Bicuspid Valve Questions for Cardio......Need Help

[PeteCrev]

Hello,
A few weeks ago I had my annual routine ECHO and Stress test and Doc said my valve had gotten worse from a 1.5 opening to a 1.0 within a years time. I was in shock because a year ago he said I shouldn’t need surgery for at least 10-15 years. I only found out about my Bicuspid Valve a year ago and this is all new to me…..and now the doc wants to see me in two months.
My question to you guys is….what exactly should I ask the doc? Because last time I really didn’t know what questions I should be asking.

Do they usually give you a copy of the ECHO and Stress test? Reason is I’m trying to do my homework and was deciding if having the “ROSS Procedure” would be smart and would like to give a copy to a Surgeon I found in Manhattan….or do you think it’s too premature to go that far right now?
Thanks for the help!

 

[tom in MO]

Ask him what you think you need to know. This will pop up in your mind as you wait, write down a list of questions, becuase you won't remember them.

I'd ask him what about your condition will trigger the need for surgery. I'd ask if your case straightforward, or is there something that may require a consultation with someone else at this time.

I'd ask how often you need to get the echos. Many of us were on a 6 month echo schedule before we got told to have the operation. Ask him if there is a need for any other tests at this time.

Don't worry. It is what it is and if it comes sooner than later, take it as a gift to get on with the rest of your life.

 

[PeteCrev]

Ask him what you think you need to know. This will pop up in your mind as you wait, write down a list of questions, becuase you won't remember them.

I'd ask him what about your condition will trigger the need for surgery. I'd ask if your case straightforward, or is there something that may require a consultation with someone else at this time.

I'd ask how often you need to get the echos. Many of us were on a 6 month echo schedule before we got told to have the operation. Ask him if there is a need for any other tests at this time.

Don't worry. It is what it is and if it comes sooner than later, take it as a gift to get on with the rest of your life.

Thank you Tom.

 

[epstns]

Pete - One more reason I would not be surprised in your shoes. We have a saying here about stenotic aortic valves. . . "The worse they get, the faster they get worse." I'm sure that there is a scientific explanation for this, but it has been true for many of us. We cruise along at 2.0 to 1.5 cm2 valve area for years, it seems. Then one day we are at 1.5 and are told to come back in a year. It may stay stable at 1.5 for a couple of years, with echo's more often, then WHAM! You're sliding down that slippery slope toward whatever valve area your cardio uses for his/her trigger to bring in the surgeon.

This has been the course many of us followed. The sooner you can get your mind at ease with the progression, the sooner you can begin to gather the information you will need to calmly and successfully travel the road to replacement.

When it comes to the question of the Ross Procedure, why not discuss it with the surgeon. He/she will be able to discuss the pro's and con's from a medical professional's perspective. Then you will know if you do, in fact, have a choice.

 

[knotguilty]

I wonder about your symptoms. Do you have any? At a 1.0 opening, I would think that you do have some symptoms, you may not realize it. I was told it is better to take care of these valves earlier rather than later to avoid any other problems developing with your heart. I was told your prognosis is much better down the road. Your heart has to work harder when your valve opening begins to get smaller. It is a shame that you have to worry about this and you are young to have to go through this. I know it all happened for me kind of fast too. I would say it is never too soon to start educating yourself and learn as much as you can. The decision is a personal one for what you ultimately decide to do. Hope it all works out for you.

 

[T in YVR]

My question to you guys is….what exactly should I ask the doc? Because last time I really didn’t know what questions I should be asking. Do they usually give you a copy of the ECHO and Stress test?

You can ask for a copy of your Echo and Stress test. I got hard copies of all my tests as I went through the process, asked them questions when I met with them, and then did research on it myself (using my echo, stress test, CT, TEE, etc). In terms of what questions to ask your doc (I assume you mean the surgeon and not the cardiologist? the questions are slightly different for each), it's different for everyone depending on what/how much you want to know. I think they'll tell you what they think of the ROSS procedure as an option. When interacting with your cardiologist or surgeon, I'd highly recommend bringing in a list of all questions and take notes. Some may be comfortable with you recording the session as well using an iphone etc. For me, I got my doctor's email address, sent him all my questions 1 day before the meeting, he answered many of them in advance, and then we discussed the rest of the questions and any follow up questions in person. I think they really appreciate it when you come in prepared and make efficient use of your time together.

 

[PeteCrev]

You can ask for a copy of your Echo and Stress test. I got hard copies of all my tests as I went through the process, asked them questions when I met with them, and then did research on it myself (using my echo, stress test, CT, TEE, etc). In terms of what questions to ask your doc (I assume you mean the surgeon and not the cardiologist? the questions are slightly different for each), it's different for everyone depending on what/how much you want to know. I think they'll tell you what they think of the ROSS procedure as an option. When interacting with your cardiologist or surgeon, I'd highly recommend bringing in a list of all questions and take notes. Some may be comfortable with you recording the session as well using an iphone etc. For me, I got my doctor's email address, sent him all my questions 1 day before the meeting, he answered many of them in advance, and then we discussed the rest of the questions and any follow up questions in person. I think they really appreciate it when you come in prepared and make efficient use of your time together.

I will ask for copies....and fantastic idea about recording the session. Thank you for the great ideas.

 

[PeteCrev]

I wonder about your symptoms. Do you have any? At a 1.0 opening, I would think that you do have some symptoms, you may not realize it. I was told it is better to take care of these valves earlier rather than later to avoid any other problems developing with your heart. I was told your prognosis is much better down the road. Your heart has to work harder when your valve opening begins to get smaller. It is a shame that you have to worry about this and you are young to have to go through this. I know it all happened for me kind of fast too. I would say it is never too soon to start educating yourself and learn as much as you can. The decision is a personal one for what you ultimately decide to do. Hope it all works out for you.

Now that I know what the symptoms are, I do think I have them....Dizziness at least once a day....not to the point of falling down but just blurred vision., shortness of breath when I make sudden movements and on occasion heart palpitations.
Prior to finding out about my Bicuspid Valve, I had my dizziness checked out by my GP and an Ear Nose & Throat Doctor….and they found nothing. So I’m kind of glad this is the reasoning.
This site is wonderful for the inexperienced people like me to get educated with actual experience from others.