment. I had just finished my first level in training in it and had the attunement that went with that completion. It almost sounds like it did something negative to me but that's not the case. Obviously, I believe in alternative healing techniques but just as strongly believe in traditional medicine, especially when they're combined. I am applying what I know about using it on myself and have experienced some things that are amazing to me but I don't think it's appropriate to get into detail on those things just now. Please email me if you want to chat more about it, ok?

Secondly, today I heard some info from my PCP and from the cardiologist who is treating my brother. Maybe you already know this but I think it's worth repeating here. The PCP said that there's a drug showing evidence of reversing cardiomyopathy thus eliminating the need to have OHS....that the heart damage is actually healed. I apologize that I didn't get the name of the drug but I could ask when I next talk with him. Secondly, my brother was told that there's new medication to clear plaque in the arteries (not to be confused with the injection to clear a blood clot during a stroke). He wasn't sure if it was already available or soon to be. And like brother, like sister... he didn't the name of the drug either. LOL

Lastly, today's appt. with my PCP helped renew my hope that maybe I'll get to the bottom of this. Because I'll be helping my brother when he comes home from the hospital from his stroke this week, I will wait until Monday to wear a heart monitor. (Thank you all for your kind words regarding him.) My PCP wants me to wear the monitor after I showed him a 2000 report that I found in my medical file from my original cardio where he suspected supraventricular tachycardia. I had forgotten that I had an OV because of some of my current symptoms, but at that time I didn't get another stress test. So I looked up SVT on the net and there it is.... one of the causes can be valve disease and it listed every symptom I have except the ascites. Also, the PCP drew blood to check my liver.

When I told him what happened at my 2nd cardio's appt, he said, "I am absolutely not going to defend what he said to you. Also, I don't understand why your liver wasn't tested along with the other blood workup he did." The last thing he said before walking out the door was that he was listening to me and we'd find an answer to this.

 

[Karlynn]

Ann, I'm so glad to read that your PCP is in your corner on this. That is half the battle and really helps relieve some of the stress. It's a terrible feeling to have your symptoms and complaints dismissed by a medical profession. It makes you feel hopeless. It's been almost 20 years since I had a doctor make me feel that way and I STILL remember it. God bless your PCP and best wishes as the 2 of you work together to find answers.