worried that surgery is coming soon

Shop deals on ebay
Advertise with us
shop deals on amazon
Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
D

dej72

Tomorrow at 9AM I see my new cardiologist for the first time. I had a cardiologist in Chicago from 1995 to 2002, when I moved to the UK, I stopped getting echos done until last week, when I had one done with some suprising results. I'm wondering if my new cardiologist here in San Francisco is likely to recommend surgery:

Here's my history:

1. Bicuspid aortic valve

2. Aortic root diameter (mm)

May 1995: 42
August 1995 : 42
May 1996: 42
May 1997: 42
July 1998: 41
June 1999: 42
September 2002: 40
January 2006: 46

3. Aortic regurgitation

May 1995: moderate
August 1995 : moderate
May 1996: moderate
May 1997: moderate
July 1998: moderate
June 1999: moderate
September 2002: moderate
January 2006: severe

4. I don't have any symptoms of pain or shortness of breath or anything like that.

I'm a 33 year old male, 6'1" and 190 lbs.

Any opinions? Any similar stories? I'm interested in learning, if someone has a profile at all similar to mine, when did they choose to operate?
 
Surprisingly there are some people walking around that never have any symptoms and either are lucky and get fixed or drop dead unexpectedly.

It's too soon to say what your Cardiologist will recommend. What other tests have you had besides echos?
 
other tests

other tests

I've had stress tests from 1995 through 2002, all showed very good to excellent ability to tolerate exercise.

Also EKGs with all the echos. They were all normal.

That is all.
 
I'd want to have a Catheterization and/or a Transeshophageal echo before making a definate decision. Echos aren't the best tools for determining. Now if your heart is showing signs of enlarging, then it's time to consider some action and not wait until damage is permanent, but further diagnostics need to be done first.
 
root diameter increase

root diameter increase

Doesn't the increase in the root size of approximately 5 mm in just 3.5 years seem unusual? (or at least very concerning?)
 
Yes it does, but I wouldn't feel comfy with just an echo telling me that. I'm fairly certain your on your way to a surgical consult, but don't want to jump the gun any.

Let me say this, you found the best possible place to come for information and support. I do think your heading to surgery soon, but it's not as terrible as your imaging it to be right now. Scared? You betcha. If you weren't, something is wrong with you. Just try to relax until you've spoken with your Cardiologist and then go from there. We'll be here to help all the way.
 
Update

Update

1. Cardiologist wants to keep watching and waiting. Right now the risks of surgery are a little higher than watching and waiting. I have been rescheduled for another echocardiagram 3 months from now.

2. This could go on for a year or two.

3. If I started showing symptoms, or the aortic root gets to 5.0 cm, then I would need surgery right away.

She recommends echocardiagrams for my parents, siblings, and children.
 
Just bear in mind, it could be within the next 3 to 6 months too. Mine never made it to 5.0. My aneurysm ruptured at 4.7 or so. Not trying to scare you, but it grew rapidly in less then three months.

Follow the directions, but tread lightly with physical activity my friend.
 
question

question

Ross:

Thanks. It doesn't scare me; it's good to have lots of data points.

4.7cm seems low to dissect. Do you mind my asking if you have Marfan's? BAV like me?

-Derek
 
I was determined to NOT have Marfans, but mine was a result of years of untreated high blood pressure. I don't know about the BAV, I dont' have an documentation for that but it has crossed my mind. The old inner tube couldn't take it no more.

By the way, I was 33 when this all started for me also, so don't feel bad about being young and this crap happening!
 
sfconstrct

sfconstrct

dej72, Ross know far more than I all i know is what test i have had done. Echos really aren't very good measure of where you really are. They are just the starting point. I am a 50 yr. old very athletic and until about a month plus ago was playing full court basketball 4 to 6 days a week in competive fashion usually with kids half my age. Three years ago the echo said all was still ok so i stayed away from the cardiologist (not my favorite place) since i felt like I could still run well. although was starting to notice that I didn't quite have the wind that i had before but was still running at a pretty decent level so didn't want to see the doctor, figured if I could still run a an above average level I wasn't close. Anyway bout a month plus ago, while in the second game got very dizzy and had to be helped down and the guys called 911 the whole thing. After a few minutes I was fine, scared but fine by the time the paramedics got there i was fine and refussed the trip to the hospital. Anyway now was time to see the cardiologist. Got another echo confirmed that my valve had tightened to .09 indexed to .05. So my cardiologist said it's time for more test. Next the nuclear stress test, did fine did the whole 15 minutes got my heart rate to 160. Test revealed a very subtle abnormality but he said could be a mistake. So next test to confirm nuc. test the angiogram, couple weeks ago came back very good. all arteries open and clear, heart muscle healthy although had increased a little bit and was normal but at the high end. A.V. very stiff with mild regurg. other valves good. So thought it was just a valve job. He said it's time do while the heart is strong. Then to the surgeon he looks at the angiogram and said he thinks i may have an anyerism in my A.A. so he ordered a cat scan which I got yesterday. The cardiologist said i might have a large arota from being fit, anyway this will definately tell the story. So now I am waiting for results and will see another surgeon for second opinon after I get results. Bottom line I don't understand why you aren't getting the more definitive test it's a nautural progression. I have a pos and get good care as much as you don't want negitive news I would want some other test done. Hope you aren't getting hmo ed. Be assertive. Good luck. sorry to ramble.steve
 
advantages

advantages

what are the advantages to a catheterization or transesophogeal echo as opposed to a standard transthoracic echo?
 
Welcome to our lovely family

Hi Derek...you did say Marfans didnt you?

