Mechanical vs my own

[gdfd]

Hello all.

Few days ago I met my surgeon and it seems that my surgery will be scheduled sometime in October. He told me that my own aortic valve (bicuspid with mild stenosis and mild regurgitation) seems to be in a good enough shape to be left in place (no repair necessary). However the surgery is needed because my ascending aorta has already a diameter of 5 cm.
I'm 35 y.o. and I should make a choice: to keep my own valve (for an unknown period that could be only few years as I've been already warned) or to have it replaced with a mechanical one (Carbomedics, that is suposed to last for life).

I would highly appreciate to have your opinion if you took a similar decision in the past because this isn’t an easy one.

gdfd

 

[psalmist]

just a thought

just a thought

I would weigh out the inevitablity of another surgery and how soon. Many of us choose mechanical to avoid multiple surgeries. Not that a mechanical means you won't have another surgery but possibly not as many. I would think that the least amount of surgeries the better.

 

[Karlynn]

Kind of a tough dilemma. Are they feeling that your valve will definitely need to be replaced as some time? That would really stink if you found yourself back in surgery in 2 years. If it were in 15 years, then that's another story. I would absolutely have a valve choice for your surgery, because the surgeon should be able to better assess the issue when he goes in fix your aorta.

 

[ALCapshaw2]

Hello all.

Few days ago I met my surgeon and it seems that my surgery will be scheduled sometime in October. He told me that my own aortic valve (bicuspid with mild stenosis and mild regurgitation) seems to be in a good enough shape to be left in place (no repair necessary). However the surgery is needed because my ascending aorta has already a diameter of 5 cm.
I'm 35 y.o. and I should make a choice: to keep my own valve (for an unknown period that could be only few years as I've been already warned) or to have it replaced with a mechanical one (Carbomedics, that is suposed to last for life).

I would highly appreciate to have your opinion if you took a similar decision in the past because this isn’t an easy one.

gdfd

I suggest you ask your surgeon (and at least one other surgeon) "What are the odds that your slightly stenotic Bicuspid Aortic Valve will NOT need to be replaced in the next 5, 10, or 20 years?"

I would also recommend that you go into surgery with a Plan A and a Plan B Valve Choice 'just in case' he determines that it would be best to replace the valve NOW.

To help make the decision on which valves to select, I suggest you browse through the Valve Selection Forum, starting with the "sticky" post by 'Tobagotwo' at the top of the Forum listing.

'AL Capshaw'

 

[Susan BAV]

Has your surgeon performed this exact scenario before? If so, what was the short-term and long-term result? I think a second or even third opinion would be good; can you get that? Also, perhaps you can email an experienced bicuspid surgeon and ask him about it. I recall some other members here have emailed surgeons about other specifics and received extremely helpful information in reply. This is a very interesting prospect. Please keep us posted. Take care.

 

[Bad Mad]

Hello all.

Few days ago I met my surgeon and it seems that my surgery will be scheduled sometime in October. He told me that my own aortic valve (bicuspid with mild stenosis and mild regurgitation) seems to be in a good enough shape to be left in place (no repair necessary). However the surgery is needed because my ascending aorta has already a diameter of 5 cm.
I'm 35 y.o. and I should make a choice: to keep my own valve (for an unknown period that could be only few years as I've been already warned) or to have it replaced with a mechanical one (Carbomedics, that is suposed to last for life).

I would highly appreciate to have your opinion if you took a similar decision in the past because this isn?t an easy one.

gdfd

As has already been said ,your decision ultimately has to come down to when (or if) your AV will need replaced. The difficulty I imagine is the ability to predict when it might deteriorate significantly enough to reach that stage. That has to be what you base your decision on.

I am in a similar but almost oppostite position to you. Bearing in mind I have already had a AVR surgery (so therefore the valve goes much quicker from Mild Regurgitation to severe stage), my valve is now at the stage where it soon will need replaced- but the ascending aorta is 4.5cm - just short of the normal threshold for surgery.

This is a no-brainer though, because if I choose to get the valve done only, I would be almost guaranteed to be back in getting the ascending aorta replaced 5 years or so later. A third OHS? (no thanks )
Not that there are any guarantees, i prefer to kill 2 birds with 1 stone.

