If it wasn't for Bad Luck I wouldn't have any Luck at all.

[RandyL]

Well as some of you know I recently needed clearance from my Cardio to have back surgery(that I still believe was caused by my OHS) and after several tests Echo(in office), Echo(in hospital), TEE(in hospital) I was cleared for the back surgery but was told to consult with my surgeon about my Echo and TEE results afterwards.

TODAY WAS THE CONSULT.

My new St Jude valve is leaking do to PANUS at a moderate to severe rate.For those of you who don't know what Panus is, it is when scar tissue has grown on my valve hindering its performance to close properly, thus creating leakage otherwise known as regurgitation.

Here are tthe outcomes of my valve according to my surgeon
1. It won't get better and surgery will definately have to take place again.
2. It might happen soon.
3. It might take a while for this to happen
4. If I ignore this and do nothing as it gets worse I will end up with CHF(same senario as bad aortic stenosis valve)

Basically the way I see it I am in the exact same place I was 9 months ago only not at a risk of falling over dead tomorrow. This will be my 3rd OHS this year if I choose to go ahead now. It will be the 4th time I will go under general anthstesia this year.(TALK ABOUT PUMP HEAD )

I really don't know what to do( Why do we always have to make these decisions? Can't the Doc make them for us? Just LIE about it or something, sure would be easier)

I would ask you fellow valvers if this happened to you today, what would you do?
1. Go for the operation?
2.Take a wait and see attitude?
3. Get Drunk and forget about it?

Oh yea and my sew ring is leaking too.

I think I will make a poll and put up some fishing pics to give Dennis a run for his money.lol J/K Dennis I love your pics, you really have some talent there.

P.S. For having a leak my St Jude would definately beat out Big Ben in a ticking contest right now.

 

[Nancy]

Wow, I was so sorry to read this. You have been through so much this past year. Don't know what to say about any decisions you have to make. Just wanted to tell you that you will be in my thoughts and prayers as you think things through. I hope you are getting a second opinion.

 

[geebee]

Randy,

I have had the same problem and that was the cause of my second and third OHS. The problem with waiting is the scar tissue can break off and cause TIAs and possibly worse. I was having quite a few TIAs before my third surgery and the doctors feel that some of them might have been due to the scar tissue.

The other problem I had and, therefore I guess others could as well, is my valve was actually sticking shut. When the valve was actually explanted in 1994, the surgeon and my SO were examining it and there was so much scar tissue that the leaflet actually got stuck in the middle of it. There were times when I had to cough hard to make the valve come unstuck.

I am sorry you have to go through this since you have had way more than your share of crap. However, I am sure you will need to have the scar tissue removed.

Incidentally, after my second OHS I did a lot of research to try and determine why I was prone to the scar tissue build up. I was diagnosed as having "anti-heart" antibodies due to Dressler's syndrome. I was put on a one-year regimen of steroids. The doctors feel the scar tissue build up decreased significantly which is why I did not have to have another surgery for 12 years. I am hoping I have seen my last OHS.

I am praying for you.

 

[Marguerite53]

Gee. This is a conundrum. I can't even imagine this, and you sound so calm.

I have no choice in your vote, although having a few drinks and distancing yourself from the news might gain you some perspective.

I think I'd let the information process in you for awhile. Maybe get a second opinion? Then I guess it's all about timing.

I'm so sorry. My thoughts are with you. Keep us posted.

Marguerite

 

[RandyL]

Randy,

I have had the same problem and that was the cause of my second and third OHS. The problem with waiting is the scar tissue can break off and cause TIAs and possibly worse. I was having quite a few TIAs before my third surgery and the doctors feel that some of them might have been due to the scar tissue.

The other problem I had and, therefore I guess others could as well, is my valve was actually sticking shut. When the valve was actually explanted in 1994, the surgeon and my SO were examining it and there was so much scar tissue that the leaflet actually got stuck in the middle of it. There were times when I had to cough hard to make the valve come unstuck.

I am sorry you have to go through this since you have had way more than your share of crap. However, I am sure you will need to have the scar tissue removed.
Incidentally, after my second OHS I did a lot of research to try and determine why I was prone to the scar tissue build up. I was diagnosed as having "anti-heart" antibodies due to Dressler's syndrome. I was put on a one-year regimen of steroids. The doctors feel the scar tissue build up decreased significantly which is why I did not have to have another surgery for 12 years. I am hoping I have seen my last OHS.

I am praying for you.

My surgeon said they generally canot remove the scar tissue because most of it is on the inside, so they have to take the valve out and they put another one in, which brings up another decision same valve or different one this time. I made a post about human heart valves which my surgeon brought up as maybe a way to go this time.

 

[geebee]

My surgeon said they generally canot remove the scar tissue because most of it is on the inside, so they have to take the valve out and they put another one in, which brings up another decision same valve or different one this time. I made a post about human heart valves which my surgeon brought up as maybe a way to go this time.

That's interesting. Maybe the St. Jude is different than the old Bjork-Shiley in how it is accessible. The surgeon felt that he got all of the scar tissue removed during my second OHS. I had the valve explanted during the third OHS since it had been recalled and I decided to get it out as long as we were in there. Otherwise I might have gone with tissue removal again.

You certainly have a tough choice to make. Perhaps you can find out if your surgeon feels this will continue to happen. If so, and there are more surgeries in your future anyway, you really might want to consider tissue.

 

[Ross]

With all you've been through already, I cannot even begin to place a poll vote. Deep down, you know the answer. Whether or not you like that answer is what's troubling. I'm somewhat in the same position, only not with the replaced valve. Deep inside, I have serious reservations about another OHS. I wish I could wave a magic wand and make it all better, but I'm not that kind of angel.

