Appointment With Dr. Cameron -- Still Gray (and Blue)

[cbdheartman]

Well, this will probably be a long post. I apologize.

I had my appointment with Dr. Duke Cameron at Hopkins today. First, the praise of him was well-justified. Of the four surgeons I've met with, he was the most attentive, the most willing to answer questions, the most humble, and the nicest. That is not to put down the other surgeons (except for the first one who didn't even look at the scans himself), but to say that Dr. Cameron really stood out not just among surgeons, but among doctors. He was paged to the OR at one point and returned to answer questions. He also said I could e-mail him with any more I might have.

That being said, after meeting with him I find myself again faced with advice that runs contrary to my gut and logic and what all you virtual friends are saying is pretty obvious.

In short, Dr. Cameron does not recommend surgery yet. He said if it were simply a question of the aneurysm (I will return to this later), he would recommend surgery. He and his assistant made it sound as if the risk of surgery in their hands is under 1%. The complication is my BAV and what to do with it.

He read my 2004 CT-Scan, which the geniuses had said was within normal ranges, as being about a 4.2 aortic root dilation.

He read the CT-Scan from Cleveland as a somewhere in the high 4.0s though he was getting a lower reading than the 4.9 they gave me.

He read my cardiac MRI as a 4.9 though I watched him measure it and it was close to 5.0.

Back to his recommendation, his concern is opening me up and being faced with a number of less than ideal options on the BAV. Here is my recollection:

1) Keep my native valve without doing anything. Right now it is functioning pretty well and he thought there was a chance he could leave it in and see what happens to it. (Interestingly, he said only 1/3 people with a BAV end up needing their valves replaced.) This of course opens me up to the possibility of a future surgery. Unfortunately, I didn't have a copy of my echo to show him so he couldn't really tell me much

2) A repair. He didn't seem keen on this idea. He echoed thoughts that I have heard on here that have suggested that BAV repairs just don't go all that well. The downside of this route would be that you would be faced with reoperation at some unknown date.

3) A biological valve. The obvious problem here is that I am young and the life of such a valve would be 10-12 years. (Though I do wonder if that will get me closer to the window of the catheter valve replacements.)

4) A mechanical valve. (I am simply not inclined to go that route for a number of different reasons.)

In terms of aneurysm risk, he cited Elefteriades' numbers and said I am at about a 3% annual risk of dissection or rupture (though he was saying that when he hadn't yet looked at the actual scans). He seemed fairly unequivocal that my risk in surgery is very low. He emphasized several times that if it were simply a question of the aneurysm, he'd go in now. But with this valve issue, he'd actually wait to about 5.5 cm to recommend surgery. He seems concerned about the pandora's box that you open with the valve. He'd be willing to do the surgery if I go in with full knowledge of the unintended valvular consequences I might be visiting open myself.

My takeaway: First, I wish he'd just have said, "Do the darn surgery." Second, I understand from his perspective the concern about ringing the valvular bell, but I am not sure I see the wisdom of waiting. His cardiac nurse assistant said that I was looking at this surgery (unstated: if I don't die first) within 5-6 years and I am not sure how big of a difference that makes. I know Dr. Cameron thinks it makes significant difference because it puts surgery number 2 back some, but I am not sure it makes sense for me.

Also, I found interesting that he did say that the risk of surgery really is less than the risk I face right now from the aneurysm. (He seemed to be saying this for aneurysm surgery only, but I don't believe there is a significant statistical difference.)

He also said that this was a question of managing risks and how comfortable I felt with the options in front of me. To me, even conceding the pandora's box you open with the valve, it seems like a choice between this:

uncertain risk of dissection/rupture vs. certain and managed risks (first surgery, a second surgery down the line, but again more on my terms and the doctor's terms).

And looking at that, I again ask, why would I want to take the continuing uncertain risk of dissection/rupture?

Finally, one question that I may have asked before, but is the risk of second valve surgery significantly higher or for a young guy -- let's say early to mid 40s -- facing a second OHS for valve replacement, would I be looking at a low risk again?

Thanks for listening. I do truly appreciate all you bearing with me.

 

[Maryka]

OK, you answered my question about Hopkins!

OK, you answered my question about Hopkins!

Interesting! Since I know the Dr. and his assistant and can see the cramped room in my mind's eye, I feel I was there!

Because I have a number of Marfan characteristics and some doctors suggested I had Marfan Syndrome when I was in my early 20s, I ended up being termed "Marfan" for many years. There are a lot of people out there who are borderline Marfan who get fatal or near-fatal aneurysms. Because each family's Marfan Syndrome starts with a single genetic mutation in one of them, you have a lot of people who seem Marfan-like, but may not have the full set of symptoms. What I would ask you is: Have others in your family had aneurysms or bad heart valves? Are you much taller than your relatives, or just one of a group of tall, slim guys? How are your fingers? Are they longer than others in your family? Were you double jointed prior to puberty (as I was and remain, even now)?

