Aortic Aneurysms – Introduce yourself & meet others

Hi Deby. Thanks for getting back to me. I have a bicuspid aortic valve also since birth. And heart mummer. I have my sixth month chest cat scan end of September. They say that is more accurate. My echo showed 4.3 cm and chest scan showed 4.5. So I will see what it is in September. I don't worry about this any more. Was diagnosed in 2012. I exercise on treadmill and don't do any heavy lifting over 20 pounds. I live in ct. Heard about mayo clinic. Where is that? Sounds like ours is pretty similar. Try not to worry.
Denise

Hi Lynn,
I am in the same situation but live out of state. Planning to visit Rochester next month to become familiar with Mayo. Would like to know others who might live there and have this problem. You have a great attitude that “knowledge is power”. Knowledge has helped me research and make future surgery choices, but it is also not easy. I wish you well. Deby

Good morning Denise. Yes, it sounds like we have similar things regarding this aneurysm. My next test will probably be in Nov here in CA. I am two years older than you. Mostly my exercise is yoga and walking our dog.  I was told not to lift heavy objects also.Mayo is in Minnesota and rated as one of the best, if not the best.  Just wish I lived closer to them.   Have a good Saturday Denise.  Deby

Hi everybody,

As Moderator of this incredible group, I just want to say how much I appreciate all the support and information. It is amazing what your shared experiences and insights can mean to other members.

I can only imagine how scary it must be to get a diagnosis of aortic aneurysm! Aortic aneurysms can be difficult to avoid because they usually don't have any symptoms, and can actually grow "silently" inside you for a long time. Very often these aneurysms are detected when a patient is being tested for something else – @laverne @jpmerk @lynnw, I'm thinking of you – but if detected early, they can be managed and may not even need surgical intervention.
I thought I'd share this information from Mayo Clinic, and highlight some important facts about aortic aneurysms:

– Thoracic aortic aneurysms often grow slowly and usually without symptoms, making them difficult to detect.
– Most people with aortic aneurysms do not have symptoms unless a tear (dissection) or rupture occurs.
– Aortic aneurysms are not always hereditary – about 20 percent of people with thoracic aortic aneurysm have a genetic predisposition to it, meaning it runs in the family. For instance, people who are born with Marfan syndrome are particularly at risk of a thoracic aortic aneurysm – as @jimmorris900 has shared.
– Surgery is generally recommended if your aneurysm is about 1.9 to 2.4 inches (about 5 to 6 centimeters) and larger.
https://www.mayoclinic.org/diseases-conditions/thoracic-aortic-aneurysm/symptoms-causes/syc-20350188

Since we are all so different, I hope this helps in some way. As members of this group and of Mayo Clinic Connect, I know you are in such a good place to get support, so let's keep talking and sharing.

Rochester is a very user friendly town. Caters to patient needs. Mayo is awesome to work with. They are great at juggling appointments to help out the out of town patients. Mayo has been #1 in Cardiac for many years.

Hi to All ! I am new to this group and am very interested to all of the posts. In late 2015 an aneurysm was accidentally found that was 3.5 and last month a CT showed it to be 4.8. I am trying to decide what kind of Dr.to go to. I also may consider Mayo in Florida. I have seen good recommendations for Mayo in MN.
I have diabetes and autoimmune thyroid disease., controlled with meds. Am presently and for the past 3 yrs have been dealing with back issues. I have had all the injections, nerves burned, surgery and the pain will not go away.I am not able to exercise any more. I feel that most of my issues were caused due to the back issue as I was very active and a 3 mile a day walker. Right now, I am a hot mess. Any advice would be appreciated. Thanks

I have a question about after the AAA surgery, I had my first and only check one month after my surgery the Dr. Said. See you in 5 years . is this the normal amount of time between visits . in the repair he had to remove the aneurysm and sew up the open part of the aorta. Could the thread or material used break over time? Anyone that has had a AAA please let me know how. Often you saw the Dr. after surgery. Thank you kdh1

Hello,
I had my Aortic Aneurysm repaired in 2005. Had follow-ups with the surgeon many times in the first year. Then I would do a CT every year. After that it was just follow-up with Cardiologist. I am going to assume you the Surgeon and Cardiologist are two different Doctors as was in my case. You should see your Cardiologist and set up a check-up plan that you are comfortable with. I had my Aortic Valve replaced this January. Had 2 follow ups with the Surgeon and shook hands. Just last month had my 6 month post-op follow up with Cardiologist. I'll see them again in 6 months. My Family (Primary Care) Doctor monitors my Blood Pressure, giving updates to the Cardiologist, I'm good with this. Hope this gives you some ideas.

All the best.

Bruce
Texas

Thank you so much for this information. I will call my vascular surgeons office tomorrow. I know I will be less anixious about it if he gives me the reason why he didn't want to see me more. Now that I know someone else who had this done sees there surgeon I won't feel like I'm whining when I ask about it. Thanks again.

Thanks for addressing this specialty. I had a dicecting aneurism 22 years ago. It healed without an operation. But I lost half of the intestines and one kidney and almost did not make it. Had a very good doctor to put it all back together. The aneurism is close to the heart in a difficult position. It is 6.1 cm by now and high
risk to operate on. I have no symptoms, and as long as it stays this way and it is being checked every 3 to 6 month I should be ok for a while. Will see two cardiologists next week. See what the outcome is. When the time comes I have to go to one of the hospitals that is able to perform this operation.
Cedars is 3 hours to drive for me or Mayo Scottsdale 4 hours. Is there anybody in a similar predicament?