update and question

[Bradley White]

All,

In case you don't remember I had an Ross Procedure back in 2000 that hasn't worked out too well.

I went back to the Mayo Clinic last week for a second check-up and my cardiologist recommended surgery within the next few months. He said he thought that Dr. Joseph Dearani would be the best to do the surgery. So I met with him and he recommnded replacement of the aortic valve (which is actually a pulmonary autograft) with a mechanical valve that has a "sleeve" that acts as a root. So, in essence it would be a valve and root replacement. He wants to go with the St. Jude over Carbomedics and On-X for reasons which seemed pretty sound, but I can't really remember at this point. I think maybe St. Jude is the only one that makes the valve with the root sleeve thing? I don't remember. He also said having seen what a clot on a valve looks like, he would never want me taking just aspirin and plavix even with the On-X.

The other options we discussed were a homograft (cadaver) of root and valve and also a "valve-sparing" root replacement. He brought them both up, but basically didn't think either was a good idea for a variety of compelling reasons. The bottom line is that my heart has been dealing with regurgitation for all 23 years of my life and I need a valve that isn't going to leak for a good while, so that my heart (particularly LV) can recover from all the crap it's been through. I don't want to be in CHF.

Currently the homograft in the pulmonary position has only mild abnormalities, so he doesnt want to replace that unless things negatively progress between now and the surgery. Thus, he wants me to do another echo before the surgery. Basically, he said that with homografts implanted at Mayo they have seen that in a certain % of recipients (I think he said 20%) these valves last an extremely long time (decades). In almost all the cases where they fail significant abnormalities become present within the first 5 years. Since my pulmonary homograft hasn't shown any major anbormalities he thinks I should be able to use it for a very, very long time. Replacing it with a new homograft would be pointless because the new one would almost certainly not function as well as this one. Replacing it with a mech valve would mean increased likelihood of clot and having to run my INR higher than with just the aortic mech (not to mention the higher surgical mortality risk of replacing two valves). Furthermore, even if the pulm valve deteriorates significantly, abnormalities in this valve are well tolerated compared to mitral or aortic valve lesions. An interesitng note, they are still trying to figure out why some of the homografts last so long and other's don't. They tried to see if matching blood type of recip and donor matters and it doesn't...hopefully they can figure it out.

Another interesting thing he told me was that within 10-15 years people won't be using coumadin. Apparently, a lot of medications that are much easier to "manage" have shown equal (and in some cases better) ability to prevent blood clots in animals. The problem is that they have side effects on the liver. However, he seemed sure that they would resolve these side effects within the next 5 years and begin testing the medicine in humans shortly thereafter.

He doesn't have a very high opinion of the Ross Procedure, but I won't go into what he said because a) it would take a lot of typing, and b) i don't feel like setting off a firestorm and having the thread hijacked over arguments about the merits of a Ross. However, feel free to PM me if you want any details about this.

Now, finally, onto the question portion of the post: Although I have a lot of confidence in the surgeon and he has a lot of experience with Ross Re-ops, I still want to talk to a surgeon at the Cleveland Clinic just to have all of my bases covered. I don't see what it could hurt. However, I am not sure how to go about doing this. First, I don't know what surgeon at the CC would be the "best" one to do my operation (Cosgrove, Petterson, etc). How do I figure this out? Do I just send them my records and let them figure out who I should consult with? Should I contact a cardiologist there and get his opinion? Should I consult with multiple surgeons? Insurance isn't a problem. So anyone who has been in a similar situation, please give me whatever advice you might have.

Thanks,

Brad

 

[Ross]

Judging from what I've heard, a consult at Cleveland is going to get you a tissue valve. I honestly don't think that is in your best interests, but that's my opinion. As far as going about finding who. They are so busy up there, that about all you can do would be to request Dr. Cosgrove or Dr. Lyttle and hope that one or the other could see you. They may hand it off to one of the others, but if you stick to your guns, you may just get what you want. All you can do is try. Submit all your records to them for a second opinion and see what happens. If insurance isn't a problem, get as many opinions as you think you need. The more the merrier!

