new and have questions

[stephanie38]

Hi all, I have been diagnosed for a few years with BAV with mild insufficiency (or regurgitation - I'm not sure the difference, if any). I have scanned many of the posts and have learned a lot - a lot more than at the cardio's office. I seem to have a difficult time questioning the doctor. I don't want to seem overly concerned about something insignificant. The first cardio I went to patted my hand and told me not to worry about it, he would worry about it for me. I decided to get a second opinion the next year. While I like this cardiologist, he too acts like it's no big deal and told me nothing about it, just that I have the bicuspid valve and a murmur. He wants me to have the echo stress test every year and just monitor it. I'm certainly fine with that.

Does everyone who has a BAV and a murmur have to have it replaced? I was under the impression that I probably would not have to have it replaced. As far as I know, everything else is fine, but I certainly don't know all these numbers and measurements that many people on this forum know about themselves.

Thanks again for all the information I've already learned!

 

[Lynlw]

Hi, Welcome. To start with , if you don't have them, you should ask for copies of your echos or other tests, that way you can have all the numbers yourself and keep track of them.The easy way is to call and ask your cardiologist's office if they will send you a copy, many will with out any problems, but if they won't ask what you need to do to get a copy. Usually you have to contact Medical records were you had them done and fill out forms and often if it is for personal use they may charge a fee to copy them. Or if you have a doctor that you can have them sent to who will give you a copy, usually there is no charge to send results to another doctor. IF you have to go thru medical records to get your test results, some hospitals now have the form you need on their website that you can just print, fill out and send in.

Yes it is VERY possible to have BAV and a murmur and NEVER need anything done. Somewhere around 2% of the population have BAV and Mild or trace problems and the majority never need surgery. Many never know about it, it is discoverred during autopsy that the death had nothing to do with their heart. The good thing is you know about it and can keep an eye on it incase it does progress.

 

[Ross]

Just to echo Lyns post, your medical records will provide you with far more information then what they ever tell you. Get them as soon as you can.

 

[nngbwh]

Just want to say hi and welcome you aboard.

 

[Philip B]

Questions?

Questions?

Hopefully, you'll be one of those lucky folks who manages to make it through life without dealing with valve replacement surgery. Do follow your cardio doc's advice regarding monitoring what's happening with the valve. My defective equipment lasted a long time before it needed replacement.

-Philip

 

[ALCapshaw2]

FYI, Insufficiency and Regurgitation are just two different names for the same condition.

I echo the recommendation to get copies of your EchoCardiogram Reports.
These should be available from the facility that conducted the tests.
You may have to sign a Medical Release of Information form to be provided to yourself.
Just give "personal information" or "personal use" for the reason.
They may ask for a small copying fee (typically $1 per page).
Sometimes facilities will mail your copies at no charge.

'AL Capshaw'

 

[ARGreenMN]

Hi Stephanie. Not sure how old you are (unless the 38 in your name is a clue). But I've talked to a lot of folks who, like me, were diagnosed with BAV early in life and lasted many years (decades) before needing the surgery. I'm certainly no doc, so don't trust this as gospel, but I was at moderate/severe stenosis/regurgitation when it was time for me, and I've heard similar stories from others. So if you're still at mild, you may have some time (maybe many years) left yet before needing it, if you ever do. The annual echoes are important to keep an eye on it, but my cardiologist kept telling me each year that it's more the symptoms they go by to tell when it's time. And I think the main symptoms to look for are short of breath, chest (and/or in my case back) pain and light-headedness, especially when doing things that didn't use to cause those things, and/or when just at rest.

 

[skeptic49]

Hi Stephanie...one other concern is that with BAV there is the possibility of associated connective tissue disorders such as a dialated aorta or aneurysms. You should be evaluated for this possibility with a chest CT scan. Since BAV is thought to be a heritable, the recommendation is that first degree relatives of those with BAV should also be evaluated. More information on this can be found on the Bicuspid Aortic Valve Foundation website.

Best wishes,

Jim

 

[stephanie38]

Thanks for everyone's replies. I have been having some symptoms of shortness of breath and dizziness, especially on the treadmill, but have just written it off as being out of shape. I will continue to watch that. Of course it could all be in my head - I can talk myself into just about anything. I appreciate the advice to get my records, that never occurred to me. I'm 48 now (I just stuck with an old user name because I'm forgettful).

Thanks again for the kind words. This is really a nice group of people, and I wish you all the best.

 

[Ross]

I woudn't dismiss a thing until you have those records in hand and numbers that we can go over. I'd hate to see you trodding along on the treadmill and simply keel over dead.

 

[Luana]

Shortness of breath when you have a faulty heart valve is not something you should dismiss.

 

[ARGreenMN]

Agreed - I think that's the main symptom to watch for. Make sure to tell the cardiologist about that. Don't hide it from him like I tried to for a couple years...

 

[tobagotwo]

The echo is a good idea, but the stress test is gratuitous. It's not at all needed for this purpose, and wll not improve the ability to diagnose changes in BAV status. In some cases, it may throw the echo readings off to some extent.

You're right to take control of this. But as has been pointed out, you may never need to do anything about it. That's my wish for you.

I would seriously consider asking for a baseline reading of your aorta sizes (ascending and descending, not just the root). If all are normal, consider rechecking in five years or so. If not, then you know something. It's non-intrusive, and can be done via MRI, if you wish to avoid X-ray radiation. Aneurysms can be associated with BAV (but often aren't), so it's good to keep occasional tabs.

Best wishes,

 

[a4wanman]

Great advice from everyone. My BAV was diagnosed at age 6. Was seeing my cardio every 2-3 years, then every other year, then once a year, then twice a year. Not much shortness of breath. My LV grew to 6.7 with an aortic annuerysm at 4.5. Had severe regurgitation. Was "lucky" enough to have endocarditis from enteroccocus bacteria not normally found in humans. This accelerated my valve replacement on April 26th.

I was going to get a little red sports car for my 40th birthday (October), but I'm having to put the money on my new valve.

Scott

 

[stephanie38]

I have taken everyone's advice and ordered the records from my doctor. All the tests were done in his office, so he shoud have everything. I'll let you know what they say.

If the shortness of breath continues, I will definitely contact him. I've just started back on the treadmill, so I really think that's what it is. Ross, I would certainly hate to keel over on a treadmill, as it's one of my biggest fears - that or dying at Walmart!

 

[Dale 1]

Hi Stephanie,

I too had shortness of breath, as well as a little chest pain and "spaciness," although I never was really dizzy. DO NOT IGNORE YOUR SYMPTOMS. I did for a while; by the time I went to the hospital, they told me it was a good thing I'd come in when I did. (I thought they were going to tell me I was suffering from anxiety and should go home and have a drink, but no.) You're probably fine, but, knowing that you have BAV, you really need to be on top of this.

 

[Penny]

" I have been having some symptoms of shortness of breath and dizziness, especially on the treadmill, but have just written it off as being out of shape. "

Hi Steph, I was told last year nothing to worry about when my family doc got my echo results back. I had been told it was mild aortic stenosis. He told me no need to go back to the cardiologist as there wasn't much change. This year I have a new doctor and when my echo was done he became quite concerned and sent me to the cardiologist. I am now at the severe stage and having surgery within a month. The cardiologist asked me why I waited to go an see him. My condition doubled in severity in 2 years. So my advice is to keep on top of it, change doctors if you feel yours isn't doing what is in your best interest. Good luck! PS. I got dizzie on the treadmill and my doc said "JUST STOP THAT"