I don't get it!

[debster913]

Hi, all--
At the urging of the surgeon's office, I went in for an angiogram today. Whereas last week my cardio saw severe mitral regurgitation on my echo, today he saw moderate regurgitation. He seems perplexed by my symptoms of tiredness and shortness of breath, because, according to my cardio, I shouldn't be having these symptoms with moderate regurg. Last week he was seriously talking valve repair and referred me to the surgeon, but today it seems that he's taking it back. He does not want me to have surgery, but he wants to do another TEE and compare it to last year's before committing to surgery and having me meet with the surgeon.

Meanwhile, I feel like a fool. I had to take a medical leave of absence from my teaching job, and my cardio excused me for the rest of the school year. My principal and the staff know about my heart issues and are expecting me to be out for the rest of the school year. I don't know how to explain it if/when I go back this school year and say, "Yeah, I ended up not needing surgery after all." I guess I feel as if these symptoms ARE in my head (my cardio never implied that they were, but I still feel like I'm making a big deal out of nothing).

Anyone have any thoughts on this?

Thanks in advance,
Debi (debster913)

 

[geebee]

All I can do is let you know what happened to me. I had a cardiac cath in 1979 which showed moderate mitral stenosis and regurge. It was decided I didn't need surgery yet. Less than 6 months later, I passed out and was out cold for at least an hour before someone found me. I was admitted to the hospital and an echo showed moderate stenosis and regurge. I was referred to a surgeon who said, based on the syncope, we should go ahead with surgery but, since the diagnosis was moderate and not severe, he was sure he could repair the valve. When he got in, the valve fell apart in his hands. He could not understand why the tests only indicated moderate and was amazed that I made it to surgery.
He told me his mode of operation was to listen to the patient. If they had at least a moderate degree of valve problems and wanted surgery, the patient got their surgery.
I think you need to go see the surgeon. If he won't see you, find another. Moderate may not be severe but it is still significant and can cause heart damage if not corrected in time.

 

[Nancy]

Why not wait until the TEE results are in to make any kind of statements regarding your job. If it turns out that you do not need surgery right away, you could always say they are trying out a new medication on you to try to prevent surgery in the immediate time frame, but there is always the chance that it will come up again in the future. Explain that heart valve issues are sometimes this way and even you are perplexed about it.

I've have been in various types of situations in my career when salesmanship was very important. I'll never forget the excellent advice of one of the best salespersons that I have ever known. She always told me that when she had to give conflicting news or relay a shipment delivery difficulty, she always felt much worse than the customers could ever feel. They ended up feeling sorry for her, and always forgave her. She had customers for years. I highly recommend that strategy when you are facing a difficult explanation.

 

[Karlynn]

I had some pretty nasty symptoms with a dx'd moderate mitral regurg. SOB, arrhythmia - pretty much the works. I was so frustrated because no medication was alleviating my symptoms. I was begging for surgery but told my valve was not bad enough yet and that surgery may not take away my symptoms since they may be do to other issues for they don't see them with mod. regurg. I finally got my surgery when I went into the beginning stages of CHF - which was 6 months after I was told I wasn't ready for surgery. The surgeon told me (who was the one that 6 mo. before said I wasn't ready after reading my angiogram) that my valve was almost non-existent and they used one of the biggest St. Jude valves they had. He was truly surprised.

I think mitral valve issues do tend to be more symptomatic at an earlier stage than aortic valve issues. I personally feel that if repair or replacement is going to alleviate these symptoms - why wait?

While you may not be having surgery when you thought you were, I would continue to hound the dr. about doing something for your symptoms.

Nancy is right - wait for the TEE, but don't feel silly, this does tend to be the nature of valve treatment.

 

[Janea]

Here is an article I reccommend: Timing of Surgery in patients with Mitral Regurgitation. By Dr. Catherine Otto YOu can find it at: http://heart.bmjjournals.com/cgi/content/full/89/1/100#T3

 

[PJmomrunner]

It seems to me that you are most definitely symptomatic and, given that you've been observed prone on your classroom floor, no one at your school doubts it.

