Newbie confused between diagnosis of Cleveland Clinic and Chitwood :

[ashish20000]

Hi All
I am a 30 yr. old male from Indianapolis diagnosed with Severe Mitral Regurgitation recently. I am pretty much asymptomatic and never felt breathlessness or other stuff. I had a slight chest pain on left side and went for PCP check-up which resulted into cardiologist referral, an EKG, Echo and TEE. There is no significant enlargements or other structural problems. The moral of the story is that I will have to go for mitral valve repair surgery in next six months.

I have been researching about surgical options available to me and contacted Dr. Tomislav Mihalijevic in Cleveland Clinic as well as Dr. Randolph Chitwood with all my medical records and Echo/TEE videos. Both have responded that I am a suitable candidate for robotic repair and they can do it with likeliness of >99% success as my case doesn't seem to be more complex than the regular ones.
The problem is that Dr. Mihalijevic assessed my condition to be a congenital cleft in anterior leaflet of mitral valve while Dr. Chitwood thinks it is a prolapse of anterior and posterior leaflet with more work to be done in the posterior leaflet.
The cardiologist who did the TEE has written in the report that there is a prolapse of anterior and posterior leaflet as well as a possibility of cleft mitral valve.
I sent the assessment of Chitwood to Dr. Mihalejevic but Dr. Mihalejevic still feels confident in his assessment and wouldn't comment on Chitwood's. I haven't yet asked Chitwood about Mihalejevic's findings.
Now I am confused that whom to believe. Both are excellent surgeons with hundreds of successful robotic surgeries records. Cleveland clinic is my preferred place because its closer to me and I also have family there who can help me during my stay there.
Please suggest what should be my next move as I am really confused. Please feel free to ask if you have any questions. I would also appreciate if you share your personal experiences with both the surgeons or with the surgery of this nature. Thanks a lot.

Ash

 

[kfay]

Ash, Echo's and Tee's can only give the surgeon an idea of what they will find, but it is not uncommon for things to be different once they get in there and can actually see for themselves what the situation is. I wouldn't get to wrapped up in the different opinions of these two surgeons. Either one of them is going to fix whatever they find once they get in there. If CC is more convenient for you, then I would go there. They are both excellent surgeons and I think you will be fine with either.

Best of luck to you.

Kim

 

[Ross]

I agree with Kfay. It's a moot point as to who fixes it, just so long as it gets fixed.

 

[Maryka]

I don't know the answer on this one. I never studied up on robotic surgery, since my situation also had an almost-hidden aneurysm that my surgeon could not "see" until he actually got into my chest. (It could not usually be seen, except with a thoracic CT scan.) If you had some time and endless money I would recommend getting the opinion of Dr. Liang at Stanford who was the only one who actually got a picture of my aortic valve (I had the cleft, I guess. That is what it looked like.) Of course I am partial to Duke Cameron at Johns Hopkins in Baltimore, so you could check in there also.

I hope someone who knows about robotics and diagnosis who will write you soon!

 

[Lynlw]

I agree with everything Kfay said.

 

[bvdr]

Nothing really to add to the replies given. I don't see that the two opinions are really in conflict with each other. I know Dr. Chitwood is a really pioneer in the area of robotic surgery and he is actually who my PCP was hoping I would choose and that was over 6 years ago. He has just that much more experience now. I hope all goes well for you and you fall into the 99 percent.

 

[river-wear]

If I understood your post correctly, Ash, both doctors are confident they can repair whatever is wrong and they are both with the Cleveland Clinic? If so, then I agree with Kim (kfay) that you should choose whichever surgeon you are most comfortable with and proceed. The surgeon will do whatever it takes to fix the valve once they get inside, and if they're both highly regarded you'll be fine.

Best of luck with your surgery.

Michele

 

[Lynlw]

If I understood your post correctly, Ash, both doctors are confident they can repair whatever is wrong and they are both with the Cleveland Clinic? If so, then I agree with Kim (kfay) that you should choose whichever surgeon you are most comfortable with and proceed. The surgeon will do whatever it takes to fix the valve once they get inside, and if they're both highly regarded you'll be fine.

