Herb's Heart Valve Journal

I'm now on the three-month plan for scans/imaging for my bicuspid AVR/aneurysm, which has hit that gray area. The overall view from my scan of last week: No change, with a few slight improvements. This was with the top cardiac stenographer at Scripps and it was without question the most thorough echo I have had in the 40 years I have been getting echos. Result: Left ventricle function still good; ascending aorta is stable at 4.9cm. (Cleveland cuts at 5.) Next stop: An MRA w/o contrast in June, to get a clearer view of the AA. (They have ONE specific machine they use for those scans) Will decide then whether to schedule a visit later in the year with Dr. Svennson at CC, per his recommendation, or continue to wait.

It has been awhile since I have written, having been hanging out in the waiting room – alternating an MRI and echo every six months. The most recent echo, in December, had the kind of change that gets your attention: My left ventricle size. I’m bicuspid with a (now) 4.9cm ascending aorta (though, if done by an MRI, it could still be 4.7cm – there seems to be a variance.) Either way, the aorta is still within the not-yet stage.

However, the big change that caught my doc’s attention was the left-ventricular ending systolic volume (LV-ESV), which has slightly exceeded the 50mm level, which puts me at Class 2a, which is technically surgical. (Or, as my cardiologists say after uttering the word “intervention” – “it’s time to start putting together a plan.”) The initial read on this past echo was very close to the alarming 60mm. But my cardiologist and the chief stenographer at Scripps both remeasured and came up with the revised, smaller measurement.

The goal, of course, is to fix this while it is still reversible and while still asymptomatic. (I can still walk straight up a half-mile long steep hill quickly without being out-of-breath. But as I’ve learned, while that’s a blessing, it’s also a curse, especially if you aren’t constantly getting rescanned. Being asymptomatic can be a false-negative.)

That gets into a highly nuanced situation of timing, with a personal twist: My daughter is getting married on June 30. What’s a father to do? (Question for all: I’m curious how long it typically takes after surgery to get up and running, if there are no serious complications. I’m considered in good health and fairly fit. I know there is no one-size-fits-all.)

My primary cardiologist’s opinion is to rescan in three three months, at which point if the LV-ESV has expanded he said he will push hard for surgery. He also explained that these measurements, as evidenced above, are highly subjective and can bounce around.

Key to me is to make sure this caught before there are symptoms and permanent damage.

After reading these forums, it is obvious that there are exceptionally great surgeons and facilities around the country, including in my own backyard. Still, given that this is not just a valve or aorta, I’d like to go someplace where they do aortas in their sleep, which is why we probably would fly to Cleveland. (Never mind that the only non-stop is on cramped Frontier or an hour-and-a-half up the road for a broader selection from LAX.)

Next step is to send my images off to CC for a review by Dr. Svensson. Last time we shot our data his way, via another cardiologist I consult with – Eric Topol, is a CC Alumnus – the view was not surgical. That was 2 ½ years ago. My how time flies!

Oddly, having been monitoring this for 40+ years, I’m very much at peace with the prospect for surgery. Certainly, more at peace than my wife! ;-)

I have done enough research and reading (personal stories on Adam’s forums have been an invaluable part of the process) to know the good, bad and ugly. Will report back and add to the experience database of this valuable feed, when I know more.

A tale some of you may find interesting: Now that I'm in the waiting room (I hope for a long time) I'm supposed to get imaged every six months, with an echo and a "scan." I have a bicuspid valve, aortic regurgitation and an enlarging ascending aorta, which at last check was around 4.5-4.6cm. The surgeon at Scripps would have preferred a CT scan but I opted for an MRA, to avoid the radiation - especially if I have to have these done fairly routinely. I have had echos for years, but ever since they discovered my enlarged ascending aorta several years ago a scan has been added to the mix. So far I've had one CT, which discovered the enlargement (at UCSD) and multiple MRAs in traditional 1.5T machines at Scripps, each MRA taking around 20-40 minutes.

Here's the interesting part: I learned Scripps had a new 3T MRI machine, so figured I would ask for that, instead. Thought it would be that much better of an image. And I'm sure it will be, but this head's up: The entire scan, on a very hard surface, took 1 and a half hours. You read that right 1 hour-30 minutes. That is a LONG time for an MRA.

I had read up on 3T machines, and from what I read I thought they would be faster. But before I got on the machine I was advised that it would be 90 minutes. Wow.

The good news: The bore is larger, nowhere near as claustrophobic. And your head is toward the opening. Bad news - that's an almost intolerable time to stay in one place, which countered the bigger bore. Even the techs agreed it's too long. Oh, and there is no music because a computerized voice gives you breathing instruction the entire time.