Your situation may be much different in that your valve could be working away just dandy for a long time to come. Straight answers is what you need.

Good Luck

 

[ALCapshaw2]

As has already been said ,your decision ultimately has to come down to when (or if) your AV will need replaced. The difficulty I imagine is the ability to predict when it might deteriorate significantly enough to reach that stage. That has to be what you base your decision on.

I am in a similar but almost oppostite position to you. Bearing in mind I have already had a AVR surgery (so therefore the valve goes much quicker from Mild Regurgitation to severe stage), my valve is now at the stage where it soon will need replaced- but the ascending aorta is 4.5cm - just short of the normal threshold for surgery.

This is a no-brainer though, because if I choose to get the valve done only, I would be almost guaranteed to be back in getting the ascending aorta replaced 5 years or so later. A third OHS? (no thanks )
Not that there are any guarantees, i prefer to kill 2 birds with 1 stone.

Your situation may be much different in that your valve could be working away just dandy for a long time to come. Straight answers is what you need.

Good Luck

Apologies for shifting horses in mid-stream.

Bad Mad: There is NO GUARANTEE that your aneurism will NOT burst BEFORE reaching the "magic 5.0 cm".

Ask our moderator, Ross. He is one of a very few Survivors of a BURST Aneurism (at less than 5.0 cm).

Your good friend,

'AL Capshaw'

 

[Bad Mad]

Apologies for shifting horses in mid-stream.

Bad Mad: There is NO GUARANTEE that your aneurism will NOT burst BEFORE reaching the "magic 5.0 cm".

Ask our moderator, Ross. He is one of a very few Survivors of a BURST Aneurism (at less than 5.0 cm).

Your good friend,

'AL Capshaw'

....as there is no guarantee that I will not die in surgery. That is why I fully understand that timing for surgery is dependant upon risk of prolonging (not having) surgery v risk of actual surgery.

I am happy at this time, my risk of dieing on the operating table is greater, than dieing form a ruptured aortic aneurysm. But thankyou so much for that very direct, but thoughtful piece of information
There is also no guarantee that when I go out for my lunch here; while choking on my chicken sanger, I stumble out onto the street only to get minced by a double decker bus
Perish the thought

 

[Cooker]

Jeez!!!! I just know that I was told the time for surgery (for me) was before symptoms. I have done a bit of gambling in my life and I have won some and lost some. An aneurysm is not something that I would gamble with. If I see a little bubble on a tire it gets replaced. If they told me I had one on my aorta they could not keep me off the table.

 

[Bad Mad]

Jeez!!!! I just know that I was told the time for surgery (for me) was before symptoms. I have done a bit of gambling in my life and I have won some and lost some. An aneurysm is not something that I would gamble with. If I see a little bubble on a tire it gets replaced. If they told me I had one on my aorta they could not keep me off the table.

OHS is also something not to gamble with, especially, if like me you are asypmtomatic, and your time is not quite nigh.
Have to say cooker, bit of a poor comparison!!
A car tyre with a bubble on it going around and round v dilatation/aneurysm on the aorta!! But humerous nonetheless

On another note us "Europeans" (sounds weird!!) are led to believe that some other parts of the world are too quick/agressive in treating AAA's.

Some have to experiences to say otherwise, but then again, some maybe jumped too soon, and didn't make it off the OT. Both scenarios are a gamble and there can always be more than one right answer. IMHO

Considerations have to be: the condition that has led to the aneurysm, the growth rate, BP trends etc. etc.

Not to confuse the person who started the thread, no-one is disputing that your AAA doesn't need fixed. The decision for you is whether or not to get the valve done also.

 

[Karlynn]

My Mom died from a dissected AA. Knowing that and knowing the size of Ross' when it dissected leads me to believe that sooner is better than later, even given the risk of surgery. And Ross is also, a demonstration of the risk of surgery. (Not exactly the kind of Poster Boy he fantasizes about being. )

I know that surgeons are very hesitant to replace functioning working parts, even if defective. But if this is a scenario where it will have to be replaced, personally, unless given extreme caution by the surgeon, I think I'd want it all done while "the chasis is up on the lift", so as not to have to worry about when I'd be heading in again.