Another interesting thing he told me was that within 10-15 years people won't be using coumadin. Apparently, a lot of medications that are much easier to "manage" have shown equal (and in some cases better) ability to prevent blood clots in animals. The problem is that they have side effects on the liver. However, he seemed sure that they would resolve these side effects within the next 5 years and begin testing the medicine in humans shortly thereafter. Brad

Regardless of what he said, I would not expect this to come true in 10 to 15 years. I would doubt that they would even be much past a testing phase by then and currently, there is nothing being tested for valve patients. If you could, get him to cite some evidence that you could post so that we all might hold some hope, but I think he's just guessing at this point.

 

[marky]

I do not have any experience in either of these issues..but I pray for wisdom as you seek out the questions and answers to your needs.

personally when i got my second opinion.. I set it up as such..and they knew I was seeking a second opinion and had not made a decision with the surgeon/type of proceedure yet. So I got in pretty quickly.
But my surgery was quite different.

 

[Karlynn]

Hi Brad - thanks for all the details. I think they will be very helpful for some people who come here looking for information. I also personally found it very interesting that a dr. is saying they feel that a Coumadin alternative is in the not-too-far-off future. (and I consider 20 years to be in the ballpark) Al has said that a replacement for Coumadin is bound to happen.

I'm wondering if your pulmonary homograft will also look better once your aortic valve and root are replaced - less strain on the heart?

Going off of Ross's comments - I've often wondered why Cleveland does seem to greatly prefer a tissue valve and Mayo seems to go the other way towards mechanical? Both are highly esteemed institutions when it comes to valve surgery. Inquiring minds want to know.

 

[Ross]

Going off of Ross's comments - I've often wondered why Cleveland does seem to greatly prefer a tissue valve and Mayo seems to go the other way towards mechanical? Both are highly esteemed institutions when it comes to valve surgery. Inquiring minds want to know.

I'm really sticking my neck out on this one.......My surgeon at Aultman was trained at CCF and he told me that it's because they like repeat business and opportunities to educate students. Now whether this is true or not, I don't know, but that is what he told me. He went on to say that he only wants to see a patient once in his lifetime if possible, therefor, depending on age of the patient, would recommend mechanical to anyone 45 or under.

 

[RCB]

Karlynn, Ross, I am disappointed in you.........

Karlynn, Ross, I am disappointed in you.........

Hi Brad - thanks for all the details. I think they will be very helpful for some people who come here looking for information. I also personally found it very interesting that a dr. is saying they feel that a Coumadin alternative is in the not-too-far-off future. (and I consider 20 years to be in the ballpark) Al has said that a replacement for Coumadin is bound to happen.

I'm wondering if your pulmonary homograft will also look better once your aortic valve and root are replaced - less strain on the heart?

Going off of Ross's comments - I've often wondered why Cleveland does seem to greatly prefer a tissue valve and Mayo seems to go the other way towards mechanical? Both are highly esteemed institutions when it comes to valve surgery. Inquiring minds want to know.

Perhaps you can blame it on the all the information that Brad gave you folks,
but Brad asked about a second opinion and given that he is only an hour or so
from what I consider to be the very best heart surgeon in the world (IMHO ) Dr. Patrick McCarty at NW, think it is very selfish of you both to try to keep the great surgeon to yourselves.

Just kidding Just call NW from the number list on the NW website, tell them you have a complex problem and want a consult with Dr. McCarthy.
His nurse will get back to you with an email in a few days and a phone call
in a week. Although NW is not in the ranks of Mayo or CC, I would expect that to change in the next couple of years. For what it is worth, if in the near future, I have to go back for a fifth surgery, McCarthy is my choice!

and Go Irish! They are my second favorite team!

 

[RCB]

I agree with your doctor, but.........

I agree with your doctor, but.........

