Aortic Aneurysms – Introduce yourself & meet others

@charlie2025 given your extensive familial history I would absolutely schedule a consult with a cardio thoracic surgeon. I would also ask them to look at your current scans and make sure that you are doing everything you can to minimize any progression you might have of that ascending aorta. You have to advocate for yourself. Most general practitioners and even a lot of cardiologists are not going to refer you unless you insist on it. you want to meet with the surgeon that will ultimately have to open you up and repair this. As hard as it is to hear, that’s the reality. Unless the doctor sitting in front of you is a surgeon with decades of experience repairing dissected aortas, the pill prescribers aren’t going to do any good. Everybody plays a role in these cases, but in your circumstance, you definitely want to have a cardio thoracic surgeon who is familiar with your case. Think I would like this: you might go to the oil change place to get a Think I would like this: you might go to the oil change place to get an oil change, but you would never go there and expect them to replace an engine. Both have a purpose, but they do not do the same thing and they are not equivalents. The same goes for doctors. Peace.

@wpb I only take a baby aspirin, no other blood thinners. No problem with bleeding. I also use a mouthwash for dry mouth and lozenges. They help some but I still wake up in the middle of the night with a completely dry mouth and a sore throat. I then drink some water and pop in another lozenge.

Three weeks in the hospital must have been rough, it isn’t a pleasant place to be. I hope you are doing better.

@wtamminen
It sounds like you use the same dry mouth regimen. I am guessing the problem stems from either beta blockers or BP meds? Like you, I wake up half way through the night and use a new lozenge
The biggest problem with the hospital stay was losing too much weight as well as muscle mass. I regained the weight eventually and am still working on strength training. I am guessing a lifelong project.

@moonboy
I also have a Dacron graft plus a bovine aortic valve. I don’t have any chest pains but have muscle mass loss (working on this) and have regained most of my lost weight from hospitalization. My biggest problem is bleeding from aspirin blood thinners and remedying anemia. Maybe the anemia issues mask what would otherwise be chest pains from the open heart surgery. Who knows! Just happy to be alive and functioning. I recently met two others in my small city who also had open heart aneurysm surgery at cedars months before me. They are doing well, working and exercising. Inspiring. Amazing surgery, glad to have these medical methods available

Stay strong! Peace.

@heather1976 Hello Heather, Can I ask how you are getting on? I have been diagnosed with an iliac aneusrym which is saccural. I'm 44. Thank you

Hi topper42. Thanks for getting in touch. It’s been three years since my initial diagnosis of an aortic abdominal aneurysm and a right iliac aneurysm. Both specialists I saw at the time said it was a matter of when the surgery would be, not if. Which may still be the case but, I’m very pleased to say I’ve had two annual scans since my diagnosis and there has been no change in size or shape or either! Nether specialist said this could be a possibility! I am currently waiting on a letter about my 3rd annual scan which I’ve just had. The last letter said they are now thinking they could be birth defects. So I feel incredibly lucky. Is there any chance this could be the same for you? I had to wait an entire year wondering how fast and big they were growing inside of me, and that was a terrible year! I truly hope you get a similar result. I am still nervous about the scans, but hopeful it will continue unchanged.

@heather1976 Hi Heather, Thanks so much for the reply. I hope everything continues to go unchanged for you at the next scan. I've only recently found out about mine. I don't have an aortic, just one on my iliac artery which is measuring 20mm. I have to go back for an ultrasound scan in December so see if it is growing. There seems to be very little online about this doesn't there? They haven't said much how / why I have this. I have something called dolicho arteries (larger than normal arteries from what I understand) and they said I was probably born with this. Did you make any lifestyle changes over the last two years to keep it stable? It makes me nervous about exercising now and drinking coffee & alcohol etc.

@topper42 Hi, yes I found the same. Everything I read made me so nervous about exerting any pressure/force on my stomach. For the first year I wouldn't lift anything heavy and I made sure to stay away from anyone smoking. I still exercised but nothing that got my heart pounding. Just mild biking and yoga and walking. I used to run but already stopped that due to hip pain - but I would have still gone jogging if my hip wasn't sore. I changed my diet a fair bit to more healthy heart foods. When they were discovered, I was sent for a full body MRI to make sure the rest of my arteries were ok. I assume you have done this? Luckily, the rest of mine were ok. It sounds like you have an issue which I have never come across, the dolicho - I imagine they discovered this when you had a full body MRI scan? Because of the size of yours (similar to mine), they are probably not at all worried about it bursting, which is why they haven't given you a strict set of rules to follow -ie not lifting anything heavy etc. They didn't tell me anything like this either, I just read so much about it and got scared so I did everything they say to do/not do when it is closer to 4cm! So I think you can feel safe that you are not in danger of it bursting, but of course I am not a doctor and it is not that easy to relieve worry! I actually paid to see a private specialist in Edingburgh, in addition to the NHS specialist I was given. The specialist already knew about my conditions as they had some sort of meeting with several specialists about it, initially- as they were so bizarely shaped, I think. I felt better having seen two specialists and with the one I paid for, I was able to ask lots of questions and not feel rushed. The NHS one spent 5 minutes with me and seemed to me like he felt that was too long.

Hi, Thanks again for your reply. Your comments do give me some comfort and not to worry so thank you. I've only had a CT & Ultrasound scan so far and this was how they discovered this doloicho. I was convinced I had a hernia but then this came to light. That's good that you went private and saw a specialist it must give you some relief to have someone patient and to be able to ask questions. I've been living in France for the last 10 years and have found the healthcare here very efficient compared to the NHS. I can get scans in a matter of days or a couple of weeks here so I think I will go for a full body MRI like you so they can check the rest of my arteries - I hope that should then put my mind at rest and stop me from googling it all day! It's very frustrating not being able to do the things I want in the gym but I suppose I'll have to learn to adapt to a new routine - I've been doing incline walking for cardio. Thanks again and I hope everything goes ok with your third scan.