Bicuspid questions

[Jay]

Hi everyone, I stumbled on this webite about a week ago and all of you seem to have a vast amount of experience on what I am about to encounter. I was first diagnosed with Wolf Parkinsons White disease about 2 months ago. WPW is a type of tacchacardia with an extra passage way in your heart tissues. I underwent cathater ablation for this, and my cardio recomended I get an echo before the ablation. Im sure glad he did because that is where he found the bicuspid aortic valve. Im regurgitating at a 3 out of 4 now and my EF is 45. My cardio also said left ventricle is larger than it shoold be (sorry I dont know any of the other figures but I will find out.) Just within the last week I have been a lot more tired, more pain in and around the heart area every day now. I also am now getting really light headed/dizzy when I get up from a laying or reclining position. Just wondering if anyone out there had these same type sympyoms all of a sudden. Oh by the way sorry about my manners. Im 34 and not overweight and was in great shape until I had 2 back surgeries this Feb.(one for a spinal fusion and the second for a spinal fluid leak.) Im still in rehab for my back and HOPE to return to work around the end of August. Thanks for listening everyone, an sorry I rambled on. Jay

 

[Ross]

Hi Jay and welcome to the forums.

While I didn't have a bicuspid, I can say that the symptoms can come on suddenly, though usually it's progressive. Sometimes it progresses so slow that you don't know your in danger. Have they recommended a consult with a surgeon yet? I think that is in you best interest at this point. Once the ventricle starts enlarging, it's time to take action.

P.S. You aren't rambling. Even if you were, so what.

 

[ALCapshaw2]

Your symptoms are of concern Jay.

I second Ross's recommendation that you consult a Surgeon for his opinion. Surgeon's like to operate BEFORE there is any permanent heart muscle damage whereas many cardiologists seem to prefer to wait till the 'last moment'. I side with the surgeons on this issue!

'AL'

 

[MichyB]

HI ... I am new too so the more senior members will be able to offer you more info. Where do you live? I'd ask around on here for recommendations for surgeons in your area and make an appointment asap.

 

[Nan]

Hi, and welcome. I didn't have a bi-cuspid either, but my symptoms did come on rather suddenly...I call it my "valve attack". One day going into my office I felt dizzy, like I was going to pass out and short of breath and naseous and clammy. I was being treated for asthma for my complaints of breathing difficulties! This turned out to be a stenotic valve!

Good luck to you, and I second (third or fourth?) the others in getting a surgical opinion.

 

[Bryan B]

Jay,

I think what you are experiencing is what has happened to many of us. In my case I was experiencing many of the symptoms you mentioned but didn't attribute it to my heart condition. Once I found out that I needed surgery I became more "attuned" to the symptoms that I was having all along.

I agree with the others, once the the left ventricle reaches upper limits of normal (or higher) it's time to consult a surgeon.

 

[Marguerite53]

Welcome!

Welcome!

Jay, welcome to this wonderful place! Do not ever worry about rambling. Everyone here is happy to listen. The more info you give, the more people will be able to respond.

Like you, I have a bicuspic valve. I'm 50 and have known about mine since my 20's. Now it is becoming increasingly stenotic and I am mildly symptomatic. You sound quite symptomatic, so please heed the advise of others and consult with a surgeon as soon as possible.

Keep reading and asking questions here. You will have much to digest and important choices to make. Experienced people here will help.

Good luck and keep posting!

Marguerite

 

[Susan BAV]

Hi Jay -

Be sure and read the VR.COM members' stories, where you will likely find some more very helpful information. One of the things that my prior (and inefficient) cardiologist asked me, pre-op, was if I had ever passed out. I hadn't; although, as I became progressively ill, I felt like I was on the verge of passing out many times. Perhaps because I hadn't passed out, the cardiologist dismissed my other very strong symptoms, including SOB (shortness of breath) and angina. When my husband and I researched bicuspids, however, we read that sometimes the first time that a person with a failing bicuspid passes out is when they expire . We searched out more knowledgable physicians. I feel like a new person now. I had no idea that I was so ill before. A lot of it happened very gradually. Best wishes to you and I'm very glad you found this site!

 

[Arlyss]

Bicuspid Aortic Valve Disease

Bicuspid Aortic Valve Disease

Dear Jay,

You remind me a little of someone I know well, someone bicuspid who also had Wolf Parkinsons White and other "electrical" issues with the heart.....someone whose first cardiac symtoms began when young.... someone strong and athletic..... whose bicuspid valve leaks (different from you, the leakage is quite mild at this point) and whose aorta is enlarged and being carefully watched.....someone who had surgery for a brain aneurysm earlier this year, and is doing very well!

I know someone else who has had two back surgeries at a fairly young age, the most recent one involved putting in artifical discs.....someone else with scoliosis ..... both are people with bicuspid valves and an aortic aneurysm.

I don't want to overly alarm you or others, but it is important to know that there are reasons for the emerging thought that bicuspid aortic valve disease can be viewed as a connective tissue disorder that may affect various areas of the body. Until there is more research, we will not know exactly what is happening and why. But, after observing what happens to some (certainly not all) bicuspids, I am firmly convinced that there is more to this story.

Along with your valve, it is very important that you have your aorta accurately measured, as all bicuspids should, especially because you are young and have aortic regurgitation. I will share the link to this paper from the U of Toronto here. It might be helpful to review this with anyone who may not understand why there is a concern about your aorta.
http://circ.ahajournals.org/cgi/content/full/106/8/900?eaf

I also will share my husband's story here. The last part of it refers to other bicuspids, including the "someone" I mentioned above.
http://www.westga.edu/~wmaples/velebir_arlys.html

Please feel free to email me.

Best Wishes,
Arlyss

 

[epstns]

Hi Jay, and welcome to The Waiting Room -- the virtual waiting area for those of us who know we will sometime need valve surgery but haven't reached that time yet.

I'm a bit older than you (56) and was diagnosed with moderate aortic stenosis about 2 years ago. Last year, with a change in cardiologists, we discerned on an echo a "probable" bicuspid valve. Cardio says that the bicuspid valve is the most probable reason for stenosis at my "young" age, that the other type of AS, senescent (sp?) stenosis usually won't show even a murmur until an age more advanced than mid 50's.

So far, I'm asymptomatic. We're just keeping a sharp eye out for any symptoms or any changes in the echo results. It sounds like you have some suspicious things happening, things that sound like "symptoms" to me -- and the surgeons are usually called in when these symptoms occur. I would think that if your cardiologist does not immediately recommend a consult with a surgeon that you arrange such a meeting yourself (unless your insurance won't allow it, in which case I would seek a second cardio opinion and ask for the surgeon referral).

As the others have said, if you're feeling ANY symptoms, be very careful and try to at least get into the surgical evaluation process soon.

Not trying to scare you, just being realistic. Welcome to the best place to get the answers -- we know you have lots of questions.

 

[Jay]

Thanks for all of your thoughts and info everyone. I just found out im getting a stress echo in 4 weeks. I very anxious to see whats going on. Im definately going to have my cardio refer me to a suregon either at Riverside in Columbus(where I had my ablation) Cleveland Clinic or U of Michigan since I am within 2 to 3 hours from them all. Do any of you have any comments or experiences with those hospitals that preform AVR. Thanks, Jay

 

[ALCapshaw2]

The Cleveland Clinic is the #1 rated Heart Hospital.
Surprisingly, Beaumont Hospital in Royal Oak seems to do more Heart Surgeries than U of M and has a higher rating.

Check the USNews Hospital Rating list. The link may be in the Reference section, or do a search on USNews.

'AL' (Go Blue!)