It's push time.

[brunoandbear]

Well, I'm stumped and can't make up my mind. My Cardiologist refuses to give me a push in one direction or the other, one Surgeon says to get a Carbomedics and because of my age (33), a tissue valve will calcify in 5 - 10 years requiring it to be replaced again. The other surgeon, based on my TEE today, seems to think my bicuspid valve is very spareable and repairable given it has very mild leakage (which he thinks he can fix), and gives me a 94-95% chance of it being fine for 10 years, beyond that, he doesn't know because this procedure is so new they do not have any data that goes longer than that.

So, I can't decide. I want to fly, specifically aerobatically very badly, and also do not want to give up martial arts just yet (though, with a dacron aorta graft, I don't know how that will hold up to kicks and punches in the chest), but - I don't want my family to have to deal with all the stress of me having surgery again way too soon. The downside to a repair is I will _still_ have a bicuspid valve and I will still have about 1.78 cm of flowspace, so I won't be a super athlete, unlike what might happen if I get a 3.5+cm flowspace with a new valve. I've always envied people who can just run for miles and miles. My ventricle is also on the upper end of its size, so there is some mild enlargement there already.

Tough choices. Anyone else face things like this when picking a valve? I'm about ready to give it up to the great man above and tell him to decide (well, I already have), tell the surgeon who thinks he can fix it to do it, but if he can't, put a mechanical in.

I don't know the true odds though. Anyone have any input or ideas on how long these things might last me?

 

[kfay]

A native valve, if repairable, is going to be better than anything else you put in there. I'm certain that if your surgeon tries to repair and doesn't feel that the repair is good and going to last, he would go ahead to your plan B. There are several of us on here who have had multiple surgeries, including myself, and even though it is not my favorite thing to do, I didn't have the experience that Dyna did and so am not that adament about doing something at all costs that would ensure me to not have a repeat. By the way, just because you go mechanical doesn't mean it will never have to be replaced again, unlikely, but not a definite.

Go with your gut, but have a back up plan that you can live with. Good luck.

 

[Ross]

Personally, I think your long term life is much more important then aerobatic flight or martial arts. Of course, that's my opinion. With that being said, maybe you should just turn it over to your higher power and let be what may be.

 

[brunoandbear]

Yes, that is what I have done. I'm praying for an answer and I know he will provide one with time.

 

[Jkm7]

I'm in agreement with Kfay. My surgeon hoped for a repair but he knew during surgery it was not going to be a good one and went to my Plan "B" which was tissue valve. I told him I knew going into this second surgery exactly what I was facing and was still willing to face the (unlikely) need for my chest to be cracked. My experiences with both OHS were not nearly as awful as some others endured and I am very grateful for that but having tissue valve mattered enough to me to making that fully informed choice.

Whichever you choose, never look back. Never second guess yourself.
Have this frank conversation with you surgeon IMO and make it clear to him your feelings about a re-op. If he thinks he can get you a good repair, I'd go for it. Native is always preferable.

 

[tobagotwo]

To be honest with you, with a current aneurysm at your age, I would heavily consider getting the valve replaced now, even if it's repairable.

There is a fairly good chance that you could have tissue problems (myxomatous tissue), and it would seem reasonable to get a permanent, well-entrenched valve into place as early as reasonable.

I would definitely look into the On-X mechanical valve as an option, however. There is a good possibility that it will be cleared for less anticoagulation and even some chance that it could eventually be cleared for none (or aspirin).

Nothing wrong with the Carbomedics unit, but wouldn't you like to have a possible long shot at winning the ACT lottery?

Best wishes,

 

[BDMc]

I wouldn't worry about the dacron. I think the danger is developing another aneurysm somewhere else. My docs said no more contact sports, but views may have changed. I would ask the surgeon what he thought about a back up valve choice if the repair isn't feasable once he gets in there. ATS and ON-X see to be leading the way for lower dose ACT. I am not convinced we are near a no warfarin valve. Keep us posted. Brian

 

[olefin]

Tough choices. Anyone else face things like this when picking a valve?

It wouldn't be any tough choice for me or anyone that had complications from valve surgery. One in a lifetime is more than enough for me.

 

[TFBruce]

If you have not looked into the Ross Procedure, please do. Weigh all your options, not just those that are familiar.
Just my two cents,

 

[brunoandbear]

One of the surgeons, Dr. Kauten (of the two I have talked to), was the first surgeon in the state of Georgia to perform the Ross Procedure - it actually is one of his specialties. He did not though when I met with him suggest it. From what I understand, it takes an extremely talented surgeon to perform it - am I correct understanding that?

