Newly Diagnosed BAV with dilated aortic root

[caligirl]

Hello everyone, I am new here just found this forum a few days ago. I am 27 years old and newly diagnosed with BAV regurgitation and a dilated aortic root. I have been saying something is "not right" with my heart since I was a teenager. I have had a few EKG's throughout the past 7 years and have always been told I just have stress and nothing is wrong with me. Even with my 2 pregnancies I had told my OB dr that my heart felt like it was fluttering and she told me that it was a normal feeling during pregnancy. I changed jobs in August and just a few months ago bought a new insurance policy, because I had again been feeling fluttering and frequent sharp chest pains. I decided to just call a cardiologist and go in for an evaluation. I met with the cardiologist on 04/23/12 she did an exam told me she thinks what I have is benign but just to be sure she wanted me to have an echo, wear a holter monitor for 24 hours, and get some blood work. On 05/07/12 I went back to discuss the results with her. I honestly went to that appointment thinking she would tell me what all the other dr's did, I was normal and there was nothing wrong with me. She sat me down and told me that I had a congenital heart defect called bicuspid aortic valve, that it had started leaking, and my aortic root measured 4 cm on the echo, and the next step would be a CT to get the exact measurement. I was scared, I was having a hard time processing what had just been said to me. She walked out, and I was on my way confused. I called the hospital and scheduled my CT for 05/09/2012, went in had it done, and called my dr for the results over and over and she never responded. Finally 5 days later I got a call back from her MA they scheduled me for today 05/17 to go over the results they couldnt have seen me sooner because they were moving to a new office. I work in healthcare, so in the meantime I had my results faxed to my office, and am very concerned. The radiologist that wrote the report said that the exact measurement was difficult to obtain because cardiac movement made it difficult, but that the proximal ascending aorta is between 4.2 cm and possibly as much as 4.4 cm, it also said that I may possibly have a bovine arch which is really confusing. I have decided that I am not happy with this cardiologist, and her lack of follow-up. I made an appointment at Stanford for a second opinion they actually have a clinic that specializes in Aortic Disorders, and have some of the top Cardio Thoracic surgeons, from what I have heard. I am very overwhelmed, scared, confused, I have 2 small children that I am worried about. Does anyone know at what size they recommend surgery for a dilated aortic root, does the dilation mean that I have an aneurysm? My appointment at Stanford is not until 06/07/12 and I literally feel like I can not wait that long for answers. Any input would be appreciated.

 

[escargome]

Hi Caligirl, from another caligirl. First welcome. This site is the best thing since sliced bread. I don't much understand the numbers, but take heart. You have all the right in the world to be scared. Getting a second opinion is not a bad thing. If you are not comfortable with the communication you have with your present cardiologist, then by all means seek your answers somewhere else. Others who understand the numbers you mentioned will be oh here soon. Also, tell your present cardiologist that you are unhappy with her communication skills. Sometimes doctor's that just because the numbers a person presents with are usual or none emergency to them doesn't mean the person isn't whacked out. I hope your appointment today provides you with a positive plan and direction. I will be thinking of you.

 

[RBCola]

Sorry to hear about your recent news. I can provide some insight because I had a BAV which was replaced 6 years ago, and now was recently diagnosed with a 4.6cm ascending aortic aneurysm.

So the general management is that if you have a BAV that needs to be replaced and the aorta is >4.0cm in diameter, your surgery will involve both replacement of the valve and repair of the aorta. In anyone with BAV with an aortic aneurysm >5.0 cm, they need elective repair of the aneurysm regardless. There is a little bit of a gray area in between where some experts recommend repairing the aorta if its >4.5 cm people with small bodies, history of smoking and pulmonary disease.

Hope this answers some of your questions. For more information you can try reading this article:

http://circ.ahajournals.org/content/119/6/880.full

Im sure you'll be in great hands seeing the specialists at Stanford. Good luck.

-RBCola

 

[RBCola]

Oh and "Bovine" arch is just one of the common (and normal) anatomical variations of the great vessels (the arteries that come off the aortic arch). Nothing to worry about regarding that.

 

[caligirl]

Thanks for the replies . I just got back from seeing my cardiologist. What she told me which she was not clear about the first time, is that my aortic valve is between a bicuspid and tricuspid valve. Its not a genetic condition it was something happened when my heart was forming in utero. She said one of my leaflets is partially fused. I do have some "slight" leakage which caused me to have the aneurysm in the ascending aorta. At this point she said she would like to monitor me every 6 months, but said that if I was still really worried that I should have a consult with a cardio thoracic surgeon, but at this time she does not feel that I am a candidate for surgery. I feel a little better but I am still nervous, and scared, and am definitely going to follow up at Stanford.

