Bad day at the dr.

[Tdot]

Hi friends

I haven't checked in in a while. Last post was last year after my yearly echo...(BAV root dilated to 43 stable over 3 years and trivial regurg). Went to my annual today and they found root at 45 but more concerning to me was LV enlarged to 58/37 vs 51/34 year before. Was noted that valve has trivial regurg but tech noted there is a wider jet...whatever that means. I'm also symptom free and able to exercise frequently with no issues. My cardio says he doesn't think the LV enlargement is valve related and could be genetic.
He's going to book an appt for a second opinion with a surgeon at st.mikes in Toronto. He thinks beta blockers might work to manage the LV. I'm wondering if it is in fact due to the valve and time to do something about it.

He said it's still nothing to be concerned about but I'm a wreck. Don't understand how LV could change so drastically. I've been managing this situation pretty well since diagnosis but today floored me. Any thoughts or experiences from anyone on LV changing with trivial regurg? I left today with a sense that I'm dealing with two heart related issues vs just one and I don't know what to think.

Thanks

 

[ottagal]

Hi friends

I haven't checked in in a while. Last post was last year after my yearly echo...(BAV root dilated to 43 stable over 3 years and trivial regurg). Went to my annual today and they found root at 45 but more concerning to me was LV enlarged to 58/37 vs 51/34 year before. Was noted that valve has trivial regurg but tech noted there is a wider jet...whatever that means. I'm also symptom free and able to exercise frequently with no issues. My cardio says he doesn't think the LV enlargement is valve related and could be genetic.
He's going to book an appt for a second opinion with a surgeon at st.mikes in Toronto. He thinks beta blockers might work to manage the LV. I'm wondering if it is in fact due to the valve and time to do something about it.

He said it's still nothing to be concerned about but I'm a wreck. Don't understand how LV could change so drastically. I've been managing this situation pretty well since diagnosis but today floored me. Any thoughts or experiences from anyone on LV changing with trivial regurg? I left today with a sense that I'm dealing with two heart related issues vs just one and I don't know what to think.

Thanks

Tdot,
Sorry to hear that you got some news that you weren't expecting. It certainly comes as a shock. My first question would be "how accurate is this echo"? I have had echos that have 'varied' in their readings from one year to the next. Personally, I would be requesting another type of test to confirm the findings. That way you will be better equipped and confident with the findings before meeting with the surgeon for a second opinion.
Wishing you all the very best!

 

[Guyswell]

Tdot

Today's results might mean that you're closer to needing surgery, or they might not. Remember that its normal to get different results from echo studies especially if they were conducted by different echo techs on different machines. Given normal variation in the measurements, your results from a year ago could actually be closer than you think to today's results. That's why you need a second opinion and follow-up tests. Take comfort in the fact that your cardiologist isn't alarmed. When it's time for surgery, the recommendation will be based on your symptoms, trends in the measurements, and published guidelines and limits. The amount of regurgitation and the size of any jets are only two of the measurements that matter. When it looks like the risk of waiting outweighs the risk of surgery, then it will be time to move forward with surgery. If you eventually need surgery, don't panic. I've done it twice and it's not as bad as you think.

 

[ski girl]

Echo results can vary widely! In 1998 I was told I had a valve area of 0.6 that mysteriously improved (not possible!) to 1.1 a few years later. So try not to worry too much about this one. However, remember that you cannot 'manage' the progression of your heart's deterioration, you will eventually need surgery and the rate at which you get there is not linear, it is in fact somewhat random in that not much will change for years and years all of a sudden BOOM you;re told now is the time.

If your cardio isn't worried, you shouldn't be.

 

[Tdot]

Thanks everyone. The test was run by the same tech. Any thoughts on why the LV would change so much even if the valve is still working fine? This is what's bothering me the most. I haven't slept all night.

 

[Agian]

Telling someone 'it's probably genetic' isn't really saying much. I'd be pushy and ring him up to ask whether it's really worth losing sleep over. I don't want to sound like a pedantic smart arse, but as the surgeon isn't a cardiologist it isn't really a second opinion. I'd interrogate cardiologist one, see the surgeon and ask your GP to refer you to another cardiologist and maybe surgeon. Sit down and reflect. It might be time for surgery. Now I'm no expert (not even a scar on my chest), but I'm also in the waiting room and I know what it's like to lose sleep. Read Adam Pick's book, it eased some of my anxiety.