I wondered if an angiogram was actually a good way to assess mitral valve regurgitation, so I went hunting on PubMed and based on what I found (there's probably more, but I thought this was enough) I'd say "wait for the TEE" is good advice:

Transthoracic and transesophageal echocardiographic assessment of mitral regurgitation severity: usefulness of qualitative and semiquantitative techniques.

Khanna D, Miller AP, Nanda NC, Ahmed S, Lloyd SG.

Division of Cardiovascular Diseases, The University of Alabama at Birmingham, Birmingham, Alabama 35249, USA.

In this report, we review the advantages, limitations, and optimal utilization of various transthoracic and transesophageal echocardiographic (TTE and TEE) methods used for assessing mitral regurgitation (MR) as published in full-length, peer-reviewed articles since the color Doppler era began in 1984. In addition, comparison is made to other imaging modalities including catheter-based, magnetic resonance and surgical assessment of MR. Although left ventricular (LV) angiography has been traditionally used for validation of various TTE methods and is time-honored, its considerable limitations preclude it from being a real "gold standard." Based on the reviewed literature, no clear "gold standard" for the assessment of MR can be identified at present, but newly emerging TTE and TEE techniques, such as three-dimensional color Doppler, may have the potential to overcome some of the limitations of the two-dimensional methods.

 

[debster913]

Thanks to all for your advice. I (obviously) will wait until the TEE before I start worrying about what will happen after. Today I still feel symptomatic (have since Apr. 11), but as I'm staying here at my mom's recuperating from the incision in my groin, my mom is driving me up the wall. She's insisting that, based on what my cardio told her, my symptoms are all in my head and that my valve really isn't that bad.

 

[MikeHeim]

She's insisting that, based on what my cardio told her, my symptoms are all in my head and that my valve really isn't that bad.

With friends like that, who needs enemies? I am truly sorry that you have to go through this. It's a shame when those who should support us most are actually our biggest detractors.

I think most of us know when something is really not right. For me (as a marathon runner), I knew something was definitely not right when I suddenly couldn't run a mile without wheezing and gasping. My Cardiologist originally said that my regurgitation was mild/moderate and he just wanted to monitor it for awhile. After I pressed him with my symptoms (which sound much less severe than yours), he agreed to do a TEE. The TEE results showed that my regurgitation was much more severe than the original echo showed. Three months later, I was in surgery. As everyone else has said, I would wait for the results of the TEE. As far as I know, the TEE is actually the best way to determine the function of a valve. Nobody should have to live with the symptoms of valve regurgitation if they are affecting their quality of life.

 

[Karlynn]

Thanks to all for your advice. I (obviously) will wait until the TEE before I start worrying about what will happen after. Today I still feel symptomatic (have since Apr. 11), but as I'm staying here at my mom's recuperating from the incision in my groin, my mom is driving me up the wall. She's insisting that, based on what my cardio told her, my symptoms are all in my head and that my valve really isn't that bad.

I'm sorry she said that Debi. Tell her that I have the names of 4 doctors I could give her who tried to tell me I was being overly sensitive to my valve disease and that I couldn't be having my problems. When my replacement was finally done, there wan't much resembling a mitral valve in my heart.

Do not let any doctor (or mother) ever try to convince you that "it's all in your head". I actually had a doctor want to put me on Valium. I asked my surgeon if he could send that doctor what was left of my valve.

Even if the TEE comes back as a moderate regurg, I am living proof that it does not mean you can't have the symptoms you are having. Maybe they need to get a little creative with medication. (Didn't work for me, but if they don't want to do surgery, it's an option.)

 

[debster913]

Thanks again for your posts...it is hard to deal with all that the doctor has told me...both of us are puzzled as to why I'm having these symptoms if I really am moderate.

Was super tired today, chalked it up to the stuff from yesterday's test, but still can't shake this off and on feeling of fatigue. Told my mom I can't go back to work like this (have to be able to keep up with teens all day!) Called my cardio about getting the copies of my echo/angio and told him again that I feel tired a lot. He reaffirmed that he does not want to do surgery prematurely, but he wants to look into every possible avenue before sending me to a surgeon. I guess I'll just have to wait and see.

Thanks again for your posts!