Concerned

I have Bicusbid aortic valve and sometimes my chest will hurt when I am laying on my side and my left arm will hurt. Can you tell me why?

[Jack54]

You have a very serious condition. You need to schedule an appointment with your cardiologist ASAP and have an echocardiogram done, at the very least.

You could have coarctation of the aorta, aortic valve stenosis, orhypoplastic left heart syndrome according to what I have read. The information below came from the AHA.

There are many reasons why you might feel this pain, due to having a bicuspid aortic valve. There are many complications associated with having a bicuspid valve.  

Cystic medial necrosis of the aorta is just one. (necrosis is dead tissue) Another is that you are also at a much greater risk for the development of endocarditis. The heart also frequently "refers" pain to the left arm. This could be an emergency. I am not a doctor. I have just studied the "bicuspid valve" for another member before.

The actor J. Ritter died instantly of aortic dissection. The "discharge pipe" (the aorta) of your heart tears, splits or ruptures and blood is pumped into your thoracic cavity, instead of to your brain and other organs.

Good luck and explain this pain to your doctor soon. This condition runs in families or is inherited, as I have read

Jack
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"The tissue abnormality in patients with a bicuspid aortic valve is not confined to the valve leaflets; you are at increased risk of aortic aneurysm and dissection.

At the tissue level, the aorta shows cystic medial necrosis, loss of elastic fibers, increased apoptosis, and altered smooth muscle cell alignment. The risk of aortic dissection in patients with a bicuspid valve is 5 to 9 times higher than in the general population."

http://circ.ahajournals.org/cgi/content/full/circulationaha;111/7/832

[Momto3]

Have you had a recent echocardiogram to follow up on the BAV?  Do you only have the discomfort when you are lying down?  Why not give your doctor's office a call to let them know about the new chest and arm discomfort.  Anytime you have a change in symptoms, it is a good idea to follow up with a physician.

Also, there is a website for people interested in valve disorders, surgery, treatments, etc.  Search for valve replacements and it should come up.  There are many people on the forum with BAV.

If you continue to have the discomfort, do not hesitate to have it checked out.

[lucasfamily]

I not have discomfort I have pain in my chest and left arm. I do this every few months. I haven't had a check up in about 2 or 3 years. Several years ago a doctor told me that it was fluid around my heart when it did that he gave me antibiotics and sent me home.

[Salyna]

I was drawn to this post because I too am looking for information on BAV.  I posted a few days ago looking for info, but no responses.  My son is 16 months old and during a regular check-up, the doctor detected a murmur.  They did an echo and discovered this.  I was given the results by the dr. over the phone.  I was caught off guard and didn't have time to come up with the right questions.  The short of it was that at this time, my son is fine, nothing to worry about, no signs to look for.  If you could give me any more knowledge on this, it would be greatly appreciated.  I've done a lot of research online.  thanks!

[Momto3]

Sorry we missed your post : (

I sent you a private message.  Sounds like your baby is in good hands and that you have no worries.  Hopefully, he'll go through life with no complications from the valve and it will just be part of his uniqueness.

Take care.

[Momto3]

It would be a good idea to follow up with your cardio. Since it's been awhile and you have new symptoms, it's a good time to get a current echo.  Let us know what you find out.  Take care.

[Jack54]

There is no reason for me telling you this, but I wrote you a very long post that vanished. I just do not have the energy to redo the post but you need to really google this condition. It is not an innocent condition.

Jack

[Salyna]

Thank you both!  I'll have to check my messages.  Jack, thanks for your input.  I have goodled it and I'm confused (mixed info. I'm getting).  I scheduled a conference call today with the pediatrician and the cardiologist.  I think I'm one of those annoying parents to these drs., but I insist on getting the right information on this.  Thank you both for your concern!!!

[Jack54]

Don't worry about annoying the dang doctors! Just keep being proactive as you are now. Your precious child's health is YOUR responsibility. Just like I am responsible for my own health, not any of my doctors.

Also know that the majority of doctors, especially cardiologist will withhold information from you. They know that in many cases it will make the patient worse if they know the truth. So, they do there very best to treat your condition with every possible thing they know or can find out, but know that patients cannot handle the truth without it affecting their health.

The reason that I know this is I have obtained all of my cardiac records since having a heart attack and stroke in June of 2003. There is so much written down that was never mentioned to me.

Your child probably has nothing to worry about but at some point he will more than likely need attention to this problem. I have read about this condition many times, and yes the info out there is a bit confusing, but you must read loads of doctor's opinions and over quite some time, make your own conclusions.

As your son grows you can be prepared for any emergency. Before he participates in any sport, I would see the cardiologist and have an echocardiogram performed and his situation evaluated.

My best to you and your child,

Jack

[Momto3]

Jack's right, do NOT worry about being "one of those parents."  You are your son's best advocate and there is no such thing as too many questions, so don't worry about wanting more answers and information.

You will find a vast amount of information on the valve disorder.  What's important is to work with your childs' doctors and stay tuned in to any new or changing symptoms.  

I hope your call to the doctor was helpful.

Take care.

connie