If you want new figures to fret over, I would suggest you try to meet with one of the Geneticists at Hopkins to get an evaluation for Marfan. Why? Because Marfan tissues are generally weaker than non-marfan tissues. Your beloved athletic life is one reason to really worry, I think. If you were going to be mellow for the next 5 years and not do too much aerobic activity or things that cause bumps to your chest, I think your stats for waiting would be pretty good.

Here is another thing: Before safe(r) open-heart surgery, Marfan-type men lived to be an average of 30 years. Marfan-type women lived to be an average of 40 years. (Are women inherently "stronger" than men, or are men just more apt to engage in much more physical activity?) How is your jaw--narrow with crowded teeth? How about your feet--flat or with collapsing arches? If you have some of these tendencies, your tissues may be more like Marfan than regualar BAV. (I have a few of these tendencies very strongly which is why doctors in the 60s suggested I had Marfan).

I can recommend Hal Dietz, MD, as a geneticist at Hopkins. However, he has found a new symdrome that carries his name, so he may be off busy with that. But, really, Hopkins geneticists are very superior and are close enough to your home to visit. I think the geneticists will be able to give you another way to view your "odds"!

Well, that is my piece. I wish you could just feel good about your course of action!

 

[ALCapshaw2]

Here's another twist:

IF you get a Tissue Valve in your 30's and want to continue with Tissue Valve Replacements in the future, you are looking at AT LEAST 2 Surgeries and very possibly 3 or even 4, depending on how long you live.

I have ONE BIG Quesiton about Catheter Replacement Valves.
Since it will be sewn into the existing valve, How Much of a Reduction in Effective Valve Area can be expected and how much of a Reduction in Blood Volume (and Exertion) will this impose on the recipient?

I'm curious about your dismissal of Mechanical Valves.

Are you familiar with ALL of the Mechanical Valve Options (especially the Technological Advances available in the On-X Valve ... see www.onxvalves.com and www.heartvalvechoice.com)

Have you read the "Sticky's" at the Top of the Listing of Threads in the Anti-Coagulation Forum?

That should give you enough to chew on for awhile.

'AL Capshaw'

 

[Lynlw]

Here's another twist:

IF you get a Tissue Valve in your 30's and want to continue with Tissue Valve Replacements in the future, you are looking at AT LEAST 2 Surgeries and very possibly 3 or even 4, depending on how long you live.

I have ONE BIG Quesiton about Catheter Replacement Valves.
Since it will be sewn into the existing valve, How Much of a Reduction in Effective Valve Area can be expected and how much of a Reduction in Blood Volume (and Exertion) will this impose on the recipient?

I'm curious about your dismisal of Mechanical Valves.

Are you familiar with ALL of the Mechanical Valve Options (especially the Technological Advances available in the On-X Valve ... see www.onxvalves.com and www.heartvalvechoice.com)

Have you read the "Sticky's" at the Top of the Listing of Threads in the Anti-Coagulation Forum?

That should give you enough to chew on for awhile.

'AL Capshaw'

Since the valve is not sewn inside the old valve, but on a stent that pushes the old valve open most things I've read and docs (they are doing the aortic trials at Hof P where Justin's adult CHD cardiologist is) I asked say the "large effective orifice area is achieved by associated expansion of the aortic annulus and the absence of any struts or sewing ring so that it approaches the orifice of the best stentless surgical bioprosthetic valves."

 

[kfay]

I just had a tissue valve (porcine) put in last year at the age of 45. I was told by my surgeon that most likely, I would have at least two more surgeries with as many as four possible (depending on how long the valve lasted in my heart). The odds of each surgery increase by about 5% per surgery. So, this last surgery, they gave me about 2-3% odds of dying. The next time will be around 8% and so on and so on. The unknown, of course, is how much scar tissue you will form inside which is what makes each successive surgery harder.

Kim

 

[Gail in Ca]

I had my 1st OHS done at age 34, getting AVR and a dacron graft for the aneurysm. As I stated before, the aorta fell apart in the surgeons hands.
My risk in '89 was 5%. Then, in '00, I had the porcine valve replaced with mechanical. I didn't ask about risk, because, really, why bother? I had one of the best surgeons in the country and I needed the surgery, so, I did it without even asking! I didn't know that the mechanical was placed inside the porcine ring, I found that out this yr when I had my AVR and MV repair after endocarditis damaged both. I didn't know the risk the 3rd time around, either, but read it here, as 10-25%, which is more than I thought it would be. But, of course it was a very long surgery, with same great surgeon. Strangely, I came out of it really well, awoke fast, and got out of bed easily a couple days after surgery. I left the hospital 6 days after surgery. Amazing!
Funny, when I read your posts with all your ??. When I first found out about my aneurysm and aortic valve leakage, my 1st thought was "Holy sh*t, I'm going to have a scar!!" Ha Ha, I didn't even think about risk until I met with the surgeon and asked then.
Good luck on making your decision.