Btw, If you can't get to sleep, just remember it's daylight in other places and that someone, somewhere is reading your 3am post.

 

[pellicle]

Any thoughts on why the LV would change so much even if the valve is still working fine?.

We are designed as a fault tolerant system. So things can go a bit wrong and the stack doesn't collapse

It seems you are in good hands so don't worry overly. Its a bit like a slow motion chess game. Nothing usually changes suddenly.

Keep up the good work.

 

[Tdot]

Hi Agian good comments. Cardio said we can treat it with medication and he wasn't worried but really didn't have a reason for why. I did some reading online and apparently root dilation is associated with LV enlargement, something to do with increased workload due to aorta shape. Which means to me it's all related vs separate genetic issue. I also read here that post op peoples LV return to normal size.

I agree on time for reflection, I'll check out the book thanks. This site is a blessing, I feel like I'm in a dream I want to get out of then ii will come in hear and get perspective that this is life and here is light at the end of he tunnel.

 

[Guyswell]

When I was in the waiting room prior to my first surgery, we were watching several things including the size of my left ventricle, the diameter of my aortic aneurysm, and my ejection fraction. When we decided to proceed with surgery, it was because my left ventricle was enlarging, my aortic aneurysm had reached a certain size, and my ejection fraction was dropping. These were all signs that after 40 years of compensating for the bad valve, my heart had entered the de-compensating phase. If I had to do it over again, we would have gone to surgery a little sooner. It took me a little while to recognize that after a lifetime of watching and waiting (my first heart catheterization was at age 8) the abstract "someday" had become the reality of "soon". I know it's not easy to accept but you will. Proceed with the follow-up tests and second opinions.

Here's your light at the end of the tunnel... There's never been a better time in history to have the birth defect you have. Aortic valve surgery is done thousands of times every day all around the world. If it truly is time to think about surgery, get on the waiting list and say a prayer of gratitude that you have that option. Even 100 years ago, we wouldn't have had any options. I count my surgeries as blessings. When the time comes to proceed with surgery, embrace the opportunity to fix the problem and go on with your life.

 

[T in YVR]

Tdot,
Your message says your LV is at 58mm at its largest diameter? According to my echos I have had < 57mm is considered in a normal range (the echo results/summary sheet state that this is the 'normal' range). If I do understand you correctly, being at 58 mm is not much over the threshold! When I was diagnosed I had moderate-severe regurg and was at 65mm for my LV. I got tested again 6 months later (same tech/same machine) and it was at 62mm. This is considered 'moderately dilated'. And then after my surgery on Oct. 1 it was at 66mm. I wish I was at 58mm! The LV size can fluctuate a bit, as with all your other measurements. They can also be interpreted slightly differently from one tech to the next. Post surgery, I am now on a beta blocker (Metoprolol) and an ACE Inhibitor (Coversyl) to help the situation - the ACE inhibitor dilates your blood vessels and takes some of the load off of your heart - my surgeon and the cardiologist said it may help my heart reduce in size. In my research, I learned that once you hit 71 mm, you fall into a 'severe' category in terms of how dilated (or enlarged) your left ventricle is. It is at this stage that longer term damage to the LV can be more likely to occur - but everyone is different (they tell me there is no guarantee my LV will go down).

The term 'wider jet' just describes how the blood is regurgitating at the valve. Mine was called an 'eccentric jet' because of the direction and way it regurgitated. I don't believe its a good or bad thing - it just describes the flow. The way in which the regurg flows/takes place depends on a few different factors such as the profile of the cusps, how badly (or not) they are working (mine appeared to be calcified to some extent and they were not sure if I had 3 cusps/leaflets with 2 leaflets stuck together or if in fact it was a true bicuspid valve - it turned out to be a true bicuspid valve) and the degree of regurg.

Personally, I would not get too overly worried - maybe get a 2nd Echo if it makes you feel more comfortable. I would be more focused on monitoring the condition periodically to see how the LV or regurg changes.

