More numbers, more confusing info. Help!

[67walkon]

You people are a God send and a wealth of wisdom.

I am a 57 year old very active male with a BAV and a history of paroxsymal afib (quiet for more than a year now!)

Yesterday, I had my consult at Shands with Dr. Beaver, a surgeon. The CT scan shows my ascending aorta at 5 cm; a prior one in October, 2005, had it at 4.3 cm. My valve is down to 1 cm. The valve had "mild" stenosis 2 years ago on an echo, but I don't have the actual size. I know it has progressed quite a bit.

I am still asymptomatic. Dr. Beaver hasn't given me a full report and has to call me because they had an emergency aneurism when my wife and I were meeting with him. He basically says I'm boderline on both the aorta and valve and that he would prefer to do the surgery, along with a full maze procedure, while I still asymptomatic and healthy. Both he and the local cardiologist have said I should expect symptoms to appear anywhere from 6 months after the last echo (which was early March, I think) and 2 years; Dr. Beaver seemed to doubt it would be anywhere close to 2 years. His feeling seems to be not to push it and get it done earlier rather than later.

My wife and I are talking about late summer, maybe early September.

What are your thoughts?

 

[Phyllis]

It sounds like it's time and much better to do it before symptoms start!

 

[Ross]

You are at the threshold now. 5.0 is surgery range where a dissection is more likely then the danger of surgery. You should be scheduled asap to have it fixed.
Waiting for symptoms is the same as saying waiting for heart damage to be done. Don't wait.

 

[Fast Eddie]

Yep...seems to be time

Yep...seems to be time

You people are a God send and a wealth of wisdom.

I am a 57 year old very active male with a BAV and a history of paroxsymal afib (quiet for more than a year now!)

Yesterday, I had my consult at Shands with Dr. Beaver, a surgeon. The CT scan shows my ascending aorta at 5 cm; a prior one in October, 2005, had it at 4.3 cm. My valve is down to 1 cm. The valve had "mild" stenosis 2 years ago on an echo, but I don't have the actual size. I know it has progressed quite a bit.

I am still asymptomatic. Dr. Beaver hasn't given me a full report and has to call me because they had an emergency aneurism when my wife and I were meeting with him. He basically says I'm boderline on both the aorta and valve and that he would prefer to do the surgery, along with a full maze procedure, while I still asymptomatic and healthy. Both he and the local cardiologist have said I should expect symptoms to appear anywhere from 6 months after the last echo (which was early March, I think) and 2 years; Dr. Beaver seemed to doubt it would be anywhere close to 2 years. His feeling seems to be not to push it and get it done earlier rather than later.

My wife and I are talking about late summer, maybe early September.

What are your thoughts?

Going from 4.3 to 5.0 in 1.5 years is a pretty big increase. And 5.0 seems to be the pont at which lots of docs deem surgery necessary.

You and I are similar in age (I'm 60) and activity level. Since our health doesn't get better as we age, it would seem logical to do it earlier rater than later. The younger and healthier you are the easier recovery is likely to be.

Keep in touch

Ed "Fast Eddie" Friedman

PS
Tuesday is it for me

 

[67walkon]

The doc said 5.5 was the point at which surgery was absolutely necessary, although 5.0 was the point for people with family histories of a problem. I think it's probably right on the border, just like my valve.

It is just so hard to reconcile myself to that kind of surgery and that kind of recovery when I feel so good.

After reading some of the replies, I'm starting to worry that late August or early September might be too long to wait.

This is very stressful, isn't it?

 

[Ross]

Yes it is stressful. Your a walking time bomb that could go off. I was the same and wasn't so lucky. Mine blew. You do not want to go there!

Our bodies are amazing. You may well have symptoms that have gradually deteriorated and have been compensated for by your heart. You may not even recognize it until after your repair.

 

[Fast Eddie]

Stress..

Stress..

The doc said 5.5 was the point at which surgery was absolutely necessary, although 5.0 was the point for people with family histories of a problem. I think it's probably right on the border, just like my valve.

It is just so hard to reconcile myself to that kind of surgery and that kind of recovery when I feel so good.

After reading some of the replies, I'm starting to worry that late August or early September might be too long to wait.

This is very stressful, isn't it?

Once I did all the research I could and came to grips with the consequences of choosing the On-X valve I have not felt any overt sense of panic or undue stress...YET. But it's only Friday and I don't go until Tuesday.

And I feel like I've been dancing with the Devil for a good long time with a 5.4 cm aneurysm in my chest. Absolutely NO symptoms whatsoever. I also asked about delaying until September. My surgeon did not want me to delay that long with the aneurysm at that size.

