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What makes ascending thoracic aortic aneurysms increase in size?
I am a 68 year old woman, who considers myself in relatively good shape and health until I was diagnosed with breast cancer 14 months ago. I had a lumpectomy and radiation and now I am on medication which increases cholesterol, causes joint pain, and osteoporosis. In June 2024, I had a CT Scan with contrast due to the cancer and that was fine but I found out I had a 4.1 ascending thoracic aortic aneurysm, which caused me to freak out. My cardiologist had no concern, so I saw a Thoracic Surgeon who said since I’m short, surgery would be needed if it reached 4.5. Typically, they recheck in a year but since I was nervous I just had a CT Scan on 1/17/2025 w/o contrast. I just received the results today, is it really beneficial so see results populating in your portal before you speak to the doctor, not…. anyway… it is now 4.3 so it grew in 7 months. I retired to relieve stress, do Pilates, use my elliptical, increased my BP to 100 mg, I occasionally have a glass of wine or Cosmo at dinner once a week. I don’t have a good feeling about this and I’m trying to be positive but I’m really struggling today.
Are there any statics on how often aneurysms increase in size compared to no change? Are there any statistics on how many people who have surgery survive the surgery but die from complications, or life span after surgery.
I always look for a solution and not one to give up but not being able to fix this is making me crazy.
Also, it seems doctors have a cavalier approach because there really isn’t anything they can do, basically the odds are 50/50…maybe.
Any inspirational hope from anyone?
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Your story gives me hope that you survived the dissection but concern that it happened much smaller than the 5.0-5.5 marker the doctors use. I have an ascending aortic aneurysm and like many of you, found by accident and measured approx. 4.5 nearly three years ago after a calcium test showed me in the 90th percentile. It has stayed the same, sometimes measuring smaller depending on the test. I am a 67 year old female, non-smoker, limited alcohol, fairly good health, blood pressure has been under control with meds for past 7 years, weight is fine and I do not strenuously exercise anymore due to a knee that needs replacing (putting it off until I learn more about the whole AAA thing). My father passed away when I was 13 from a AAA that burst so I am quite worried about having this. My cardiologist is very nonchalant/cavalier (a comment I see a lot in this group) and tells me not to worry, Keep the blood pressure doing well, and we will keep monitoring it with an echo each year. I recently found out I have mild to moderate sleep apnea but until I got on this group, I was not aware it was linked to aneurysms as well. The doctor did not stress any impact it could have on my heart. I feel like I have been given crumbs and told to find my way out of the maze! Very confused, frustrated and scared. I have tried to get in to see one of cardiovascular specialists at the Mayo Clinic in Scottsdale, AZ but they do not take my Medicare supplemental insurance. And they will not accept cash payment, like for a one-time consultation. I feel like I have gotten more info from all of you in this group than from any medical people! I did not know there could be issues with flying, I fly from Phoenix to LA and Las Vegas quite often for work/family, is this a problem? I was never told not to do any heavy lifting -I lift my 25 lb dog in and out of my SUV almost every day, is that considered heavy lifting? Aside from all the questions and concern I have been living with, because my father died suddenly when I was so young, I learned we are not guaranteed a certain amount of time, or anything else here on earth. I have tried to live my life with fullness, kindness and faith and have been blessed with amazing children, family, and friends but I think it would be helpful to know as much as possible to prevent what I can and accept what I need to. I truly appreciate all of you who have shared your situations and provided much needed information and support. Thanks very much!
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2 ReactionsDoctors should be trained in med. school to communicate with their patients. Gone are the days when a doctor kept a serious diagnosis secret.
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1 ReactionHeavy lifting/pushing by my doctor is considered anything that makes you grunt, moan/groan, hold your breath, or strain. I follow that. I am three years after surgery. I was repaired in three places by polyester, wire, and a stent. I began using a cap after surgery. It is the best thing I ever did. Ask them what insurance would they take. I use Mayo in MN and I winter in Lake Havasu AZ. Mayo informed me if I ever got in trouble to be sent to Mayo in AZ immediately. So I know my out of state insurance works there. I have Blue Cross/Blue Shield.
Best wishes.
I'm sorry for the ignorance, but what is a cap that you say is best thing? I live in Prescott, AZ but my insurance works in any state, just not at Mayo apparently. Thanks for your info.
I'm almost 64 and I too have a 4.5 cm TAA and I'm measured yearly. The past couple of CT scans have been with out contrast due to me having one kidney. This July I'm scheduled to have one with contrast and my one kidney is good and I have had no problems with the contrast since my nephrectomy. I'm anxious to see what it shows with the contrast but I don't worry about it to much and let it stress me. I agree with your statements about lifting and no sudden bursts and spikes in blood pressure.
I find it interesting that you mentioned softener salt. I work in a utility plant and have got around lifting the forty pound bags by using a bucket to let half the salt pour into before adding the salt to the brine tank.
