Hi. I am 56 years old. I have been watched for 12 years. I have mitral valve regurgitation moderate-severe. I have a bicuspid aortic valve. I also have an ascending ...Read more
Hi. I am 56 years old. I have been watched for 12 years. I have mitral valve regurgitation moderate-severe. I have a bicuspid aortic valve. I also have an ascending aortic aneurysm that measures 4.1 on a CT scan. My cardiologist feels the aneurysm is not a concern and watches it as well as watching my mitral valve regurgitation with an echo every 4 months. I have had 2 TEE's over the years and my calcium score is 0.
My thoughts are, should I continue watchful waiting or should I see a "heart failure specialist" or a surgeon. I am afraid that surgeons do surgery so they may say it's time. The longer I wait the technology and techniques are improving.
Also, I know Mayo Clinic is the most experienced hospital for this surgery. I live in Florida but I feel it is important enough to travel for. I am sure their are wonderful surgeons here but I am scared to death. I am asymptomatic.
I'd love to hear the groups experiences and thoughts. I am also open to recommendations as my Dr has not given me limitations on exercise. Thank you!
Claire Kreger-Boaz Hi Selene, I have been watched and waited for 26 years and now it feels like that time flew since I ... Read more
Claire Kreger-Boaz Hi Selene, I have been watched and waited for 26 years and now it feels like that time flew since I have a surgery date. I feel like that part is stressful. You go along with your life, have annual semi-annual checkups and you continue on with your life until they say, "it's time." My limitations have always been to avoid any type of exercise where you hold your breath or start and stop quickly. So, no heavy weight lifting, sprinting, things like that. Which has been FINE BY ME! My cardiologist has always been a fan of walking---and his "test" for me to know if I'd become symptomatic was whether I could hold a conversation and breathe while walking. I'm sure you know all of the numbers game and the indicators for when surgery is recommended, but I just learned today that the aneurysm severity is dependent on your height. Or, at least it's a factor. Couldn't hurt to get a second opinion. Wishing you well. Claire
Catie B A warm welcome to you, Selene. I'm glad you found the site! Claire is spot on about the aneurysm and ... Read more
Catie B A warm welcome to you, Selene. I'm glad you found the site! Claire is spot on about the aneurysm and body size. I'll add a link here that may help you to reassure yourself about your aneurysm. Ordinarily 4.1 would not be a current concern except to be mindful of your blood pressure and certain intense exercise or lifting.
I understand your wish to go to Mayo. I felt very strongly about Cleveland Clinic. I wanted to be in the most expert hands possible! I don't know whether the surgeons at Mayo do this, but CC offers remote or long-distance evaluations where you send up your medical records and pay for an opinion on timing, risk, etc. In my own journey, I found surgeons to be far more knowledgeable than cardiologists about valves, aneurysms and aortic roots.
You are not alone in being frightened. One cardiac nurse I spoke with reassured me that everyone facing heart surgery is terrified. That was probably the hardest part of things for me, the extreme anxiety. I
I wish you the best as you seek answers and keep walking things out.
Catie B https://www.valleyheartandvascular.com/Thoracic-Aneurysm-Program/Calculate-Your-Relative-Aortic-Size. ... Read more
Catie B https://www.valleyheartandvascular.com/Thoracic-Aneurysm-Program/Calculate-Your-Relative-Aortic-Size.aspx
Marjorie Murphy I am a 77 year old female Thirteen years ago I had mitral valve repair done at Mayo. Unfortunat ... Read more
Marjorie Murphy I am a 77 year old female Thirteen years ago I had mitral valve repair done at Mayo. Unfortunately my valve became calcified. This past September I had my mitral valve and aortic valve replaced at Mayo. The team of cardiologists and surgeons will help you make the right decision. For my peace of mind I wanted to go to the best place. My surgeon specialized in 'redo's '. I am doing great now. Walk 2 miles most days. I might mention that I did not have any symptoms before surgery. Wish you the best
Selene Munach Thank you all for your insightful comments!
Meredith Bray Hi there, I was diagnosed at 33 and had surgery at 43. My valve declined rapidly also, the last 6 mon ... Read more
Meredith Bray Hi there, I was diagnosed at 33 and had surgery at 43. My valve declined rapidly also, the last 6 months before surgery was the worst. I first met my surgeon over a year before my surgery, and I never felt pushed in to surgery. If you are a pretty typical patient, yo'll be able to find a reputable & successful surgeon here in Florida. My surgery was at Morton Plant Hospital in Florida - they have a valve replacement team/clinic. I have also heard rave reviews (on this site and others) about Tampa General as well as Florida Hospital in Orlando (I think they just changed their name to Advent Health?) And with the high senior-citizen population in south Florida, there are great surgeons everywhere.
I've also found that the more I talked about my surgery to people, the more I heard "Oh, my neighbor had that" or "My mother had that" and a lot more "Oh *I* had that!" than I expected.
I wasn't given any exercise limitations. I did find that the closer I got to surgery, the slower I exercised. I was uncomfortable when my heartrate went over a certain number, so I just exercised slower.
You're not alone, it's ok to be scared & nervous.
What other wuestions do you have?
Meredith
Holiday, FL
Claire Kreger-Boaz Catie B. - what value do you put into the Maximum Aortic Diameter? Is the size of the aneurysm?
Catie B Claire, that is correct. The size they estimate the aneurysm to be.
I am from: Pembroke Pines
I understand your wish to go to Mayo. I felt very strongly about Cleveland Clinic. I wanted to be in the most expert hands possible! I don't know whether the surgeons at Mayo do this, but CC offers remote or long-distance evaluations where you send up your medical records and pay for an opinion on timing, risk, etc. In my own journey, I found surgeons to be far more knowledgeable than cardiologists about valves, aneurysms and aortic roots.
You are not alone in being frightened. One cardiac nurse I spoke with reassured me that everyone facing heart surgery is terrified. That was probably the hardest part of things for me, the extreme anxiety. I
I wish you the best as you seek answers and keep walking things out.
I've also found that the more I talked about my surgery to people, the more I heard "Oh, my neighbor had that" or "My mother had that" and a lot more "Oh *I* had that!" than I expected.
I wasn't given any exercise limitations. I did find that the closer I got to surgery, the slower I exercised. I was uncomfortable when my heartrate went over a certain number, so I just exercised slower.
You're not alone, it's ok to be scared & nervous.
What other wuestions do you have?
Meredith
Holiday, FL