Newly Diagnosed: 4.9 cm ascending aortic looking for support

@gladifoundthissite
Those symptoms are concerning enough to be checked out ASAP

I am on almost the identical time-line. It is so helpful to know others are dealing with the same stages of grief. A 5 cm ascending aortic aneurysm found about 2 weeks ago, emergently referred to a CT surgeon who was dismissive and says they only do surgery if it reaches 5.5 cm. I am a long-time competitive endurance athlete, now 67, and the advice regarding exercise has so far has been too general to be helpful ('maybe cut back some'). It's been a roller-coaster of emotions and as a serious road cyclist who likes hill climbing, I am looking more tailored guidance and support to help retain some joy in the cycling and hiking regularly enjoy. Hard to get that image of an expanding thin-walled balloon out of my head as my HR inevitably climbs as I climb even at a significantly reduced intensity. My research included discovering that a study at Mass General in Boston has found a significantly increased rate of these in long-time endurance athletes and has been conducting a longitudinal study to determine if it's a benign adaptation/cardiac re-modeling requiring a different approach to avoid unnecessary cessation of training or invasive surgery or just as concerning and potentially life-threatening as in non-athletes? We are a rapidly expanding demographic, competitively training well over 50, and the medical community is trying to catch up. Can anyone recommend a sports cardiologist in AZ who works with endurance athletes? I've also read about "wearable" and "cuffless" BP devices. Anyone used one?
Thank you so much

@cacamik my cardiologist is an expert in aortic diseases and has done studies related to exercising and aneurysms , Dr Prakash, the same one of the videos that have been posted, but he is in Texas. Two things though: at 5.0 getting a surgeon to be dismissive in my mind is not acceptable, I would look for a second opinion, second I asked Dr Prakash about wearable BP monitors for when exercising, he flat out told me there are no devices that can properly do that. They are just too sensitive to movement. Some people take it quickly after exercise but even a few seconds after, your BP has already dropped from its peak

Mine was repaired at 5.2cm, it was found after an MTB accident , both my surgeon and cardiologist were incredibly receptive and helpful, we all deserve to have proper care.

@houston13 thank you so much. I reached out to Prakash’s group to see about getting into a study of endurance athletes with AAAs. There isn’t one currently open but they offered a genetic study to me and my sister who has a stable 4.5 cm diagnosed 5 yrs ago. Do you mind me asking how old you were at time of surgery and whether it was emergent or elective and where/who did it?

@midnightwolf heins here! I understand how the diagnosis was such a shock you are now regarding making life changes or due to distance from a medical facility. Take a step back, get the best doctors, surgeons who you can relate to. Then get testing as ordered, labs, intermittent scans on time and surgeon will tell you when he thinks it is time to schedule surgery due to size, anatomy, health issues if any. You have to live your life, do your labs and testing as required and trust in your surgeon for advice. Aneurysms are more common than known. You have to advocate for yourself by getting as much info whether in computer, the library, your doctor, support from family and friends.

Two years ago I was diagnosed with 4.7 AAA when being sent to ER for an increased heart rate while having wellness check. I have always been in good shape, very healthy physically and mentally. Having worked in the medical community for years and totally aware of my diagnosis, for ten days I was sad and ruminated about my pending death. Then one day justm decided to just keep living my life. I have a large wonderful family, we conversed about all the pros and cons and I saw a vascular surgeon. There was no way to tell how long it had been there but also to my
dismay, having tortuous
blood vessels, microcalcifications, a clot in another vital,organ and I was not a candidate for EVAR-Endovascular procedure. Also my age was really a deterrent for having an open procedure though it could be done but at high risk though still healthy for my age. I did my homework, was on computer for hours, got all info needed to make a decision in my best interest. Since AAA was already at 4.7 I opted to just get scans every six months which showed aneurysm is slow growing. Last recent scan did show AAA is now at 5. I am now well over 85, have great faith, am in God’s hands and have no crystal ball when my days will end. I am living my life pretty much as I had been before diagnosis with exception of not taking harmful risks such as heavy lifting, strenuous exercise and exposing myself to extreme temperatures. My decision has given me peace of mind, I am and have been in His hands right from the start of this.

I am on almost the identical time-line. It is so helpful to know others are dealing with the same stages of grief. A 5 cm ascending aortic aneurysm found about 2 weeks ago, emergently referred to a CT surgeon who was dismissive and says they only do surgery if it reaches 5.5 cm. I am a long-time competitive endurance athlete, now 67, and the advice regarding exercise has so far has been too general to be helpful ('maybe cut back some'). It's been a roller-coaster of emotions and as a serious road cyclist who likes hill climbing, I am looking more tailored guidance and support to help retain some joy in the cycling and hiking regularly enjoy. Hard to get that image of an expanding thin-walled balloon out of my head as my HR inevitably climbs as I climb even at a significantly reduced intensity. My research included discovering that a study at Mass General in Boston has found a significantly increased rate of these in long-time endurance athletes and has been conducting a longitudinal study to determine if it's a benign adaptation/cardiac re-modeling requiring a different approach to avoid unnecessary cessation of training or invasive surgery or just as concerning and potentially life-threatening as in non-athletes? We are a rapidly expanding demographic, competitively training well over 50, and the medical community is trying to catch up. Can anyone recommend a sports cardiologist in AZ who works with endurance athletes? I've also read about "wearable" and "cuffless" BP devices. Anyone used one?
Thank you so much

@heins thank you so much for sharing mine is at 3.8 and involves the entire visceral segment of the thoracic and upper abdominal aorta so that is really scary 😦 where it is positioned scares the hell out of me my vascular surgeon thinks when it gets to 5 cm he could do the EVAR but not sure due to location so I feel like I always have this black cloud over my head I have other medical issues the waiting is what is so horrible I have a good support system but they do. Not get how this affects a person medically and physically I’m 57 and do not want to live with this over my head but I know I have to I just wish I had someone in person where I live to hang out and talk with but I just moved 30 minutes from the city to 20 acres of farmland no animals could not take care of them but after moving out here my husband had open heart surgery with major complications so not being use to the country life I’m a city girl all the way I had to learn how to take care of things plus him for almost 2 years he had his last surgery in March of 25 and it takes a full year of recovery so no physical work so I’m left to take care of the well septic mow this huge yard takes me at least 2 hours I’m tired and trying to get him to move which will be hard he is 68 and always wanted to be out here and after everything happened I think he realizes he can’t do what he use to. And I should not be doing half the things I do but my family lives 30 minutes away and all the stress I’m under does not help my situation sorry o long winded I’m from Erie Pa so you know what I have to go through with the winters here we just had 2 major storms the last one a ice storm where we lost power for 5 hours my biggest fear is if something happens they will not get to me in time being so far from the hospital. It was great talking to you where are you from if I may ask.

Ann