I just kept telling myself we'll get the best pictures, yet. We'll find out soon enough.

Hope this was helpful.

Herb

Saw surgeon Jeff Tyner today at Scripps. Very nice guy. He said his measurements were different than the radiologist on my MRA - 4.5, maybe 4.6 on the ascending aorta, NOT 4.7-4.8. That would suggest NO change over the past two years, assuming the MRA two years ago was correct. (Surgeons do NOT like MRAs.) With no known family history of bicuspid and/or aneurysm, come back in six months, get a CT scan with contrast. Into the waiting room, I go! His view was that, at the time of surgery - if my valve makes it until then - my bicuspid valve would clearly have to be replaced, as would my aortic root. Arch and onward are fine. Stressed that my adult kids really should get their valves checked. Thanks to all for listening and best wishes to those headed for surgery at this time.

First, I'd like to thank Adam for this tremendous site. I've been lurking for years. I bought your book MANY years ago.

My stats: I'm 64. In good shape. Exercise regularly. Controlled high blood pressure.

My story, bear with me: I was first diagnosed with a "murmur" in the late 1970s. Since then, I've monitored it closely over the years, with an echo (often a stress echo) annually for more than 20 years.

In most of those scans, because of my body structure, the techs had a hard time getting a clear view of my valve but I was often told have a "probable" bicuspid valve. That was confirmed with an MRA in 2005 that was conducted for something totally unrelated to my valve.

Here's the interesting part: it wasn't until a few years ago, when we moved back to San Diego - after having been gone for three years - that I learned I had an aneurism of my ascending aorta.

In the short span of time we were gone my cardiologist had retired, so I went to UCSD and saw the head of cardiology. He suggested I get a baseline reading of my aorta. I had a CT scan (without contrast, at my request) and the results came that I was the lucky holder of a 4.6cm ascending aorta.

I find it pretty remarkable that over the years nobody suggested getting a better picture of my aorta, especially given my bicuspid valve. Glad I did! And I'm grateful to the UCSD doc for suggesting it. BUT... I subsequently switched doctors because the UCSD cardiologist left it to a fellow to break the news to me, with no follow-up by the cardiologist - even after I had ticked off a list of obvious questions the fellow couldn't answer. (Told me all I needed to know about that cardiologist!)

I then consulted with Eric Topol, a pretty well-known cardiologist who had moved to the Scripps Clinic from the Cleveland Clinic a few years ago. If anybody should be arrogant and unapproachable, it's Eric. But he's not. At the time he was no longer a full-time practicing cardiologist, and suggested I shift to one. I chose Chris Suhar, who runs the Center for Integrative Medicine at Scripps, whose late father had a bicuspid valve.

Given the size of my aneurism, Chris suggested a six-month rotation for an echo and then an MRA. I had my most recent MRA a few weeks ago.

Therein lies the story, and why I'm now posting here: It showed 4.7/4.8cm. Chris, who like Eric is not an alarmist, said it's time to see a cardiologist. Eric, who has become a friend, agreed.

Which is where I am now: I'm starting with a consultation this Thursday with Jeff Tyner at Scripps. A 70-year-old friend had bypass surgery by Tyner recently and bounced back within weeks as if he had just had a tooth pulled!

Scripps is a fine facility, and probably perfect for a bypass. And I'm going in with a fairly open mind but when it comes to a bicuspid valve AND an aneurism I'm likely to be pickier.

I'm interested in surgeons who do NOTHING but hearts. And then, those who not only replace aortas, but appear to have a focus or at least a passing interest on bicuspid valves.

It has been suggested I get an opinion from Lars Svensson in Cleveland. (He did the ascending aorta replacement on someone I recently was put in touch with; this person couldn't stop raving about CC, and called it the "McDonald's of aortic surgery.") There are a few other docs and programs I've run across that are impressive.

As is often the case, the decision to travel rather than have something like this done locally is paramount. (Do I really want to sit on a plan for 4 and a half hours from Cleveland to LAX and then drive down to San Diego? There are no non-stops.) But in the end the goal is to get the very best procedure possible, with the lowest chance of complications. (I realize there's no guarantee for that anywhere, and that many people have very successful complicated surgeries in hospitals throughout this country.)

There are quite a few good options/surgeons in California. I LOVE the very concept of bicuspid valve center created at Northwestern in Chicago. One thing I like about CC is the setup for family stay next door.

I may be six months away from surgery. I a year. Two years. Or two weeks. I have no idea, and hoping it's not the latter!

I'll post updates. I find the patient stories to be very helpful. The more detail, the better. I intend to add to that conversation.

Onward...