Lisa's Journal

Lisa Silverman  Tammy I’ve met w/multiple surgeons at this point and never heard this stat before. I’m messaging my cardiologist to fact check.

Adam Pick  Hi Lisa,

I believe Dr. Khan is referencing a mortality rate for severe MR that is not treated for a long, sustained period of time. 

I believe there is data suggesting a 5-year time horizon for mitral regurgitation just as there is research suggesting a 50% mortality rate for a  two-year timeline for severe aortic stenosis without treatment.

That said, I’m not a doctor. So, I’ll ask Dr. Khan.

I can’t imagine your medical team would put you at risk if emergency surgery was required. Make sense?

Best regards, 
Adam

Adam Pick  You can find more information specific to mortality related to severe mitral regurgitation that is not treated at this link - https://www.heart-valve-surgery.com/mitral-valve-disease-awareness-week

Adam Pick  More specifically, the research is referenced in Alliance for Aging Research, The Silver Book: Valve Disease, 2018.  Hope that helps!

Richard Munson  Mitral valve prolapse without symptoms is the silent killer. I found my moderate to severe situation during a routine physical . Doctor heard a little noise and scheduled an echo. As luck would have it he was my pcp but had cardiology training or who knows. How many out there never find it. 

J Alexander Lassally  I think those stats are more for the "total do nothing" crowd. Eventually, it gets you. But not applicable to younger patients who still have heart flexibility ! 

Richard Munson  What a great question lisa. I know i had a zillion tests prior to my surgery 3 years ago, including a heart catherization to check for blockages but were any of them a full body ct scan , i can honestly say i have no idea. My suspicion is i did not but one never knows. I did not watch the webinar but my takeaway from hearing that  portion of it seems to confirm what i have wondered about that  bouncing back and forth from heart lung machine to regular heart action can truly shock your body. My analogy has always been like turning back on the power to your house after a blackout. There is always a jolt due to some breakers being still in the on position. I recall on one such occasion my t.v. Blowing once power was restored as it was on when we lost it. Love to hear from others. 

Susan Lynn  Lisa - I had a CT with contrast of my chest, abdomen, and pelvis. You need to trust your doctor. He wants a successful procedure as much as you do. Please call me if you want to chat.

Yumiko Ishida  CT scan was never mentioned to me in the context of my heart surgery, but I also knew pretty early on that I wanted a traditional sternotomy. Minimally invasive procedures are inherently more complicated and higher risk, so the quality of the pre op images are extremely critical. Is it possible your local hospital is talking sternotomy not robotic surgery? 

Pamela Gregory  Hi Lisa. I traveled from DE to CC for Aortic Valve and Root Replacement . I had to be there several days before surgery for testing and meetings. After surgery you are generally in the hospital for about a week and have to stay in the area for an additional 5-7 days to make sure everything is going well and get clearance to fly home. I was actually in the hospital for 2 weeks because of a complication and stayed in town for 5 days to get the clearance. Flying was very easy. You would want to make sure to have a wheelchair (just call airline) on both ends of the flight. Walk before flying and if the flight is longer than an hour walk hourly (double check of coarse with the team) to prevent blood clots. Don't hesitate to reach out with any questions

Peyton Davies  I’m from Wichita. My cardiologist is at the University of Kansas Medical Center. I’ve had 1 heart catheter done there and I’ll be back next month for my second heart catheter. I will be traveling to NYC to have my aortic replacement. 

Valerie Allen  Hi I went to CC in April for aortic replacement and aneurysm repair. I was very nervous leading up to it, but once I got there I knew I was in one of the top heart hospitals and I relaxed. If affordable buy a first class ticket on the way home. And as Pam said, secure a wheelchair for the airport through the airline. Makes things 100x easier! There is a hotel attached to CC. They have a patient rate and this makes things so easy, especially in winter. There are several others walking distance with more affordable prices. My care was just what I had hoped.

Phyllis Petersen  I travelled to CC from Tucson, AZ in October 2016 for robotic MV repair with Dr. Gillinov. They really are a great facility with top-notch care. If I can answer any questions for you, message me here or at fabphyllis@gmail.com. 

Joshua Nowack  So I had an option to go slightly local (15 min away) to Hoag (Newport Beach CA) and to go to Cedars-Sinai (Los Angeles CA).  Ultimately due to insurance they ended up sending me to Cedars - which was my desired outcome in the first place.  But both surgeons would have done through robotic repair.  Same condition as yours.  Now the Hoag doc does one mitral repair every other week.  His procedure takes about 7 hours and it's a week long stay at the hospital.  Cedars - then Dr Trento (now presumably Dr Chikwe - who is a frequent guest of HVS)  - does two mitral valve repairs every day.  The procedure typically takes about 2 hours.  Nothing replaces experience.  If you have the means to go to the best - and CC is the best - go see the best.  Statistically, and you can look the stats up, by the journals all point to centers of excellence have better outcomes.  So if it's an option - go to CC or any of the featured centers from HVS. 

Robert Miller  My BIL is a surgeon that does a lot of robotic surgeries (not heart) and he highly recommended me going that route, if possible.

