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Thorascic aeortic anyeurism

Posted , 18 users are following.

Ladytrue
Ladytrue

Would love to connect with people who have this so I can cope better knowing I am not alone!

5 likes, 47 replies

47 Replies

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  • lee_54830
    lee_54830 Ladytrue

    Posted

    Hello Ladytrue

    Five years ago (nearly six), I had a aortic aneurysm, I was dilated by 8.8cm (I was lucky they found it), my aortic valve had stopped working and I had severe aortic regurgitation (heart bleeding back in on itself instead of circulating around the body).  I had a aortic root and valve replacement, I now have a mechanical valve.

    If there is anything I can do to put your mind at rest, i'll be happy to do so.  You are most certainly not alone.  Wishing you all the best.

    • ncAortic
      ncAortic lee_54830

      Posted

      Mine is 4.7   and I too have a bicuspid valve. Mine hasn't grown in 10 years, but I am now having symptoms and thinking my surgeouns will now likely do the surgery even though I am not 5.0>

      I have been living in AGONY and pure hell because I was told the surgery for this has a survival rate of only 10 percent. I would love to hear your thoughts. What hospital and Dr did yours?

    • fiorenini
      fiorenini ncAortic

      Posted

      I had surgery 4 months ago, and was at 5.1, no bicuspid, and was told the survival rate was pretty high, even if i had the bicuspid valve. I am sorry that you are i such distress over it, i would reach out to another doctor possibly for more insight. Either way, if you require surgery, these procedures are pretty straightforward for doctors. WHile easy to say, try to find peace in that surgery is needed, and when done, you will no longer live with the fear of rupture.

      Frank

  • heidi41228
    heidi41228 Ladytrue

    Posted

    Hi I am also looking to connect with people who have this.  Driving me crazy worry about the what if's 
    • Ladytrue
      Ladytrue heidi41228

      Posted

      Someone sent me a link to a facebook support group and its calmed me soooo much i will find the the link for u
    • Ladytrue
      Ladytrue

      Posted

      I asked Dan1961 to send u the link! A
    • heidi41228
      heidi41228 Ladytrue

      Posted

      Thank you Ladytrue I can't go a day with out thinking about what if?  I am a breast cancer 4 year survior I don't know why I can't stop worry... but if I could have that link that would be great.... thanks
    • n56281
      n56281 Ladytrue

      Posted

      Hi did you have the link for the Facebook group please
    • kay10213
      kay10213 heidi41228

      Posted

      I would love to have the link to the facebook group. My aortic aneurysm just happened in November of 2015. Thanks
    • sec2709
      sec2709 kay10213

      Posted

      Kay, on FB under search , type aorta dissection support group.  Great help!
    • ncAortic
      ncAortic heidi41228

      Posted

      Reach out anytime, you can message me and we can talk. I too have developed an anxiety disorder over mine but think I have good news for you.
  • heidi41228
    heidi41228 Ladytrue

    Posted

    I just saw that I had a message from Dan with the link.... thanks smile
    • Ladytrue
      Ladytrue heidi41228

      Posted

      When you get on there I am Deborah Nekleva-Jackson ! Its normal to worry you will see we all are lol. How can we not! I seem to focus on it that I M ok for awhile then I obsess back n forth roller coaster! But ultimately its out of our control and worrying gets us no where but sick mentally. I remind myself of that daily lol! Hope to see u in the facebbook group!
    • sec2709
      sec2709 Ladytrue

      Posted

      Hi, I have a ascending aorta aneurysm and would like to join the FB page that is mentioned here.  Would you please direct me?  Would love to visit with people with this condition, prior to and after surgery.  Thank you
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