You might want to change your Medicare Advantage insurance to traditional Medicare. That will give you more provider options. Provider options may be important down the road. I read that more and more health systems are refusing to see many, if not most, Medicare Advantage patients. There are exceptions given for some in state plans that negotiate higher payments to desired providers like Mayo. Overall, providers claim that Medicare Advantage plans pay poorly, delay approvals for needed procedures, and delay payments. There are lawsuits and many complaints filed with CMS. Many patients are not aware of these problems until (like you) they find a provider will not accept their insurance.
Curious, were you diagnosed with Loeys-dietz?
I’m 54 male about 170lbs. And suffer from high blood pressure. I was diagnosed with a 4.7 AAA about a year ago and I’ll be honest I think about the ramifications of a rupture daily. It’s really making my life difficult. I know I have to keep blood pressure low and I take all my medication like prescribed. I was shoving snow a few weeks ago and my shortness of breath and chest tightness was pretty extensive for about 5-8 minutes. I went to the ER because my cardiologist said any pain just listen to your body and go. Everything checked out and updated CT showed no difference still a 4.7. Its just knowing it’s there and not knowing the what if that drives me batty. I have a stressful job and children life doesn’t really care about you diagnosis. So my question is, how do I manage this better without thinking the worst because I know anxiety has to be playing a major role in my every day life and others with similar diagnoses. I’m healthy otherwise blood is good, no calcium build up, so I know that I’m doing what I can. If anyone can help show me a better way to cope please share. Thank you
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4 ReactionsSo I survived a complete dissection in 2015. A type A-1 aortic dissection. I'm sorry that you're feeling anxious. I can relate. Luckily for me I had no idea that I had a problem until I detected. I was lucky in the sense that there was absolutely no time to consider the options and absolutely no time to prepare. I was in open-heart surgery about 42 minutes after I dropped my knees in excruciating pain. So what I want to tell you is that I feel for you. I was 50 years old when it happened and I'm 60 now. There is life after surviving a dissection. That's the trick – – surviving. Given your 4.7 cm aneurysm, I suspect you'll be a candidate for surgery in the near future, depending on its progression.
Knowing what I know now that I didn't know then, there isn't any amount of money you could pay me to shovel snow. It's foolish with the dissection. Don't do it. You should not be shoveling, planking, grunting, dead, lifting, or doing anything which causes you to hold your breath and spike your blood pressure to accomplish. It's like going for a 75 mile an hour drive when you have a bulging front right tire. You're asking for trouble. My uncle Kevin had an aortic dissection 17 years ago in New York shoveling snow. We have a family history of aortic dissections and what you're describing sounds like a nightmare.
Likewise, you should have at this time made best friends with the thoracic surgeon who is going to do your surgery when the time is ready. I don't want you to be afraid, but I also don't want you to be complacent. The best way to deal with anxiety is to eliminate the problem. Unfortunately, that requires open-heart surgery. If I knew now what I knew then, I would've had that surgery long before I dissected. A sudden aortic dissection is often fatal. I love my kids and my wife and I can tell you I did not want to die. I know that you're feeling anxious but there is an element of denial that runs through all of us who suffer from this particular condition and know about it.
The fact of the matter is that you are very lucky to know that you have this problem so that you can deal with it promptly. Medicine has advanced incredibly in the past 10 years since I dissected. You'll be the beneficiary of that. You're going to be OK. You can do this. I did it and you can too.
You should be getting CT scans every 6 to 12 months with contrast to monitor the aneurysm's progression. If you don't have a thoracic surgeon on standby, get one. Remember that a cardiologist can potentially diagnose this condition, but they're not the ones that have to crack you open and fix it. I will be very blunt with you. You've come to the right place and you need good advice. If you're taking advice from anyone who isn't a thoracic surgeon or a survivor of a complete aortic dissection, think twice about that advice.
I do want to mention that about three or four years before I dissected I had very sudden and very sharp pain in my heart in the middle of the night. I was too scared to tell my wife that I had it and so I went to in our bathroom of the master bedroom and took two aspirin and chewed them and waited. That was a stupid thing to do. I should've called an ambulance and I should have gone to the hospital. But as some people are, we do stupid things and we take risks that we shouldn't. I am quite certain that the night I felt that pain in my chest, which felt like the world's largest bumblebee buzzing inside of my chest, was in fact the start of that aneurysm or at least a significant expansion of it. If I had known that I had it, I could have had open-heart surgery in a much less stressful and emergent situation.
I was 1600 miles from home on a business trip when I dissected. It was terrible for my wife and kids. I had little ones at home and my wife had to scramble to get to California to find me in a coma my 21 year old watched her three sisters. You don't want that. You want to treat yourself carefully and have a good medical team, a great surgical team, and a supportive family behind you. Getting this surgery in an organized, scheduled way is much more survival and much preferable than having a sudden dissection and being thrown into a medical nightmare. My surgeon was as cool as a cucumber, but even he will tell you that I am very lucky to be alive.
Good luck to you and write to me privately if you want to talk. Peace.
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2 ReactionsI do not have any underlying causes except hereditary and until about 8 years ago, had moderately high bp.
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