The day finaly came!

[PathFinder]

Yes... Today was my 6 months echo and they discovered dynamic enlargement of my LV. So, the surgery is comming. The valve will be mechanical. I want very much to have the On-X valve. I don't know however, what to do about. Please, give me an advice!
I'm not scared of the surgery. The thing, that I asked all the cardiologists today, was about my life expectancy. Everybody knows the main risk factors (ACT and Endocarditys). Excluding them, with my great overall health and no other heart problems (even no symptoms yet), I have a life prognosis practicaly not limited. I know it is still too optymistic, but there may be some truth, hmm?
OK. What I wanted to ask you, guys, is about my bicuspidia. I have read a lot about the dilation and aneurism of the aorta by the BAVD's. To I told this to my cardio (she is very educated of congenital deffects), but she answered "Your aorta is fine! No signs of any changes". So they will replace only my valve. What is your opinion about? Do I have to insist on second observe on my aorta?

Thank you!

 

[dick0236]

To: Pathfinder

To: Pathfinder

I can give you no advice because I don't even know what "bicuspidia" means. Valve problem patients today seem to have access to a lot of info, like when you say "dynamic enlargement of left LV". I don't know what that means either. Before my surgery my Cardio only told me that I would be dead by age 40 if I didn't have my Aortic vale replaced. Since I just had my 71st Birthday, I would say that your odds are pretty good to have a normal life expectancy, but like everbody, valve patient or not, there are no guarantees. You say you are in good physical condition and hope to be able to continue and athletic lifestyle afterword. I did and you probably will. Maybe you and I could play golf sometime.....but you will have to walk, because I seldom ride in a cart. Trust the medical professionals with equipment decisions and if you feel you cannot trust them, find someone you can.

 

[Karen]

How does your cardiologist know that your aorta is fine? Have you had a cardiac MR or CT scan? I have made a point to ask at each echo and before a heart cath, that my aorta be examined carefully for any sign of an aneurysm. Each time I was told that my aorta was perfectly normal. In a cardiac MR done just a couple of months after these other tests, it was determined that my aorta IS "mildly enlarged." I think it IS a good idea to ask for an MRI or CT scan -- either of these will give you more reliable numbers concerning the size of the ascending aorta than the other routine tests that the doctors rely on so much.

Good luck!
Karen

 

[Ross]

Pathfinder I'm not sure what you can do in Bulgaria, sorry. Here is a complete contacts list for On-X. Perhaps their European sales rep can help you out.

http://www.onxvalves.com/Contact.asp

 

[PathFinder]

Thanks Ross!

Thanks Ross!

I'll ask my cardio about the valve model choise at first. Do you think, that name is the same in Europe? I mean, the On-X may have diferent name, like the most medicaments, used in America and Europe.

 

[Ross]

As far as I know, it's On-X all over the world. They are being spread pretty much by word of mouth, so if someone there hasn't heard of it, then I'd get a hold of the company and let them make them aware. Bear in mind, you may not be able to have what you want, so by all means, make a couple choices in case the first plan falls through.

 

[HarleyM]

I have the on-x in the aorta position. At 10 months my heart has decreased in size from 7.3 cm to 5.69.
Fell free to ask any questions. I was worried what life was going to be after surgery but I must say it is great!

 

[PathFinder]

On-X leaflets?

On-X leaflets?

Thank you for your fast responses, friends! Could anybody tell, whether the On-x is the only one mechanical bi-leaflet valve, which leaflets open in 90 degrees? I think, that is the most progressive thing in that "djadjah". No turbolence, or less turbolence means better haemodynamics, does it?

 

[Ross]

Full Opening Leaflets
On-X valve leaflets are free to follow the flow. Other valves must stop short of the fully open position to ensure that they will close reliably with backflow, which can increase obstruction and turbulence .

With the On-X valve's patented "actuated pivot design", closure is assured even when leaflets are open to the full 90°. Leaflet freedom reduces turbulence and its accompanying effects such as pressure loss and blood damage.

The On-X design allows leaflets to fully open on every cycle. As flow reverses, the leaflets engage a ?closing ramp?, which slightly rotates the leaflets enabling closure.

http://www.onxvalves.com/ValveInfo_DesignFeatures.asp

 

[PathFinder]

Decision?

Decision?

May be I have the decision already. If this is the best choise for a mechanical valve today, then I want this valve. Monday I'll ask my cardio about.
Friends, would you advice me for any other questions, that I have to ask on monday? Every advice is priceless in these moments!

 

[Magic8Ball]

There are many people on this site who will be able to tell their story about just having a bicuspid valve replaced and not the aorta only for the aorta to dilate later in life.

It's safe to say that your aorta will dilate at some point in your life, i may only dilate slightly and never need attention or it may dilate a lot and need another surgery.

The question you need to ask is how much faith do you put in your luck that it will never need attention?

Ask your cardio/surgeon if they can guarantee that it will never need attention, i bet they can't.

You really need to ensure that you are totally happy with the decision not to replace before you proceed with just the valve replacement alone.

Regards.

 

[PathFinder]

I know!

I know!

