aortic root aneursym. any thoughts?

[Bill Hall]

tcopel - Good luck with the surgery. I also have an aortic aneurysm and will need surgery soon. Mine is on the suture line where my aortic valve was replaced in 2001. I am looking for a surgeon and I still don't know if the valve needs to be replaced (conflicting opinions). I am seeing another surgeon, from Johns Hopkins on Wednesday. The problem with these aneurysms is that they are dangerous. You are two weeks away from the start of your recovery.
Bill

 

[Tom F.]

Sorry I have to disagree. AVR repair in the presence of an aeurysum but with the normal aortic valve, and not an BAV is the norn in major heart center hostpitals these days for a sparring procedure. Go to major heart center hospital and what they say on websites. And yea, fine a doc that has done this.If you have a BAV a repair is "iffy". But a nomal valve with an aneurysm presents the perfect person for a David type repair. And the published results say that at 10 yrs 90% are free of reoperation, and that anyone can find on the net. Not sure why this procedre is being so trashed here. I would sayif you have not had it, do not comment.

 

[MrP]

Tom, I think that's a little harsh....we're not trying to trash the repair you had. Although many of us had valve replacement (not valve repair) and aneursym resection, we also researched this subject. Rachel and Mike C are correct in saying that many with BAV go undiagnosed until surgery. I think your words are most convincing. A 10% chance of reoperation is too risky for many when risks are lower for valve replacement...even if one has a trileaflet valve.
MrP

 

[Tom F.]

Sorry, waas not my intent to be harsh.

 

[tcopel]

Another day....As many of you guys have experienced, each morning that comes gets a little closer to the surgery (may 14th for me), and the anxiety factor tightens a notch.
The ongoing debate of mechanical vs. tissue continues. I think it's healthy to for these issues to be brought to the front and the pros and cons discussed, particularly in this forum. Not only for us, but for the future readers of this site who will face the same diffilcult decisisions. To a degree,these experiences do play a role. I dont think I have read a posting where someone was trying to convince another to do something against their better judgement/will. I think we are all trying to help each other by what we have seen or experienced, and giving advice to that effect. I think that most understand that the decisions are personal, and certainly, all are supportive.
To Tom F, I am still leaning toward the David procedure. At some point we have to have faith that the Doctor has what is in our best interest, although Rachaels point is well take regarding Doctors with a hidden agenda. The problem is how do we know those individuals. To MrP, your thoughts regarding making sure that I do not have a connective tissue disorder and a bicuspid valve is valid and well taken. I intend to reaffirm that to technologys limit, as I agree that repeat surgeries is something that is not at the top of the list for recreational activites. To Bill, who is faced with the same decisions as I regarding what valve, what hospital..what mojo is best, good luck and fight the good fight. To Bradley, continue to get better after your 2nd procedure, as it seems that you truly appreciate life and those little things that make it worthwhile. To Ross, anything you have to say is appreciated.
Time is short and "D-day" (David procedure) is on the horizon. I am still trying to decide to let this train continue on course (May 14th at Pittsburgh) or to derail it for a another option. I value any and all input so please let those postings flow....and to those who have been over the mountain ( I love that saying now), thankyou for your continued support....

 

[j3brawny]

I cant tell you guys how reassuring this site. I tend to be fairly reserved and not express concerns or doubts to my family. So it's nice to be with those that have been there, done that and gone over the mountain and find that life goes on. To J3Brawny, I would appreciate the e-mail that you offered.
Ross, what problem did you have that you attempted a repair of the AV (bicuspid?). To Len, who posted earlier today, hang tough on your surgery and know that others are with you. Thanks everybody!
To any others who have thoughts on the aortic valve sparing procedure..give me shout-out. Decisions..decisions.

tcopell you have the option for e-mails locked. Can't send you one. unlock this option so I can send You email address. Thanks

 

[tcopel]

tcopell you have the option for e-mails locked. Can't send you one. unlock this option so I can send You email address. Thanks

Sorry, j3Brawny..didn't know that i could lock e-mails out. Will try to figure thsi out when I get home tonight. Thanks so much

 

[WayneGM]

Whatever you decide, you may want to have a "Plan B" and discuss it with your Surgeon prior to surgery. I am not well informed on the subject but it sounds like the David Procedure works best under certain conditions and you never know what they'll find once they are in. You may want to discuss under what circumstances the Surgeon will decide not to proceed with the David Procedure and go to Plan B so you are comfortable with the decision process. Good luck.

