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Ascending thoracic aortic aneurysm

Posted , 6 users are following.

caroljb12
caroljb12

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?

0 likes, 22 replies

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  • xtine
    xtine caroljb12

    Posted

    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.
    • caroljb12
      caroljb12 xtine

      Posted

      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.

  • jimbo66
    jimbo66 caroljb12

    Posted

    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?
    • caroljb12
      caroljb12 jimbo66

      Posted

      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.?

    • caroljb12
      caroljb12 jimbo66

      Posted

      Ahh yes, that's different. Mine is an ascending aortic aneurysm which is right off of the heart.

  • dresc0
    dresc0 caroljb12

    Posted

    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.  

    • jimbo66
      jimbo66 dresc0

      Posted

      So no CT scan with contrast has been done?
    • dresc0
      dresc0 jimbo66

      Posted

      I had MRI scan which is very similar to CT, this gave a clear precise imaging of my aorta. 
    • jimbo66
      jimbo66 dresc0

      Posted

      I’ve never had an MRI, only CT’s I guess doctors like different methods
    • caroljb12
      caroljb12 dresc0

      Posted

      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.
    • dresc0
      dresc0 jimbo66

      Posted

      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.  
    • dresc0
      dresc0 caroljb12

      Posted

      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.
  • jimbo66
    jimbo66 caroljb12

    Posted

    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 

    • caroljb12
      caroljb12 jimbo66

      Posted

      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.
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