Last week, I had a transesophageal echocardiogram (TEE) to get more data on my severe aortic valve stenosis. (Which was originally detected as a heart murmur.)
The area of the valve opening is 1/4 the normal size. The velocity of blood through the narrowed valve is 4 times normal and the mean pressure gradient is 4 times higher than normal. This impinges on the aorta which has been enlarged as a result.
Up to this point the treatment is clear: TAVR (transcatheter aortic valve replacement), a relatively low-invasive technique which threads a large stent into the valve opening, crushing the original valve leaflets against the walls of the valve. The stent stays put by pressure against the wall of the valve. (The operating new valve itself is either animal based or mechanical.) A friend of mine had this about a month ago and spent 1 night in the hospital.
The alternative is old-fashioned open heart surgery which is a huge operation with lots of pain and many weeks of recovery time. No thanks, this is 2024, let’s do modern. Right?
Maybe not so right.
Due to a congenital abnormality present in 1 - 2% of the population, my aortic valve is bicuspid instead of tricuspid. It is also severely calcified and stiffened. This could make it hard for the stent to fit snugly against the wall of the valve. Blood could flow around the outside of the stent (paravalvular leakage or PVL, which is correlated with higher death rates).
There are several brands of valves, one of which has a skirt to block PVL. There’s no data on the long-term operation of any of these valves placed by TAVR in bicuspid cases, much less highly calcified bicuspid cases.
The calcified bicuspid valve wouldn’t be a problem with open heart surgery since the valve would be cut out instead of crushed by the new valve.
I will be meeting with my cardiologist within the next couple of weeks to discuss the situation. Meanwhile I’m on a beta blocker with instructions to keep my heart rate under 120 when I work out.
Almost a year ago I had a mitral valve repair, which cannot be done through the arteries. So open heart it was. I was lucky, the sternum was not broken and I have a scar between two ribs instead. That helped a lot with recovery and pain.
Good thing this was caught. Bad heart valves tend to turn into serious emergencies if not remedied.
Do they still crack the sternum and open up the whole ribcage? Or do they make a small hole or two between ribs and get inside with tools that can do so?
Swedish Hospital in Seattle has surgeons who can do minimally invasive heart surgery. But it’s not clear to me whether that would apply to my specific situation.
Wendy
For what it’s worth, my mother had aortic stenosis with a similar level of blockage and had a successful mechanical valve replacement.
Good luck with whichever treatment you choose.
Years ago, there was a series on PBS “The Body In Question”. Each episode focused on a particular system.
One of the episodes was a valve replacement on an elderly woman. When they opened her up, the doc showed how the valve was so covered in calcium that it didn’t really function at all. He broke a chunk of calcium off of the valve, showed it to the camera, and said something along the line of “that could have broken off and caused a stroke at any time”.
After cutting out the old valve, a nurse brought over a set of plug gauges: plastic discs with handles on them. The doc tried one, didn’t quite like the fit. Tried another gauge. Fit better. Said to the nurse “a number 11” or whatever the size was. Sewed the valve in place, and started closing everything up.
The doc made a post-op house call to the woman. Said she looked worlds better, and she felt great. She did say that, at night, when it’s quiet, she could hear the valve clicking.
Fans of “Masterpiece Theater” may recognize this woman, Darlene Shiley. Her late husband, Donald Shiley, was co-inventor of the Björk–Shiley heart valve. Manufacturer of the valve, Shiley Laboratories, was bought out by Pfizer. Pfizer did what “JCs” do, changed the design to make the valve cheaper to produce. In the 90s, Pfizer settled with the heirs of the affected valve recipients.
Aah. That’s a bummer. Actually, per the ultrasounds done pre op on my husband, it was deemed he had a bicuspid aortic valve. My daughter was certain he did not. Although she hadn’t captured any images of the third leaflet using just her cellphone and her portable ultrasound, she was certain she’d seen it imaged. She also thought the aorta was already dissecting but no one else did. Until the path report on the disseacted organs. She’d been right on both counts!
First heard of this organisation a few years back on the old Running Fools board. One of the Old Lags…Instride/Bob Chasen…found himself suddenly in that category. A routine physical with detection of a heart murmer of recent onset…and 2 weeks later, open heart surgery with new aortic valve and ascending aorta. The same issue as my husband…a previously undiagnosed congenital condition and he actually did have a bicuspid aortic valve. This was a while before my husband went off his legs, but I found the thread and bumped it with a “you’ll never guess what’s happened…” when he did.
Bob was quite a big name on the New England running scene so already knew who he was, but when I mentioned this he suggested the Cardiac Athletes book series by Lars Andrews…and telling me which was “his” chapter.
Sounds like you have a very detailed understanding of your situation and will be able to make the best decision for yourself with your cardiologist when you talk with him. I wish you all the best. It can only be a plus that going into this you have kept yourself in such good shape with your commitment to exercise.
Symptoms: Heart murmur. Reduced exercise tolerance. No chest pain, dizziness or shortness of breath while exercising.
Current treatment: Metoprolol ER, 12.5 mg, Rosuvastatin 10 mg. Aerobic exercise 5 X per week while monitoring pulse to maintain under 110 bpm. Walk 7 days a week.
Summary: Transesophageal Echocardiogram (TEE):
Severe aortic stenosis. High pressure which can damage the ventricle and high velocity which has already enlarged the aorta.
Moderately to severely calcified functional bicuspid aortic valve with restricted cusp motion. (The earlier Echocardiogram found a tricuspid aortic valve so this is a discrepancy.)
Dilated sinus of Valsalva and ascending aorta. Dilated ascending aorta (4.4 cm) noted from previous echocardiogram. Surgical repair recommended at 4.5 cm or above.
Mild to moderate eccentric aortic insufficiency.
Conclusion:
TAVR (transcatheter aortic valve replacement) is superior to SAVR (surgical aortic valve replacement, an open-heart surgery) in many ways. Unfortunately, it’s not clear whether TAVR would work for me. A severely calcified bicuspid aortic valve has been associated with higher leakage around the implanted valve and higher mortality after TAVR. Also, my dilated ascending aorta is on the borderline of needing surgical repair. This may force me to have open-heart surgery which I would rather avoid.
Aortic Stenosis Grades of Severity as Assessed Using Echocardiography
Looks like you’re in a similar situation to my daughter with that ascending aorta…close to the “time for surgery” point but not quite. After dh’s surgery, it was recommended to screen any close relatives to include genetic testing also (which was inconclusive at this point…5 years might change that) The echo was not, so she also became a card carrying member of the U of Colorado’s Big Aorta Club for those with similar aortopathies. She had her 5 year follow up screening recently and, thankfully no change. Her BP was on the high side, though…no surprise given the toss pot’s shenanigans with this divorce…so she’s started on metoprolol also. I surely hope neither one of you needs a full Bentall type reconstruction…that’ll be no fun.
Here’s the weird thing about serendipitous findings (my ASCVD, your severe aortic stenosis, dh’s and dau’s aortopathy) and the how come no one found it sooner etc. Although my daughter was the one who raised the alarm with her fancy new portable equipment, she’d tested/played with it when she first got it. First on Rose, the Basenji with the severe VSD and pulmonary hypertension, the two other normal dogs, the baby, me, probably the foetid lump of foul deformity…but not herself or daddy. Now, how weird is that…missed the two folk where there would’ve been some diagnostic merit. That’s Life, I guess.
