I'm only 24!

[leecrowley]

Ross Procedure

Ross Procedure

Although Bradley's Ross Procedure unfortunately did not succeed, do not immediately dismiss it as an option. If you are an ideal candidate, it is usually the best way to go. Not all cases of aortic regurgitation make you a bad candidate. Also, the actual Ross Procedure surgery is a little different now than when Bradley had his. The most experienced Ross surgeons have learned from some of the mistakes made 5-10 years ago. Unlike what he said in his post, having the Ross Procedure does not guarantee another surgery in the future.

There have been many, many cases where the Ross Procedure was successful (so far). It could be a viable option for you, so please don't immediately dismiss it.

Lee

Bradley......please do not take any offense to this post.

 

[Bradley White]

Hi Lee and Jared,

BAV, enlarged aortic root, and a primary diagnosis of regurgitation are all contraindications for the Ross Procedure from what I know. At this point, in my opinion it would be like trying to fit a square peg in a round hole. I stand by my belief that it would be an unwise decision. Second, you would have to have another surgery. Even if your neo-aortic valve remained functional (which is extremely unlikely given the circumstances), your pulmonary homograft would need to be replaced. Even pulmonary homografts don't last 40+ years. If yours did it would be a miraculous event.

For us younger patients, I think a homograft is the way to go if we do decide on tissue. This way the surgeon can replace both the dilated root and the valve with the same individuals cadaver valve. There is some evidence that suggests homografts last longer in younger patients than the previous generation of porcine tissue valves w/grafts when both root and valve need to be replaced. There is some belief that homografts become like a "rock" due to calcification which makes the replacement surgery more difficult. My surgeon told me this is no longer a serious complication, whereas steps can be taking during the homograft implantation to make replacement easier. Furthermore, there is at least one study that I know of that found no significant complication difference between replacement of porcine tissue valves and cadaver homografts upon reoperation.

I believe that you will not go wrong with either the ON-X or the homograft. Good luck,

Brad

p.s. No offense taken Lee. We are both entitled to our opinions. I disagree, but still respect yours and wish you the best of the luck with your recent Ross.

 

[Marguerite53]

Hello and welcome to our community. I've read all the comments and frankly, I think YOU need a second opinion from another surgeon. If, in fact, you've only spoken to the cardiologist, then it is time to make an appointment with the surgeon....maybe even 2 or 3 different surgeons. Check and see what your insurance will cover and use it to the maximum benefit as far as learning what your options are.

Many of us are very opinionated. However, this might prove to be a disservice to you should you not use your own medical professionals to the fullest advantage. Formulate new questions from what you've read here and take them to your surgeon(s). Don't stop asking them questions until you are satisfied that you understand what they know and say....and how it relates to you and your future.

Good luck. Eventually you will find an inner confidence in your choice.

Marguerite

 

[Superbob]

You have a number of good options from which to choose. Because I also had to have a replacement of both the aortic root and valve, I chose the stentless Freestyle device mentioned below in my "signature." From research I've seen, it has a very good track record so far. Of course I am also some 40 years older than you, so there may be other considerations that will weigh in another direction for you. But I just wanted you to be aware of this option.

Just do your research, give it thought, and choose what seems to be best for you. We'll all be rooting for you.

 

[StretchL]

Hi Jared. Your surgeon is wrong. The risk does not accumulate over time, it's straight out about 3 percent per year.

Again... two surgeons with whom I spoke told me that the risks indeed are cumulative. Jared's makes three.

 

[StretchL]

I am really torn about what valve to pick. I figure at best the tissue will last 15 years and by then I will be around 40 and can have a mechanical valve put in but I just hate the idea of setting myself up with another surgery. The surgeon also said that if I do a mechanical I will need to be on a blood thinner for the rest of my life, which he said runs a 3% chance per year of having major complications. He said that 15 years on a blood thinner would give me a 45% chance of having a major medical emergency over that time period. Really I am just needing some information, epically since I am only 24! HELP! Thanks.

(WROTE THE POST BELOW BEFORE READING THOSE PREVIOUS. OBVIOUSLY THE ROSS HAS ALREADY BEEN MENTIONED. MY BAD.)

