Seeking feedback-recently diagnosed w BAV and 51mm AoRoot

[Cliffk17]

To add to my above "UPDATE" post, I found it interesting that the CT that was conducted was listed as a "slightly suboptimal study" meaning the scan wasn't as great a quality they were hoping for. Would that not prompt my cardiologist to want to push a follow up scan to take place sooner than one year down the road in order to obtain a better sample and more accurate read?
I guess with the new guidelines in place of 5.5 cm no one's in a rush yet I have that uneasy feeling!

 

[Fundy]

Have you asked your cardiologist to refer you to another cariologist for a second opinion. It would be probal be your fastest route to an actual second opinion I'd think. It seems strange to me, that at 5.0cm plus the cardiologist wouldn't want to know if its getting larger fast,slow, or stable. Then again, would an anneurysm explain all your sympoms?

I didn't have the anneurysm problem, but the severe stenosis. I had similar problems though with a family doc that prescribed psyche meds. I took those for a month, then stopped. Changed my diet, visited chiropractors and massage therapists regularly and seen quite an improvement from but still experienced problems more than I figured I should be. However, a few years later I did get the valve changed and now In comparison I have near zero problems with muscle tightness, anxiety, or dizziness. In spite of what anyone else said, I think the valve was the problem.

Anyway, it probably wouldn't hurt to ask your cadiologist to refer you to another for a second opinion.

 

[tjay]

hi Cliff,
It seems from your echo results that your valve is working great, no regurgitation or stenosis. Your only issue then seems to be to closely monitor the aortic root (and ascending root) going forward. It doesn't appear your GP or cardiologist were off in their opinion that you didn't need a surgery already (for aorta) perhaps considering recent guidelines, and perhaps because your valve is otherwise fine (at least there is no big justification in their mind to rush it anyway).. And perhaps that's why your GP even started calling your symptoms hypochondriac (??). You sure would benefit from knowing the root cause of your symptoms, and for that it probably is also important that you let yourself calm down (and assured), especially after given so much diagnositic information about important health matters lately.
All the best. Stay safe and follow closely with your doc/cardio. But your valve looks fine. I will let others more experienced provide analysis though.

 

[MtBiker]

Cliff,

Your LV doesn't appear dilated or hypertrophic which may be why your cardiologist is using 55 mm as the threshold for surgery, but I would push to have the docs track down the cause of your symptoms. For the 35 years they monitored my BAV before surgery they told me the thresholds were either my LV enlarging beyond about 6 cm, my EF dropping below 50% or becoming symptomatic. My LV enlarged significantly in the echo a year ago though I didn't have any noticeable symptoms, so I had surgery last June.

Good luck with it. Push hard and ask lots of questions!

 

[Owen]

Cliff..

I'll also add on a little more to this.... the way my cardiac surgeon put it was this: Sooner or later, BAV is quite likely to cause the aneuryism. And he stated several cases he had in which a valve-sparing aneuryism repair was performed, only to have another re-occur a few years later.
He wasn't positive as to which was causing my symptoms (the valve or the aneuryism), he said either one has been known to do so.
He stated two main reasons for going ahead with valve surgery . One being my symptoms (which were causing my employment to suffer, for one thing...), and the other being his belief that there was a high likelihood of further problems if it wasn't replaced.
Now, I'm certainly no expert either, although after my diagnosis I spent a lot of time researching. But given your symptoms (quite similar to mine pre-op), it would suggest to me that the aneuryism would be the first place to look for a symptoms cause.
Mine was 5.2 when they discovered it, and given my symptoms they immediately put me off work until surgery, less than two months later.

And BTW, I've had many sources tell me that the Royal Jubilee is the hub for heart surgeries for BC - very highly recommended. And my surgeon ( I pm'd you) is also very highly recommended and well-known for his work.

After re-reading your original post, I really hear you re: " I know my body very well." One thing my cardiologist told me recently (which really impressed me!), was that when all these voices involved in my care were telling me things were really ok, very few of them have actually been through this and therefore they don't actually know. It was very refreshing to hear from a medical professional that "I've never been through this myself, therefore I'm inclined to begin the process by taking you seriously."