Best of luck with your surgery.

Michele

Chitwood is I believe either N or S Carolina, I'm pretty sure North.

 

[Nupur]

Hi and welcome to the forum! Coincidentally, I am also of Indian origin, and have been told that I have a congenital cleft in my anterior leaflet by a surgeon, who thinks he can repair it. The cardiologist's echo report said bileaflet prolapse which in her opinion would be hard to repair. I got different reports about the severity of the leak as well. I guess it is hard to get the exact picture from a 2-D echo, although TEE's are definitely more accurate. I have been told that anterior leaflets are harder to resection and repair, but nothing that skilled surgeons can't handle.

There is a lot of detailed information on this website that I read before I went to talk to the surgeon.

http://www.mitralvalverepair.org/content/view/64/

Good luck with everything. Wishing you a successful repair!

Nupur

 

[Mentu]

Ashish, my Cardiologist and Surgeon had some disagreement about my valve problem. In the end, the diagnostic details didn't matter because my surgeon was prepared to correct whatever problem he found. It is most important that you have confidence in the surgeon that you select. He will know best whether to repair or replace the valve when he actually sees it. If you have confidence in your surgeon you must rely upon his knowledge and experience to fix your heart. Welcome to our little community, Ashish.

 

[netmiff]

I had aortic valve replacement, and even had cath before surgery, but it was only when the surgeon got in there that he discovered I had a bicuspid valve; no test beats they eye and hand of a good surgeon, and as Ross said, if they are both good, the important thing is to get it done. From your post, if you have family in the Cleveland Clinic area, I would, myself, go there as you may need some help immediately post-release.

 

[ashish20000]

Thanks for all the wonderful replies. Makes me feel much better. As I see some of you are planning surgeries or have recently undergone it. Didn't any of you had an option of robotic/ Da Vinci surgery? Is there a reason that you people went for other way?
My Cardiologist thinks that median strenomy is a better option for me looking at my age and life-expectancy but at the same time he is pushing a doctor in his hospital even after I made it clear to him that going to Cleveland Clinic is a viable option for me. He seems to have been pissed as he is not responding to the emails which I sent to him asking about questions to ask to surgeons or the responses from Cleveland Clinic or Dr. Chitwood.
He may have a clear intent and may be making sure that I get the best possible treatment but there is some gray area in this.
I would love comments on your understanding of robotic surgery and possible benefits/ pitfalls. I have only been exploring robotic surgery options and I have got positive replies from such surgeons. Please let me know what you think. I am going to meet Dr. Tomislav Mihalijevic in Cleveland Clinic in January. Thanks again and wish great health and happiness to all of you wonderful people.
Ash

 

[Nupur]

Quite a few members here had Da Vinci procedure, and I am sure they will chime in. I think recovery is much faster with robotic procedure. In the hands of an experienced surgeon who does lots of these procedures, I don't see any reason not to go for it.

The possible "pitfalls" I have heard of :
a) slightly longer time on the bypass machine (not sure if this is indeed true, please ask the surgeon)
b) a replacement instead of repair because of the constraints of a robotic surgery. Again, with a surgeon who does mostly robotic procedure, this should not be an issue.

Don't worry about the cardiologist not being supportive of your decision to go to Cleveland. Ultimately it is your decision and health and if you have the option to go to the best clinic, why not?

 

[thenewmarket]

This is a situation where you have to follow your "gut" instincts. If someone in your immediate area is not responding to you after you have seen them.......I would find a new physician regardless of what you decide! Cardiologists and cardio thoracic surgeons in our area were all telling my husband to "wait" on surgery with a 5.1 ascending aortic aneurysm. They also assured him after TEE, CT, and everything that he did not have a bicuspid aortic valve. WELL, we got a second opinion at Cleveland Clinic........it was time for surgery and he DID have a bicuspid aortic valve. We went against all popular opinion in our area...........I must say we feel blessed that we did!

