Second opinions??

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Jennie

Jennie

Well-known member
Joined
Jun 11, 2001
Messages
258
Location
near Washington, DC
How does one go about obtaining a second opinion, without trying to pry another referral out of one's primary physician? I was wondering if I could send my test results to another surgeon - or go in person if necessary - and for a few bucks get him to tell me his recommendations. Any advice from Those Who've Been There?

thanks!
-Jennie
 
Very honestly discuss your concerns with you primary and let him/her know how serious you are about getting another opinion. Maybe that would help. Never hurts to ask. Your primary should also be able to interpret your numbers. Also you could check into About.Com, look up Dr Rich in heart disease/cardiology, list your numbers and ask him. He's very good and a notable EP, instructor, national speaker, author. God bless
 
I cannot imagine, given the description of what you need to have done, that your PC Dr. will not give you at LEAST one additional rferral for a second opinion. You MUST not hesitate. If you are feeling a bit vulnerable, get your SO to make that call for you. It is critical you get another opinion. My husbands first cardio said that my husband did not need to have the valves replaced yet, we decided to get the second opinion, and low and behold, the second cardio said that he had severe regurgitation, and had to have the surgery asap. Two additional cardiac surgeons said the same thing. Within the time he had to wait for the surgery, he took a couple of steps backwards, so that by the time the surgery took place, most of his meds had been doubled, and he couldn't walk 50', or talk for a minute straight without getting short of breath. The first Dr. was an idiot, trying to save $$$ for his employer. Get the second opinion, from the BEST Dr. you can find, even if he/she is out of state.
Marybeth
 
Jennie, Jennie-

Stop being whimpy. Just TELL your doctor that you want another opinion, no ifs, ands or buts. This is your LIFE we're talking about, not some bottom line for an accountant.

It is your doctor's obligation to see that you get the best care you possibly can. I'm pretty sure that if you are assertive, he/she will have to honor your request. If you were to worsen, and he/she neglected to do what was right, that leaves a big vulnerability for them.

So go do it girl.
 
Jennie,

I agree with Nancy. This is your life! You just tell the doctor you want a second opinion. I don't think he can refuse a referral. He could be sued if anything went wrong, and he never gave you that chance for anothers opinion. The suing is secondary though. Most important is you life, and getting things moving in a timely manner. The doctors lively hood depends on his patients. They work for us. You just have to let him know, that this is the way its going to be. I wish you the best!
 
Hi Jennie.

I also agree with Nancy and Lorraine. I had a physical recently which my primary wanted an Echo done. When he got the results, he told me he had already referred me to a cardio I didn't know. I went to see his cardio, but even before that appointment, I called his office and told them I wanted a second opinion and I wanted a referral to a cardio of my choice. After talking with both cardio's, I wanted to talk to a surgeon. I called his office back and told them I wanted a referral to the surgeon.

My thoughts on this are my primary knows I've got severe AS requiring an op. soon. I'm not asking for referrals cause I've got nothing better to do. If for some reason my primary choose not to honor a reasonable request, time to shop for another primary. There are lots of them.

I saw my primary yesterday for a little knee problem (skiing :( ) and we talked about my intention for a Ross procedure at the beginning of April. His cardio recommended against the Ross in favor of a mechanical and forwarded his recommendation to my primary. I talked to him about why I wanted a Ross and he agrees with my thinking and is on board. I was glad to hear that.

Have a chat with your primary Jennie. I'm sure he/she will understand how you feel and have no problem with a second opinion. If he/she does, you could always then ask if they have a recommondation for a good PCP. :)

Chris.
 
Hi Jennie - I am in the Wash DC area also and will be looking for a new cardiologist soon. I had my primary cardiologist in NJ and he recommended a second opinion. I called the Cleveland Clinic (since they are large) and asked how to go about getting a second opinion.They told me this guy Dr Griffin was the one to see for second opinions, so I flew out there and did it. He said I was ready to get the surgery. My primary cardiologist was happy to send echo and cath info and med history out to Cle. Anyway I had my surgery last Jan. Good luck.
 