I'm really sticking my neck out on this one.......My surgeon at Aultman was trained at CCF and he told me that it's because they like repeat business and opportunities to educate students. Now whether this is true or not, I don't know, but that is what he told me. He went on to say that he only wants to see a patient once in his lifetime if possible, therefor, depending on age of the patient, would recommend mechanical to anyone 45 or under.

I would put it a different way, they have great confidence in their abilities to
do successful reops., a fact that separates them from over 99% percent or better than the rest of the heart centers in the world! Supreme arrogance or just a statement of confidence- well, as Will Sonnet use to repeat "No Brag, just fact!"

 

[Marguerite53]

tell them you have a complex problem and want a consult

I think this little snippet of advice from RCB is particularly good. I should think that the way you present yourself to the institution will get you in more quickly. And as Marky said, let them know you are looking for a second opinion and still trying to decide on a surgeon. It's a lot less time consuming when you arrive there with papers in hand, so to speak. I think they may surely want to do their own investigative testing, but you don't know til they see what you've got.

I would certainly make phone calls and find a secretary or receptionist type person to sweet talk onto your side. I assume they are very busy. I have found that the more friendly you are, the more you give of yourself, the better service you get......Hi, I'm a grad student at blah blah and I've had a Ross that's failed. I know I've gotten good advice, but I really want the best as this is turning out to be a very complicated situation that I'm trying to get my arms around. I only have this kind of time off, since my grad program is blah blah...... see what I mean. Become familiar with someone. WRite down their name. Take notes each time you call and date them. Then ask when you can check back if you don't hear from them and follow through. And always ask for that same person.

I wonder if your current surgeon might help you...? If you have trouble being seen at CC within your optimum time frame, perhaps you could call your current surgeon and see if he could make it happen any faster. My surgeon was incredibly supportive of my seeking a second opinion. His only remark was that he'd be very curious to learn what was said to me, particularly if it was different advice. Medicine is all about learning. Doctors and surgeons love the learning, too. In my case, opinions were identical...my AVR was very textbook and simple. My peace of mind, however, was complex!! That second opinion gave me heaps of confidence and decisivenss. I hope it will work that way for you, too.

Please keep us posted on your journey. We hadn't heard from you in a very long time and I'm sure I wasn't the only one who had been thinking about you from time to time.

We're here for support, too. Not just opinions. Assume you have come to a stage of resolution now. You sound good.

Best wishes!

Marguerite

 

[Ross]

I would put it a different way, they have great confidence in their abilities to
do successful reops., at fact that separates them from over 99% percent or better than the rest of the heart centers in the world! Supreme arrogance or just a statement of confidence- well, as Will Sonnet use to repeat "No Brag, just fact!"

A come on RCB, you wouldn't want to upset my grumpy big head surgeon would ya?

I conveniently left out the part where after he opened me and played with my lung and it collapsed, he whined to my wife that I was too complex a case and why hadn't I gone to CCF! She had to remind him that we asked him on 3 different occasions if he was up to the task or if he wanted to refer me to CCF. Don't get me wrong. The guy is a great heart surgeon, but he wasn't ready for the likes of me. I think my case knocked his confidence level down a few notches!

 

[Karlynn]

Perhaps you can blame it on the all the information that Brad gave you folks,
but Brad asked about a second opinion and given that he is only an hour or so
from what I consider to be the very best heart surgeon in the world (IMHO ) Dr. Patrick McCarty at NW, think it is very selfish of you both to try to keep the great surgeon to yourselves.

I have to say, I sleep just a bit easier these days knowing that McCarthy is at NW.

 

[RCB]

Ross, it is your fault!

Ross, it is your fault!

A come on RCB, you wouldn't want to upset my grumpy big head surgeon would ya?