I have not heard that this procedure might give you more pain. Actually, I heard just the contrary. But maybe I got wrong information.

Robotic surgery has a lot of advantages, incl. faster recovery (with open heart surgery the main recovery is for your chest to heal), much smaller scars (which some people care about), a lesser risk of infection of the scars, more precise as those "robots" remove the slight shanking of a surgeons hand, etc.

The biggest disadvantage is, that  the surgeon doesn't have such a clear picture of everything and in case of an emergency, the surgeon doesn't have full access to your chest so he might end up having to open your chest. That's unlikely to happen but it could happen. 
The important thing is that your case isn't a complicated case (doesn't sound like it) and that you select a surgeon that has a lot of experience doing robotic surgery. 

As for doing it sooner than later when it's inevitable, I 100% agree. If you have severe regurgitation then the heart and your blood vessels will try to compensate for that and this affects both the heart and the vessels in a negative way. So time just makes things worse. 

You might find more information on the learning center. Scroll down to the bottom because that's were the interesting links are. Ignore the stuff at the top, unless you happen to be interested in it.  https://www.heart-valve-surgery.com/learning-center.php 

Richard Munson  Interesting. Just had laser eye surgery yesterday and all those advantages you state are also listed as a reason to go this route with the eye. Time will tell. 

Lisa Silverman  Thank you Robert that is really good information to hear and I’ll definitely look at those links! My surgeon did say if things get weird he will have to change tactics and go in more invasively. Said he does 1-2 robotics a month and over 100 heart surgeries per year?  Richard this is also good to hear and sure hope you are recovering well🙏🏼

Doug Fults  I found the videos here on mitral valve repair & robotic surgery really helpful  (in the Learning Center, or through the VIDEOS nav link).    I'm scheduled for just that on September 10, will let you all know how it goes.

Rita Savelis  The sternum does not hurt when cut. But robotic goes in by the ribs and can be painful for some, especially women because they have breasts. Pain varies and is very personal. Medical staff is there to manage your pain. I had no pain with traditional surgery but much exhaustion and discomfort. 

Joshua Nowack  @Robert Miller - to address the pain factor - robotic cuts through muscle and more.  So while risk of infection and overall heal time is faster - generally, robotic can be a more painful recovery.  I mean the only narc pills I took was when they pulled chest tubes from me.  But there was a little bit of discomfort for a couple of months following surgery because of the muscle cuts. 

Doug Fults  Hi Lisa, I have "severe" mitral valve regurgitation from an endocarditis episode some 32 years ago (mild until just recently, but now "4+" on a scale of 1-4).  We reached out for appointments to Mayo and CC, CC had a cancellation so went there for evaluation.. They'd initially suggested I'd need a replacement, but after a TEE I was referred to Marc Gillinov, whose office responded quickly (after flying out there for a few days of testing) conveyed that I was a repair candidate (not guaranteed, but that he thought possible).  I'm 63, if I were younger I'd definitely seek a surgeon with a background of successful repairs, as neither a lifetime of blood thinner meds nor a follow-on surgery to replace a worn-out tissue valve after 10-15 years sound like attractive options.  The Mitral valve is supposedly the most "repairable" of the valves, which can last a lifetime - though that is not always the case, as can be testified to by the occasional member here.

Rose Madura  Lisa, Welcome to this site!  I commend you for taking the bill by the horns and seeking out a second opinion.  God bless you on this journey and please keep us posted.  

Robert Miller  I would definitely get a second opinion. Even if it's just to ease your mind that this needs to be done. I had VERY severe mitral valve leakage. They didn't want to let me out of the hospital. From what I have been told, you can't really tell from a TEE if you really need a replacement. Instead, they will first try a repair. Then they test if the repair works. If it does, then they will leave it at that. If the repair still shows leakage, they will do a replacement. I am not sure this is really the standard procedure. You can find a lot of information on this link. Unfortunately, they put a lot of distractive stuff at the top so you think it's nothing interesting. But scroll down and you will find a lot of very useful information.
https://www.heart-valve-surgery.com/learning-center.php

Susan Lynn  Lisa - You're doing exactly the right thing by getting multiple opinions. Write down all of your questions and make good use of the consultation time. Be sure to ask about volume of mitral valve surgeries and success rates. Mitral valve surgery can be a one-time procedure if performed correctly. Please keep us posted on your progress.

Lisa Silverman  Thank you so much Robert and Susan! I was scared to post on here because I’m just plain terrified of all this but I am feeling better hearing from all of you🙏🏼

Robert Miller  I 100% agree with Susan about bringing questions on a piece of paper. For my second surgery I had a full page of questions. I left some space between questions so I can scribble down some keywords, that after the consultation I converted to more detailed notes. Initially I did go 'off script' as some things the surgeon said lead to other questions. The surgeon did take all the time I needed. When I thought I had everything answered, the surgeon asked if he could see my list of questions because he wanted to make sure all of them were addressed properly. Btw, that was Dr. Luis Castro. https://www.heart-valve-surgery.com/surgeons/dr-Luis-Castro-Redwood+City-California.php