I'm "Only" 39, It's "Only" 4.5cm

[Equusz]

Greetings to all.

What a great forum!

I've been a paramedic for 20 years, and am about to finish my RN as well. I have a long term goal of being a nurse practitioner. I'd like to live long enough to reach that goal.

Last month I stopped by Swedish hospital in Seattle to get a Calcium Score. This is the 64-slice EBT scanner that can tell you if you have heart disease by detecting calcium in the coronary arteries. Although I'm reasonably young and don't have a family history that I know of, the scan is cheap and you can do it without a referral so I figured why not. It was my second scan; I had started doing this in 2006.

The good news was minimal calcium - just one small detectable spot in the right coronary artery - so a very low calcium score which is appropriate for my age group. Bad news - 4.5 cm ascending aorta, which the radiologist called "ectatic". Good news - he went back and pulled the 2006 scan (which is the only other chest CT I had before this year) and compared the sizes and said it was 4.5cm then, too - they just didn't note it. I then went to my own physician at home and they did a full contrast chest CT and confirmed the size of the ascending aorta at 4.5 cm. I've had weird back and chest pain for the past 8 months - minor and seems to change with position - but there was no dissection evident on any scan. Arch and descending aorta are normal.

So this was news to me. I knew I had minor AV regurg which my own cardiologist caught when I had a battery of tests to find out why I was having PAC's back in 2006. The stress EKG was fine, but the stress Echo found minor regurgitation. My cardio said there was no evidence of muscle damage or LVH, and that we would monitor it and maybe in 20-30 years I would need a new valve. Since I wasn't having any symptoms of heart failure or AV failure he thought a TEE was too aggressive at this point, so the valve itself wasn't imaged. The aorta wasn't imaged on the Echo either, which is why we only found it thanks to an observant radiologist last month at Swedish.

My personal physician and cardio both seem pretty nonchalant about the ascending aorta. Both of them feel that since it hasn't changed in 3 years (or maybe earlier, no telling when it actually formed), that we just do annual CT scans, and in the meantime get my BP low, reduce weight, and do the whole heart-healthy lifestyle. However, after reading up on this forum and the Cedars-Sinai page about when it's appropriate to do surgery, I think more information is in order, and rapidly.

See, I work in remote sites where it can take hours for a medevac to happen. If I was to dissect out here...well...it wouldn't be good.

On the other hand, I don't want to rush into surgery if it really is stable. But how to tell. The shoulderblade-->chest pain concerns me, because it seems like it could be aortic. But it doesn't increase on exercise and doesn't correspond to my blood pressure. It just *is*. I know what cardiac and aortic chest pain is supposed to be described as, and this could be it, on the other hand it gets worse when I turn my head a certain way and doesn't seem to occur when I'm home and sleeping in my own bed. So maybe it's just a back issue.

It seems to me that I really need to find out if the valve regurg is causing the enlarged aorta, or vice versa. If I have a bicupsid aortic valve, then I think the trend at the major centers is to do surgery earlier due to the relationship in connective tissue problems. If the valve is normal and is leaking because an isolated dilation is pulling on it, then maybe we can wait longer.

I called Dr. Craig Miller's office at Stanford. I know he's one of the gurus on the west coast and I have friends I could stay with if I needed treatment there. His nurse practitioner said they would be happy to review all my records and films and give me an idea whether surgery was warranted; but based on what I was telling him he didn't believe Dr. Miller would recommend surgery at this stage, and that chances of dissection at 4.5cm when the person is aware of the condition and controlling BP, etc is extremely unlikely, less than the mortality rate for even Dr. Miller's surgeries.

(Ross, I'm aware that yours and others have dissected below the magic 5.0 number, but did that happen without you knowing about your condition, or were you aware of it and keeping your BP down, etc, and it still happened?)

My plan is to get my cardio to order a TEE or MRI so we can really see what the valve is like. Perhaps image the abdominal aorta as well while we're at it, just in case. Then send everything to Dr. Miller for a review to see if my cardio's lack of concern/watch-and-wait attitude is appropriate.