Agreeing with mtbiker - "push hard and ask lots of questions!"

Good luck!

 

[Cliffk17]

Been a while since I posted. I’ve been busy finding ways to move my process along. I managed to have a second echo done 2 weeks ago which wasn’t scheduled to be done until August 2014 as an annual follow up to last year’s echo which was my first. To refresh, I was diagnosed with BAV last summer/fall and dilated aortic root of 49mm per 2013 echo and 51mm per CT done a month apart.
I’m seeking your feedback on what credence you give to echos done by different techs and if any variances are noted, particularly in aorta dilation, is it something to be concerned about or is there a level of inaccuracy/leeway to some degree?

Last year’s echo showed aortic root at 49mm, ascending aorta 45mm and nothing else was noted to be of any concern. Essentially the valve was/is functioning well otherwise. A CT Scan a month later showed the root to be measured at 51mm …at that time I was told CT’s are more accurate than echos therefore there likely wasn’t any growth over that one month just an accuracy thing.
This year’s echo, 7 months later and done after a visit to emergency because of chest pains the night prior as well as worsening symptoms of dizziness, fatigue, SOB upon exertion and muscle fatigue particularly in my legs. Aortic root 50mm, although let me preface that in the commentary of the reviewing specialist it was mentioned the size of the root ranged from 50mm on the parasternal view and up to 51mm on the short axis image. Honestly not up to speed on the two views and what those mean nor which is the correct number to go on? Echo also indicated ascending aorta to be 45mm …no change from 7 months ago. One thing that was noted in this most recent is that the arch was enlarged (32-34mm). The arch was not mentioned at all in my last echo. Aside from all this, same as last year it was noted the valve was essentially working fine.
So it would appear that comparing echo to echo the root has grown in size by 1 or 2 mm in a span of 7 months. Ascending aorta is the same and the latest has the arch indicated as “enlarged”.

I subsequently had an appt with my cardiologist which went horribly wrong and I won’t even get into the details other than stating it was the most unprofessional medical specialist I have ever encountered in my life! He was 100% unprepared for my appt and knew nothing of me when I walked in and he saw me 7 months ago to review last year’s tests. He got irritated and perturbed at my questions and was belittling and stated all my symptoms were in my head. I am awaiting confirmation on a second cardiologist to be assigned to me from my GP.

In your experience, are the echo measurement differences something to be concerned about? The cardiologist (I will no longer be seeing) stated echos can be accurate within +/- 1-2mm. I suppose this could mean my aortic root is potentially 48mm on the small side and up to 52mm on the larger size but we don’t know for sure?
Another item I wonder about is, if over 7 months, my root went from 49mm to now up to 51mm therefore a 2mm growth in what I consider to be a very short period of time.
Is it then safe to assume that last year’s CT, which apparently is supposed to be a more accurate measurement, would also show a 2mm growth over the same period if I was to have one done now? This would mean a CT could possibly show the root to be 53mm. That is only 2mm away from the magic number of 55mm that I am told is now the standard trigger for surgery consideration. Of course I understand the only way to know this is to have another CT done and in fact am being scheduled for one in July.

As always I appreciate your input and feedback!!

 

[Agian]

I'd want to know one way or the other. Would bringing the CT forward ease your mind?
My echo results have shown some variability.

 

[AZ Don]

I suppose that echo's can be accurate within 1 to 2mm, and they probably generally are, but they can also be less accurate. There was a thread not too long ago where two tests differed by about 5mm and the CT scan showed nothing had changed. The CT scan is generally very accurate (maybe to within 1mm typically?). I think aneurysms typically grow at a rate of 1mm per year but individual results vary widely. It's good to hear that your valve is well functioning but if you are having shortness of breath and chest pains that is a concern and something you need explained.