Thanks for all the encouragement here, folks!! I DO want a second opinion - particularly in light of the TIMING of the surgery and the wisdom of taking a new valve still under evaluation. But, first, some background:

I was seeing a local cardio, a bit of a dud. Then I got a new PC doc, and in the last year and a half, he has sent me to three cardios in DC. The first DC guy admitted my case was beyond his expertise. The second DC guy changed his mind every time he saw me (and the surgeon he consulted with said "bovine" with no further explanation). The third guy (my current cardio whom I've been with for a year) sent me to his buddy at Mayo Clinic because of my possible Marfan's and to be evaluated with respect to a possible repair. The Mayo surgeon says I am a somewhat complex case, not just with the possible Marfan's and the aneurysm, but that my valve abnormality is not typical of what they usually see. He might be able to repair it, though it's doubtful. And Mayo Clinic, along with a place in Oklahoma, are the only two places getting the new aortic CryoValves at this time, which they are recommending to me.

So, I am hesitant to go back to my PC doc, not because I am timid, but because I am wondering who else is left around here for him to refer me to, who would have some insights into my situation or something better to offer than Mayo Clinic, or who deals with the new CryoValve (being, as I said, in limited circulation now) AND with repairs. How do I find a surgeon who deals with cases like mine? Keep in mind that I am in a semi-rural hole here. I am already out-of-network-but-approved for Mayo Clinic, so I'm wondering if my insurance company would be agreeable to my going to Cleveland Clinic or another such place for a second opinion. And Mayo Clinic is more than I could have ever asked for - I never dreamt of hooking up with such a Big Dog place - so am I now asking for too much by wanting more? I have confidence in the surgeon there. But I would have even MORE confidence (enough to dial that number for a surgery date!) if I had another competent voice telling me the same things that he is. And you're right, it's $$ versus my life. I don't mind shelling out some bucks. I just don't know who to go to.

Well, now that I am thinking about this here, and what everyone has written, I'm thinking I should just go see my PC and say "what about Cleveland" and "what about Hopkins" for a second opinion, and see what he can do for me........???? Bill, I'll give a call to Cleveland to see who they would recommend for me, and have Dr. Griffin's name handy as a backup.

Thanks for the pep talk. Sometimes I think the surgery's going to be easier than wading through all this pre-surgery stuff....?!! ;)

I'll keep you posted! Best wishes to everyone here, and thanks again,

-Jennie
 
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Jennie
Tell your PC what you want.

Remember, the docs work for you! You don't work for them.
There's got to be a good cardio in the DC area.

You have to be your own best advocate.
I have the CryoLife SG valve. so they are out there. I had my surgery in Indianapolis. Whoever told you that only Mayo and Oklahoma have them is not up to date. I know that there is a a great doc in OK named Elkins. He does a lot of Ross Procedures. But he also has his own little Elkins fan club webring thing going. Those guys try to put out a lot of stats that make Elkins look like he is the only one who can do these surgeries. THere are a whole lot of competent skilled surgeons! ( I was put off of him by folks on another site. It was too whinny and too much like the Elkins love fest!) So, don't settle! You tell those jerks at the insurance company what you want. They'll cave. Get educated and get what you want. People on this site have a lot of experience.
Did you try hooking up with a Marfan's site? Maybe you can get a line on a good cardio who does Marfan's stuff and that might be a second opinion.

Good luck!
-Mara
 
Hi Mara!

Thanks for the encouragement here! I did make an appointment today with Dr. Griffin at Cleveland (thanks Bill Hall!) I also have an appointment with my PC doc plus a call in to my insurance, so hopefully between the two I will get approval to go. I know CryoValves are out there, but the new one is the aortic version (as opposed to mitral or pulmonary). I know you have the pulmonary with the Ross, and Steve in Florida has the pulmonary in his aortic position. My understanding (and I could be wrong) is that there was difficulty at one point with the aortic, as it is thicker than the other valves, and they were having trouble with the decellularization (did I spell that right??) of it. So, that's the one which just got federal approval and is only available at Mayo and Oklahoma now. I don't know if Cleveland does any CryoValves or not. Surely they do repairs, so I figured they'd be a good place for second opinions. At this point, I would like some assurance that the timing is right for me, as I've heard so many opinions on this during the last year or so....!

I hope you're doing well! No complaints with your CryoValve, I hope??!!