My big questions to the surgeon would be: If the valve isn't replaced now, what are the risks to the repaired/replaced aorta when surgery occurs for the valve at a later date? Would the stress of surgery on the aorta affect the bicuspid valve and speed up the stenosis?

Also gdfg, all mechanical valves are intended to last a life time, not just the Carbomedics. St. Jude and On-X also have 100's of years of use in lab testing. The issue arises about needing to replace any mechanical valve regarding how the receivers body assimilates it. For a small percentage, scar tissue is a problem and sometime requires replacement. We have people here who've had to have their mechanical valve replaced do to scar tissue/pannus growth. But we also have members here with lots of years on the older models of mechanical valves. I'm just about at 16 with my St. Jude (implanted at 32 yrs of age) and my last echo showed it looking very well, with no scar tissue encroachment. Carbomedics may be the valve your surgeon prefers - and that's fine. Surgeons have their fav's.

 

[Cooker]

OHS is also something not to gamble with, especially, if like me you are asypmtomatic, and your time is not quite nigh.
Have to say cooker, bit of a poor comparison!!
A car tyre with a bubble on it going around and round v dilatation/aneurysm on the aorta!! But humerous nonetheless

On another note us "Europeans" (sounds weird!!) are led to believe that some other parts of the world are too quick/agressive in treating AAA's.

Some have to experiences to say otherwise, but then again, some maybe jumped too soon, and didn't make it off the OT. Both scenarios are a gamble and there can always be more than one right answer. IMHO

Considerations have to be: the condition that has led to the aneurysm, the growth rate, BP trends etc. etc.

As far as "Europeans" feeling that others jump to quickly that could come from the fact that we (Americans) seem to be able to see a doctor much quicker. I have gotten to know several across the pond and many of them have had to wait for appointments, echo's etc WAY to long IMHO.

As far as not making it off the table....BS. I would not think that how soon someone has OHS after the problem is diagnosed has a thing to with mortality.

I also have spoken with members who waited to long and now, after surgery have not enjoyed the return to normalcy that some have.

My comparison may be humorous but your stand could be dangerous.

 

[ALCapshaw2]

....as there is no guarantee that I will not die in surgery. That is why I fully understand that timing for surgery is dependant upon risk of prolonging (not having) surgery v risk of actual surgery.

I am happy at this time, my risk of dieing on the operating table is greater, than dieing form a ruptured aortic aneurysm. But thankyou so much for that very direct, but thoughtful piece of information
There is also no guarantee that when I go out for my lunch here; while choking on my chicken sanger, I stumble out onto the street only to get minced by a double decker bus
Perish the thought

To help in making the decision of WHEN (Not IF) to have surgery, you would probably benefit by knowing a couple of numbers / statistics.

I suggest you ask your surgeon for his M&M (Mortality and Morbidity) numbers for Aneurism Repair BEFORE bursting vs. his M&M numbers AFTER bursting.

You might also want to know the percentage of aneurisms that burst before reaching 5.0 cm.

Believe me, I am not saying these things to be mean.
I understand 'trepidation of the knife' (after 2 OHS's and facing a 3rd) BUT, the statistics are GREATLY in favor of Early Intervention, especially for First Time Surgery (typically 98% successful).

You do NOT want to go through what Ross endured after his burst aneurism. He barely made it, twice. ASK HIM!

'AL Capshaw'

 

[Ross]

Mine burst at around 4.7 while I was waiting for the magic 5 to arrive. Now, I have a 3.6 in my abdomin and I can tell you I just want it taken care of and taken care of now, but once again, were waiting on that damn number 5. How in the world do you think I feel? Knowing what I know now, I want no part of these things in me anymore.

 

[Bad Mad]

As far as "Europeans" feeling that others jump to quickly that could come from the fact that we (Americans) seem to be able to see a doctor much quicker. I have gotten to know several across the pond and many of them have had to wait for appointments, echo's etc WAY to long IMHO.