 

[Ross]

He emphasized several times that if it were simply a question of the aneurysm, he'd go in now.

What's going to kill you first. The valve or the aneurysm? I know the answer, do you?

Why have you ruled out Mechanical? I really don't care what valve you choose, but I want to see if your basing that decision on a bunch of mythical information that is plastered all over the place. In my mind, knowing what I know and have been through, I cannot see why anyone would want to set themselves up for more surgeries down the road. That just doesn't compute to me.

 

[cbdheartman]

What's going to kill you first. The valve or the aneurysm? I know the answer, do you?

Why have you ruled out Mechanical? I really don't care what valve you choose, but I want to see if your basing that decision on a bunch of mythical information that is plastered all over the place. In my mind, knowing what I know and have been through, I cannot see why anyone would want to set themselves up for more surgeries down the road. That just doesn't compute to me.

Yeah, Ross, I agree with your point. My wife and I discussed last night. As I was hauling the trash out and straining, I thought: do I really want to be doing this for years, worrying if the next little exertion is going to be the one that leads to dissection?

I thought that point from Cameron sort of pointed to the answer. I am faced with a lot of less than ideal options, but the least ideal is waiting around and hoping that nothing happens with the aneurysm.

As for mechanical valves, I will look into them more, but I really don't want to be on a blood thinner for 40-50 years. I know that there is a new drug approved in Europe that is coming that is supposed to be better than Coumadin, but still, I am not sure that I want to be on it. I will look into it more.

 

[MissMelis]

You just need to decide which is the lesser of two evils: being on blood thinners for 40-50 years or face a new valve replacement OHS every 10-15.

The only reason I chose tissue over mechanical was because I want to have children. My next valve replacement will be mechanical.

Do you know where you prefer to go for your aneurysm repair?

 

[DavesMom]

Hi there,

Please don't be scared of a mechanical valve - it's your best bet for avoiding surgery in the future. I've had mine for over ten years and it's not given me one bit of problem. Nor has coumadin - you just need to make sure you take it daily and get tested when necessary. And don't buy into all the garbage that doctors and nurses tell you about giving up green veggies and all - I eat salads all the time and my INR has been stable for two years.

I can relate to what you're saying - every time I strain to pick up something heavy I worry about it being too much for my aneurysm. When I've had a particularly bad day at work I worry that my BP is spiking enough to cause the aneurysm to get worse.

I know it's a difficult but I've said it before - my ascending aorta is at 4.5 and if I had my way I would be in there having it done NOW. So if I were in your shoes there's no doubt what my decision would be.

Best wishes,
Michelle

 

[Maryka]

As I said once before on this list, my Marfan friend Patricia had 4 surgeries replacing her AV and fixing her aneurysms (which first were noticed with a disection 40 years before). She even had no choice about what hospital to go to in the end. She had to take the generic establishment in her neighborhood. But, the surgery went well. She died, however, from the hospital acquired infection she got AFTER the surgery.

 

[Ross]

I'll take my Coumadin any day over another surgery. Until you've had it and find out how badly it kicks your arse, you won't understand. By then, it'll be too late. I'm not joking when I say this is the worst thing you can go through next to brain surgery. If you were 50 or 60, I'd say go tissue, but doing that at 31 is lining yourself up for up to 4 more surgeries and as I said, to me, that does not compute.

Not only do you have to suffer through recovery, but your family, finances, body, and a whole host of things have an additional toll placed up them unduly.

It's still your life and I expect your going to do whatever you feel is best. I just want you to be sure of all the pitfalls of each decision. Good luck with whatever final decision you come to.

 

[Nancy]

Please also keep in mind that no one knows what their health is going to be like down the road. We all hope that it is just great and that this one surgery or one whatever, will do the trick and nothing more need be done. And we all hope that nothing else pops up to compromise our health in other ways.

My husband had 3 valve surgeries and two lung surgeries 5 major thoracic surgeries. He had a very hard time getting the third one done because the cardiologist didn't want to have him go through it. He also eventually needed a 4th surgery, but he was told he wouldn't make it off the table, and no one would do it.

Multiple surgeries take their toll on the body, age takes its own toll, and other "stuff" happens.

Minimizing major thoracic surgeries is a good thing. They are called major for a reason.

 

[COLLEEN S]

Conor,
Glad you at least went to see Cameron. The man knows of what he speaks. I would closely consider his opinion, and of course the others of which you have consulted. I am 46 and my valve is mechanical. You have a aneurysm also, like me. From what I understand, St Jude makes the artificial valve with a dacron mesh sleeve attached for the aneurysm repair. For me it was the way to go since it was my 2nd OHS, and being 46, I didnt want to have many more surgeries, that may be the case with a tissue valve or most certainly the case with a porcine valve. My 2 cents.

I sent a letter thanking Dr. Cameron for the great job he did on my surgery and I got a handwritten thank you note from him, thanking me.