Aortic Aneurysms – Introduce yourself & meet others

@moonboy
I understand how lucky I am that we found mine and I was able to get it repaired before it burst. you are so lucky to have survived that ! I wonder why the tastebuds are involved? How long was your surgery? Mine was about 8 hours. Did you find you had to pee all the time? They say that is because of all the fluids they have to pump into you but it seems those should be out by now? No matter what complaint I express with my doctor the reply is the same "This was a huge surgery and these things are to be expected." It helps so much to know someone else had similar symptoms...you look great by the way

13 hours surgery and then 7 hours of follow up surgery 3 days later. Two weeks in a coma. I slept more less for the first two months after surgery. I underwent 46 mins of Deep Hypothermic Complete Circulatory Arrest (DHCA). https://en.wikipedia.org/wiki/Deep_hypothermic_circulatory_arrest - "Deep hypothermic circulatory arrest (DHCA) is a surgical technique in which the temperature of the body falls significantly (between 20 °C (68 °F) to 25 °C (77 °F)) and blood circulation is stopped for up to one hour. It is used when blood circulation to the brain must be stopped because of delicate surgery within the brain, or because of surgery on large blood vessels that lead to or from the brain. DHCA is used to provide a better visual field during surgery due to the cessation of blood flow.[1] DHCA is a form of carefully managed clinical death in which heartbeat and all brain activity cease." Read that twice my friend. It explains why things can be a bit wonky at times. Request a complete copy of your medical records post-surgery and see if they used that technique on you. It's worth asking your cardiothoracic at your next appointment. Peace.

@moonboy what a miracle that you are even alive to share this! Thank you for taking the time to share all this information so greatly appreciated. I am indeed lucky that I had the opportunity to repair this before it burst. Also lucky university of Iowa has My Chart and everything is posted…test results, docs notes clinical notes even nurses reports for every shift so I can access all that information ….going to re-read through it all to see if that procedure as used during my surgery. Thanks again.

Hello, I am a 60 year old male, 6' 1" tall, 218lbs. I had a CT scan < 7 months ago, they found a 4.1cm TAA. Now I realize that may not be that bad, however, I have had many CT scans before with and without contrast in the same area as they were looking for more blood clots, (I have clotted up four times, the last being main in rt leg, both lungs and my neck). So with that being said, as an engineer, I view this as a 4.1cm growth in one year excessive as that was my last CT scan showing nothing at all. My hematologist agrees that this is concerning as she reviewed my last 5 CT scans showing nothing. So, my point, I strongly feel I need another scan to see how much it has grown since this last showing scan which was 6 months 3 days ago... Am I right, or over reacting?? I hope I didn't duplicate this as it is my first time posting on a forum.. TY, Keith

@ktracy515
In my humble opinion I think you are right . We watched mine for 7 years and it remained pretty stable. Doc actually said I could do scan once a year or twice…up to me. I chose twice so not to worry and lo and behold 6 months later it had grown an entire centimeter …..and in the next two months that it took to get me scheduled for surgery it had grown a bit more. I’m glad it was monitored so closely.

Hello and thank you for creating this space. I am newly diagnosed with a 4.6 cm dilation. Still learning all the words and what comes next. - SZ

I’m really glad you posted. A 4.6 cm dilation is a lot to take in, especially when all the terminology is new. I remember sitting there hearing numbers and phrases and feeling like I had stepped into a foreign language. You don’t have to learn it all at once. What matters right now is that you know about it. Knowing means you can monitor it, manage blood pressure carefully, and make thoughtful decisions with your doctors instead of being caught off guard.

At 4.6 cm, most people are in a watch-and-manage phase. That usually means regular imaging, tight blood pressure control, and being smart about heavy lifting or straining. It’s not typically an emergency number by itself, but it is important — and you’re doing exactly the right thing by paying attention early. I had a Type A dissection in 2015 and emergency open-heart surgery with a Dacron graft. What I can tell you from the other side of that experience is this: information is power. The people who know about their dilation and follow it closely are in a much stronger position than those who don’t. You’ve already taken the most important step.

You matter. Your questions matter. And there is a steady path forward from here. Peace.

@ktracy515
Hello.....I'm sure you know the size you describe didn't start at zero. I believe a "normal" ascending aorta can be around 3.4cm for a male your age. The size for concern and surgical intervention is 5-5.5cm, depending on the growth rate. There are criteria for intervention sooner, that is governed by growth rate and individual patient condition. Mine started around 3.8cm almost 8 years ago, and it is now at 4.5cm, probably primarily due to blood pressure issues, and afib. Early BP control is essential for long term growth control. Hope this gives you some more perspective. Best of luck with your treatment going forward!!

Hello all.
I am new here. I am 69 yrs young.
I was diagnosed with AAA in 2016 when the Dr. were trying to find a reason for my arrythmia- afib. couldn't find anything. At that time, it was 4.2cm. Has been growing very slowly. It has been at 4.5 for a couple of years. In Aug of last year, I took a tumble and fell on my chest, hit hard enough to displace my pacemaker slightly. In Oct. I asked my cardiologist about doing an echo to see if the fall had any effect on the aneurysm. I explained to her why I was requesting it. At first, she said I didn't need one until April of this year, but I was persistent. She finally consented to doing a "limited Echo". Result of that showed it had grown to 4.7cm. She then ordered a CTw/contrast to get a better look it. Had the CT scan first part of Dec., and it at 4,8cm.
Dr upped my metoprolol and re-ordered another CT for 3 months. She also told me to avoid strenuous activities. My repeat Ct is on this Wednesday, I'm anxious to find out where it is at now.
I have other health issues as well. Persistent Afib, low heart rate, sleep apnea and am way over wt. I take Flecainide 2xday for irregular hr, Metopolol for my blood pressure control, but it drops my Heart rate into upper 30-40, so the Electrophysiologist decided to finally implant a pacemaker to help control HR and irregular rhythm.
Sorry this got long.
I am trying to get in routine of exercise and eating healthier. I am hoping it was just the fall that caused the increase in size and it hasn't grown any more

Hi, I am a 40 year old female recently diagnosed with a 40-43mm thoracic ascending aortic aneurysm. I have family history (my father has the same type of aneurysm) and a variant of unknown significance but no definitive genetic cause identified. I am a runner and lifted fairly heavy until my incidental diagnosis. I am in the "watch and wait" phase and likely like everyone else who has been through this, have a lot of anxiety about what feels like a ticking time bomb in my chest. Thank you for having this group for support.