As far as not making it off the table....BS. I would not think that how soon someone has OHS after the problem is diagnosed has a thing to with mortality.

I also have spoken with members who waited to long and now, after surgery have not enjoyed the return to normalcy that some have.

My comparison may be humorous but your stand could be dangerous.

wasn't being pompous when I said "we europeans" Cooker
And you are right as regards the private health serice that you have in america does allow for quicker appointments etc. That wasn't meant to be a pop at american surgeons. The private health system is undoubtedly a more efficient one. That is not in any way a slight against the doctors here, but more so the system they are operating under.

I'm not sure what this means: "As far as not making it off the table....BS. I would not think that how soon someone has OHS after the problem is diagnosed has a thing to with mortality."

I really don't see how my "stand" is dangerous, and I do believe that you must be misconstruing my post.
I didn't make a stand but rather made the point that risk of surgery v risk of not has to be a consideration. And of course any symptons.
I simply tired to show that there are two sides, and I am wholy confident in the remarks that I made, mostly I might add, to my own situation.
In fact my initial post was in reply to the person whom this thread was intended, the others were in response to other comments made. I think I made that clear.

Who said about waiting TOO long? Once again, maybe my you haven't understood my post. Timing is extemely important IMHO, and a very difficult thing to get right. Believe it or not my instinct (for mew personally) is sooner rather than later, for the very reason you have pointed out. You see the comments I made were not neccessarliy what i would do or what I think is right but rather what things a person should consider. I have no preferences for valves, types of operations, but simply think that people should always get a balanced picture

 

[Bad Mad]

To help in making the decision of WHEN (Not IF) to have surgery, you would probably benefit by knowing a couple of numbers / statistics.

I suggest you ask your surgeon for his M&M (Mortality and Morbidity) numbers for Aneurism Repair BEFORE bursting vs. his M&M numbers AFTER bursting.

You might also want to know the percentage of aneurisms that burst before reaching 5.0 cm.

Believe me, I am not saying these things to be mean.
I understand 'trepidation of the knife' (after 2 OHS's and facing a 3rd) BUT, the statistics are GREATLY in favor of Early Intervention, especially for First Time Surgery (typically 98% successful).

You do NOT want to go through what Ross endured after his burst aneurism. He barely made it, twice. ASK HIM!

'AL Capshaw'

I have already uncovered several studies which show these statisitcs. If I get time some day, I'll go look for them again and post. I'm disappointed that you assumed that I hadn't As for the surgeons stats, Yes I also have them too. So my remarks are not 'flippant' as seems to be the feeling They were based on percentages.
MY surgery is not the concern/issue as I am comfortable with the actions in hand

To be fair,this thread was started by a person looking for thoughts and support for their situation. Perhaps we should try and re-gain the focus, intead of talking about me

 

[Ross]

gdfd how old are you?

I want to say stay with your native valve as long as possible, but there is no way to predict how long it will last and given a shot at one surgery could hasten it's decease. Man it's tough call. I honestly don't think you want to go through another surgery when this can all be taken care of at once.

 

[briansmom]

This thread has gotten a little bit hi-jacked by those of us who are paranoid about dissections...
You have an extremely tough choice and I think that you have received some good advice above. I think that I personally would use a 5-7 yr cutoff. If the docs think that your valve will last at least that long, I would probably keep it. The good news about the valve versus the aneurysm is that if the aneurysm goes, you probably die; valves tend to go in a nice orderly fashion and give you plenty of warning. Again, I think this is a tough choice with no "right" answer. Whatever you decide will be the "right" decision. Good luck and keep us posted.

 

[WayneGM]

I can't add anything more. It's a tough choice. Good luck with your decision.

 

[Bina]

GDFD, I hope that you are not too freaked out by the turn in this thread.
Thankfully your aorta is going to be repaired, just focus on information about your bicuspid valve.
You have a difficult decision for a 35 yr old and don't need extra stress.

I believe that you are having OHS at the same hospital as me, are you able to have a discussion with my surgeon? He is chief of surgery and may offer another view point.
Please keep in touch.