Confused.....

[firrone79]

So I am not sure what to think. A little back story, I was diagnosed almost 2 years ago with BAV. First report that gave valve size which was February of 12, showed valve was 1.4-1.6. Then in July of 12, valve was down to 1.1-1.2. That echo also showed ascending aneurysm of 4.1 as well. Had Cath, TEE, and MRI done in October, and doc said that valve is fine no stenosis at all, but aneurysm was somewhere between 3.9 and 4.2. Symptom wise for the last year I have had SOB and some palpitations. Doc said SOB was not related to heart. Anyways I know that echos can vary and are not 100% accurate. But how can my valve go from mild stenosis to almost on the verge of severe via echo, to no stenosis at all. That just sounds like too much of a change. I understand that Caths, TEEs and MRIs are more accurate, but it just doesn't make sense to me.

 

[pellicle]

Sounds to me like the vagaries of medical imaging and the interpretation of their murky results.

If you look at them your self you'll be amazed that they can pick anything out of them.

It sure ain't measurements like I do with my vernier caliper

 

[epstns]

I think I would take all of my test results and seek a second opinion. When you get seemingly conflicting test results and nobody can explain them, I would look to another doc to help explain. If they cannot do so, I might opt for re-testing if you have any reason to think things are worse than "fine."

 

[firrone79]

I go on the 11th of this month to my family doctor, I think I am going to talk to her about all of this and have her refer me to someone else for a second opinion. My current cardio doc when asked why such a drastic change only gave the excuse that echos are not 100% accurate. I don't know, just confused!!!

 

[pellicle]

I'd go with Steve's suggestion. Somehow I misread your post and thought you already had two cardios involved

 

[clay_from_nj]

I'm surprised they didn't seem to put much emphasis on the cath results. That seems to be the standard for diagnosing heart stuff. I've had a few. Most recently, one when my current cardio decided I had an aortic valve issue, and another just before surgery. Echo gives some info, but the cath allows the docs to measure actual pressures and flows in the heart and blood vessels, as well as directly inject dye for imaging. It is also probably the best way to check for coronary artery blockages.

SOB not related to heart?? Just the #1 symptom of heart failure. Are you on any meds? Didn't they even give you a course of lasix to see how reducing your water weight would affect symptoms? It certainly made my SOB go right away. (Of course, the AVR fixed it for good!)

It's also interesting how different docs attach importance to different numbers. Yours apparently gives some weight to the size of the valve opening, whereas I have never had a doc mention that at all. One cardio I was seeing was all about ejection fraction, while the one I see now seems to think that it is practically useless data and cares more about LVH, cardiac mass, and various flow and pressure measurements. Whatever you want to measure, as long as it leads you to the right treatment.

The number I care about the most right now is the size of new dumbbell plates I have to get because the ones I have now aren't enough for my pullovers and shrugs. :biggrin2:

 

[firrone79]

I don't know I am just lost!!! Only meds I am on is for my blood pressure. I have been on Lisinopril for 3 years now, my blood pressure initially went up when I was pregnant with my youngest daughter pre BAV diagnosis. Anyways then when they discovered the ascending aneurysm the doc put me on Toporal as well. I just wish I knew exactly what was going on, I just don't understand how it can go from being borderline severe via echos to no stenosis at all via the cath and TEE.

 

[pellicle]

I just don't understand how it can go from being borderline severe via echos to no stenosis at all via the cath and TEE.

it probably didn't. Probably only the interpretation of the data changed.

I recommend getting another opinion and waiting to hear that before getting anxious. As well meaning as many here are remember "this is the internet" and people here are not specialists. We can offer our life experiences but not medical opinion.

Anyways then when they discovered the ascending aneurysm the doc put me on Toporal as well.

when they discovered my aneurysm there was some consternation. IIRC it was 5.9 or something like that. They just told me to take it easy, give up my weights and running till after the surgery.

If it was truly life threatening I'm sure you've have been told that ... noone likes a lawsuit and you can bet your bottom dollar that the medical people are good at risk analysis.

 

[ski girl]

Yeah that's odd. I saw a cardio when I was 28 who measured my AV at 0.6. He freaked me out so much (I felt fine!) that I didn't see another cardio until I was 32 and then my AV was 1.1. ??? But that's nowhere near the swing that you've been told about.

I agree with what others have said - get a second opinion and SOB is a symptom of something wrong with your heart!!!

Good luck from down under!

 

[firrone79]

I know that no one here is a specialist. I am basically just venting because no in in my personal life really understands my frustration.

Also about the part that you quoted from me about the aneurysm I was answering clays question about meds. Saying that after they found the aneurysm they added the toporal. In no way was I questioning anything about the aneurysm. Only thing I am questioning in any way is how there is such a difference in the valve area.

 

[firrone79]

Yeah that's odd. I saw a cardio when I was 28 who measured my AV at 0.6. He freaked me out so much (I felt fine!) that I didn't see another cardio until I was 32 and then my AV was 1.1. ??? But that's nowhere near the swing that you've been told about.

I agree with what others have said - get a second opinion and SOB is a symptom of something wrong with your heart!!!

Good luck from down under!

I go on the 11th for my yearly physical with my regular doc, going to talk to her about getting a referral to someone else.

 

[pellicle]

I know that no one here is a specialist. I am basically just venting because no in in my personal life really understands my frustration.

that's fine ... vent away

I was just making sure, as I seem to feel people do get carried away with advices here