 

[tcopel]

The personal experience I had is that my first AVR was at the hands of someone who planned to do the David procedure on me. He stated in the preop consultation that he had done ten of them, which I know now, but did not know then, is not enough. At the time, I was so thrilled at the prospect that my problem could be totally "fixed," with no coumadin and no reoperation down the road, that I lept at the opportunity to be operated on by this guy. When he got into surgery, he saw that the valve was congenitally bicuspid and that the David procedure was out. Unfortunately, he did not have the skill to effect a conventional aneurysm repair, just as I am sure (now) he did not have the skill to do the David procedure. After surgery, I never recovered well enough to return to work, and my blood pressure never got below the 190/100 range, despite intensive treatment with multiple antihypertensives. A year later, I had to travel to Houston for a near-death reoperation to have a Bentall's procedure done right. When Dr. Joseph Coselli at the DeBakey center (now at Texas Heart Inst.) operated on me, The Medtronics Freestyle that had tbeen implanted by the local surgeon had come unsewn 2/3 of the way around, including the area where the left coronary artery had been buttoned. I was in severe aortic valve regurgitation and Class IV heart failure -- in much worse shape than I had been at the time of the first operation. I'm lucky to be alive, and I wouldn't like to see anyone go through what I went through if it can be helped. This is the Reader's Digest condensed version of what I experienced. IRL (in real life), it was a lot more complicated, painful, and terrifying -- believe me.

Egads.....what a story, Rachael. I know there is alot more horrible stuff than just what you brought up here . I can see why you said what you did with your first posting. The doctor I am seeing currently has done 75 David procedures. It probably isn't kosher to put your first surgeons name on this website but would you mind letting me know via e-mail. I dang sure would like to avoid this fella. e-mail is [email protected] . I truly hope you are alright now and enjoying life. God Bless.

 

[Tom F.]

Rachel - you had an awful time. I am shocked that the doc did not know going in that your valve was bicuspid because a TEE test should have shown him that. But, you bring out an excellent point - go to someone with lots of experience!

 

[Mike C]

Just because an aortic valve is bicuspid doesnt neccarrisly mean you cant do valve sparing procedure...many people with bicuspid av never need surgery.

 

[tobagotwo]

Some thoughts...

You need a surgeon who is well experienced with aneurysm replacement, valve replacement, and the David procedure, and knows how - and when - to perform that procedure. A surprising numbert do qualify. Make sure your surgeon is one of them.

You need to know what you plan to do as a backup, if it's determined that you will need to have a replacement, rather than a valve-sparing procedure. It's unlikely that the surgeon can give a truly positive answer about the David Procedure until he sees the actual situation.

You should be looking at your backup options as sincerely as your primary choice. This includes both the mechanical and tissue options.

The best known are the St. Jude Master Series valved grafts and the Medtronics Freestyle root-inclusive, stentless, porcine tissue valve. Both are excellent, offer full recovery, equivalent risk over your lifetime, and replace both the valve and the aortic root.

At your age, the difference is mainly in how you choose to take your risks - over time, with Coumadin/mechanical (bleeding/stroke risk), or at intervals (a second valve replacement surgery).

You are 52. I was 52 when I had my AVR. Your most likely scenario by far is one more surgery with a tissue valve. With a mechanical valve, you are likely not to require a second surgery, but will require Coumadin anticoagulation therapy for life. Riskwise, they are neck and neck.

I would also be sure to have your cardiologist have the parts of your aorta checked which are out of range of a standard echo or cardiac catheterization. While the chances are in favor of this being your only aneurysm, it would be foolish and wasteful not to check before he goes in there to fix things.