-Jennie
 
hi jennie!
mara is right, those cryolife sg's are definitely out there. in fact, joey's surgeon had one that was being reserved for another patient. i think there are certain hospitals/ doc's that get more than others. for instance, dr. stelzer told us that elkins is using them (in oklahoma) exclusively in his ross procedures these days. (i also think elkins had a connection with cryolife_ maybe on the board of surgions there or something).
from what i've read, the cleveland clinic is tops. also mayo. you seem to be going in the right direction.
good luck, be well, and please let us know what happens.
-sylvia
 
Doctors

Doctors

There are a lot of good ones out there--I just had a valve sparing (aortic) done at the University of Mich. know what your physicians are capable of doing (procedures) -repairs-sparing--how often they have done these if you can--it is a fact some surgeons do the more complex procedures more often-Gary
 
Jennie:

I am just back from having mitral valve repair at Cleveland Clinic.

This is the link to Dr. Cosgrove's bioggraphical information indicating he does aortic valve repair too. He gave me a 95% chance of repair where the best surgeons here at home (Salt Lake City) gave me only a very weak and tentative 50-75%. Dr. Cosgrove had no trouble repairing my valve and did it with a
2 -5/8" incision to boot! He is an incredible surgeon and I would absolutely trust him with any heart surgery I needed.

http://www.clevelandclinic.org/staff/getstaff.asp?StaffId=237


I would encourage you to call Dr. Cosgrove's nurse/practice manager, Jean Ryan, at 1-800-CCF-CARE Ext. 52500. You'll likely get her voicemail but leave a message and she will call you back, although it may take a day or two on the initial contact because she juggles hundreds of files at once. She is very nice and extremely knowledgeable about the surgical procedures and can talk to you about Dr. Cosgrove's preferences for valve replacement options too. She also has a fabulous memory and keeps scrupulous notes of anything she talks with you about. She does an amazing job in a very difficult position.

I personally have to say I was very disappointed in some of the cardiologists I met at Cleveland Clinic for their overall lack of patient relations skills. Additionally, the Cleveland Clinic experience is quite impersonal, but I certainly can't fault Dr. Cosgrove since he did what I went there for him to do.

I can't imagine that Cleveland Clinic can't get you any valve you and your surgeon determine is appropriate for you. I would encourage you to talk to the surgeon about the valve replacement he would use, not the cardiologist, since I found cardiologists at Cleveland had varying opinions some of which did not reflect Dr. Cosgrove's preferences and it simply confused me.

By the way, Dr. Cosgrove was very easy to talk to about valve replacement options when I finally met him. (The difficulty is that you may not meet him until just immediately before your surgery). He said there are no "wrong" answers, only preferences. However, in the case of a mitral valve in a 50 year old like myself, his preference was the same as mine, which would have been the Perimount bovine pericardial valve by Carpentier Edwards. He tends not to use a mechanical valve unless the patient really insists that's what he or she wants wants, as he would prefer not to have you on coumadin. As it was, I got my repair and it was all a moot point.

If I hadn't pursued SEVERAL second opinions from cardiologists and surgeons--all of which my insurance paid for--I might not have gotten my valve repaired. Keep getting second opinions until you are clear in your mind what and who you are comfortable with for your care.
 
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Hi everyone,

Well, I've done a lot of thinking, and I talked to someone at Mayo Clinic (possibly the nurse/practice manager of the surgeon there?) who was very familiar with the various valve options including the new CryoValve, the surgeries there, the surgeon himself, etc. I came away from that conversation feeling very confident about the whole thing, so I threw my name into the pot at Mayo to be pencilled into the schedule. Looks like it will be mid-April.

But, Jennifer: Now the nagging Cosgrove question is sneaking back into my mind! Based on the few hours that I was going through my appointments there, yes, I too found the place a bit impersonal and that sort of thing - not that I would base my decisions on this. Also, I too was not convinced that the cardiologist was an accurate spokesperson for the surgeon, seeing that the surgeon himself had not seen any of my data. So, it came down to (1) do I think I have a better chance of repair with Cosgrove above that of the Mayo guy and (2) do I want the CryoValve as my backup or am I willing to go into the OR with a regular homograph sitting there as my backup.