I firmly believe that being 'young' and in pretty good physical condition will help me make a speedy recovery. And I have a lot of good thoughts and support coming to me from folks on this site and my family and friends. I have taken comfort from many posts on this site about what to expect during recovery.

So I am trying real hard NOT to think about any of the bad things that could occur, but am going to try to keep focused on having an easy recovery and a quick return to biking and other physical activities.

I think you will also have a smooth recovery

Fast Eddie

 

[67walkon]

Eddie, I didn't realize you were that soon! Try to have a good weekend and not worry too much about it. I'll go for a nice 50 miler or so in tribute to you and pray for a successful outcome.

The doc emailed me some stuff. So far, he is okay with the bike if I keep the HR down. That's ok because I can go 17 or 18 mph and never get above 130 or so. But, he says no weight lifting over 30 to 40 lbs and no basketball, which I love to do with my buddies once or twice a week. That alone will force me into surgery!

I guess I'm looking at late summer, unless he moves me up. I'm signed up to ride BRAG in June, but I think the longest day is maybe 75, which I did 2 days in a row on the MS150 two weeks ago, so I should be okay, so long as I take it relatively easy. Its a ride, not a race!

Keep us posted.

 

[Fast Eddie]

I appreciate your thoughts

I appreciate your thoughts

Eddie, I didn't realize you were that soon! Try to have a good weekend and not worry too much about it. I'll go for a nice 50 miler or so in tribute to you and pray for a successful outcome.

The doc emailed me some stuff. So far, he is okay with the bike if I keep the HR down. That's ok because I can go 17 or 18 mph and never get above 130 or so. But, he says no weight lifting over 30 to 40 lbs and no basketball, which I love to do with my buddies once or twice a week. That alone will force me into surgery!

I guess I'm looking at late summer, unless he moves me up. I'm signed up to ride BRAG in June, but I think the longest day is maybe 75, which I did 2 days in a row on the MS150 two weeks ago, so I should be okay, so long as I take it relatively easy. Its a ride, not a race!

Keep us posted.

For the last couple of weeks I have been doing 'pansy' rides, not letting my heart rate go above 110 - 115. As a result of that the good cardio conditioning that I used to have is slipping rapidly. My resting heart rate went from about 48 to somewhere in the 50s. So I'm eager to get this done with and get back into some kind of shape.

I plan to start posting again when I get out of the hospital. I may start up a blog to keep track of my recovery. If I do and I am using it regularly I'll post the URL.

Have fun on the rides. I'm envious.

Fast Eddie

 

[tobagotwo]

I like your cardiologist's attitude. Personal observaton is that your general risk is lower, you will recover more quickly, and you are more apt to recover fully if you have the surgery before you're badly symptomatic. I completely agree with his viewpoint.

As far as waiting: the worse it gets, the faster it gets worse. If you wait around, what is it that you'd be waiting to see? Whether he was right?

I say, "Git it while the gittin's good."

Best wishes,

 

[ALCapshaw2]

Ross told you that his BLEW. He is one of the SMALL percentage (around 10% I think) that actually survive a ruptured aneurism.

What he DID NOT tell you is that it Blew at LESS THAN 5.0 cm (4.8 if I remember correctly).

You KNOW you need to 'get fixed',
it will NOT get Better,
and it COULD get WORSE, MUCH WORSE.

The morbidity and mortality rates for First Time Valve Surgery for patients under age 60 is 2%.

WHAT ARE YOU WAITING FOR ???

'AL Capshaw'

 

[Arlyss]

Timing of surgery based on size of aneurysm is a very important topic. First of all, the size alone is not the only criteria, but it is certainly an important one.

Other criteria include rate of growth, family history, body size, whether there are symptoms or not, the underlying condition (BAVD, Marfan, etc.)..... All are factors regarding aneurysm surgery timing.

All that anyone has to go on are statistics re. what has happened to other people. These statistics are no doubt incomplete, but all that we have.

This is because currently there is no way to "see" how thin and stressed the aortic wall really is. I believe there are some medical engineers looking for a way to measure the tension/stress on the aortic wall, which is thought to be a more accurate indicator of the risk of tearing/rupture. It would be great if that could be measured and criteria set up to guide surgery decisions - but we don't have that today.

I can also tell you that when the aneurysm is removed, surgeons find that the same size aneurysm will not always have the same characteristics - some tissue is much thinner and more fragile than others. But of course, this is only seen during/after surgery.

I know someone whose aorta dissected and almost cost him his life at about the same size as my husband's aneurysm (around 5.1 - 5.2cm). Why did one man's aorta tear and the other did not? Aortic tissue can be unpredictable. For BAVs, in skilled hands with a solid track record, the stats should indicate the risk of waiting is greater than the risk of surgery at around 4.5 cm. This is what some surgeons/centers are offering now.

