Nicole's Posts

Nicole - i can't imagine getting that news so soon after surgery. I believe there was someone on this site who needed a re-repair within a year after surgery because the annulplasty ring somehow came loose. I think it was a full robotic repair, but can't recall for sure. While residual leaking is not uncommon after mv repair, it sounds like your situation is just as severe as it was before surgery. I would be calling a very experienced mitral valve surgeon who specializes in re-repairs for an immediate consultation. Depending on the cause of of this issue, you may also need a medical malpractice attorney. Two heart surgeries for a 29 year old are pretty traumatizing and MitraClip is not the answer. I wish you the best of luck. Please keep us posted. ❤️

Hello J Alexander and Susan ! Thank you both so much for responding, I don't have my TEE appointment for another week and I've been pretty anxious and wanting advice. Once we get a closer look, it will be determined whether or not I am able to get by with the clip or if I need a re-repair. So definitely getting a few opinions, but ultimately, want the most long-term and safest solution.. which sounds like it will be re-operative repair surgery. I had minimally invasive mitral valve repair with an annuloplasty ring inserted. Not sure if he used any robots and I don't want to disclose the name of my surgeon just yet but he is THE GUY to see in my area and has been wonderful to work with and explained everything so well in detail. He said this is rare and he's only seen it happen one other time before.It's really saddening but after 5 weeks I feel almost no pain.. just still lightheaded & have leakage :( Really appreciate your input and perspective because I have been wrestling with the possible outcomes in my head, knowing Mitral Clip isn't really the best solution at least gives me clarity and the ability to prepare in that case. Thank you both so much

Hi Nicole - I have extensively, extensively studied all of these choices (I do biotech planning and patient severity for my job). In addition, I do have meta analyses which show features of durability. As well, STS quality data which I can share. Anyway happy to share my email. (alassally14@gmail.com) For reference, many re-repair patients would naturally look to Mt Sinai or Cleveland Clinic for their choice. As did I. I would stay far far away from the Clip. It just does not make sense on a young person. Again, not a doctor, but just my hunch... Best of luck. I'm having surgery in a month!

Hi J Alexander, thank you so much for providing your email. I may be reaching out to you and I have contacted Mt Sinai today so thank you so much ! I will be trying to stay away from the clip, I agree it does not make sense for someone my age. Not excited for re-repair but excited to recover. Your input is extremely helpful. Thanks again and I know your surgery will go so well and you will recover beautifully and live a long life :) Many Blessings to you!

I also had a post surgical complication recently where I had a metal Aortic valve replacement and afterwards a couple stitches came loose causing a "Moderate Paravalvular leak". I did quite a bit of research and am now headed to Cleveland Clinic next week (I live in Florida but am flying to Cleveland) as I recently learned that they have been voted THE best Cardio Thoracic Hospital in the World for the past 4 years. Number one in the US for the past 26 years. That said, prior to CC I was first told that a re-surgery would be the only way to accomplish the fix. Cleveland Clinic is going in next week with a transcatheter procedure to plug the leak without invasive surgery. I would investigate that approach first if I were you but I would make initial contact with someone who oversees both the surgical and transcatheter labs. The reason I say that is because surgeons cut because that's what they know..., Just as Transcatheter Interventionalists have full confidence in their practice, so that's what they recommend. When the Chairman or Chief of the entire surgical department recommends your case down the chain then I'm betting that any bi-partisan perspective is set aside. However, from what I have also read, when doing transcatheter post surgical repairs you want to make SURE that you have a doctor who is very very experienced at the procedure you need repaired as well as an very experienced imaging and Anesthesiologist. This is certainly worth consideration prior to a second open heart procedure.

Robert - I am so sorry to read that you also have a post-op leak that requires repair. You are definitely going to a world leader and are sure to have an outstanding result! The mitral valve is a complicated repair because it opens and closes. The aortic valve can be repaired with a trancatheter approach because the valve maintains a continuous open space. They are perfecting trancatheter approaches for the mitral valve and someday all surgeries will probably be performed that way. The MiraClip they're proposing is a solution for some people, but there's no long-term results for someone as young as Nicole. The MitraClip was in trials and only being used on patients (who couldn't safely undergo surgery) when I was weighing my options six years ago. I wish there were something available for her that was less invasive. I 'wholeheartedly' agree with you - Nicole needs to see an expert for her next procedure and one who will refer her if the best approach is out of their skill set. There's no room for egos in heart surgery. Good advice! ❤️

Dear Nicole, I am so sorry you have to go through this. There were a few guys here who had this situation, and had to do a re-repair and it was successful the next time. I had mild to moderate leak after the surgery and still do, but since it is not as heavy as before, we are just watchfully waiting. I know how anxious it can be. You are young and your body can handle it, I hope you find the best of the best surgeons for re-repairs out there. That is the most important thing. A few of them are masters in re-repair. I know about David Adams. Best of luck and stay strong and brave!!! We are rooting for you!

Hello! Responding to all, sorry for my delay!! Robert - I'm so sorry your first surgery wasn't your last !! But at least they were able to do a transcatheter procedure. May I ask your age range and how long after your first procedure you had to do a second one? I hope everything goes perfectly and you have a fast and full recovery ! Susan - I appreciate your response and I agree with you. I have only found for the mitral clip to be for a limited amount of time and never recommended for someone my age. I will get the results of the TEE soon and hope for some options that I can manage. Grace - Thank you so so much !! I hope you are safe and well ❤️ Klara - That's my best friends name :) Thank you for your kind words. I'm sorry you still have regurgitation !! It's very scary and frustrating after having surgery. I am glad you are being monitored and hope you are at least feeling well! They docs say it's important to observe how the patient looks and feels. Sending love, support, strength, and healing!