My answers to myself are (1) it sounds (to me) like the Mayo surgeon and the Cleveland doc are talking about similar procedures when it comes to the repair, and (2) I want the CryoValve as a backup and I don't think it's available at Cleveland. Also factoring in is that I haven't heard of too many people on this site that have actually had their aortics repaired by Cosgrove (though maybe I'm wrong - it's hard to keep track of everyone!) - though the mitrals seem successful (keeping in mind that's an easier valve to repair). So, thus I decided on Mayo. BUT, it's true, I haven't confirmed these "answers to myself" with the Cosgrove office. So, I did leave a message on Jean Ryan's machine to see what her responses are to these two points. I'm hoping for confirmation that I am on the right path, otherwise....??!!

And glad you had such a successful surgery! 2-5/8" scar, my goodness!

Gary: The Mayo surgeon, at our first meeting, seemed excited to see me, saying cases such as mine are a subspecialty of his, and starting talking about a valve-sparing procedure. Knowing that not everyone does this sort of procedure, this gave me a very good feeling about him and his capabilities. Then I went for a TEE, and met with him again, and he said my aortic root, while larger than normal, is not dialated as much as he expected for the root to be the main suspect in causing the regurgitation. Rather, he suspects that the partial fusion of the cusps, and I guess maybe some prolapse too, is the cause. So, he basically ruled out the valve-sparing procedure as an option. It was nice to know that it would've been available to me, though, as Dr. David up in Toronto had been a lingering question in the back of my mind. By the way, he (Mayo guy) said there's two valve-sparing procedures, Dr. David's and Dr. Yacoub (U of London). He does Dr. Yacoub's, who is supposedly one of the world's greatest heart surgeons (but recently retired).

So. I'll see what Jean has to say..............?

-Jennie
 
Jennie:

Mayo Clinic and Cleveland Clinic are the two top cardiac hospitals in the nation - I would think you are in as good hands at Mayo as at Cleveland, although they keep saying Cosgrove is one of the top 2-3 cardiac surgeons in the world.

I had at one point contacted Mayo and had a short conversation with a surgeon there by the name of Thomas Orzulak. I just didn't feel we struck a "chord" between us and I was more comfortable with the interaction I was having with Stephen Colvin's staff at NYU or with the Cosgrove staff at Cleveland. Additionally, I was also considering Dr. Leonard Cohn at Brigham and Womens Hospital in Boston (Harvard Medical School). Brigham and Womens is ranked 5th in cardiac care by US News & World Report. Dr. Cohn had reviewed my films and gave me an excellent chance of repair as well. I eventually eliminated Colvin because he uses the "heartport" or right thoracotomy method of minimally invasive surgery and while he has great success with it, I had had a lot of warnings about it from several surgeons, including Cohn and Cosgrove. I believe Dr. Orzulak at Mayo also does the thoracotomy method of minimally invasive surgery. When Dr. Cohn himself needed aortic valve surgery, he chose Cosgrove to do it. In the end I was leaning toward the mini-sternotomy approch with either Cosgrove or Cohn and when I got the 95% odds from Cosgrove, it just seemed for me a "go." Certainly there is a point where to keep seeking opinions confuses more than it helps. Dr. Cosgrove had done more than 10,000 mitral valve repairs, so I just figured he was my best chance and if he couldn't do it, well then nobody could.
 
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Wow Dr. Cosgrove!

More than 10,000 mitral repairs. How do you do it?

He must be operating 24/7, 3 times a day or something like that. No wonder he's hard to talk to. I hope he waves at his family occasionally.

JenniferO, you certainly have the expert there.

My hat's off to the man.
 
Yes, Nancy, the stories are legendary. He does four surgeries a day!

They say he loves surgery so much, he spends hours down in the hospital morgue just perfecting his techniques.

He's a multi-millionaire and doesn't need to work any more, but just continues for the love of his craft.

It is frustrating that he is so inaccessible for purposes of consultation, but when I finally did meet the man, he seemed very nice and I liked him very much. I immediately felt calm and absolute trust.
(He's also very handsome!)
 
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Hey JenniferO-

Congratulations on being home. I remember after all of Joe's surgeries, he was so very happy to get home and be able to rest without interruptions.

The healing process has begun. Best wishes for an uneventful recovery period.
 
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