I'd certainly like to hold off on surgery until I can afford 3-4 months off work. Having the surgery will probably disqualify me from remote-site medical work, so I'd like to have all my higher education done and in a job with short-term disability and/or some savings - figure 3 or so years from now. Right now I have good health coverage (can go anywhere), but no disability.

On the other hand I don't want to wait until it's too late. I had a friend who died from a dissection about 10 years ago. I don't want to go that route.

Thanks for any input you have, sorry for the long post.

--Equusz

 

[36drew]

I see some familiarities in your story and my own. Only difference is I am only 24. I think it might be a good idea to pursue an angiogram. Do you have any murmur? I would expect you would with regurgitation. An angiogram can tell you more precisely about how severe or mild your leak is.

My previous diagnosis always saw my valve as mild-moderate in terms of leak, but the angiogram found it to be severe. For every litre of blood going through, half was flowing back. In your case, you need to find out whether or not that valve is bicuspid. Maybe things are different in Canada, but you don't need a TEE to diagnosis a BAV (bicuspid aortic valve). I'm not sure if technology plays a difference.

It sounds to me like this is something that needs to be taken care of sooner rather than later -- the chest pain would concern me.

 

[Duffey]

Hi and welcome.

Many times they can't determine if a valve is bicuspid until they have you opened up on the surgery table. That happened in my situation. On the other hand, our son's bicuspid valve was seen on echo as was our grandson's.

I think your plan to have a MRI done before sending everything off to Dr. Miller is sound. Is your blood pressure stable? That's an area that you need to have under control. If Dr. Miller thinks it's too early for surgery, then I imagine he will recommend a follow up echo or CT scan at 6 months to determine the rate of enlargement.

In the meantime you sound like you've got the situation under control. If you have time, you might check some of PJmomsrunner threads. PJ is in a similar situation and has done alot of research that you may find helpful.

 

[Equusz]

Drew:

Well, a TEE or a certain kind of MRI called an MRA - not every hospital has the right kind of MRI to see the valve. I haven't had an angiogram yet, might be an option. The only test I had done were the EBT scans which showed just a little plaque, the stress EKG which showed no ischemic changes under exercise, and the trans-thoracic echo which showed the regurg. I knew it as soon as I they passed the transducer over the AV that something was wrong - could hear the blood go both ways. But since the I didn't have any signs of LVH or cardiomyopathy (and according to the 2009 scan, still don't), he decided not to do anything further and just monitor for symptoms. But now I think I can convince him to look at that valve at least.

Duffey: I've heard that some aortic valves can look normal when they're actually bicuspid, but that a really good cardiologist can tell if he gets the right images from the right angles. That's what I'm pushing for now. As to my BP, it's interesting you bring that up. I've had borderline hypertension since I was a pre-teen, but it's never been to the point where I thought I needed meds. Never more than 140/90. Then when I was on the treadmill for the stress Echo, my BP shot up to crazy heights, especially the systolic. My heart was fine but my BP was nuts. Once my heart rate got back down under 120, the BP went back down. I've been on low-dose Atenolol which keeps my systolic BP between 120 and 130, but from what I've read, that's not low enough when you have a dilated aorta. So when I get home in addition I'm talking my doc about better meds to try to get the systolic down to 105-115. Maybe Cozaar and a diuretic.

Thanks for your replies.

--Equusz

 

[Maryka]

I have met quite a few people who had dissections. It is not something to fool around with! Of course some people die of them, but survivors have to contend with having to have the rest of their aorta replaced, it seems. That means another OHS!

Also, I once knew a woman who had had a dissection and repair and worked as a nurse. You have to do a lot of moving of heavy patients. That is a dangerous activity for people who are prone to aortic aneurysms. (The nurse died at a young age of another dissection.) I hope as a nurse practitioner you would NOT have to lift and move people. Hmmm. Are you moving people NOW as an EMT?

