Just a quick follow-up note regarding the MitraClip. On the first page of your guestbook is an entry claiming 57% vs 10% rate of badness with surgery vs MitraClip. If you read the study results you'll note that what counts as bad events is exceptionally broad. The vast majority of the adverse events in the surgical cohort were represented by blood transfusions. Not so happy since you'd rather have your own blood, but a far cry from death, re-surgery, stroke. Take transfusions away and you get a different picture. You can catch a study summary at:
Google has the article cached at the moment, so if theheart.org wants to charge you for access you can get to the article free through Google: Put the url above in the Google query box and it will be one of the first results shown. Then click on the word "Cached" to view the article.
WIth a valve repair vs replacement rate of more than 90% the current standard, you are right to balk at the locals. A replacement is an easier surgery to perform so takes less skill and more surgeons can do it. In this day and age it is pretty unusual to need replacement because the repair techniques are so good and keep getting better. But sometimes a replacement is in fact needed. So be sure to get the full scoop, not just a one-liner. Some things that can lead to needing a replacement are heavy calcification and anterior leaflet prolapse. Even with a replacement it is important that they leave as much structure intact as it provides future benefit. You can research all this online or in cardiology textbooks and then discuss with prospective surgeons. You will want to look at the American College of Cardiologists' / American Heart Association Guidelines. It is freely available at this URL:
With this in hand, talk to your prospective surgeons and have them walk you through the decision process regarding their recommended surgical approach.
It doesn't talk about the MitraClip though. If memory serves, the mitra clip is still investigational and primarily recommended for patients that are not surgical candidates. Probably because there's no long term data on its effectiveness. The clip does not stabilize the base of the valve, doesn't restore normal flow patterns, and doesn't re-attach any ruptured tendinae. So its a prosthetic, not a repair. It has been very helpful though for a certain class of patients. Google the clinical trial: "Everest II clinical trial" for more information.
You probably want to consider the lowest risk surgery that is effective and right for you. Folks that end up in the ER can't be so choosy - they're happy just to survive. But you have the time to optimize your care. Survival rates at top places are better than 99% so you shouldn't settle for less.
You have to do what is right for you, but I'll tell you what I did when I learned I had severe mitral valve regurgitation when visiting my GP. First I balked. How can that be? I'm very active and healthy. Eventually I had an echo (TEE) that demonstrated the valve dysfunction pretty graphically. That motivated me to do as much research as I could, reading journal articles and cardiology textbooks and learn about prospects, therapies, surgeries, outcomes, etc. When I did that, I realized that the cardiologist my GP referred me to was not right for me. He was steering me to the local community hospital for surgery when the guidelines clearly recommended that I seek out a university hospital center-of-excellence.
So that's what I did, calling up the number given on the UCLA cardiology web site for a consultation. There they seemed up to speed from what I could tell and I jumped onto their train and a month later had my mitral valve repair - open heart. My research told me that was the least risky option, the one with the best outcomes and least complications. Sure, I have a scar. But it is a battle scar from a battle I won.
Other folks here on HVJ are happy with their minimally invasive repairs and they'll weigh in or already have on what that was like.
Jack, If you check out my journal you will see that I had a very difficult anterior leaflet problem to start with. Unfortunately, I did have complications resulting in a heart attack, etc. I do not think this was in any way a result of going to the Cleveland Clinic - or my surgeon. My issues were so severe that I am very sure had I not been at the Cleveland Clinic where they have every state of the art procedure available, I would not be here today. But you have to go where you're comfortable. If you go to the "outcome" pages on the Cleve. Clinic website you will see that their mortality and morbidity rates are far lower than the national average. Good luck with your choice. Oh . . . also . . . I am not too excited about the robotic surgery, although my valve repair was done with minimally invasive robotic surgery. The necessary bypass surgery required a full sternotomy and I must say that the pain I have is mostly from the minimally invasive area (right breast). The sternum pain is there, but not terrible and I have taken nothing but Tylenol. What is rather bothersome is the upper back (cervical area) pain which nobody tells you about. Ruth Howell
A few thoughts on this. 1. Seems like I heard not long ago that FDA approval was granted regarding some catheter procedure for mitral valve repair, but I don't remember where it was I have it in my mind I read it, and it seems to me there were at least a couple of catheter type procedures, possibly one being to stitch the middle of the two leaflets together rather than using a clip. 2. In my research process, I know I put down the idea of a catheter procedure for my repair (flail posterior leaflet) because it seems it wasn't appropriate and there wasn't enough secure success science with it yet. 3. Minimally invasive techniques are available at several locations by very experience surgeons, to include using the Da Vinci robot. 4. The rationale decision to me was to choose a place & surgeon who is experienced as I could find. 5. I bet you'll find a lot of recommendations for the Cleveland Clinic, although, from my research there were other very capable places for the minimally invasive procedures. Personally, I narrowed my short list of places to Columbia University, University of Maryland, and Cleveland Clinic, finally choosing Cleveland Clinic. 6. I would have preferred the catheter procedure, but, again, don't feel there's enough experience with it and feel it is only appropriate for limited types of faulty mitral valve anatomy issues. Good luck with your repair. ....Barry Stone
I'm not sure they won't let you pay for the mitraclip procedure if you have the funds. That seems weird to me.
BUT, I'm not sure where you're getting your stats . . . the mortality/morbidity rates at the top hospitals is under 1% and you have to factor in the fact they work on the toughest cases. Most likely if you have the surgery you'll be fine. Minor setbacks, yes. But nothing horrible. There are lots of us here who have had the surgery and are just fine.
If you can't do the mitraclip, research doctors who do the surgery with good results and TALK to them about your concerns.
Thank you, I have researched this subject to death it seems.
With surgery there is a 57% chance within the first 30 days you will either, die, have to be re-opened, or have some other major event, with the Mitraclip your chances of any of these things are less than 10%.
I am strong and healthy and work out at the gym 2 times a week minumum, my heart is huge of course but it is strong...but still, a 50/50 chance of living with surgery vs a 94% chance with the MitraClip sure sounds like better odds to me...I am at a stage 5 regurg and still working out, so that tells you I am strong...
As for the surgery I know it sounds awful but if you have to have it done know at your age, if you are in decent shape, you will be fine.
Sure it is easy for me to say but this is one of the most common surgeries done and it really is routine. Just a suggestion talk to your surgeon about what his clinical outcome are and how many of these the have done. It helped me to ask those questions.
slow down. relax. the clip is a temporary fix. I've done my research into it. I had my mitral valve repaired robotically on December 5th and at this very moment I am back to work teaching HS students. Everything is fine and will be for you too but don't look for short cuts. The surgery is major but not anything that is to worry about. seriously, been through it. seek out a Dr. in your area who can utilize the DaVinci robot and see if you are a cadidate.