Still Hemming And Hawing

[cbdheartman]

Well, I am booked for surgery at either CC or Hopkins later this summer. My head and gut say to do it. And yet I still am not totally settled on doing the surgery. I know some on here must be annoyed with me. Sorry.

The thing I am having trouble understanding and digesting is why so many cardio-thoracic surgeons are telling me to wait. What, if anything, do they know that I don't? For instance, I spoke to a family friend who is a busy cardio-thoracic surgeon in the Midwest. He greatly respects Duke Cameron and he said if Duke Cameron is saying wait, he'd wait. (He also said that if I were his patient he'd have me wait until 5.5 cm. He's had patients who have just sat at 5.1 or 5.2 cm for 15 years.) He said that he thought there was no problem with running, biking, golfing, etc. He said, "You probably could go out and run a marathon," but he did tell me to avoid heavy lifting and to avoid say doing a sprint. I was hearing and thinking: "This seems nuts! Why would I run and exercise like that and put strain on my heart." He said the real worry is the sharp and sudden increase in blood pressure and that running doesn't do that to the heart.

Then you hear the story of bugchucker and how his cardio changed his mind over a two hour period concerning his 4.7 cm aneurysm and you wonder what the heck he saw that the guys talking to me don't see.

I guess it is good that each surgeon has said he'd do the surgery, but I still wish I were getting their seal of approval. It would make it easier.

The proof is probably in the pudding of anxiety that you folks have gotten just a small taste of. Can I really get closure by choosing not to do the surgery? I am not really scared of the surgery. I am having anxiety dreams about a variety of things because of this hanging over me.

Am I foolish to get operated on when I am 31 years old and my aneurysm is "only" in the high 4s? Or am I foolish to not get this done? (BTW, I got the earliest date I could at Hopkins and one of the earliest dates I could at CC so my talking about it on here isn't putting off the surgery. It is dealing with whether I go through with the surgery or call it off.) Now I think the answer is in what I am saying here, but I just keep wondering if I am missing something.

Are these doctors making these recommendations on more than just numbers but on experience? By this I mean that they know that the "stats" show I have a 3% annual risk of dissection, but by experience they believe someone younger and healthier and taller really doesn't have much risk at all? Have they had good experience telling people to wait? (BTW Ross did you ever talk to your doctors who told you to wait; what did they say?) Do we have lots of stories of 31 year old dissecting or is a 4.9cm aortic root in a 31 year old more durable than a 4.9 cm one in a 55 year old?

Again, I ask these questions because I am really wrestling with things here. Maybe I am just looking for a little more help to push me all the way to the final decision.

I know that the future is unknowable and there are risks either way, but I really am struggling here.

Thanks in advance!
CBD

 

[Ross]

Well you can always test fate. You'll either win or you'll lose.

 

[Nancy]

CBD

If it is 6 of one and half a dozen of another, and I am not sure it truly is, but that is the feedback you are getting, then you have to sit down and possibly even make a list of what it means to you to do it or not do it.

You are living in a certain amount of fear as it is right now. And your doctors aren't helping much to assuage your fears.

Are comfortable with waiting and can you blow off the anxiety or get medication to help you through this trying situation?

What will waiting do for your quality of life while you wait?

What will surgery do for you if you have it done now?

And there is a BIG unknown. You are not a statistic, even though your doctors have made you one. You are a human being trying to act like a statistic, and it isn't very helpful. No one can tell you about how things would work out for you, if you come up against the smaller end of the statistic at a time earlier than the doctors think.

You've got to have a deep and clear heart to heart talk with yourself on this.

 

[ALCapshaw2]

Have you asked any of your Doctors (and YOURSELF)

What is the BENEFIT in WAITING ?

You KNOW that you have BAV and an Ascending Aortic Aneurism.

You KNOW that they will NOT "Go Away" without surgery.

You WORRY about this EVERY DAY to the point it has become an Obscession (How do you get any WORK Done?)

And you are STILL on the FENCE!

I'm kicking myself for even responding this this thread (and I've Lost Count after 21 and that was several threads ago).

Are you for Real or are you Laughing your A** Off
that you can keep so many people entertained for so long?

(OK, I admit, you have asked *some* good Questions,
but the Answers don't seem to have any effect.)

That's it. I'm done.

 

[Reddog]

I decided to choose surgery because of the statistics, and talking with the doctor reinforced the correctness of the decision for both of us. Talk explicit percentages. Even if it's only an annual 1% risk, not 3%, then in 10 years the likelihood of dissection / rupture would be near 10%, but the risk of operation is more likely 1% *once*. Engage your surgeon with a discussion on the percentages. I find that it's a more "cut and dry" approach to having the surgical discussion. Worked for me! If on the other hand, a respected surgeon (like Cameron) recommended waiting with the stats to back that up, I'd give his recommendation a lot of consideration.