Yes, get as detailed an evaluation of your situation as you can, please! It is great to have people with connective tissue problems out there helping others like themselves, but not if you are cutting your own life short.

 

[Equusz]

Hi Maryka, thanks for your reply.

I don't move people now since I basically man a clinic at a remote site. If there's an emergency I would have to move them on the stretcher, but with help.

It's interesting that I've been reading about this limitation on heavy lifting but that neither my PCP nor my cardiologist have said to limit lifting. That's why I need to get more info on this. Actually, I never did see the cardio about this, he and my PCP just talked and agreed I should just keep my BP down and get an annual CT to watch for any growth. I guess they have reassurance (false reassurance?) from the fact that it hasn't grown since 2006 or earlier.

There are plenty of nursing jobs that don't require regular heavy lifting. And nurse practitioners have other people to do the lifting for them. It's a good job to grow old in!

--Equusz

 

[DavesMom]

Welcome to the forum! You will find loads of wonderful people and information here.

I also have a 4.5 aneurysm of the ascending aorta that hasn't changed since it was discovered two years ago. Like you, I get pains in the chest/shoulder blade area. I do a lot of walking for exercise so have always chalked it up to muscular pain and/or poor posture.

My cardio also seems pretty nonchalant about the aneurysm. I was never told to limit lifting but I believe I've read on this site that over 20 lbs. should be avoided. The heaviest things I lift are cases of bottled water and big ol' bags of cat litter so I don't think I have to worry.

I totally understand your concern about being in a rural area because I also live in a small town, work in an even smaller town, and shudder to think of what would happen in an emergency. I've already been through two surgeries and a third would be risky due to scar tissue build up.

I'm on Coreg and my BP is sometimes in the 115-120s but often in the 130s to the mid 140s even when relaxing at home. I made the mistake of taking it during a break at work last week and it was 173/92.

So I can certainly sympathize with your situation but it sounds like you're doing all the right things to deal with it.

Take care and keep us updated.

Cheers,
Michelle

 

[Equusz]

Hi Michelle:

I'm thinking of trying a Catapres patch to avoid BP spikes like that during the day. I'll talk to my doc about it.

What other surgeries did you have? Were they aneurysms too?

 

[Equusz]

Deleted - duplicate post (dumb net connection).

 

[Lynlw]

Hi Michelle:

I'm thinking of trying a Catapres patch to avoid BP spikes like that during the day. I'll talk to my doc about it.

What other surgeries did you have? Were they aneurysms too?

IF you click on someones name and read their "about me page" alot of time it will have their info, surgeries ect there

 

[DavesMom]

Hi again,

I had aortic valve repair when I was 19 and aortic valve replacement/aneurysm repair in 1999 at age 42. The aneurysm wasn't at a critical point but the surgeon repaired it anyway since he was working on the valve.

I've not heard of the Catapres patch. I'll have to look that up.

Take care!

Cheers,
Michelle

 

[Equusz]

Michelle: It's transdermal Clonidine, a weekly patch. It comes in various doses and works pretty well, I've heard.

So you had one aneurysm repaired and then another one showed up? What a rough go.

I've got to find out more about the state of mine. I really wish I'd had some kind of chest scan before 2006, but there was never any need for one. I mean, if my aorta's been 4.5cm for 15 years then I could breathe a bit easier. I think.

--Equusz

 

[Plumber1]

Equusz,

Perhaps some of my story will be helpful: The dimension of my aortic artery was similar to yours. Since my youth, the aortic valve had always had some regurgitation. After my 50th birthday I went in for cardiac exams every 6 months.

At 52, my cardiologist called me in to say that my aortic valve was working better than he had ever seen (we had been together 12 years, which is a real bonus to have this established history), and I thought this was perhaps good news, like some clean-living had finally paid off. Not so.

The aortic artery was beginning to balloon and it had altered the function of the aortic valve, which turned out to be a tricky little indicator for something bigger going on. We scheduled the surgery for valve and artery replacement and it all turned out very well.