I conveniently left out the part where after he opened me and played with my lung and it collapsed, he whined to my wife that I was too complex a case and why hadn't I gone to CCF! She had to remind him that we asked him on 3 different occasions if he was up to the task or if he wanted to refer me to CCF. Don't get me wrong. The guy is a great heart surgeon, but he wasn't ready for the likes of me. I think my case knocked his confidence level down a few notches!

How dare you clutter up his operating table with your health problems! Will you please think of the surgeon next time and not be so complicated! You should be ashamed!

P.S. if anybody doesn't understand this please email your notes of empathy
to Ross surgeon- NOT!

 

[Natanni]

I just wanted to comment on Karlynn's comment about the Mayo being a bit more conservative in the tissue valve dept--Nathan was told he would have got less than 10 years on a tissue valve by 2 docs at the Mayo, because of his lifestyle and work of repetitive heavy lifting (VERY heavy). He was told 7 years would be pretty much tops. I have found this to be the shortest prediciton with a tissue valve aside from children, but I felt that they were being very honest with him. We were also told of new anticoagulation possbilities in the not way far off horizen, but I thought Al said that would be a no-go now?

Thanks for checking in Brad. Have been wondering about how you were doing.

 

[Kate]

Ross,
I think it's extremely innappropriate to suggest that the Cleveland Clinic favors biological valves because they are looking for repeat business. First, every message I got while there was that it was my decision which valve to go with (ideally the message all hospitals should go with in most instances IMHO); second, until I explained otherwise, most people I dealt with at CC assumed I would go mechanical because of my age and would likely do the same with this case and third, unless you have some facts to back it up, I think it is outrageous for someone in a quasi-official position on what is supposed to be an educational website to make such an offensive accusation about a hospital that is recognized by most experts as one of the best in the world. Sorry - don't want to hi-jack the thread but just couldn't let this go by uncommented upon. Kate

 

[RCB]

I just wanted to comment on Karlynn's comment about the Mayo being a bit more conservative in the tissue valve dept--Nathan was told he would have got less than 10 years on a tissue valve by 2 docs at the Mayo, because of his lifestyle and work of repetitive heavy lifting (VERY heavy). He was told 7 years would be pretty much tops. I have found this to be the shortest prediciton with a tissue valve aside from children, but I felt that they were being very honest with him. We were also told of new anticoagulation possbilities in the not way far off horizen, but I thought Al said that would be a no-go now?

Thanks for checking in Brad. Have been wondering about how you were doing.

I'm not sure of your husbands specific medical condition or exactly when that prediction was made, but 7 years it is in the realm of a conservative life span of some tissue valve for someone that age according to this study by the CCF:
http://www.ccjm.org/pdffiles/Thamilarasan902.pdf
Some pt. may get more, which is no problem for the doctors, but for those unlucky souls who get less, an optimistic prediction can create trust problems.

 

[RCB]

Ross,
I think it's extremely innappropriate to suggest that the Cleveland Clinic favors biological valves because they are looking for repeat business. First, every message I got while there was that it was my decision which valve to go with (ideally the message all hospitals should go with in most instances IMHO); second, until I explained otherwise, most people I dealt with at CC assumed I would go mechanical because of my age and would likely do the same with this case and third, unless you have some facts to back it up, I think it is outrageous for someone in a quasi-official position on what is supposed to be an educational website to make such an offensive accusation about a hospital that is recognized by most experts as one of the best in the world. Sorry - don't want to hi-jack the thread but just couldn't let this go by uncommented upon. Kate

Well, I disagree and furthermore CCf has had their share of ethical problems in this area in the last couple of years. Check out the news of ethical investigation at CCF before you attack someone for making what you considered an "outrageous" statement. To suggest that a hospital might never have a profit motive in their healthcare decision is naive and simply suggest you aren't aware of the Tenet's problem- different problem, but the profit motive got them in an ethical dilemma.

Nobody is suggesting outcomes aren't world class at CCF, just that their motives might not be pure as the driven snow. When the choice has to be made Mech., they make it- I'm proof of that!

