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Getting a second opinion when you’ve been told you need a transplant takes time, travel and money, so why do it?
A new Mayo Clinic study shows that it just may be worth your while.
The study has found that more than 1 in 5 patients referred for a second opinion—for many different conditions—may have been incorrectly diagnosed by their health care providers.
James Naessens, SC.D., of Mayo Clinic’s campus in Rochester, led the study that looked at medical records for 286 patients whose healthcare providers referred them to Mayo Clinic for a second opinion.
Dr. Naessens found that 21 percent of the time, the final diagnosis was completely different from the original diagnosis. Sixty-six percent of the time, the second diagnosis further clarified or better defined the original diagnosis. And 12 percent of the time, the second diagnosis confirmed the first one.
Why, especially, would it be beneficial to get a second opinion if your doctor has recommended you need a transplant? We chatted with Harmeet Malhi, M.B.B.S., transplant hepatologist in Mayo Clinic’s Transplant Center, and this is what she said:
- To make sure you have the right diagnosis. Malhi explained that just as Dr. Naessens’ study found, it is really worthwhile to ensure your diagnosis is correct. In fact, just recently, she said, she saw a patient who arrived with one diagnosis and left with a completely different one.
- To get another potential chance if you were turned down. Transplant centers throughout the country do things differently than one another, Dr. Malhi says, making it wise to check with another center for a second opinion if one center tells you “no.”
- To be at a center of expertise for your specific condition. Seeking an evaluation at another transplant center for your particular case, especially if it is complicated, may make transplant a possibility. Transplant centers tend to have their “specialty areas,” or conditions they excel at treating. For example, Mayo Clinic’s liver transplant program has special expertise in bile duct cancer as well as transplanting patients who also need bariatric surgery for severe obesity. To make an informed decision about what center to see for your condition, visit the Scientific Registry for Transplant Recipients, which provides information on outcomes at transplant centers nationwide.
Therefore, if resources allow for a second evaluation and listing, it might be worth considering.
If you decide to pursue this, however, how would you even tell your doctor that you want to get a second opinion? Wouldn’t that be just plain uncouth?
“I don’t think it should be awkward to speak to your doctor about getting a second opinion,” says Dr. Malhi. “It should be done very openly. I don’t think it should be done in a secretive manner. I hope most physicians would feel comfortable with their patients seeking a second opinion.”
What has been your experience with getting a second opinion? If you have received a second opinion, what advice would you offer for broaching the subject with your provider?
- Read more about Dr. Naessens’ study.
- Explore Mayo’s Transplant Center.
- Request an appointment.
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@mayoclinictransplantstaff I figure if a doctor resents a second opinion he/she is not a doctor I want to work with. I feel they should welcome another opinion confirming their diagnosis and if not a confirmation seeing something they did not themselves consider.
JK
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4 ReactionsIs a visit to the doctor/hospital who is scheduled to do the surgery considered a second visit?
@beagen06 I am not sure who you are addressing, it helps if you put the person's name preceded with the @ sign to identify whom. At any rate, I would think a second visit would be allowable if it is necessary. Are you on Medicare? I have not had anything rejected and I have had many, many visits. I presume you must have additional questions for the doctor. That surely should be covered.
JK
@beagen06, I have learned that sometimes talking to the surgeon, is like a second opinion. He/she has a higher level of training and expertise as well as the latest information and access to current research. Usually you will have a pre-surgery consult with the surgeon. You will learn the procedure, and potential risks as well as the benefits, and the recovery/follow-up.
I think that if at anytime you are questioning or in doubt, it is your right to seek a second opinion.
Rosemary
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1 ReactionJK, I recently joined Mayo Clinic Connect and this was my first attempt at
getting info about my condition. I chose TRANSPLANT and HEART and BLOOD as my
categories as they seemed the closest to my condition which is a leaky Aortic
Valve. I was told by my Cardiologist about 3 or 4 years ago that I have a
leaky valve but that it was minimal but we will keep checking every 6 months
which we have done. At my most recent visit I mentioned still having shortness
of breath and his reply was "it may be time for replacement." I took a "Echo"
and am scheduled a follow up visit next week (Aug 10). He also mentioned a new
procedure called "TAVR" which is less invasive than "open heart surgery". In an
effort to get ahead of all this as well as get info on this procedure so I may
ask intelligent questions to my heart doctor I joined the Clinic Connect sent
off this question. If you can point me in the right direction or forward this to
the proper category I would greatly appreciate it.
Thanks
Larry B.
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1 Reaction@beagen06, Larry, I am not familiar with your condition. Have you looked at the discussion group, Heart and Blood Health? Here is a link to that discussion group. https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/scussion group,
I am also going to ask @kanaazpereira , one of our moderators, if she has anything to add.
Rosemary
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1 Reaction@beagen06 Hi Larry B. I had a liver transplant but I know nothing about your issues unfortunately. I wish I could help but I know there are others on here that might be able to point you in a better direction, as I see Rosemary has done.
My brother has heart issues but yours sound different from his. Frankly I always thought that I would just keel over and die from heart problems some day, my parents and most of my relatives on my mother's side did just that. After the extensive tests prior to my liver transplant I discovered that my heart is going along pretty well, thankfully.
I hope you get some answers and that you can find the information you need to go forward.
JK
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1 Reaction@rosemarya,thank you very much for your comment, it was the same
comment my family doctor told me when I asked him. Thanks again. Larry
B
@beagen06, Yikes! I guess that I have spent so much time in doctor's offices that I'm beginning to sound like one.
I hope that you will get the answers and the treatment that you deserve.
Rosemary
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1 ReactionThank you, @rosemarya.
Hello @beagen06,
If you would like to start a discussion in the Heart & Blood Health Group, here are some suggestions:
1. Click the group that interests you, in this case, Heart & Blood Health.
2. Click on the “START A DISCUSSION” button to start a new discussion.
3. Give your discussion a title (maximum of 70 characters) that briefly describes your message and will help others who may want to participate find it.
4. Type your message in the field provided and then click “CREATE DISCUSSION” to post your discussion in the group. You will then receive email alerts when someone posts in the discussion you created.
You may also wish to join these existing discussions about transcatheter aortic valve replacement (TAVR), and leaky aortic valve in the Heart & Blood Health group:
– Aortic Valve Replacement: https://connect.mayoclinic.org/discussion/aortic-valve-replacment/
– My heart Dr talking about doing a TARV stent https://connect.mayoclinic.org/discussion/my-heart-dr-talking-about-doing-a-tarv-stent-i-would-love/
– Aortic Stenosis & Valve Replacement:: https://connect.mayoclinic.org/discussion/aortic-valve-calcification/
Here’s a video by Dr. Pochettino, an aortic surgery expert at Mayo Clinic, explaining what patients need to know about aortic surgery: https://www.youtube.com/watch?v=s3plTqJ9E4s
In the meantime, here’s some information on transcatheter aortic valve replacement (TAVR) http://www.mayoclinic.org/tests-procedures/transcatheter-aortic-valve-replacement/basics/definition/prc-20021101, and I'm tagging @cynthia2017 @hopeful33250 @jillheart @ch246cf10 @judytru @wandering to bring them into the conversation, as well.
@beagen06, are there certain times in the day when you notice you are short of breath? Did your doctor explain the results of the Echo?
And, please let me know if you have any questions about getting started on Connect or posting a message.
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