If it were my aorta, I would want to know why it is being suggested to wait to larger sizes if I am a BAV. If it is because the risk of surgery is higher, I would seek out an aortic surgeron who can offer aneurysm surgery with a lower risk. I would not wait until my aorta tore or ruptured!

No one is in a position to tell the aorta what it can and cannot do - in some people, it will tear or rupture at smaller sizes. More lives are saved when surgery is offered sooner to these people, rather than telling them to wait to reach a larger size - but it takes a skilled aortic surgeon to do it!

Best wishes,
Arlyss

 

[67walkon]

The surgeon isn't taking a wait and see approach. He suggested sooner rather than later and seems to be okay with late summer; late summer was our suggestion, to accomodate some other things. The surgeon's assistant will start working on scheduling next week. It could be much earlier, but he seemed okay with late summer, with the restrictions he put on me.

I hope my time bomb doesn't blow, but he seems to think the risk is low.

 

[jkn2kids]

I waited 3 years with a BAV,a 4.8 cm aneurysm.I'm 47 and had a mechanical valve and aneurysm repair with little or no problems.My surgeon also looks for holes in the heart before he closes and found that I had a hole in my heart.Everyone should mention to their surgeon about checking for holes.I didn't have any symptoms before surgery (so I thought).I had less energy and stamina prior to my surgery 2 months ago.I would get it done as it drove me crazy for 3 years.

 

[ALCapshaw2]

Walkon -

SYMPTOMS usually mean that something BAD has already happened, and it MAY NOT be repairable / reversible even with a successful surgery.

Did you read the thread started by "QueenVictoria" on her son Scott? HIS aneurism measured 5.0 before surgery, BUT when the surgeon got in there, it was found to be LARGER than expected.

You may want to get a second surgical opinion.
I recommend that you ask about the Risks of Waiting
versus the Risks of proceeding with surgery ASAP.

Several of our members also reported that the condition of their valves were much worse than expected once inside, some even reported their valves 'disintegrated' in the surgeon's hands.

Bottom Line: When the NUMBERS say it's time to 'fix the plumbing' it is usually best to proceed. Waiting for symptoms only guarantees that your heart will be in WORSE condition at the time of surgery.

'AL Capshaw'

 

[Ross]

I hope my time bomb doesn't blow, but he seems to think the risk is low.

Not that it will happen to you, but never even made it to 5.0 before it ruptured. I guess I'm trying to convey not to push it.

 

[67walkon]

This topic scares me, and rightfully so. I'll talk with the surgeon and the local doc next week and see what they say. My impression is that I am pretty safe for at least another 6 months or more, so long as I don't lift weights, sprint, etc. I don't know that I can get an "elective" surgery scheduled much earlier than July or so with the insurance issues, the doctor's schedule and all that.

Does it make any difference that they used a 64 slice CT machine and it didn't seem to show any weakness or balloning or anything?

 

[lynn]

But you're planning on a bike ride this summer, how far/long is that ride? And, will you be comfortable with it knowing what you know?? You asked for opinions....mine is ASAP!

What did he say about minimally invasive??

 

[Ross]

This topic scares me, and rightfully so. I'll talk with the surgeon and the local doc next week and see what they say. My impression is that I am pretty safe for at least another 6 months or more, so long as I don't lift weights, sprint, etc. I don't know that I can get an "elective" surgery scheduled much earlier than July or so with the insurance issues, the doctor's schedule and all that.

Does it make any difference that they used a 64 slice CT machine and it didn't seem to show any weakness or balloning or anything?

Aneurysms have a mind of their own. Your talking only a half cm before it's a must do now thing. What I've seen happen so many times is once they get in there, they find it's larger then was measured by equipment. I want you to be vigilent, not worry, though it's hard to do with something like in you, but if it up and decides to grow, it could do so real quick and without warning. Mine gave me a little warning but everyone missed it. Even when mine blew, they missed it. I nearly died before my Cardio got there and had them run a CT scan, then it was aboard a helicopter (20 minute flight at 185knots) and off to the Cleveland Clinic ASAP for me.

 

[67walkon]

I've given up on the week long bike trip. It isn't worth it in the long or short run. And, I will take it easy on myself while they're getting the scheduling worked out.

Lynn, they can't do minimallly invasive or at least prefer not to. The valve has to be replaced, the aorta has to be replaced and they're going to do a maze procedure at the same time.

It seems so odd to feel so good and have all these things going on in there!

Happy Mother's DAy!