I just hope your outrage extended to the nurse at CCF who made made the truly "extremely innappropriate" comments to Randy as he was about to have surgery for his ON-X valve when it was suggested he wouldn't like being on warfarin.

 

[StretchL]

Ross

Ross

He doesn't have a very high opinion of the Ross Procedure, but I won't go into what he said because a) it would take a lot of typing, and b) i don't feel like setting off a firestorm and having the thread hijacked over arguments about the merits of a Ross. However, feel free to PM me if you want any details about this.

Hi, Brad. If you don't mind zapping me an e-mail about your doc's opinion on the Ross, I'd appreciate it. I'm considering the procedure with Stelzer in November, and I'm looking for every piece of information I can find.

Thanks so much.

 

[Karlynn]

I didnot take Ross' comments as what his personal thought, he was just telling us what his doctor said. Upon reading, my first thought was "I highly doubt it." and wondered what transpired to make this doctor be negative towards CCF. If, indeed, CCF does tend to lean towards tissue for younger people more than other heart hospitals, I would be inclined to believe RCB's take that they are that sure of their reop success. I will say that with Randy's (of Randy & Robyn) experience with a CCF and Coumadin does make me wonder whether or not their possible preference for tissue has to do with lack of current knowledge of Coumadin. http://valvereplacement.com/forums/showthread.php?t=14929

My comment on Cleveland and Mayo was not a criticism of either, just an observation I've had over the last few month, whether accurate or not.

Brad - I think RCB has a good suggestion. Track down Dr. McCarthy at Northwestern University Memorial Hospital in Chicago.

 

[Kate]

I am certainly not trying to claim that there aren't financial motives within the healthcare field (as there are in every other) or that the Cleveland Clinic is without flaws (as all human institutions have 'em).

I'm simply saying that, unless Ross has some facts to back up his claim that the Cleveland Clinic pushes biological valves to encourage repeat business, it is inappropriate to make such a statement. I'm sure that Ross himself would be horrified if someone new to the site were to assume these statements to be true, reject going to the Cleveland Clinic and suffer negative consequenses at a less qualified institution as a result.

I understand that people have a wide range of opinions about the various valve types and that is fine. However, when it comes to statements of fact, I think all of us - especially Ross - have a responsibility to ensure that the information presented on this website is as accurate as possible. Kate

 

[Karlynn]

I'm really sticking my neck out on this one.......My surgeon at Aultman was trained at CCF and he told me that it's because they like repeat business and opportunities to educate students. Now whether this is true or not, I don't know, but that is what he told me.

It's not Ross' claim, he's telling what one particular surgeon said. I should let Ross speak for himself, but I know he has a high regard for CCF, and refers people there often.

But I don't think raising a question, whether it's based on your own opinion or that of someone else's is necessarily the wrong thing to do if someone has questions. Maybe that statement will cause someone to be more vigilant and ask more direct questions of CCF if they are considering a surgery there, and that is not a bad thing.

Just because CCF and Mayo or Texas Heart Institute have extremely famous track records, doesn't mean that the individual considering having a procedure done by them shouldn't question their protocol or motives. They all are, after all, businesses and anyone going in to any kind of surgery should be clear that what is being done is in their personal best interest and not of the institutions. So if the comment by Ross' surgeon causes someone to delve a little more deeply, I think that's fine. It will only serve to make them more secure in their final choice.

I was secure in my hospital choice and my doctor choice for my heart issues. But I have rejected OB/Gyn's and Pediatricians based on what I've learned about how they operate their practices and what procedures they are known to prefer.

 

[Dennis S]

"Position"

"Position"

I am not aware that Ross occupies a "position" that forbids him to make a comment that would be more acceptable if made by some other member. There are no members who I think should censor themselves. I personally will always want to hear what any meber believes, particularly those with substantial life experience in this area. If you want, feel free to point out the weakness of any argument made on the forum. I object to the argument that one member has less freedom to state an opinion than the others. Sorry, I just felt I had to comment.