Tammy's Journal

Kimberly Eisenhut  Tammy, I was told the same thing when I spoke to them last year. There are some surgeons that have studied under him that are at Northwestern also. I go to Northwestern for my Tricuspid regurgitation, which is now almost to the severe point. I go every 6 months now and am still in wait and watch mode. I completely understand how you feel, as tricuspid is difficult to find more outcome inflrmation and it is not as common as other valves. I have spoken to Dr Malaisrie, who studied under Dr McCarthy, and he is very knowledgable. There are others I want to speak to at Northwestern also, as my insurance will only cover me for my surgery locally, so my options ar limited. I am grateful though, that I live only 90 minutes from the city. I also go to Northwestern in McHenry and Huntley in Illinois, which are all connected to the same network. I would call Northwestern and speak to the cardiac dept and ask any questions and for the surgeon with the most experience in tricuspid surgeries. I will be doing the same soon. I want to be prepared when they tell me it is time. My cardiac specialist is Dr Rigolin who is also with Northwestern downtown. I was transferred to her from my regular cardiologist 6 years ago when my trisucpid went from mild to moderate/severe. It has stayed relativeily the same so far. I will try to help if I can with any other questions about Northwestern.

Tammy Gonzalez  Good luck to you Kimberly. I'm looking at Dr. Johnston right now. I found out he's actually from  Cleveland Clinic. He gets great reviews. Like you, I'm not finding much information on tricuspid repair/replacement, or long term outcomes. My whole adventure started with persistent afib which is currently resolved, but I'll always wonder if the afib caused the valve issues or if the valve issues caused the afib. 

Kimberly Eisenhut  Good to know anout Dr Johnston. I did see another person here that used him and had a great experience. There are quite a few Drs at Northwestern that came from Cleveland Clinic.

Margaret Fielden  I would be very interested to hear about peoples' experiences with mitral valve replacement and tricuspid repair too. My surgery for both will take place on October 5th. Not long now!

Rita Savelis  I had my aortic and mitral valves replaced in 2015 and my tricuspid reinforced. I did not know that my tricuspid was worked on (until after surgery) but my surgeon said that he always looks at the tricuspid because work on the mitral can make the tricuspid change in the future.

Margaret Fielden  My surgeon is repairing the tricuspid along with mitral valve replacement on October 5th. Your story was so helpful Rita, I wish you well

Margaret Fielden  Hi Tammy, My surgery was cancelled as I came down with covid the day of admission. It will be in 4 to 6 weeks at Royal Papworth Hosiptal in Cambridge UK.  I hope you get the best help and treatment.

Valerie Allen  Hi Tammy -my surgeon was Dr Roselli at CC. He is an aorta specialist so probably not your guy, I’m guessing. I can highly recommend both him and CC. They have their act really together and the system and support is smoothly run.

Valerie Allen  I did travel. I had to fly through Atlanta with a layover both ways. I requested wheelchair assistance both ways though probably didn’t need it going up. I definitely needed it returning. For the return trip we got first class tickets and that also helped a whole lot as we boarded and got off immediately. It was rather grueling but not nearly as bad as I thought making those arrangements.

Valerie Allen  I think Dr Gillanov is often mentioned here for mitral valve but I’m sure there are others. I’m sure others will jump in.

Suelynn Hanegraaf  Dr Tomislav Mihaljevic was my CC heart surgeon for my first aortic valve replacement in 2011.  Excellent but since 2018, he heads CC as their president  & CEO. The vice chair of CC’s cardio-thoracic surgery dept - Doug Johnston, MD - was recruited by Northwestern Medicine in Chicago last year and is chair of NM’s cardiac surgery dept. Dr Johnston did my second AVR in April of this year. Excellent as well!

Ana Kelton-Brand  Hi Tammy, I live in northern Broward County and had considered Cleveland Clinic in Weston, but I heard that the top heart valve surgeons are in Cleveland, not Weston.  I did want to stay local for my surgery, so I had my heart surgery at the University of Miami.  I had a mitral valve repair, an aortic valve replacement, and replacement of the ascending aorta at the end of December, 2023.  The surgeon was Dr. Joseph Lamelas, who did all of it through minimally invasive surgery.  The care at University of Miami was excellent.  He has a great team.

George Gardopee  Hi Tammy. I went to the Cleveland Clinic to have Dr Gillinov repair my mitral valve (and my tricuspid valve at the same time). I had an excellent experience at the CC.  I didn’t have to go far as I live in the Pittsburgh area so I can’t comment much about long distance travel.  We went the AirBnB route for the stay in Cleveland but I think a hotel may be a better choice.  I detailed my experience in my journal, so I won’t repeat it here, but I can highly recommend Dr Gillinov and the CC. 

Robert Miller  Dr. Gillinov was my number 1 choice but it didn't work out logistically. He is very well known for minimal invasive surgery and generally considered a very accomplished surgeon. Make sure that he is actually doing the surgery. He is also hard to reach. I actually liked a smaller local hospital with a very experienced surgeon. Just something to consider. 

Brady Busch  Hi Tammy,this is a good site for support and information.
There is a SURGEON FINDER link to click on,that will list different ways,to learn about these doctors and their specialties.

Robert Miller  This site has a list of surgeons. If you are open to travel, then you obviously have a much larger selection. Open heart surgery? Minimal invasive surgery? Ask how many such SPECIFIC surgeries they did. Will they do they surgery? Some "famous" surgeons at universities and other places have other surgeons do the work while they are supervising/observing the surgery. 
https://www.heart-valve-surgery.com/surgeon-database/home.php

Grace Mason   Hi Tammy,
I have seen Dr Adams at Mt Sinai, Dr Gerdisch in Indianapolis and Dr. Gillinov at CC mentioned as top mitral valve surgeons. I'm sure there are other highly recommended surgeons that someone may chime in about, but those names might be a place to start.

J Alexander Lassally  Hi there. I read your post. Best way to start organically is recognize that there are around 25-30 mitral valve reference surgeons in the US. These are high volume and have high excellence in outcomes. I have researched this EXTENSIVELY for my surgery.  (high volume is more than 60 a year, preferably more than 100.  High quality is somewhere >90 to 95% success. I don't recall specifics.)
The closest is Sarasota, but that doctor is a DO not an MD which was noteworthy to me. Miami is a center, too, but they do it "their way" which is not the same as the big classic hospitals in the Midwest and Northeast... You will have to get familiar with plusses and minuses of Steronotomy and Thoracotomy - the two different main approaches, and be prepared to be told each is superior by respective surgeons !  Happy to guide. 

J Alexander Lassally  And know that the surgeons on here are partially matched with the reference centers, and partial not. So there are only 25-30 reference centers in the US

Delise Becker  Hi, Tammy. As others have said, this is a great site for starting your research. Many folks on this site traveled to have their surgeries. I chose to stay close to home and had my surgery in Austin, TX. September 26 will be my one-year "valveaversary," and I am feeling wonderful and couldn't be more pleased with my surgical outcome. (Had a mitral replacement, tricuspid repair and atrial appendage clipped.) I noticed in your bio that you are in the Tampa, FL, area. There is a Mayo Clinic in Jacksonville, and it has a cardiovascular program. You might want to check them out as well, since that would be closer to home for you: https://www.mayoclinic.org/departments-centers/cardiovascular-medicine-florida/overview/ovc-20557804Best of luck to you!

Chris Hall  This community truly got me through 2 open heart surgeries.  You're in the right place. We've all been where you are.  Good luck