Best wishes,

 

[tcopel]

Some thoughts...

You need a surgeon who is well experienced with aneurysm replacement, valve replacement, and the David procedure, and knows how - and when - to perform that procedure. A surprising numbert do qualify. Make sure your surgeon is one of them.

You need to know what you plan to do as a backup, if it's determined that you will need to have a replacement, rather than a valve-sparing procedure. It's unlikely that the surgeon can give a truly positive answer about the David Procedure until he sees the actual situation.

You should be looking at your backup options as sincerely as your primary choice. This includes both the mechanical and tissue options.

The best known are the St. Jude Master Series valved grafts and the Medtronics Freestyle root-inclusive, stentless, porcine tissue valve. Both are excellent, offer full recovery, equivalent risk over your lifetime, and replace both the valve and the aortic root.

At your age, the difference is mainly in how you choose to take your risks - over time, with Coumadin/mechanical (bleeding/stroke risk), or at intervals (a second valve replacement surgery).

You are 52. I was 52 when I had my AVR. Your most likely scenario by far is one more surgery with a tissue valve. With a mechanical valve, you are likely not to require a second surgery, but will require Coumadin anticoagulation therapy for life. Riskwise, they are neck and neck.

I would also be sure to have your cardiologist have the parts of your aorta checked which are out of range of a standard echo or cardiac catheterization. While the chances are in favor of this being your only aneurysm, it would be foolish and wasteful not to check before he goes in there to fix things.

Best wishes,

Great Thoughts Bob H. You and Wayne GM are right about investigating and deciding on backup options in the event the David is not feasible. I am very focused on my primary decision (David vs mechanical) to the point of excluding other important decisions like those you mention. Tobagotwo, I see that you have a porcine valve. Do you mind sharing why you chose this valve from your personal standpoint? It seems that you are 3 years or so past your surgery so do you have any thoughts now about your choice? Although I am under fairly severe time constraints now (surgery just around the corner) your point is well taken and I plan to give it serious thought. Anticoagulation, for me, is a bit daunting although that a vast majority of people do perfectly fine and have absolutely no problems.
To Rachael, I have take you words to heart and have checked out the surgeon via review of his C.V.(which is quite impressive) and found that his experience entails 75 David's. The problem is...how do we really know how good a surgeon is? Perhaps.......this site can assemble a quality list of outstanding Zen Masters (as Tobagotwo says) in different parts of the country at some point.
To Tom F., you are my hero. Keep the mojo going.
To all........I can't tell you guys how much I appreciate you input and thoughts and prayers. I plan on being a member here in any capacity I can to help others, ect for a lifetime.

 

[Tom F.]

I wonder, has anyone ever contacted Dr. David to ask who he could recommend? I know of people that have contacted Dr. Ross successfully for his recommendations for Ross procedures. Perhaps that might work.

 

[tcopel]

The single most important consideration in choosing a surgeon is: how many times has he performed the exact procedure that you are having done? He can have an impressive resume in terms of having trained and worked at impressive places, but that doesn't make him an expert at your kind of surgery. A lot of times vr.com members will recommend surgeons to each other, but then it turns out that the surgeon in question has mainly mitral experience when the needed procedure is AVR, for instance. People tend to underestimate how specialized this stuff is.

My re-operation was done by someone who operates only on the aorta, a pretty uncommon specialty, and based on my experiences, I only recommend aortic specialists for operations on the aorta. There are undoubtedly competent people out there who aren't famous and who aren't necessarily aortic specialists; the problem is, it is hard to identify them because they aren't famous and they aren't aortic specialists. And then, there are people who purport to be competent in what they want to do to you, and they appear totally confident, but their skill is more questionable. I'm sure that many or most of them truly believe they are as good as anybody, but they do not have the experience to back it up.