Mark

 

[ccummins]

Hello and welcome!! Just to share my experience. About 3 years ago, my cardio found that I had about a 4.7cm ascending aorta. Like you, he said not to worry that perhaps it had been that large for many years and it just wasn't detected. From there, I got an MRI every 6 months to monitor it. Early this year, it had grown to 5cm. I scheduled surgery soon after. This plan of a 6 month MRI worked for me. I was hopeful as I am sure you are that it would never get any larger. Even at 5cm, my surgeon said that I could schedule surgery to my convenience. I couldn't imagine putting it off though as the wait is the worst part! You sound so well informed which is great. Do what you think is best is all I can advise.

 

[Equusz]

Thanks for your input, Plumber and Cheryl. This is helping me out muchly!

(Although I'm still having trouble sleeping when the lights go out and I'm alone.) :/

 

[DavesMom]

Michelle: It's transdermal Clonidine, a weekly patch. It comes in various doses and works pretty well, I've heard.

So you had one aneurysm repaired and then another one showed up? What a rough go.

I've got to find out more about the state of mine. I really wish I'd had some kind of chest scan before 2006, but there was never any need for one. I mean, if my aorta's been 4.5cm for 15 years then I could breathe a bit easier. I think.

--Equusz

Yup, this is aneurysm numero dos. : ) The CT scan also showed aneurysmal dilation of the braciocephalic and left common carotid arteries.

Actually, I consider myself fairly lucky - both surgeries went off without a hitch and there are lots of people who've had a rougher road.

Interesting point you bring up about not knowing how long the aneurysm has been there and been stable. My current aneurysm wasn't there in '99 and first noted in 2008, so in nine years it progressed to 4.5. I'd love to know exactly how long it's been at that measurement and whether that's considered a relatively slow rate of progress. Could it actually stay at 4.5 for ten to twenty more years? Hmmm....

Hope everyone is well.

Cheers,
Michelle

 

[Star54]

I found out about mine by accident on 6/9/09. 5cm, on 7/30 had surgery. Do not know how long it was there, nothing to compare it to. The stress and anxiety of knowing it could blow at anytime was the key to my decision. When they went in they found it was dissecting....
Life is stressful enough...numbers and measurements and waiting, (for me)was not going to make me sleep, as you said, alone when the lights are out.
For me it was very basic...I wanted it gone the same day they told me.
Wishing you luck with whatever, decision you decide to make.

 

[Equusz]

Hi Star, thanks for sharing.

They couldn't tell your aneurysm was dissecting when they found it at first? Or it started to dissect somewhere between detection and surgery?

 

[MrP]

I'd go with Stanford's advice. You definitely don't want to rush into this surgery, and real recovery time is much longer than 3 months even in a very healthy individual, although you will be able to work. My experience was that it took at least a year before beginning to feel really and truly more closer to normal. There are also unpredictable emotional and psychological impacts one can't really begin to anticipate or appreciate ahead of time. And at your age, valve replacement with a mechanical valve would be recommended and entail life-long coumadin treatment.

If you are a BAV patient, then your aorta will be larger than the normal population but this does not necessarily mean you're at risk of disection or rupture. Depending upon which two leaflets are fused out of three distinct possibilities, only one possibility is at higher risk of aneursymal dilatation. If your regurgitation becomes moderate to severe, then you may start experiencing chest pain symptoms, as well as shortness of breath. If your ascending aorta starts to grow, you may begin to experience sharp chest pains intermittently as a result of stretching of the aortic media. These sharp pains will only last seconds and will not be positional and will not necessarily be experienced during or after exertion. They will be unlike any pains associated with your condition that you've learned to accept as just *is*.

You should avoid heavy weight lifting and continue to keep your bp under control.

All my best,
MrP

 

[skeptic49]

As far as lifting, I was told not to lift more than 1/2 of my lean body weight...in my case that would be 95 lbs.

Jim