Suzanne's Photos

Hi I'm Suzanne and am new to this site. Thank you for creating it! I just got back from the Mayo Clinic where I was diagnosed with "Maliginant Bileaflet Mitral Valve Prolapse Syndrome." This form of Mitral Valve Prolaose is very rare and I was told that I can go into cardiac arrest at anytime so I will need 3 surgeries...1) Mitral valve repair or replacement, 2) Ablation to try and stop the PVC's 3) Implantation of an ICD. My numbers are actually very good. 69% ejection fraction and only moderate registration, however I am extremely symptomatic, with PVC's , ventricular couplets, bigeminy , a severely dilated Left Atrium and I am almost to the point of being bed ridden. I was implanted with a pacemaker on July 12th of this year because my heart rate was at 30 beats per minute & I was also put on a beta blocker. I never really felt any better and my doctors here in NY were not sure what to do with me. I saw a surgeon at NYU and one at Columbia and both said that because I do not have severe regiratatuon they would not do surgery on me. That is why I ended up going to the Mayo Clinic. I am young & used to be very active and would like to get some quality of life back. The cardiology team at Mayo is discussing my case and will be getting back to me this week with their plan. I would like to research surgeons that are extremely experienced with this type of mitral valve surgery, but I do not think any other surgeon will operate on me because my regiratatuon is not considered severe, however if any of them are aware of this rare MVP, they may change their mind. Is there anyone here that has also been diagnosed with Maliginant Bileaflet Mitral Valve Prolapse Syndrome or anyone that had surgery for moderate Mitral Valve Regiratation? Thank you and I wish you all much health and happiness as we travel through this journey together 🙂

Welcome to the community! How frightening to be told that you have a rare condition that could kill you and then that you can't get the surgery yet, especially in a place like NYC. I hope you get the information and assistance you need, so that you can get back to living a full life again.

Hi Suzanne. Welcome to the site. Biy, you've been given a tough pill to swallow. I hope you can get the help you need and can find a surgeon. I'm sure the Mayo clinic is a good choice and they will work to find answers for you. Please keep us updated on your progress.