Red

 

[cbdheartman]

Have you asked any of your Doctors (and YOURSELF)

What is the BENEFIT in WAITING ?

You KNOW that you have BAV and an Ascending Aortic Aneurism.

You KNOW that they will NOT "Go Away" without surgery.

You WORRY about this EVERY DAY to the point it has become an Obscession (How do you get any WORK Done?)

And you are STILL on the FENCE!

I'm kicking myself for even responding this this thread (and I've Lost Count after 21 and that was several threads ago).

Are you for Real or are you Laughing your A** Off
that you can keep so many people entertained for so long?

(OK, I admit, you have asked *some* good Questions,
but the Answers don't seem to have any effect.)

That's it. I'm done.

I am not laughing my a** off. I am just confused and looking for support. I am conflicted. My heart and head and gut tell me to go for it, but then you have some of the best surgeons in the world telling you, "Wait." It isn't an easy situation to be in.

 

[ALCapshaw2]

I am not laughing my a** off. I am just confused and looking for support. I am conflicted. My heart and head and gut tell me to go for it, but then you have some of the best surgeons in the world telling you, "Wait." It isn't an easy situation to be in.

"Conflicted" is a good description.

That's why I ask you to ask the Surgeons who suggest waiting to define the BENEFIT they see in doing so.

Be sure to tell them how your Worry and Concern over this issue is CONSUMING your Life.

You may also want to ask them "Why wouldn't it be better to get this problem FIXED and Done With so that you can get on with your life without the need to worry that your aneurism could blow at any moment."

I'm sure we would ALL like to hear those answers from these surgeons who keep telling you to Wait.

 

[cbdheartman]

"Conflicted" is a good description.

That's why I ask you to ask the Surgeons who suggest waiting to define the BENEFIT they see in doing so.

I think the benefit they see is delaying the clock on future surgeries. Cameron said if I had a normal valve and an aneurysm it would be an easy answer: do the surgery now.

 

[ALCapshaw2]

Go back and read the last 2 paragraphs of my previous post which I apparently added while you were typing your response to the first question.

Given your answer, the Next Question to ask the Surgeons is "how long do they think they can postpose surgery as a means of pushing back a second surgery"?

If it is only a matter of a few weeks or months,
"What is the point (and benefit)".

If longer, do they realize the extent of your Constant and Consuming WORRY over this problem?

There seems to be a "Failure to Communicate" on this last issue between you and the Surgeons.

Yet another Question to ask them is
"If YOU had this BAV and Aneurism, could YOU put it out of your mind for the next several years or would you get it FIXED ASAP"?

Here is a somewhat related scenario.
Patient was a bit freaked to hear that he had Aortic Stenosis and Cardio was recommending AVR not too long after Bypass Surgery. Got a second opinion. Second Doc recommend WAIT, hoping to get 3 to 5 years with BP
medication.

ONE year later, patient developed more symptoms.
Interviewed Surgeon, scheduled surgery (took 2 months to find a good date). Symptoms worsened. Got to Hospital JUST IN TIME and was put on a Balloon Pump within hours of arrival.

Is that how you want to live for the next few years?

 

[Maryka]

CBD, I am glad to see your latest thread! I figure you might be one who takes the Red Line (DC Metro Subway) and was worried that you were in that deadly crash yesterday! (I could not logon yesterday, so was worried).

I am so happy that all of this OHS worrrying is our main concert here, LOL!

Sometimes I think that when you talk to these many doctors that your non-verbal communications indicate just how conflicted you feel and they tell you to wait because you are not quite in the "danger zone" yet.

I think what Ross said was right. You should ask Cameron and your CC doctor why they think you should wait. Our second guessing them is pretty frustrating. Their recommendations seem strange, but maybe it is because you have signalled the potential surgeons that you are very conflicted about having the surgery NOW. They know you could wait until you are very much in the danger zone, so they tell you to wait.

As I have said to you before, in the early 90s doctors did not do OHS until the size was 6, unless, of course, the patient was dissecting. As OHS became more safe the size moved down to 5.

Also, if your aneurysm is considered "a connective tissue issue" I am baffled why anyone would tell you to jog, etc. Unless, of course, he is a friend and can see how much you do not want to give up all of these things that are dear to you. If the aneurysm were caused my your birth-defect heart valve, however, then your tissues are probably not weak and your scenario is less grim for exercising.