Jared, at your age you might be a candidate for a Ross Procedure. I'm sure you probably have not been told about it, but you can get an idea of how & why it's done, and its benefits here: http://www.rapidcityjournal.com/articles/2006/12/07/news/local/news04.txt

There are a couple of wonderful surgeons in TEX-us, Oswalt in Austin and Ryan in Dallas, who specialize in the Ross.

Best of luck-

 

[StretchL]

Also, the actual Ross Procedure surgery is a little different now than when Bradley had his.

Current Ross techniques are a LOT different than they were 10-15 years ago. The good surgeons are also more particular about who they choose for this "third way."

A PRIMARY diagnosis of regurgitation is somewhat of a contraindication for the Ross. A PRIMARY diagnosis of stenosis with the regurgitation secondary to the stenosis makes someone fair game for a Ross, all else being equal.

 

[StretchL]

Even if your neo-aortic valve remained functional (which is extremely unlikely given the circumstances), your pulmonary homograft would need to be replaced. Even pulmonary homografts don't last 40+ years. If yours did it would be a miraculous event.

Pulmonic valves are now beginning to be replaced via catheter, which makes an already low-risk procedure even more so.

 

[MrP]

Jared,
A couple more opinions from surgeons will only help you make an informed decision. And of course you'll get many good recommendations here.

You mention your aortic root is enlarged. I'm just curious if you've had a CT scan or MRI or if the TEE showed an enlarged ascending aorta in addition to an enlarged aortic root. A CT scan or MRI allows better visibility and will provide a very accurate measurement of your ascending aorta. Given your BAV and severe regurgitation, there's unfortunately a very good chance that your ascending aorta will become even more enlarged later and even after valve replacement. If your ascending aorta is greater than 4.0cm now, you may want to ask the surgeons about the advantage of resecting your ascending aorta concomitant with replacement of your BAV to avoid a redo operation in the future. Resecting the diseased aorta from root to the innominate artery is an option you may want to consider to reduce risks of an aneursym developing later and to reduce the odds of needing another OHS in the future.
MrP
PS I take coumadin and also enjoy red wine.

 

[geebee]

Again... two surgeons with whom I spoke told me that the risks indeed are cumulative. Jared's makes three.

Well, I guess I better put my affairs in order since, according to your surgeons, I only have a 19% of making it through 2007.

Just for the record, all the doctors/surgeons I have dealt with over the years say it is not cumulative.

 

[StretchL]

Well, GB, I could be wrong.

It happened once before... 1983 I think... but I don't remember it well.

 

[briansmom]

If I read your posts correctly, your main activity is running. Check out the active lifestyles forum because that is really ok with coumadin. My 16 yr old son is having surgery on 3/12. He was an off-road motorcycle racer and is now forced to be in a off-road car because of his surgeries. We are going with the on-x in hopes of low to no ACT in the future. Good luck with your choice. Please keep us all informed.

 

[geebee]

Well, GB, I could be wrong.

It happened once before... 1983 I think... but I don't remember it well.

Stretch,

I don't want you to be wrong - only your surgeons.

 

[boomersooner]

Rp

Rp

I talked to the surgeon about the RP and he was totally against it. My cardiologist however said that it was an option. I initially thought the RP sounded good but my surgeon painted a pretty bad picture of it and said that it is risky due to the fact that I would endure two valve replacements instead of one, plus if they have to replace my aortic root that would make three extremely risky procedures in one surgery! It seems like every option is pretty well balanced with its pros and cons.

 

[Bradley White]

Hi Jared,

I cannot stress that when risk for ACT complications is given on a "per annum" basis it is not to be taken as cumulative. This is true of any statistic which is laid out as "the risk per patient year is X%". This is a quite basic principle in all biological sciences, especially medicine. I find it astounding that any surgeon would try to say the risk is cumulative!!!! It just makes no sense.
Scary how little medical professionels understand about basic statistics.

If risk were cumulative then that would imply at a risk rate of 3% at 35 years of anti-coagulation the risk would be greater than 100%. This simply isn't true or possible, it is not how statistics works. These risk events are always observed in patient years, one could not reasonable extract that data and attempt to add it up and say that after 35 years everyone would have had an event. That's simply not how statistics works. Anything whose risk is finite in a per year basis will never be 100% over any course of time. It will approach 100% but never reach it.

