OK Here We Go...
OK Here We Go...
I've been told that discussing warfarin therapy on here is a bit like approaching the third rail on the NYC subway, but, since my neck is stuck out already, here goes...
First of all, let me say that all the questions I'm asking and the opinions I'm expressing are only valid as they relate to my particular condition and my particular surgical options. What may be right for me may not be right for someone else. There are no absolute, across the board, right and wrong decisions here. (Unless you smoke. That's a wrong decision.)
Next, a quick response about warfarin reducing the likelihood of stroke not related to a valve. Because my family has a bit of a history of stroke, and because I have experienced a couple of very mild and quickly passing TIA's, I asked my primary care physician this same question. She said that adding the valve adds stroke risk, warfarin therapy reduces it, and together they're a wash.
Now, about doctors and statistics:
I don't think that doctors tossing out statistics is misleading. We must base our decisions on something. Medicine, like any other science, is based on the analysis of actions that are reproducible. Without statistical analysis to examine how two actions compare with one another, and what the outcomes are of each, medicine would be based on heresay, rumor, and anecdote, and there would be no standards of treatment for anything. I would agree that statistics themselves can be misleading, especially for those of us who are not trained to analyze and understand them. But the fact that we don't understand a statistic doesn't mean that the statistic is misleading. So if we are going to think in statistical terms at all, I would submit that we should put some trust in statistics as quoted by physicians who are experts in the particular field in which we are interested. Neither the physicians nor their analyses are perfect, but I think these trained men and women, as a whole, provide the best guidance we can find as we make difficult decisions about situations for which there are no perfect solutions.
I also doubt that in our litigious society, a doctor would stay in business very long if she/he were throwing around fictional statistics just trying to sell a patient on a particular procedure they're in love with.
So, what are the statistics on the risk of stroke or bleeding in the US population without warfarin therapy? I don't know. I suspect that the statistics in the medical literature about such events refer to the likelihood of an event *over and above* the likelihood of that event in the general population. That's the only way it would seem to make sense to me.
Based on the above assumptions, I've been e-mailing prominent cardiothoracic surgeons, giving them access to my cath, echo and chest CT reports, and the raw data from each, and asking what kind of candidate they think I might make for a Ross. I've contacted dox at the Cleveland Clinic Foundation, Duke, Wake Forest University Baptist Medical Center, a group in Texas, and the fellow in Germany whose response I've already posted. (I met with Stelzer personally so I don't have anything in writing from him.) I'm still awaiting a few responses, but I'll share some of what they told me with you now. Each of these doctors perform the Ross, as well as other AVR procedures. Most of them list the Ross as an "Area of Interest" on their ctsnet.org bio page, some do not.
First, the text of my basic e-mail to them:
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Hello, Dr. XXX. I found your e-mail address on CTS Net. Your name
and work have been mentioned to me by xxxxx.
I am a 43 year old male with congenital aortic stenosis and
regurgitation. I have a bicuspid aortic valve and some enlargement
of the ascending aorta. I am otherwise healthy: non-smoker, moderate
drinker, very active, 6'4" tall and weigh 189.
My heart disease has been followed yearly since I was an infant.
I have been asymptomatic until recently, when I gradually began to
experience shortness of breath. A recent cardiac catheterization
indicates that it is time for my valve to be replaced.
I have attached reports from that cath, echoes, and a chest CT to
this e-mail. I have also uploaded the complete studies to my web
site. They are available for download at
http://stretchphotography.com/xxxxxxx.
My cardiologist, Dr. George Vetrovec, has recommended that my native
aortic valve be replaced with a mechanical- probably a St. Jude. A
surgeon here in Richmond, Virginia, Dr. V. Kasirajan, concurs.
My concerns about implantation of a mechanical valve center around
the delicate balance of hemorrhage v. thromboembolism over the long
term.
I am therefore very interested in the Ross Procedure. Neither Drs.
Vetrovec or Kasirajan are very enthusiastic about the Ross.
I understand that the Ross is not always possible in every aortic
valve replacement patient, although it seems to be ideal for a narrow
subset of patients.
Although I have a bicuspid valve and my chest CT indicates a slightly
enlarged ascending aorta (both possible contraindications?), I wonder
how I fit into that subset.
I'd be very grateful if you could give me your opinion on my
suitability for a Ross Procedure, based on the attached reports
and/or the uploaded data I mention above.
To put it simplistically, on a scale of 1-10, if 1 is unsuitable for
the Ross and 10 is perfect for it, where would you place someone with
my data?
Thank you again very much for your time, Dr. XXXXX.
I look forward to hearing back from you soon.
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And here are the replies I've gotten thus far:
The Cleveland Clinic doctor told me that while he still perform occasional Ross operations in very selected patients, his cut off age is 45 years. He continued to say that the risk of requiring another operation for problems with the pulmonary vavle in the aortic position or the replacmetn human cadaver valve in the pulmonary position is at least 20% within the first 10 years.
He said that the pulmonary autograft has a tendency to dilate when it is moved over in the systemic high pressure position causing the vavle to leak and that the replacment valve on the right side has a risk of becoming stenotic due to an inflammatory reaction. The possibility of a Ross operation being a permanent solution with functioning valves for life or with a good autograft and a non consequential degeneration of the rightsided human cadaver valve may be 40-50%, but no one knows for sure yet.
He said they are still waiting for the real long term follow up of the larger series. Whether patient with bicuspid valves represents a worse group than the average patient for a Ross we don't know but that has been suggested but not supported by the presented series. The Ross operation has a marginally higher operative risk than alternative operations.
He said that CCF patients choices break down thus: 30% choce a mechanical valve, 65 % a tissue valve (bovine=calf tissue or porcine=pig valve) and occasional patients a Ross operation or human cadaver valve.
He mentioned what he all know, that patients chosing a tissue valve accept another operation in 10-15 years. Interestingly he said that the risk of coumidin very much outweigh the risk of another operation, and ?from a risk point of view the choice doesn't matter.?
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The surgeon from Tejas said that my surgeon and cardiologist here are not enthusiasts for the ross since they probably have not taken care of that many. He feels like I will be a good candidate for the Ross, giving the following reasons: ?you have ao. stenosis, which over the long haul has had better outcomes than the insufficient patients, you are not over weight, and active and not desirous being on anticoagulation.... the ascending aorta will be dealt with at the time of surgery...possibly with an interpositio dacron graft...something to keep the aorta the same size?? He stated that the mortality at 20 years with a mechanical valve is about 40%..the mortality with a ross at 20 years is 8%.
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The surgeon from Wake Forest University, where I was seen yearly from infancy through college said that a patient such as I, with bicuspid aortic valve with primarily aortic stenosis, is a reasonable candidate for a Ross procedure even though the aorta is somewhat dilated. He continued, ?You would need to have your ascending aorta replaced in addition to your aortic valve. A patient with Aortic stenosis, a tricuspid valve, and no aortic dilation would be a 10 for a Ross on your scale. Your situation would be a 7 or 8. Bicuspid Aortic valve with primarily aortic insufficiency, a dilated aortic root and ascending aorta would be the worst scenario and about a 5 on your scale.? He also mentioned other options without coumadin such as a stentless porcine aortic valve.
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