 

[TFBruce]

I would say yes, definitely. I believe there are extremely talented surgeons in Ohio, performing Ross. I know of 3 here in Texas, one being my surgeon, John "Chip" Oswalt. There are certainly benefits to the Ross, especially at your age. You may want to ask if you are a good candidate.
Best of luck in your decision,

 

[Megan]

hi! im new here but i have some first hand info for you! i am 38 and have had 2 valvuloplastys (where they just open up your sticky bicuspid) i was 12 and 20- then i had my third surgery when i was 29..so i got 7 and 9 years out of that procedure. then i got a bovine pericardial valve 9 years ago- almost 10..the surgeoun told me then that since i was young and wanted to have kids he estimated 7-10 years so he was spot on. i had 2 kids on this valve so im doubly blessed. but now its time to replace the valve aggain- inthe next two months...and im in your shoes too! i really dont want a mechanical-dontwant to deal with coumadin, scared of the ticking, etc...but since ill have had 4 surgeries im scared of scar tissue being an issue on a 5th surgery if i go for another tissue valve. but honestly at this point im leaning towards it-- i figure if i got 10 years with 2 kids --and im not having more kids! i might get 15-20 more years before a 5th! i know its hard---i agree leave it up to go but you should also educate yourself on all pros cons too so you can speak what you wish tothe surgeoun... best of luck...megan

 

[Lynlw]

Hi Megan Welcome, You should also start your own thread, so everyone sees you and can say hi, Lyn

 

[Megan]

hey thanks! i will as soon as i figure out what a thread is!

 

[DeWayne]

since my first surgery on my aortic valve predated the time of valve replacement I would myself opt for repair. My first "repair" lasted 47 years and I was told if not for my aneurysm I would not have needed the operation yet for just the valve. I don't care if you get a tissue or a mechanical valve, both could result in further surgeries just as easily as a repair. I know people keep saying a mechanical valve lasts a lifetime but I sure seem to see quite a few that have had mechanical valves and still required further surgeries. So no way is 100% you are done for the rest of your life. Quality of life is just as much an issue as any other part of the equasion.
Now that I have weighed in the ultimate choice is yours, you just have to make it and then put it out of your mind as having made the right choice for you. The valve choice for me was the hardest part of getting ready for surgery. Once I made it I relaxed and got ready and things progressed smoothly from there on out.

 

[Lynlw]

hey thanks! i will as soon as i figure out what a thread is!

Go to the top of a section, like say "heart talk" at the top of the list of thread is a button that says new thread click on that and you can start a thread.

 

[brunoandbear]

Did your first repair DeWayne require your valve to be put into a sewing ring? That is a long time for it to last.

I just got the results of my TEE and they confirm I have very very mild enlargement of the chamber connected to the aortic valve - the one thing I worry about is, if they repair the valve, will it stop the enlargement? The surgeon is going to clean it up a bit, which has very mild leakage, but it sounds to me like he wont be increasing the area that blood can flow through, nor turning it into a tricuspid valve.

I really want to opt for a repair, and if it can't be done, have them put in a mechanical, thus placing it in God's hands. The only variable is the mild enlargement - I don't want that to get any worse over time.

 

[Ross]

Did your first repair DeWayne require your valve to be put into a sewing ring? That is a long time for it to last.

I just got the results of my TEE and they confirm I have very very mild enlargement of the chamber connected to the aortic valve - the one thing I worry about is, if they repair the valve, will it stop the enlargement? The surgeon is going to clean it up a bit, which has very mild leakage, but it sounds to me like he wont be increasing the area that blood can flow through, nor turning it into a tricuspid valve.

I really want to opt for a repair, and if it can't be done, have them put in a mechanical, thus placing it in God's hands. The only variable is the mild enlargement - I don't want that to get any worse over time.

It may or may not. Most of the time, if intervention occurs early enough, it will reduce to normal size. Mine was left go for too long and mine is irreversible.

 

[DeWayne]

Did your first repair DeWayne require your valve to be put into a sewing ring? That is a long time for it to last.

I just got the results of my TEE and they confirm I have very very mild enlargement of the chamber connected to the aortic valve - the one thing I worry about is, if they repair the valve, will it stop the enlargement? The surgeon is going to clean it up a bit, which has very mild leakage, but it sounds to me like he wont be increasing the area that blood can flow through, nor turning it into a tricuspid valve.

I really want to opt for a repair, and if it can't be done, have them put in a mechanical, thus placing it in God's hands. The only variable is the mild enlargement - I don't want that to get any worse over time.

No ring. In 1959 they didn't have a whole lot of technology to go by! Just cut, and as my cardiologist put it "shove a finger in, wiggle it around, and sew you back up". For me having you own human valve, if that can work, is better than any other option.

 

[gustaf]

The downside to a repair is I will _still_ have a bicuspid valve and I will still have about 1.78 cm of flowspace, so I won't be a super athlete, unlike what might happen if I get a 3.5+cm flowspace with a new valve. I've always envied people who can just run for miles and miles. My ventricle is also on the upper end of its size, so there is some mild enlargement there already.

Could you explain a bit how you can get so different flow spaces with a repair and a replacement? Also, would it really affect the athletic performance in such a way anyhow?

The reason for asking is that I had an AV repair + graft, but have lost a lot of performance afterwards rather than gained, which of course was what I had hoped for.

::g