Yes, I know and understand the risks of Bicuspidia, related to the aorta. But my cardiologist doesn't want to listen to me. Her answer is: "Yes, Ivo, you are right - bicuspidia is very often related and associated with aneurism. But we won't touch your aorta - there are no signs of any changes or disturbance of it right to this moment!"
I'm already confused, becouse she may get angry, if I ask her again... And that will be bad!

 

[Lynlw]

Yes, I know and understand the risks of Bicuspidia, related to the aorta. But my cardiologist doesn't want to listen to me. Her answer is: "Yes, Ivo, you are right - bicuspidia is very often related and associated with aneurism. But we won't touch your aorta - there are no signs of any changes or disturbance of it right to this moment!"
I'm already confused, becouse she may get angry, if I ask her again... And that will be bad!

Have you talked to the surgeon yet, or just the cardiologist? you may have better luck w/ the surgeon. I don't know how the health care works in Bulgaria, but if possible, if your doc wont's listen o you and you're afraid she will get mad, I would be looking for a new doctor

 

[PathFinder]

new doc?

new doc?

No, I don't even think about new doc. She is very educated in congenital heart and valve defects. One year ago, she was graduated in a world cardiologists level in Germany.
The health care in Bulgaria is not at the level of the western european countries, but we are members of European union for 2 months ago. And it's getting better. However, excluding the general condition of the clinics, we have very good specialists in cardiology. For example, my surgeon reads a lectures in Boston sometimes. He has done the first heart transplantation in eastern Europe and first artificial valve placed in a baby's heart.
Do you, guys think, that it is not acceptable to have bicuspidia and not to damage your aorta?

 

[Lynlw]

No, I don't even think about new doc. She is very educated in congenital heart and valve defects. One year ago, she was graduated in a world cardiologists level in Germany.
The health care in Bulgaria is not at the level of the western european countries, but we are members of European union for 2 months ago. And it's getting better. However, excluding the general condition of the clinics, we have very good specialists in cardiology. For example, my surgeon reads a lectures in Boston sometimes. He has done the first heart transplantation in eastern Europe and first artificial valve placed in a baby's heart.
Do you, guys think, that it is not acceptable to have bicuspidia and not to damage your aorta?

Oh please don't think I meant the docs aren't knowledgable, I meant I know that with different countries health care/insurance, sometimes you don't have choices in where you go and other ones are better about getting 2nd opinions and travelling
you know even if you have the very best docs and agree w/ their sugestions, it's still sometimes a good idea to get a 2nd opinion, just to see what other doctors suggest. heck I talked for 5 centers/doctors before Justin's last heart surgery (his 4th)
What does your surgeon say about what you should have done, or does he agree w/ the cardiologist?

 

[PathFinder]

is it true?

is it true?

I read today, that the bilieflet mechanical valves have little blood backflow at their closure regime. May be it's not so important quantity, but it's a new for me. I thought they solve all the problems with the backflow!
Finaly I'll get the valve of my garden's sprayer.

 

[tobagotwo]

Bileaflet valves are superior in the aortic position. However, some of the older tilted disk valves do nearly as well in the mitral position.

Most BAVs, even among those who wind up having valve surgery, never develop an aneurysm of the aorta that requires surgery. If your aorta is fine, it's fine. It doesn't mean that one can't develop eventually in the future, but there's no reason to believe the doctor is lying about it.

Be well,

 

[xbxb]

Aorta

Aorta

I had my surgery in Boston. When I had my Bicuspid repair and Aorta Root replacement 18 months ago I was told 50% of the people with a Bicuspid valve will have an enlarged aorta that will need repair. 50% will not. You may be one of the lucky people that will never need a repair! If you don't that is great! Good luck!

 

[PathFinder]

measurements

measurements

Hi, friends!
I received an e-mail from the agent of On-X for Europe. They don't have a connection company in Bulgaria, but they are looking for one in the next week, becouse Bulgaria is still a new member of European Union. So, may be I'll have to buy or order the valve from Germany.
My last echo showed some parametters, that I took to critical: you know, that the safety ranges are 55/40 mm sistolic diameters. Mine appeared to be 62/44mm! And my EF varies over >50%.
I was very surprised, when the cardio-team said: "OK, you are on the path to the surgery, but you are not 'emergency'. Wait till the summer!"
Now, what are you thinking?

Ivo

 

[Arthur]

Bicuspidia

Bicuspidia

Yes... Today was my 6 months echo and they discovered dynamic enlargement of my LV. So, the surgery is comming. The valve will be mechanical. I want very much to have the On-X valve. I don't know however, what to do about. Please, give me an advice!
I'm not scared of the surgery. The thing, that I asked all the cardiologists today, was about my life expectancy. Everybody knows the main risk factors (ACT and Endocarditys). Excluding them, with my great overall health and no other heart problems (even no symptoms yet), I have a life prognosis practicaly not limited. I know it is still too optymistic, but there may be some truth, hmm?
OK. What I wanted to ask you, guys, is about my bicuspidia. I have read a lot about the dilation and aneurism of the aorta by the BAVD's. To I told this to my cardio (she is very educated of congenital deffects), but she answered "Your aorta is fine! No signs of any changes". So they will replace only my valve. What is your opinion about? Do I have to insist on second observe on my aorta?

Thank you!

Bicuspidia is very common (about 20% of aortic valve disease)
Your are young. Question: are you a male or a female ? !
This is an important issue for the choice of the valve