Bicuspid Aortic Valve and Ascending Aortic Aneurysm--When to operate

[PJmomrunner]

I am female 42, 5' 10", 153 lbs, active, very nearsighted, w/ history of pos lupus anticoagulant, "mild to moderately" leaky bicuspid aortic valve (II or III/VI) with insig. stenosis, an ascending aortic aneurysm of 4.5 to 4.8cm proximal to the arch, with a "bovine arch" (innominate and left common carotid originate together), have labile hypertension under control with 50 mg. Toprol.  Mildly symptomatic at most--mildly winded and see a star or two when climbing stairs sometimes.  Have been advised to stop running 3-4 miles daily and walk instead, stop lifting =<30lbs.  Have seen 2 cardiologists and 2 surgeons.  All advise watching aneurysm growth/leakiness every 6 months--only one (surgeon I trust) advised no running, keep diary of symptoms, take blood pressure--if you can't comply, schedule surgery.  I scheduled surgery.  1 cardiologist says "dilation of AA is a compensatory mechanism" and that he has "seen aneurysms assoc. w/bicuspid valves remain stable for 10 or 12 years.  Don't operate yet.  Trust your doctors."  I'd like to trust, but only sure 1 surgeon fully understands sit'n.  ?s: What are criteria for operating given my stats?  Do aneurysms assoc. w/BAV's have known growth rate?  What size is avg. at dissection?  Marfan Foundation says BAV w/ Aneurysm is related to MFS--is this widely known/accepted? Surgeon recommends bio valve w/ replacement in 10 to 15 yrs percutaneously--please weigh-in on that.  Will have repeat CT (3 mos)my request, planning to put off scheduled surgery if no growth--make sense?  Genetic testing scheduled 5 days prior to surgery--useful? TY

[Cleveland Clinic]

Thanks for the post.

What are criteria for operating given my stats? Do aneurysms assoc. w/BAV's have known growth rate?

generally we follow the size and rate of expansion.  Some anuerysms can remian stable for many years or indefinitely.  However, if we see a change in a short period of time, it lowers our threshold to recommend surgery.

What size is avg. at dissection?

It depends, generally under 4 cm the risk is eseentially zero.  4-6 cm it increases mild to moderately. Above 6 the risk is very high.

Marfan Foundation says BAV w/ Aneurysm is related to MFS--is this widely known/accepted?

Marfan syndrome is a constellation of clinical features. Anuerysm is more common then bicuspid aortic valve. There are other manifestations that must be present to be Marfan.  The entity of bicuspid valve and aortic anuerys is more common on its own then with Marfan.

Surgeon recommends bio valve w/ replacement in 10 to 15 yrs percutaneously--please weigh-in on that.

Will have repeat CT (3 mos)my request, planning to put off scheduled surgery if no growth--make sense?

Sounds like the routine practice.  Percutaneous valves are at leat 5-10 years away for standard use.


Genetic testing scheduled 5 days prior to surgery--useful?

There are no standard genetic test for this enetity. Im not sure what they would be looking for.


hope this is a start

good luck

[Jjc2005]

This is just an interesting coincidence.  I have been trying for a while to post questions on aortic aneurysm of the ascending aorta and now two of us have similar questions.  Hopefully we can stir more feedback on this issue. I find it frustrating that so little is published about what to do BEFORE you end up in emergency surgery or worse.

I have been genetically tested and our family has no Marfan's or Ehlers-danlos so we have been categorized in the FAA (Familial Aortic Aneurysm) group, and my DNA has been sent to research centers at Cornell and the University of Texas.  I have urged member of my family to be tested.  Some have and two more dilations have shown up in males in their forties, but the younger ones seem OK so far.

Since my dilation is still considered so small at 4.1 cm, surgery is not recommended but then I got my sister's medical records and learned she dissected and died at only 4.5 cm,  so it has given me much to think about.  

I hope we both get some answers.

Judy

[I'mallheart]

no any other symtoms? for this.. should i be considered i am 28 male.. non smoker..35 pounds overweight..i take 25mg of atenolol for anxiety/tachycardia.. been having bad episodes of palps/pvc's this week..also i can see my tummy pulsate..to my heart beat.. its wierd..anything i should do.. today was really bad start..we lying there and heart was not fast but irregular..fliping around..i took my atenolol..still was doing it..went to take a bath to relax still doing it, pulse went up a bit also..by the time i was dont in the bath it was feeling better.. i just think that there must be an underlying issue somewhere..the docs missed it cause i am young..well MVP.. heart disease run in the fam. even had a cousin of my moms die of heart exploding..one my cousins has to get cardioverted to get a sinus rythem.. should i seek more answers.. i know i have anxiety but anyone would when you get symtoms and its from your heart..
well hope is all good
ive done event.holter..echo..ekg..ultrasound on belly and all came with the normals they day..blood preasue is 100-60 sometime 90-48....fainty at times..cholesterol okay, wxcept good is like 30..run in the familiy i guess
thyroid check okay..

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