Taking for granted that the David procedure is right for you, it is not a commonly performed operation, so I wouldn't guess there would be a large number of surgeons who have performed in the hundreds. Your proposed guy has done 75, which I wouldn't personally be comfortable with -- but then, I went through what I went through. Tcopel, if your surgery is just around the corner, are you how open are you to making a change? I'm not saying you should or shouldn't change your plans, just that you can drive yourself crazy by undertaking a major project like this at the last minute. If you've decided, you've decided. If you're really not sure you want to be operated on by this surgeon, then maybe you need to take more time to decide. But then, you have an aneurysm. If you back out of this operation, that entails risk in itself. It's a tough call.

Rachel, athough it would be tough, I would rearrange everything if I got a bad vibe. I think, in retrospect, if you could have changed your first surgeon, even at the last moment, you probably would have given the crap you went through. So..yeah, I guess I would because of the very thing you went through. I dont know that anyone has done very many david procedures. 75 does not seem like very many but no one has. Wish I had a list of surgeons like Conde Nest travel magazine has the number one rated hotels in the world.
I think I am going to have a porcine valve as my backup. Any thought anyone??

Any day goes by. D-Day approaches.

 

[tcopel]

Tom F,
Do you know how many david procedures your surgeon have done at Rush?
Do you know his training? Thanks so much. Points well taken Rachel....

 

[MrP]

The best thoracic surgeon in the world is Dr. Joseph Coselli in Houston. He has performed several thousand surgeries to resect aortic aneurysms and has an excellent track record, if not the best. You may want to contact him for a referal for the procedure you are contemplating...at least get his opinion on this procedure.

 

[Tom F.]

Dr. March I believe is a product of Rush University. I cannot recall how many David he has done, but as of 2002 he had done appx. 140 Ross procedures, which is a lot.

 

[xbxb]

Here is my experience - and maybe some of these thoughts will help you in your decision. After reading your posts - I know you aregoing through some of the thoughts I had.
I am 43 and(I was 42) had a Bicuspid Tissue Saving Repair of the Aortic Valve and Aortic Root Replacement.
My surgery was performed at the Mass Gen Hospital in Boston.
I did a lot of research along with my cardiologist before deciding on Mass Gen. - and there is just not a lot of data in the medical literature on repairing a bicuspid Aortic valve. Cases such as this are relatively rare- most of the time the valve is replaced- patient is older, or depends on the experience of the institution where you are having your surgery. There is a little bit of data from the medical literature 98-02 where success was soso on bicuspid repairs but the data pool is very small - remember most people that have a bicuspid valve repair are older and have it replaced.
My coronary arteries were clean and that I was told make the surgery 10 times easier - no bypass needed.
(A bicuspid valve is a disease of the Aorta and 50% of bicuspids will have an enlarged Aorta that needs work. I would recommend that you speak w/an aorta specialist- as others here have suggested).
FYI my repaired valve is noisier than it was before. . . not a big deal.
FYI - the world record for an animal valve is 25 yrs.
The Surgeons I received opinions from - had done repairs and Aorta Replacement/Repairs (All were experienced valvers) - received opinions from Brigham and Womans, Cleveland Clinic, Texas Heart Institute, Beth Israel. These experienced doctors agreed though they cannot really tell you why, is that it is always better to use your own tissue.
I was told I was the ideal candidate by Dr's that do the repair.
(I was also told to put in a mechanical many times by other surgeons-and be done with it, before I did a lot of research and spoke to the Aorta specialists).
42 - in very good physical shape, non smoker.
My valve was not stenotic - calcified. I think this is the biggest consideration, and most likely the reason a repair was possible.
The TEE test was the confirmation that my valve was most likely repairable- gives a good look at the valve.
Still even though I was given an 80% chance of repair by my surgeon after the TEE, (other said 50%)I was told that the decision would be determined in surgery. In surgery, after the repair they test the valve and if they felt it would not function correctly a replacement would be made.
The biggest complication and what made the surgery complex was the aortic root replacement. There are many, many valve surgeries, but less w/root replacements and much less with repairs of bicuspid valves.
I spoke w/many educated people (cardiologists, surgeons, etc.) before my surgery. I also had the help of my cardiologist - who helped me digest all the info and was looking to help me find the best outcome - my opinion is that many of the Dr.s that are out there are not familiar with repairs- I think due to the number of patients they see that would be considered a good candidate. Most people that have valve surgery are close to 70, and an animal valve that could last 12+ years is an option. Also as you get older bicuspids tend to get stenotic - and thus become unrepairable. As you know in your 40's or low 50's- a valve type decision is a little more difficult. Also the little data that was available in the medical literature had many redo's - that is why many people hear a repair is not possible.
My experience was to find the people that did have experience with cases such as mine - and these people all believed a repair was most likely the best option. I actually was searching for Aorta specialists. The AORTA is the serious part of this operation - and in my opinion there are far more experienced valve surgeons than Aorta specialists.
I asked my surgeon "if my valve was repaired, and someday needed to be repaired again, would he replace it or rerepair it?" he said he never thought about it but that he would probabably try to repair it again if possible.
My repair does leak, but minimally (as my Dr. says - it has always leaked), and due to the artificial root, the conduit does not expand and thus helps maintain the valve composure.
With my repair I have virtually no lifestyle restrictions. On the down side more than likely I will face another surgey - but hopefully when I am old and grey.
The risk increases on the second (95-5)surgery due to scar tissue- but hopefully this surgery will be far, far, far in the future where there will be new advancements!
Valve choice is a tough decision - in my opinion as I am sure you realize,your decision is much more difficult than if you were older. Many Dr's will lean towards a mechanical valve. At 42 I was concerned about being on blood thinners so long and also because I live a pretty active lifestyle. I know there are plenty of people on this board that are on Coumadin and they will tell you it is very managable - but I would also want to speak with people that are your age that are on Coumadin to get their opinion before you made a decision. Being free of a mechanical valve was my choice. How long an animal valve would last was an issue.
My surgeon was quite conservative - he told me that the length that animal valves last are still variable.
After deciding against a mechanical valve, that left an animal valve. This would guarantee a resurgery(s). Each time you have a resurgery the risk goes up due to scar tissue.