Hope this helps,
Tony

 

[Midpack]

Tdot:

Relax, and TRUST your doctors.
This does not seem to me as a drastic increase in your LV size (using your own words). As a matter of fact, your LV size is almost in normal range. Just slighty enlarged. On the other hand, echo measurements are not accurate to the milimeter. If you had the opportunity to look at the monitor during echo, you know that what is seen is hardly a high definition image!! On the contrary, it is as a pretty blurred one, of something that is beating! (fortunately, lol). And even for trained eyes, in my opinion, choosing the correct clicking point is not an exact science.

Take care. You will be ok.

 

[Tdot]

Thanks for all the replies everyone. In your experiences have any of your docs prescribed meds to deal with LV function or aneurism before making a decision on surgery? I guess what I'm saying is are there any preventive measures I could take before surgery given that valve is working, root is <5 and I have to symptoms? Obviously I will ask my dr but wondering if anyone had a similar experience. Thanks

 

[T in YVR]

I really doubt whether they would put you on any meds at this stage since your LV is virtually within range, but no harm asking. Usually when the LV is more significantly dilated or when the regurg is more severe, then they would consider surgery.

 

[Tdot]

Hey Tony, mid pack, thanks a lot for the input. Tony you are correct that the max was 58. It just surprised me that it increased by 7mm in one year with a trivial regurg. Perhaps the dilated root increase valve area and therefore somehow impacts the LV. Anyway that's the kind of explanation I was hoping to get from mr.cardio but I'll ask the surgeon.

Btw All your posts made my day a lot easier. God Bless and please keep it coming.

 

[Tdot]

Also, back to ski girls comment that echos vary, I didn't mention that my heart rate was 130bpm and god knows what my BP was...I wonder how much that could affect results?

 

[T in YVR]

Tdot - I posted this article some time ago under the resource section. I thought I would re-post it here. You may find this helpful - I thought it was very well written and informative. Its entitled: "The challenge of valvular heart disease: When is it time to operate?" These are Cleveland Clinic doctors/authors, so its very reputable. Its several years old, but still very applicable I think. It also talks about LV dimensions etc.

http://www.sjhg.org/wp-content/uploads/2012/10/whentodosurginvalvularheartdisease6-04.pdf

 

[Tdot]

Thanks tony. It talks about LV being "severe" with regurg. So I guess I'm not quit there. I'll let the surgeon put the big picture together. I should get the test redone I think, like I said above my heart rate was 130 on account anxiety because I knew the root had dilated more...vs last year I was told the root was stable and was much more relaxed during the exam.. That may have skewed results.

 

[ski girl]

my heart rate was 130bpm and god knows what my BP was...I wonder how much that could affect results?

Hmm yeah I think the fast heart rate could have a big impact! I had an echo delayed a few years ago (one week post-op) when my HR spiked to 150, as they knew they would have a hard time getting measurements correct. There's quite a bit of art to an echo - if you watch them, they take a picture and then use the mouse to draw a line from part to part (so already two sources of error!) then a bunch of these measurements are entered into various equations that have assumptions that aren't necessarily relevant.

Case in point - aortic valve area is calculated by the modified Bernoulli equation, which assumes your aortic valve is a perfect circle. Well, it's not. So on top of the art involved in making measurements from a grainy ultrasound image you're now using an equation that isn't realistic!

My point? Don't freak out too much about echo results, how you feel is the important part. Relax and have a beer, Canada has some excellent microbreweries if I remember correctly, I prescribe a medicinal beer!

 

[Tdot]

Haha thanks ski girl, we do have good beer!
I'm feeling less anxious this morning, got a good sleep last night.

 

[epstns]

Tdot - Even if your doc recommends meds to control things, be careful what he/she prescribes. Beta blockers, especially in higher dosages, can have some rather unpleasant side effects. Immediately after surgery I was prescribed Metoprolol timed-release, at 100 mg/day. I felt foggy-headed, bloated, gassy, felt like I was dragging a sled full of boulders all day, reduced exercise tolerance, etc. (And some others I won't discuss in open forum. If you're still curious, PM me.) It wasn't until we reduced the dosage to half, and then to half again that I began to feel better. Not to say that these meds can't help, but be sure to discuss side effects before you leave the doc's office.