I am also dealing with this issue because I was also born with a bicuspid aortic valve. I am now 35 and have a dilated aorta of 4 cm and a leaky aortic valve. I will definitely need surgery at some point. As I understand it, the Ross procedure is ultimately the best option for a normal, long life without having to take blood thinners. I've read that you can grow old like the normal population.
Hi Rocky, There are several options that you may want to discuss with your medical team. But yes, for some bicuspid aortic valve patients, the Ross Procedure may provide excellent durability. Here's a video we posted yesterday about the Ross Procedure that includes new research and medical insights - th-cam.com/video/eMpNQHyl__I/w-d-xo.html. Hope that helps!
15 years ago, at age 50 I was diagnosed with a Bicuspid aortic valve, June 21 of this year I had OHS to replace the aortic valve along with repairing my aortic aneurysm, while in the hospital recovering, I was told I had entered stage 3 heart block which required the implantation of a permanent pacemaker.
Hi Stephen, Thanks for the update. Unfortunately, we did not have time to cover heart block during the webinar. That said, here is a video that addresses the use of pacemakers for patients after heart valve surgery - th-cam.com/video/TAjmojo1xJw/w-d-xo.html. We hope that helps!
A quick follow-up regarding pacemakers, I just re-watched Dr. Sell-Dottin address when TAVR is used to treat bicuspid aortic valve. During the webinar, she stated, "Permanent pacemaker implantation, this is honestly similar regardless of valve morphology it’s around 10% to 15% on a standard TAVR." Guessing that might help patients who are interested in TAVR.
Thank you so much for your videos with knowledgeable presenters. I get some questions answered but also get questions to add to my list for my evaluation next month.
I have A bicuspid aortic valve with incomplete raphe. It shows as tricuspid both when opening and closing. Moderate to severe regurgitation because of a 4.9 ascending aortic aneurysm. Aortic root slightly dilated 38mm, within limits. Can it be repaired with good long yerm prognosis? Which method is the best? David or haart? My surgeon says i have a moderate chance for repair because of the incomplete raphe. He also doesn't say anything about durability of the repair saying ot may need resurgery even on a year.
Hi ΙωάννηςΚώσταλος You raise a really great question. Unfortunately, as a patient advisory group, we are not trained or capable of providing specific medical advice. That said, we would strongly encourage you to further discuss these questions with your medical team. If you are not getting information that you are comfortable with then perhaps you should maybe think about getting a second opinion to validate and support next steps in the treatment process. We are so sorry that I cannot be of more immediate help to you!
Hey everybody! So you know, we just posted a free eBook for this webinar. If you would like to download the "Advances in Bicuspid Aortic Valve Therapy" eBook, please click this link - bit.ly/4eon7OS. Hope that helps!
Thank you for webinar. I born with bicuspid valve and in june'24 diagnosed with anyurism. I ll have valve repair precedure next month in Ohio. Does bicuspid valve or valve disease have any relation to inflamatory disease such as swollen lymph node disease?
That is a very interesting question. Unfortunately, we do not know the answer. That said, we would encourage you to discuss this with your medical team. All the best for your upcoming bicuspid aortic valve repair and aneurysm surgery next month. If you need anything, please let us know.
I am also dealing with this issue because I was also born with a bicuspid aortic valve. I am now 35 and have a dilated aorta of 4 cm and a leaky aortic valve. I will definitely need surgery at some point. As I understand it, the Ross procedure is ultimately the best option for a normal, long life without having to take blood thinners. I've read that you can grow old like the normal population.
Hi Rocky, There are several options that you may want to discuss with your medical team. But yes, for some bicuspid aortic valve patients, the Ross Procedure may provide excellent durability. Here's a video we posted yesterday about the Ross Procedure that includes new research and medical insights - th-cam.com/video/eMpNQHyl__I/w-d-xo.html. Hope that helps!
Same problem brother
I am extremely grateful for this webinar being organized and then posted on youtube. Thanks to everyone involved!
Our pleasure SaySwan!
Thanks! That was excellent
Hi Hawker, Thanks so much for the kind words about the bicuspid aortic valve webinar with the Mayo Clinic! Much appreciated! 👍👍👍
Thank you for posting and sharing this webinar!
Hi Adam, Our pleasure! If there is anything else, we can help you with specific to bicuspid aortic valve therapy, please let us know.
I make a year on October 25th since my OHS to repair my Bicuspid Aortic Valve and to replace my Aortic Root. ❤❤❤
Great to hear! Congrats on your one year anniversary of bicuspid aortic valve replacement!
How age sir
15 years ago, at age 50 I was diagnosed with a Bicuspid aortic valve, June 21 of this year I had OHS to replace the aortic valve along with repairing my aortic aneurysm, while in the hospital recovering, I was told I had entered stage 3 heart block which required the implantation of a permanent pacemaker.
Hi Stephen, Thanks for the update. Unfortunately, we did not have time to cover heart block during the webinar. That said, here is a video that addresses the use of pacemakers for patients after heart valve surgery - th-cam.com/video/TAjmojo1xJw/w-d-xo.html. We hope that helps!
A quick follow-up regarding pacemakers, I just re-watched Dr. Sell-Dottin address when TAVR is used to treat bicuspid aortic valve. During the webinar, she stated, "Permanent pacemaker implantation, this is honestly similar regardless of valve morphology it’s around 10% to 15% on a standard TAVR." Guessing that might help patients who are interested in TAVR.
Very clear explanations. Good summary info I had not previously seen.
Hi Joseph, Great to hear you enjoyed the bicuspid aortic valve webinar with the Mayo Clinic! 😀😀😀
Thank you so much for your videos with knowledgeable presenters. I get some questions answered but also get questions to add to my list for my evaluation next month.
Great to hear you enjoyed the Bicuspid Aortic Valve Therapy webinar with the Mayo Clinic team! We hope your evaluation goes well next month!
I have A bicuspid aortic valve with incomplete raphe. It shows as tricuspid both when opening and closing. Moderate to severe regurgitation because of a 4.9 ascending aortic aneurysm. Aortic root slightly dilated 38mm, within limits. Can it be repaired with good long yerm prognosis? Which method is the best? David or haart? My surgeon says i have a moderate chance for repair because of the incomplete raphe. He also doesn't say anything about durability of the repair saying ot may need resurgery even on a year.
Hi ΙωάννηςΚώσταλος
You raise a really great question. Unfortunately, as a patient advisory group, we are not trained or capable of providing specific medical advice. That said, we would strongly encourage you to further discuss these questions with your medical team. If you are not getting information that you are comfortable with then perhaps you should maybe think about getting a second opinion to validate and support next steps in the treatment process.
We are so sorry that I cannot be of more immediate help to you!
Hey everybody! So you know, we just posted a free eBook for this webinar. If you would like to download the "Advances in Bicuspid Aortic Valve Therapy" eBook, please click this link - bit.ly/4eon7OS. Hope that helps!
Thank you for webinar. I born with bicuspid valve and in june'24 diagnosed with anyurism. I ll have valve repair precedure next month in Ohio. Does bicuspid valve or valve disease have any relation to inflamatory disease such as swollen lymph node disease?
That is a very interesting question. Unfortunately, we do not know the answer. That said, we would encourage you to discuss this with your medical team. All the best for your upcoming bicuspid aortic valve repair and aneurysm surgery next month. If you need anything, please let us know.
Can u see that leakage on a Echo
Yes, an echocardiogram is considered the "gold standard" for diagnosis heart valve leaks (regurgitation) and stenosis (narrowing) across the valve.