After a lot of searching the 4 institutuions I found that have the most experience w/ repairs of my type w/some level of experience: (You will not find surgeons that have done hundreds of your exact surgery - there are just not that many of these cases) I got opinions from all these institutions- all the big names -FedEx is great-you can too.
Cleveland Clinic
Mass General
Brigham & Woman
Texas Heart Institute
I chose Mass Gen. The surgeon needs to be an experienced valve man AND Aorta specialist.
It is true that no one can tell you how long the repair can last. It is expected that I will need another surgery some day- but the hope is that I will be much, much, older. Because my root was replaced with an artificial piece, the sense is my repaired bicuspid will last longer. My Aorta dilation is no longer a high risk - was much more of a concern than the valve itself.
The Aorta specialist that I now see once a year told me the odds are that my next valve will be made from my own body. (One of the reasons I chose MGH - Now I am under the care of an Aorta Specialist(Non Surgeon) who I see once a year for a check-up).
My surgeon told me in his whole career he had only performed approximately 15 of the EXACT same type of surgeries that I had done- he is senior surgeon. He also told me he had not yet had one fail. He has done many ,many aorta repairs, and many, many valve replacements.
All the Dr's agree there really is very little data on how long a repair will last. But the Dr.s that are experienced in this exact procedure believe it makes sense, especially in someone my age. At 52 you are dealing with all the same issues that I had to think about. What is critical is that you are a good candidate, and that the surgeons are experienced in this delicate procedure.
Remember whichever valve decision you make - nothing is 100%. Obviously we try to get the best odds - but if you are the <1% that has an issue - odds do not mean anything. Educate your self - and when YOU make the decision - go for it - and never look back. You are very fortunate that you may have a choice - many do not.
By the way at age 44- I am playing basketball 4-5 times a week now!
Please contact me this weekend if I may be of help.
Sorry if this info is a little jumbled - but I was cutting and pasting from some letters I had sent to people.
Good luck and I wish you well - that waiting is the worst part of all.
David Cohen

 

[Susan BAV]

Excellent and helpful information, David; thanks!