Bicuspid Aortic Valve with Regurg question

[emtkyle]

I am a 31 year old male, with a history of HTN for which I take Lisinopril 10mg every day and that controls my BP nicely. No other major illnesses, and no strong family history other than HTN and strokes (grandparents). I just had a physical and my internist heard a click, he sent me for an echo and found that I have a Bicuspid aortic valve. Here is the rest of the echo results:
LVEF 50-60%
Mild aortic root dilation 3.8 CM
BAV mild regurg
Mitral valves thickened but open well, trace MR
Mild TR
Mild Pulmonic Regurg
My dr consulted with a cardiologist who recommended re echo in 3 years and also SBE prophylaxis.  I have a friend who works for another cardiology office (a different one than who my internist consulted) and they recommend repeat echo every year, and when the aortic root dilates greater than 4 to have echos every 6 months.
What follow up would be appropriate, in one or three years? Also, I asked my internist at what point would I need to see a cardiologist and he said maybe never.  This concerns me a little and kindof feel that a cardiologist should follow this but I really have no reason so far not to trust my internist.  How common is it for the aortic root to dilate more? What is the normal measurements for the aortic root? What is the reason for me having all this regurg at age 31? Anything else you can recommend that I about my condition. I dont feel that Ive gotten much education and Im almost afraid to do anything like exercise, etc for fear that I amy rupture my aorta...I really appreciate your advice and answers to my questions!

[kbr56]

hey im only 19 years old i never had anything wrong with me but few mouths ago i found out that i have a bicuspid aortic valve disorder and i have a heart muror. already sometimes i black out with i stretch out and yawn. and sometimes i have chest pains. i wanna know how bad is my problem that this **** happening to me. i used to take ripped fuel with edpdimen in it when i was like 17. i wondering if that cause my heart problem or its something that i was born with. please anyone get back to me on this and email ur information to ***@****.

[LukeL]

No need for that, I was just wondering if you were aware of such an operation. I do know that the Ross Procecudre is very delicate and only a handful of doctors know how to do it or would even attempt it.

[francie12]

Hi, Lance--We found out about my son's BAV/regurg./dilated aorta when his pediatrician heard a loud murmer and sent us for an echocardiogram.  I understand your concerns because this can run in families--and we have a 10 yr. old younger son, yet to be tested.  The problem with getting family members screened is that in the absence of a murmer or any other symptoms (you can definately have a BAV or dilated aorta without symptoms)many insurance companies will not pay.  And it's extremely expensive without insurance.  There has been a lively thread going on recently about this subject on www.valvereplacement.com.  You can search for it with the words Kids and BAVD.  I really recommend this site.   It has been of immense benefit to us.  Good luck to all our BAV friends!

[francie12]

Hi, Luke--Yes, I should have been more clear.  The Ross procedure does use the patient's own pulmonary valve, put into the aortic position.  With luck and a very experienced surgeon it can be long-lasting and many people, though not all it seems, have been very happy with it.  What I was actually referring to in my original response, though, was some research I've read about done in England.  The idea is to use a matrix of some kind of inert material and actually grow the patient's own cells onto it to produce something similar to one's own valve.  I'm very sorry not to be able to give you a reference to read more about it.  Maybe someone could tell us all where to look.  I know that an AV replacement was done not too long ago via catheter on a man in his seventies who was not a candidate for OHS.  He was back to work in a few days.  One way to be in touch with recent research is to visit www.valvereplacement.com.  It's an incredible site.

[pbanders]

I think you're referring to the Ross Procedure (Arnold the
Governator had one of these in '97). My surgeon told me that there is a very high re-do rate with the Ross Procedure, and I believe Arnold had to have his redone.

[lance1881]

How did you find out about your son's problem?  I have a dilated aortic root and have 8 year old and 4 year old sons.  I don't have Marfans' but wasn't sure if I should have them tested for the same problem.

[LukeL]

I was under the impression they can take a valve from a pulmonary artery and graft it to replace the aortic valve? Or even use donor valves?

[francie12]

My thirteen year old son is in almost precisely the same situation as you--BAV, regurg., dilated aorta--only his regurgitation is considered moderate rather than mild.  His cardiologist has given him no restrictions on his physical exercise with the exception of weight lifting/isometric excerise.  I specifically asked about soccer, basketball, even track and was given the green light.  Of course we are alert to recognize any symptoms that could possibly occur, like SOB, light headedness,fainting, etc.  So far, so good.  We've known about this for a year and a half now.  His first follow-up echo was at six months, now we are on yearly.  There has been some progression in the size of the dilated aorta--they intend to do an MRA, probably next summer to determine the extent of the dilated area.  All this was a shock at first (as I'm sure you well understand!) but I've found that being as well informed as possible gives some sense of control and brings back some balance.  The advances in this field are very rapid--I'm hoping that by the time my son needs surgery they'll be able to do it by catheter and use an aortic valve replacement out of his own tissue!! (This is down the road, of course!)  Good luck to you and all the best.

[LukeL]

You should also remember that a bicuspid aortic valve is a realtivly common disorder and usually not a cause of concern. It seems you are already taking the correct measures so you are on the right track.

Here is an article that may help you it is written for doctors article but still an easy read: http://www.emedicine.com/ped/topic2486.htm

[Gaspipe]

Hi your aorta is not going to rupture. Control your risk factors and excercise regularly and in moderation. Get regular checks and periodic tests per your cardiologist ( whom you must have confidence in ) Enjoy your life and don't listen to too much "free advice" ... you get what you pay for!!   I remain Gaspipe

[Cleveland Clinic]

emtkyle,

thanks for the post.

The regurgitation you mention isnt out of the normal range for patients, even with normal valves and I wouldnt think too much of it.

The general thought with respect to the Bicsupid valve generally depends on how much stenosis/regurgitation there is and any other medical conditions that may exist with it.  Without significant stenosis, then a yearly physical is probably reasonable for followup. The frequency of echocardiography is a little more tricky but generally with mild stenosis and aortic dilitation a repeat echo in 3-5 years is reasonable. Sometimes, I will get a repeat sooner and if stable from the previous echo -- feel more comfortable with waiting to repeat.  Certainly if you develop any symptoms repeat testing would be indicated.

The aortic root dilitation is a common finding in BaV and is probably related to the whole condition.

It is reasonable to see a cardiologist to help manage your BaV. It sounds like you have  agreat internist whom you trust. I would discuss with your cardiologist if he/she is comfortable with your followup along with the internist.

good luck