Aortic aneurysms generally do not cause symptoms until they rupture or dissect, but they can cause symptoms earlier - and that is an indication for surgery. From the Mayo website:
As a thoracic aortic aneurysm grows, some people may notice:

Tenderness or pain in the chest
Back pain
Hoarseness
Cough
Shortness of breath

I had no symptoms but I often had very brief heart palpitations and they were more frequent in the months prior to my surgery. One was significant enough to cause dizziness, though it too passed quickly.

 

[tjay]

hi Cliff,
Measurement instruments are characterized using 2 terms - Precision and Accuracy (you can find definitions on the web). Echo (ultrasound) instrument may have a 'precision' of 1-2mm (if they are saying so), but it may not be very 'accurate' in the measurement of aorta (but it’s not too shabby either). In comparison, CT scan for aorta is 'relatively' both precise and accurate. In both cases, however, there is a third element - the user (and use conditions). For example, if a subject is at an angle w.r.t. the scanner, 5.0cm measured at an angle may actually be 4.7mm (or vice versa). And perhaps that's why a hand-held echo instrument is more prone to user-errors, even for the measurement of parameters such as LV size and EF, where it's considered a gold-standard (in comparison to CT scanner which doesn't visualize heart LV dimensions and EF etc much at all).

More on the user-error, specifically user-variability. If you go to another echo technician the same day, you may see significantly different readings on LV dimensions, EF etc. But in order to really test that hypothesis, you must not disclose the first echo results, to remove the 'bias' element. There is so much user-variability in echos, that even the same machine and technician, could very easily produce different results. When you visit them year after year, they have access to your previous reports, and they always refer to them so that they can adjust to the 'variability' of their own. I’ve personally witnessed all these permutations and combinations with my echos with various providers, some simultaneously, over the years.

I guess what I'm trying to say is that the variability you have mentioned in your recent echo report is not worth splitting the hair. For all practical purposes, you can consider your root to be 5.0cm and ascending aorta as 4.5mm. And based on that you and your cardio will have to make a decision. It appears that your cardio will not recommend a surgery with those numbers, given the new 2014 guideline, and also because your valve is otherwise fine.

But at your personal level, there are a lot of questions which must be addressed, for you to have a peace of mind. Symptoms are some of those. Even if you lacked symptoms, you probably would not have had a complete sense of security (I don't), having faced with so much information and decisions to make. So let's talk about some of that. You see, aorta (root and ascending) are just some of your (and my) problems, overtime. Ultimately, it's the BAV. So the valve itself is also hovering around somewhere there, even if it's not so bad right now in your case. Let's make a couple of hypothetical scenarios. If you go ahead for surgery now for root and ascending, they would probably spare the valve (and if they could/did not, 10-20 years life left on that go to waste). Reality is that you don't know the current rate of deterioration of valve at this point, since you just started monitoring it less than a year ago. You don't know how your valve may fare in 5-10 years, from today's EF of 55% which is OK but not fantastic (but w/ echo variability who knows), and LV is inside of upper limit of normal. Similarly, the downstream of ascending aorta, i.e. the arch needs to be monitored over the years. It's way too early to call that anything of concern right now (32-34mm?), but having a few more data points over the next 5-10 years may shed more light. Hypothetically, if needed, it could potentially be one job (i.e. aorta and valve) rather than 2 over the next 10-20 years. Who knows. And who knows, if your cardio is thinking somewhat on those lines. You can always take a second opinion, but just as this forum and we as patients factor in decision making, medical practitioners should also be partnering actively in the same process as only they know your situation first hand (and not people like me on the forum).

None-the-less you would have to manage your symptoms and perhaps settle with less than desirable level of physical activity in your current lifestyle. Most importantly, having assurance is also important IF you and your practitioners decide to wait. But first things first. Waiting is remote secondary to handling this one (i.e. aorta) at hand at the moment. After clarifying with your 2nd cardio on the current situation, and if it comes to waiting, a 6 month frequency may be on the cards, with next follow-up involving a CT (or MRI) within 3 months since aorta is your biggest problem. And for whatever it is worth, a 5.0cm root with 4.5cm ascending aorta is probably better than 4.5cm root with 5.0cm ascending.

In any case, all the best and please keep us posted.