I was diagnosed with a 4.1 cm ascending thoracic aortic aneurysm two years ago. In December it was found to have grown to 4.4 cm. My dr is currently monitoring this but I am now concerned because of the recent change. My blood pressure is good and I exercise most days but find myself worrying about the future. Any recommendations on how to cope with this and stay calm?
apparently I was diagnosed with a 4cm four and a half years ago - not reported to anyone - found in my notes last year when it was found, accidentally, to be 4.9cm. I am in the UK and am not impressed by my diagnosis amd treatment plan - eg they do not even call it an anurysm - just a swelling when I asked why they said they preferred to use a euphemism. So where are you Carol? I am in Leeds UK.
One year ago at the end of this month I had my AAA repaired using a stent. I felt the open method was more than I could take. I did have some trouble, it was with the entrance in the groin area, the stitch didn’t hold and I developed a hematoma and they had to go in and repair that about 10 hrs after the stent was put in. The hematoma was not a bit of fun, my scrotum was full of blood and was easily the size of a grapefruit. It took awhile to go down about 2 weeks are more. I was 66 at the time and was off work about 4 weeks. I had a ct scan at 4 weeks and have another scheduled for March. All in all it wasn’t bad. Mine was at 5.5 at the time and took about 9 years to get there from a 3.4 when first released. My surgeon was just great. Any questions?
xtine, I would not be happy with your dr's response either. When my aneurysm was 4.1 cm my Dr referred to it as a dilitation, not an aneurysm. That has now changed. I am planning to get a second opinion in the near future just for good measure. I live in Illinois in the U.S.
jumbo, thank you for your response. I didn't realize that an ascending aortic aneurysm could be surgically repaired with a stent. I thought it would have to be an open method. Good to know. Glad to hear you are doing well now. I am 62 so close to your age. Where did you have your surgery done? Are you located in the U.S.?
Hi Caroljb12,
I was finally diagnosed with an Ascending Aortic Aneurysm measuring at 4cm in November 2017. They first found I had a slight enlargement in June 2017 and I was getting more tests done, was seen by 2 consultants 1 saying the aorta was just over the recommended size, and the other saying there was no clear definition or an aneurysm and confident there was nothing. However, to put my mind at ease the consultant offered to give me an MRI scan. I accepted and the results showed it was larger than initially thought.
I am 32 years old, I can't say it is easy to cope with the news I certainly have struggled to come to terms with it, I just have to think of the positives that they have found it now. I believe you need to do the same, everyone is different and all have our own coping mechanisms. I am currently going through counselling to help me cope with the constant worry of it.
I hope you find your coping mechanism and see the positives that you know you have it. There is a lot of success stories and reports on the Aortic Aneurysm in the US.
AAA for me was a abdominal aortic aneurysm not sure they are the same . Yes I’m in the US in the great state of Texas. I used Harris Hospital in downtown Fort Worth
I would also say that I never thought the surgery would go sideways, I was totally confident in my surgeon. I’m the type of guy that likes everything to be discussed good or bad but I never worried. Even with the extra surgery I was only in the hospital 2 nights. My surgeon told me take it easy for 2 days but on the 3rd day get up get dressed, shoes and all and walk around the house every time you go to the bathroom and the 5th day walk outside on the side walk and drive way.
What else? If you worry about it maybe you should get a second opinion
So no CT scan with contrast has been done?
I had MRI scan which is very similar to CT, this gave a clear precise imaging of my aorta.
I’ve never had an MRI, only CT’s I guess doctors like different methods
Ahh yes, that's different. Mine is an ascending aortic aneurysm which is right off of the heart.
Thank you dresc0. I am learning to cope with it. Some days are better than others. It helps to hear about others who are going through the same thing. I think the forums are very useful and you are right, I have read a lot of patient success stories.
Thanks jimbo, that is my plan in the future. I really appreciate hearing about others who have been treated successfully for any type of aortic aneurysm and also hearing about the best hospitals for possible surgery in the future. I live in Southern Illinois and am doing some research on best locations. I will travel if necessary.
I am from the UK so this maybe the reasoning, MRI is more readily available for us. During the MRI I was connected to an ECG monitor so that could captured when I heart was pulsating to get a better reading.
The forum has certainly helped me to know I am not alone in this. Always good to talk about it with people that are or have experienced the same.
Be thankful you know it is there. Keep blood pressure down. I know it is scary mine is in the aortic root. It is at 4.6 cm now. Surgeon says at rate it's growing will most likely fix in 4 to 5 years. Just know you are not alone. Wish you the very best.
Thank you Steve. Wishing you the best too. ☺
Hi Carol now I know you are from the States a couple of differences in the UK might explain things:
You are much more fully aware of thoracic aortic aneurysms and the term ascending aortic aneurysms - this is still not widely recognised in the UK.
Possibly because of places like Leeds where they contest that a euphemism of swelling is usual up to 5cm and also the confusion that arises as AAA is used solely for abdominal aortic aneurysm which has a much easier prognosis if discovered; less intrusive surgery that is required for the abdomen and ability to use stents which are not possible above the heart in the ascending. Also the NHS only recognises AAA (abdominal aortic aneurysm) and does not list TAA as a condition! So no wonder facts are hard to come by. All males in the UK are offered a scan for abdominal aortic aneurysms at 65 years old at their doctors surgery. This is not offered to women. No-one gets scanned for thoracic aortic aneurysms. (There is another forum Jimbo66 for AAA (abdominal ....) but this forum is for those near the heart.
There is though a specialist centre for ascending aortic aneurysms at the Liverpool Heart and chest hospital - where they publish a lot have a big team and hold master classes for surgeons throughout the world. But this seems to be little known. I hope my 'swelling' never gets to 5 but if when it does I will be asking for a second opinion and see if I can be seen at Liverpool.
The second piece of misunderstaningbetween US and UK is the use of MRI and CT scans. The MRI is more expensive than CT scan in the States where patients or insurance company has to pay. It is less intrusive than the CT scan as it does not use radiation, it uses magnetic resonance.
I have just asked my cardiologist whether my next scan (due in April - I had an MRI in October) could be a CT scan - he said of course if that is what I wanted though I could see he didn't think it favourable because of the radiation. The imagery is excellent in both I believe.
Overall awareness of this is much higher in the States probably due to the Pulitzer prize winning article by Kevin Helliker 18 years ago in the Washington Post raising awareness. Here it seems to be hidden, and misnamed. Part of my mission is to get more publicity and clarity. It is called very rare 5 in a 1000,000 in the UK. This is not true. I feel they allow it to be used as a natural cause of death and are not investing in preventing dissection and rupture. Even private health care in UK will not consider operating till 5.5cm...it is possible to be treated at a much earlier stage in the US.
It is a big issue.
5 in 100,000 not 5 in a million!