 

[Bill B]

Re: Stanford

Look at my signature below. You have gone to the right place. My surgeon there wrote the book on aortopathy of BAV.
http://billsworkshop.com/Some_AVR_lit/Miller_Aortopathy_of_BAV.pdf

Although it appears now you may not have congential BAV. Stanford will help you and your cardiologist sort this all out. Regardless, please know that this is all fixable, if need be, and you should do very well, just like me.

 

[Sarah_Louise]

Welcome to the boards
Good luck for your appointment, hopefully you'll get some more clarity soon,
thinking of you,
Love Sarah xxx

 

[Rachel]

Hi Caligirl!

I've been where you are, and not that long ago! I'm 46, and last year I discovered that I had a bicuspid aortic valve (I was born with mine I guess) and that my ascending aortic root was 5 cm. I was VERY concerned and so I know what it's like to go in for a test expecting to be fine, but finding out the opposite to be true (I mean, I NEVER even knew that such a thing as a bicuspid valve even existed before last year).

You are so very wise to keep on top of this and it's great knowing that you have access to Stanford! It is my understanding that surgery is usually not recommended until the aneurysm reaches 5 cm (I've already had my surgery 10 months ago - my aneurysm was actually 5.2 cm at time of surgery). Cleveland Clinic also has some guidelines based on a person's height and is not as generic as the 5 cm guideline.

The hardest part, for me at least, was hearing the news and then just waiting around - which seemed like years, but was really only 3 months. I also had a very frustrating experience with my first cardiologist who just didn't seem to think that an aneurysm my size was that big of a deal. So it's good to keep on top of this, it's also good to try and relax (that can be hard to do, I know firsthand, but really try to relax).

You may or may not need surgery, but I will tell you that for me at least the easiest part of the past year was the surgery (I didn't have to do anything - HAHA)! And I'm doing really well now too!!!

This forum is also great, I didn't discover it until later but you will find tons of knowledgeable and supportive people here!

I'll be thinking of you,

Rachel

 

[jake]

hey Caligirl:

WOW! Just a few short years ago, I was in your exact spot! Same valve, same root aneurism. Needless to say, a year after being diagnosed, I had my aortic root repaired and they elected to leave the valve alone. A year and a half later, it’s all good!

Listen all I can recommend to you is to be careful about letting them CT scan you every 6 months. That’s a LOT of radiation! The alternative is MRI with Gadolinium to look at that root and that has its risks as well, but less than CT radiation and the iodine based contrast die (assuming you have good healthy kidneys).

In my case, after a year of being monitored with a 4.4-4.6 cm aortic root, I finally said to either $h*t or get off the pot! I wasn’t going to let them radiate me every 6 months so off to surgery we went!

Remember that radiation exposure is cumulative. I am not, by any means telling you not to have necessary tests, just make sure you know the risks and are offered alternatives. One thing that I could not debate with my cardio was that at the age of 44, my aorta was NOT going to get any smaller. Armed with that, I agreed it was time to move. Everyone has a different situation. For me, with the exception of occasional vertigo, I came through just fine and still have my BAV. Now I get MRI’s, not CT’s. I opt for the safest gadolinium available and they are happy to accommodate my requests.

We all feel for ya and many of us have been in your shoes. Soon enough, you will be with us here on the other side. Take comfort that you have friends and we are here for you.

 

[Glen Swan]

Don't feel bad about not finding out much information after the diagnoses. I was in a similar boat when our 10 day old son was diagnosed with CoA (narrowing of the aorta) and BAV. They didn't explain much other than what his CoA was and didn't really explain what BAV would be later in life. We discovered everything on the rush to the childrens hospital where we found out both cause problems and both are highly fixable with a high success for a normal life.

It seems that a lot of doctors just don't understand the serious to a patient now-a-days when they sling out test results and diagnosis. I think they forget that not everyone knows what these conditions are and they forget to explain it in-depth. Regardless, this forum is a good resource and if you didn't know already, BAV is just a small bump in the road that almost everyone drives over and continues on being normal healthy people with or without surgery.

Welcome to the boards, hope you follow up on your BAV more closely and best of luck to ya!