I dont mean to be a nosey-parker,.. just wanting to make certain you have this Marfans before I go ahead and give you a little bit more info specific to Marfans. Have you had the Marfs. genetically confirmed/diagnosed by a genticist etc?,,,

I got the Marfans label too .....until I went to the geneticicst who did a series of tests etc ( still have the special slit-lamp eye-test to go) but so-far the geneticist says I just have Familial Bicuspid Aortic Valve and an associated aneurysm...

The intervention size for Marfs is slightly lower than the regular BAV population due to their fairly-dodgy Fibrilin gene which is the elastic-gene for those who have forgotten what Fibrillin is :) ..(I also have this fibrillin fault with my FBAV) but its slightly less dodgy than a Marfan one from all accounts I have read.

And yes...defiantely why not take the chance to save a few more lives in your family with knowledge if you are able. Your Cardio seems to be right on the ball as per getting all your first degree blood relatives scanned/echoed at the very least...this is what we did and found 2 more in the family ( my sons).

the advantages of a TOE or TEE as its called in the USA is that they give a clearer picture cos the ribs etc arent in the way...I have had a "spiral CT with contrast-dye" and also a Cardiac MRA with the dye of my whole aorta to further more accurately measure my aorta and look for any other bulgy spots of which they found a smaller abdominal one I dont have to worry about for a few years yet...

I would never mean to alarm anyone here,,,just want to help inform...I was helped so much by these fabulous people when I was first diagnosed...and now I have very little fear of what my future holds.

please ask all the questions you need...the beauty of this place is that more than likely someone else had wondered the same thing or knows the likely answer...

yours may or may not have grown as much as it appears due to the margin of error in the regular echo
 
dej72 said:
what are the advantages to a catheterization or transesophogeal echo as opposed to a standard transthoracic echo?
Click to expand...
A Catheterization will give accurate pressures inside the heart and a real good look at the size of things. A TEE goes down the windpipe for the best view ever of the aorta and heart. A catscan or even gamma scan would be of value to you also. Do yourself a huge favor and get copies of all of your tests to keep. You'll want them in the future!
 
I think high blood pressure would enhance the risk of dissection in an aneurysm. I would go for at least a TEE -- this gives them a closer look at the valve and the ascending aorta ( closer = better resolution and more accuracy ), you can also ask about an MRI of the ascending aorta. A cath with contrast dye would possibly give the best pictures of them all -- but is also the most invasive.
 
not marfans

not marfans

Aussiegirl:

No, I do nt have Marfans. Just BAV with ascending aortic aneurysm
 
The expanding root size is quite concerning. It torques your valve, and is probably part of the reason it can't close properly, as the alignment of the cusps may be off.

At this point, there are other test measurements you should be watching, notably your atrium sizes and left ventricle dimensions and wall thicknesses.

Your heart has probably already begun to bulk up in response to dealing with your regurgitant valve. Providing your body its oxygenated blood is akin to you trying to pump up a tire with a hole in the pump's hose. It takes much more work to get the pressure up, and you can't keep it there.

Look on your earlier echoes and see what those LV dimensions are. note how much they've grown. Even if you haven't exceeded the "normal" heart size, you can see the response your heart is generating to the leakage in your valve. If your heart gets too large, or stays that way too long, permanent damage can result, particularly in the atria. The enlargement is only beneficial for a while, then the size of the heart actually begins to cause it to become inefficient. The end result of the expanding "athelete's heart" is congestive heart failure.

Classic echo readings are actually quite good for diagnostic purposes, and the TEE and catheter angiograms often serve only to validate the findings that have already been make by the standard echo. The main advantage of the other two types is that they don't have rib bones in the way.

As far as the symptoms, we are our own worst enemies when it comes to recognizing them. The changes in our bodies creep up in such slow increments, that we don't notice the change. We want to believe in our health, so we move ahead in such denial that we literally do not feel our own bodies' warnings. Angina doesn't always show up when we are exercising, and often show up as a slight to moderate, uncomfortable tightness at the top of the throat or as a feeling in the top of the lungs like you may get from breathing cold air. For women, it's even more bizarre, often showing up as jaw pain. The classic clutching of the left side just isn't the case for most.

I am neither a medical professional nor a fan of stress tests fro valve patients to begin with, but I am speechless that a cardiologist would deliberately give a patient with an ascending aortic aneurism over 4.5cm a stress test. There seems to be a concensus on VR.com that 5.0cm is the danger level - definitely surgery time. However, aneurisms can rupture at 4.5cm as well.

Best wishes,
 
CT Scan

CT Scan

Dej,

I didn't see this mentioned but I suggest you get a CT SCAN w contrast. This will tell the whole story about the aneurysm and might give you other valuable data. If the aorta is going (mine was last summer) then it's time to fix it and probably get the valve done while in there (that depends on a lot). Once my aneurysm hit a certain point it started growing like a water baloon. Surgery was scheduled for 8/10 but I had to have it on 7/21 because things got real bad real quick. Consider a CT Scan.
 
Ohh...
I get it..you were wondering if Ross had it cos he is so special and unlucky to do the big "D" well before the magic number 5!..no probs.:eek: :D .
 
CT scan

CT scan

Thanks for all the posts. Does anyone know of a medical journal article that would recommend CT scans for people with AV dilation characteristics similar to mine? My cardiologist seems quite enlightened in terms of listening to her patients. She said if I had any more questions or read anything else in medical journals that seemed to contradict her current advice, she'ld be happy to discuss it and perhaps change her recommendations.
 
You must log in or register to reply here.

Latest posts

Back
Top