 

[mtkayak]

Man, Randy I'm so sorry to hear that. I was hoping that it was nothing. You have had some tough times this year and you still have a great attitude. I would probably have a couple of drinks tonight and get a second opinion soon. Good Luck, I'm praying for ya!

 

[aussigal]

Gosh Randy...
I was hoping that it wasnt going to come to this so soon...
I too would take time to digest and get used to the idea before signing-up for another surgery...
A few drinks sounds like a good idea...I think you have earnt that...
I'm praying for you...

 

[tobagotwo]

Unhappy news, Randy. I'm sorry this is coming back at you again. Is there any timeline associated with it at this point? Would it be reasonable to wait a bit and get fully normal again first?

Best wishes,

 

[tigerlily]

Randy,

I just read your post. You do seem very calm and steady in the face of this news. I'm so sorry you have to deal with this. I don't have any advice except that I'd probably be weighing how strong my body was feeling from the last surgery against how long I could postpone this surgery safely.

I'll be praying for you also.

 

[Karlynn]

Randy, I'm so sorry to read that your worries have become reality.

My first inclination would be to get it done and get it over with. But then Geebee brings up a good point - what is causing the formation of the scar tissue? This might be something that you should look into pretty deeply and see if there is some sort of acceptable answer. I would think that this information would then help you to make a valve decision as well.

If your doctor now just gives you the "it's just one of those things" answers, look further. Maybe it is "just one of those things", but I'd want to be pretty darn sure there isn't some sort of cause they can pinpoint before I would accept that statement. The answer could lead you in a different direction than you are first inclined to head.

 

[Phyllis]

So sorry to read this post, Randy, but I admire your sense of calm. I would opt for some time to think it all over and give your body a chance to recover and most definitely get a second opinion. Sending you our best wishes.

 

[davidfortune]

Randy,

Straight up - that sucks! I tend to agree with Ross. I think the question is timing. How long is it safe to wait. I would definitely get a second opinion from a well respected card and surgeon. Just for peace of mind if nothing else.

I would start asking/researching if tissue valves have less scar tissue formation. Also On-X marketing literature states it is longer and has leaflet protecting protrusions. Ask your doctors about info on valve performance with scar tissue.

I would also ask about geebee's post regarding steriod treatments. Might that postpone a redo?

tobogatwo seems to be our leading research guy (No intended pressure on you Bob). Have you seen any info related to valve type vs. scar tissue?

Could scar tissue be related to the skill of the surgeon? I go in for surgery consult on Friday with William Ryan - I'll ask. Thoughts on this anyone?!!

Good luck Randy. Have a drink or two (in moderation of course). Go catch some fish (as soon as the back allows). Play some poker (if that's your game) and get away from it for a minute if you can. Take a little time to clear your head and then talk to another doc.

Be strong.

 

[ALCapshaw2]

Dear NO LUCK -

How far are you from the Cleveland Clinic of Florida (or whatever they are called now)?

Alternatively, you might want to consider the On-Line Second Opinion Service of the REAL Cleveland Clinic (in Ohio). Or even a visit to Cleveland for an 'Up-Close and Personal Inspection'.

BUMMER... I like the 2 drinks idea..

'AL Capshaw'

 

[ALCapshaw2]

After re-reading your signature line,
I think I'd definitely be looking for another surgeon,
regardless of his reputation or stats.

'AL Capshaw'

 

[Arlyss]

Randy,

My husband's mechanical valve was being "watched" because of an increased pressure gradient across it that was thought to be from pannus or scar tissue formation. His valve was a bit confusing because it still opened and closed without problem. It seemed like it should have been a scenario as you have described, where gradually one is back in aortic stenosis due to the narrowing of the opening, and the heart will experience CHF unless there is intervention. (By the way, when the valve was taken out there was scar tissue that had grown around it.)

However, at some point fine, hairlike strands of tissue grew off the bottom or heart-facing side of the valve. Unknown to anyone, they were floating in the blood stream. One day, without warning, my husband had a very large stroke - some of these strands that no one knew were there had broken off and gone to his brain. There are some medical papers about strands and I have read them all - but there is not nearly enough information. They are difficult to detect, and they are associated with strokes - in the papers, they often find them after the fact when looking for the reason someone has had a stroke.

Whether or not strands might form at some point, as Geebee mentioned, the pannus itself might become a source of stroke. I also wonder if the pannus might make it easier for blood clots to form, as the blood will not be flowing through the valve as it was originally designed to work.

I am so sorry you had so many complications earlier this year. Getting additional opinions of other surgeons would give you more information. Since you were complicated the first time, you need a surgeon that sees lots of complex patients. There are some very difficult risk factors to balance here.

I am wondering why your own aortic valve failed? Was it bicuspid? I am wondering if my husband's "special BAVD tissue" contributed to his problem....
it is a question that has no answer today.

Arlyss

 

[901]

I agree with Al! I think you need to be planning a trip to Cleveland in the near future.

 

[Mb]

Dear Randy:

Good grief.

At first I was going to strongly suggest a gin and tonic, or maybe three or four of them. Then, I thought about getting down on your knees for say a year or so, and then lastly I thought about getting 10 or 20 more opinions.
What a conundrum. With SUCH serious consequences.

I'd take it slow, and careful. But I would not delay getting the information you need to make an informed choice. Best wishes.

Marybeth

 

[Arlyss]

Sewing RIng Leak

Sewing RIng Leak

I noticed you mention there is leaking around the sewing ring also. That should not be happening if the initial procedure had gone well. You have had your valve such a short time, I wonder if it is really pannus or not? Something is clearly not right with the valve, and you need expert eyes to evaluate it. Are your aortic root and ascending aorta enlarged at all?

If this were myself or my husband I would search for the very best this time, no matter how far I had to travel to get to them....

Arlyss