The cumulative nature of anti-coagulation risk is that every year there is a 3% risk. That means that every year there is a 97% chance of not having an event. As time goes on the chances that you won't have experienced an event decrease due to the recurring risk of 3% per year. You can calculate this risk by taking .97 and using the amount of years you are interested in as the exponent and then subtracting that number from 1 to figure out your chances of HAVING an event in X years:

I have made the following calculations based on a 1%, 2%, and 3% risk at 10 thrugh 50 years. The number represents the chances that you WOULD experience an event by this year if you were on ACT for mechanical valve.

AT THE 1% RISK LEVEL

10 YEARS = 9.6%

20 YEARS = 18.2%

30 YEARS = 26%

40 YEARS = 33.1%

50 YEARS = 39.5%

AT THE 2% RISK LEVEL

10 YEARS = 18.3%

20 YEARS = 33.2%

30 YEARS = 45.5%

40 YEARS = 55.4%

50 YEARS = 63.6%

AT THE 3% RISK LEVEL

10 YEARS = 26.2%

20 YEARS = 45.6%

30 YEARS = 59.9%

40 YEARS = 70.4%

50 YEARS = 78.2%

If anyone doesn't understand how I calculated those risks I can send them the excel file. The thing that stands out the most is the huge long term risk change when one goes from a 1% per annum event rate to a 3% per annum event rate. At 30 years, less than half of those at 3% per annum event rate will have not experienced an event, while at the 1% per annum event rate 74% of individuals should not have experience an event. This a significant reduction in the long term risk of anti-coagulation and represents the major medical reason why self-testing is such a huge advance since it has been shown to decrease the event rate from the 2-3% per annum category to around 1% per annum.

Trust me surgeons and doctors are not infallible, especially when it comes to math. I teach pre-med students a 300-level Fundamentals of Genetics course (decent working knowledge of statistics) at Nortre Dame and it scares me to death to think that some of them could one day be my doctor based on their complete incomprehension of statistics (among other things) at this point in their eduction.

Brad

 

[Susan BAV]

...Trust me surgeons and doctors are not infallible, especially when it comes to math. I teach pre-med students a 300-level Fundamentals of Genetics (decent working knowledge of statistics) at Nortre Dame and it scares me to death to think that some of them could one day be my doctor based on their complete incomprehension of statistics (among other things) at this point in their eduction...

Ah. That may explain your posts.

 

[Bradley White]

Hi Stretch,

Correct me if I am wrong but pulmonary valves have been replaced by catheter only on a trial basis and only in certain cases. Even if this does become commonplace in the future (of which there is no guarantee) I think the cause of the pulmonic valve failure would be a major factor in weather replacement by catheter would be feasible. Thus, I think it prudent not to pretend that OHS will be a thing of the past when Ross patients pulmonary homografts wear out.

Brad

 

[Karlynn]

Well, I guess I better put my affairs in order since, according to your surgeons, I only have a 19% of making it through 2007.

Just for the record, all the doctors/surgeons I have dealt with over the years say it is not cumulative.

My doctors/surgeon also said it was a "clean slate" each year, statistically speaking. It wouldn't make sense to recommend a valve option, St. Jude refers to as One Valve For Life, much less have the ACC recommend it for specific age groups, if the therapy needed to keep the valve clot-free had a cumulative risk and placed the patient in increasing jeopardy with each passing year.

If it is cumulative, I'm going to make about 5 batches of geebee's brownies and start pigging out!!!!! And forget going to Curves anymore!

 

[Ross]

Again... two surgeons with whom I spoke told me that the risks indeed are cumulative. Jared's makes three.

Again I will disagree. If it were cumulative we'd all have been in big trouble by now and it's not happening.

 

[Susan BAV]

Cumulative

Cumulative

Cumulative - I've been thinking about this, trying to figure it out.

I don't gamble and I don't play the lottery and I'm not recommending anyone else do so either. That's a disclaimer. And here's a smiley. That said:

To use the lottery as an illustration: If someone played the same numbers in the lottery every day for a year and their odds in winning were 3% and they never won the entire year, they should just give up because they're not anymore likely to win if they play the same numbers in the lottery every day for fourteen more years? Their odds don't change? Not in any way? Not in theory? Not in practical application?