Anyway, I am so glad you were not on one of those trains yesterday so that we can worry, worry, worry some more about hypothetical causes of death!

 

[ottagal]

CBD,
I have been following your threads, but really didn't have much to add to what others have said. I can see that you are very conflicted and believe me, I understand those feelings. There is a saying "analysis can be paralysis" and believe me I have been going around in circles for the past year driving myself crazy. I finally said yes to surgery today (albeit for AVR and not an aneurisum). Surprisingly it has brought me a little more peace of mind.
I hope you find your answer and peace with it soon. It is not an easy way to live.
All the best with your decision!

 

[briansmom]

I know how hard it is to make these kinds of decisions. I wish there was something we could say to make this decision easier. Whatever you decide will be the best decision for you. I hope you find peace with your decision soon.

We are here to support you however we can.

 

[Gail in Ca]

My best friend, who has her masters in nursing, told me it is very important for a patient's recovery if they are comfortable with their decision to have the surgery. They recover quicker and better. So, just be okay with your decision to have the surgery. It sure sounds to me like you are really wanting to wait. But remember, I, at 34, wanted my surgery right away, but had to wait 6 wks. My aorta fell apart in the surgeon's hands!
You never know, but you are the only one to make the choice to have the surgery. Try e-mailing Dr Craig Miller at Stanford. See if you get an answer on what he would recommend.

 

[cbdheartman]

My best friend, who has her masters in nursing, told me it is very important for a patient's recovery if they are comfortable with their decision to have the surgery. They recover quicker and better. So, just be okay with your decision to have the surgery. It sure sounds to me like you are really wanting to wait. But remember, I, at 34, wanted my surgery right away, but had to wait 6 wks. My aorta fell apart in the surgeon's hands!
You never know, but you are the only one to make the choice to have the surgery. Try e-mailing Dr Craig Miller at Stanford. See if you get an answer on what he would recommend.

Gail,

Actually, I just second guess myself a lot. I want to get the surgery done and over with, but worry about my choice when I see doctors say wait. It makes me think that I am not seeing some angle.

If nothing changes, I will be having this surgery sometime in the near future and getting on with life. Of course, I am praying for a miracle and that my aorta and valve are healed, but I know that isn't likely.

 

[Nancy]

but worry about my choice when I see doctors say wait. It makes me think that I am not seeing some angle.

You have to get your doctors to reveal that hidden angle. Call them and ask why they are recommending waiting instead of going ahead. I don't think they have adequately answered you, or you have not asked that direct question.

It may also serve to make them analyze your situation clearer because they will have to define their answers better. They may be giving good advise, but they are not telling you why.

Ask them also if there is something they fear telling you about going ahead now. It's been my experience with Joe's doctors that when they were dragging their feet, they didn't want to tell him something in a direct way.

You sound like my husband in that you like direct answers, even though they may be difficult to hear.

Joe never liked muddling around with medical problems. And he would badger them until he got the straight scoop.

"Put it on the barrel head, doc, let me actually see what I am dealing with."

 

[Glenda]

I agree with Nancy completely. Demand to know why the doctor's want you to wait. You have to take charge of the situation. Don't wait, it may be too late. I almost waited too long, the cardio said I would probably have been dead if I would have waited another week. My cardio kept trying to force me into have the surgery but I had been through two cancer surgeries just two years before and I didn't want to go through another surgery especially one so serious. Now I'm facing it again in the very near future. The problem this time is I don't have some of the same symptoms I had before. I have no shortness of breath at all. I feel better than I have felt in years. I've lost a lot of weight, I've gone back to work full-time. The only thing my echo shows my aorta valve is just not working like it should. He said my body is trying to reject it. It's kind of like living with a time bomb about to go off. I've just put myself in God's hands. Whatever happens I win! !

I'll pray that you make the right decision real soon, like I said don't wait too long.

 

[cbdheartman]

Nancy and Glenda,

Thanks. The doctors have said the reason they recommend waiting is the valve question. That is what they keep coming back to. There is no ideal solution for the valve, so they want to wait to ring that bell as long as possible. To me this doesn't seem like a compelling reason, but that's what they say. I have put a follow-up question to one of the surgeons whether he is basing this on experiential medicine -- i.e. his experience with folks my age and with my size aneurysm. Maybe he has seen so many and just doesn't think I am at real risk, but again I have yet to hear a compelling reason to wait, though I want to be clear they have told me why they think I should wait.

 

[COLLEEN S]

CBD, I agree with Cameron in that it does start the clock, so to speak, on future surgeries. And your younger age is a factor also. Whenever I can't make a weighty decision, I sit there with the old pro and con paper and make lists. Hope it helps.