Help me to ask the right questions.

Help Support ValveReplacement.org:

KarenB

New member
Joined
Aug 6, 2010
Messages
2
Location
Lincoln Ne
Hi, I am new and need your help. Let me start by explaining my situation. I had a mini stroke a few weeks ago, I have been through a bunch of tests, MRI, CTScan, ect. When they did the bubble test during the ECHO it showed a hole in my heart. So my Cardiologist wanted to see the hole up closer to see if it would require attention so he did a TransEsophageal Echo. After the test he told me that I don't have a hole but I do have BAV which he said probably had nothing to do with the mini stroke. So they found this looking for the hole, I have never had any of the symptoms related to this defect. I meet with my Cardiologist in a few weeks and haven't a clue what to ask him. Help. Also, do all people with this condition require surgery?

Oh and I am 48 years old if that has anything to do with anything. :)

Thank you in advance
 

Ross

Observer
Joined
Dec 16, 2001
Messages
25,981
Location
On The Hot Seat
Hi Karen and welcome to the zoo.

Do you know where this hole is? If it's presenting no symptoms for you, then I would imagine they'd leave it alone until it does. What you need to do is get copies of your test records and go over them. Many times, doctors write things down that are relevent findings and tell you nothing about them.

I'll let the others come up with the questions.
 

ALCapshaw2

Well-known member
Joined
Mar 20, 2003
Messages
6,910
Location
North Alabama
Welcome Aboard Karen -

A couple of Questions come to mind.

First, How Sure can they be that you do Not have a Hole in your Heart?

Second, if you do not have a hole in your heart, What other causes can they think of for your 'mini-strokes'?

You need an answer to the second question so that you and your Doctors can take measures to prevent future occurances.

Regarding BAV, someone posted that about 4% of the population have BAV.
Some develop symptoms and require surgery to replace the valve.
Others never know they have BAV which may be found if they have an autopsy after their demise
(from whatever cause, not necessarily their heart valve).

Now that you know you have BAV, it would be wise to monitor the condition of your valves with regular EchoCardiograms.
I would probably want them done annually, but if there is no change after a couple of years, your cardio may suggest going to every 2 years.

Be sure to get copies of ALL of your Test Reports from the facility where they were performed. They will contain a Lot of information that your cardio will probably just 'skip over' during office visits. You will have to sign a Release of Information Form to yourself for personal use. There may be a copying charge.

'AL Capshaw'
 

KarenB

New member
Joined
Aug 6, 2010
Messages
2
Location
Lincoln Ne
Ross and Al, Hi!

Ross, They thought I had a atrial septal defect when doing the bubble test, and the Cardiologist looked over this test before ordering the TEE test. And thank you, I will make sure I have all of my test results with me.

Al, after doing the TEE test the Dr. said he saw no evidence of a hole but did find that I had BAV. I would have asked more questions than but I was just coming out of sedation and I think my husband was taken off guard and didn't know what to ask. So I figure my next visit would be a good time to ask.

Also, they were looking for a blood clot, thinking that may have caused a stroke but found nothing.

And I will call to get copies of my test results, some they sent in the mail but do you mean like the XRays ect..?

Thank you for your input! I was kind of scouring the internet looking for answers and saw this board and thought these people would be the people to ask.
 

Ross

Observer
Joined
Dec 16, 2001
Messages
25,981
Location
On The Hot Seat
Well certainly ask how the condition of the valve and ascending aorta looked. You may be able to go years without surgery, but the mini strokes are a pretty good sign that something isn't right somewhere.
 

artsyfish

Member
Joined
Jun 22, 2010
Messages
17
Location
Virginia Beach, VA
Ask every question you can to make you feel better. Do research here (great resource) and on the Cleveland Clinic site and you will come up with the questions to ask. During the process you will learn more and learn more questions. Everybody's situation is different, but with similarities.

Hate to say this, but they can do all the tests in the world, and they won't know the exact state of your heart til they get in there. In my case they knew about the extra arteries and bicuspid aortic valve, but they didn't know the aortic and mitral valve were stuck together with calcium deposits. My surgeon found iit a "challenge" and his assistant with 30 years experience had "never seen anything like it". It turned a 4 hour operation into a 7 hour one!
 

Lynlw

VR.org Supporter
Joined
Jul 15, 2005
Messages
6,541
Location
NJ
Since you asked what you should ask, I would ask how the bubble test could show bubbles moving thru the septum if there is no hole. (which most likely would be a PFO (patent foramen ovale) a small hole every fetus has that should close shortly after birth , not the other kind of ASDs which are a hole in the septum that never should have been there)
Is it possible there could be a false negative for the TEE Is it possible there is a hole but it is being blocked when they did the TEE or not open? I know there has to be certain pressure differences between the atriums for the bubble to go thru

I could be wrong, but I would take it as a good sign that with all the testing and the TEE the only thing they saw that they mentioned was the BAV.
 

Mentu

Premium Level User
Joined
Nov 9, 2008
Messages
1,311
Location
My surgery was performed at Oklahoma Heart Institu
Karen, asking the right questions is always a problem. My Cardio is pretty forth coming and if I ask him a question he will answer it but he doesn't volunteer all of the information he has. I've had copies of all my cardiac records sent to my personal Doctor who has worked with me for the past decade. She knows me far better than any of the others and has been a tremendous help in wading through what is significant and what is just detail.

The answer to your question about the timing of surgery seems to be a moving target; cardiologists give a somewhat different answer than do surgeons and within those specialties there is a lot of diversity of opinion. Essentially they balance symptoms with test results to arrive at whether or not one needs surgery or will need it in the foreseeable future. It would seem to me that if your stroke was related to your cardiac issues that would really color the discussion even if your test results do not show quite the severity that would normally be expected.

You would be much better prepared for talking with your Cardio if you had the test results in hand before your next visit. That would give you some time to look them over and develop questions based upon evidence. If it were me, I would try to talk with my own Doctor about those test results before speaking with the Cardiologist. The more information you have in hand, the more likely the Cardio will speak with you as though you are an intelligent adult. It is astonishing, the number of people who do not want to know the details but just want their Cardio to tell them the problem can be fixed and when. My own Cardio seems to begin with the assumption that his patients do not want details which I've found frustrating; with time he has become more open with me but it didn't happen over night. I hope that it goes without saying that you can also use the resources here in VR to understand what the test results mean.

Larry
 

Latest posts

Top