Given the same situation again........Cleveland Clinic here we come!

 

[Bear72]

I may be able to help with this a little bit. I had DaVinci Robotic assisted repair three months ago. Same deal, severe regurgitation, asymptomatic (ran 25 miles a week prior). The surgeons you are speaking with (both whom are excellent) are giving you an opinion based on what your TEE, ECHO, etc. But it's just that, an opinion. When I had my surgery, the surgeon was pretty accurate on his prior diagnosis but not exact. My repair turned out to be complex (not the original diagnosis) so they won't know until they get in there and see what the situation is. The other thing to keep in mind is that they wont be able to officially tell you DaVinci is possible until you have some more tests. I would say you probably have an excellent chance of repair via robot assist based on the Dr's findings.
I think you can't go wrong with either surgeon, but you should keep in mind that the facility as a whole is important too. If you decide on Cleveland, you will not be disappointed.
I'm not sure how long a person is on the heart lung machine during a sternotomy or port entry, but I was on for 87 minutes.

 

[LuckyGuy]

I would agree with the other posters that this is a common situation. The current imaging methods just aren't accurate enough for a definitive diagnosis, that's why you'd want to pick the best surgeon you can find and let them make choices when they're in surgery.

I'd been told for years that my loud murmer was likely caused by a a bicuspid aortic valve, and my mom had one as well, so I certainly never questioned it.

When my stenosis got more severe and I had my pre-surgery workup, my surgeon (Dr. Lytle of Cleveland Clinic) wouldn't even confirm whether my aortic valve was bicuspid or not based on the workup, only that in either case he wanted it out. Turns out it was not bicuspid and my problems were presumably all caused by radiation therapy.

 

[billr]

Hi Ash--

I am not surprised that two renowned surgeons have different takes on your diagnosis -- it happens all the time.

BTW, Dr. Chitwood did my AVR ... great surgeon, great person, and one that's been through OHS himself (a plus in my opinion). "His" hospital (East Carolina Heart Institute really is his as he's in charge) is only about 18 months old. Beautiful facilities and all the latest equipment. Great nursing staff as well. Be aware that the Greenville NC airport only has a few commercial flights per day so Cleveland may be easier to get to.

If Chitwood hadn't done my AVR I would have gone to Cleveland Clinic. I have zero regrets having gone to ECHI.

Good luck no matter what you decide--

Regards--

Bill

 

[ashish20000]

Thanks to all of you. Looks like CC is going to be place of my surgery. I contacted Dr. Tomislav Mihalijevic to begin with but with more research I am finding Dr. Gillinov is another famous surgeon. I have an appointment scheduled with Dr. Mihaljevic in January.
Do you people who have been there and done that, would give me some advice that who should I choose as my surgeon out of these two.
Will that even be an option provided that I have already contacted Dr. Mihaljevic? Please advise with the best. Thanks.
Ash

 

[Marcia58]

Ash,

I live not too far from you--about an hour north of Indy, near Kokomo. I had mitral valve repair on March 26, this year at the University of Chicago. It was there or Cleveland Clinic, but we have good friends in Chicago, so the support system available tipped the scales that way.

I was looking for the DaVinci robot as well, but because of some other health issues, my surgeon opted to go with a mini-thoracotomy. His reasoning was that it was about half the time on the pump, compared to the DaVinci, while still being less invasive than a sternotomy.

Marcia

P.S. I'm sending you a PM.

 

[deano89]

as said before the TEE only gives a good idea of whats wrong my mitral valve was described as bitty!!.
they wont know till there in there for sure! i was the same as you no noticable symptoms, but it turned out my repair was more complex than first thought my leaflet was actually torn! i had the full sternoctomy that was on the 22nd oct 09 and i am all healed up now and feeling pretty good.
just go with the surgeon you feel is the best for you.