Amy Kionis-29

Name: Amy Kionis
Age at time of Dissection: 29
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 29 September 2005
Tell Us Your Story:

While 37 weeks pregnant with my second daughter, I suffered an aortic rupture. this came on suddenly and was rushed to two different hospitals where the second hospital successfully delivered my daughter and did open heart surgery.

I was given a carbomedics bi-leaflet valve in place of the part of the aorta that ruptured. On Easter Sunday 2010, I suffered another dissection. This one in the abdominal aorta. It currently measures 3.6 and no doctor around me will repair it until it reaches 5cm.

I am in pain everyday and visit the local Er frequently because of the pain. Currently no one knows why I’m in pain all the time and it’s very frustrating. I never thought that I would be a victim of two aortic dissections.


  1. Amy,
    I understand what you are going through. My descending aorta dissected 6 days after having my 2nd daughter via c-section. I have Marfan Syndrome and knew this was a possibility but I had my daughter anyway. I have not had my descending aorta replaced yet either. It is currently over 4 cm but not yet at 5. The reason for not doing the surgery at this point is because the surgery is a serious one and they will not perform the surgery until the risk of not having it out weighs the risk of having it. I went to Houston and met with Dr. Joseph Coselli (who is by far one of the best doctors for that surgery in the country). If and when I need the surgery he will do it. I’ve had multiplt (5+) different vascular surgeons and 3 different cardiologists tell me that Dr. Coselli is the “go to guy” for this serious surgery.
    Now, since the night I dissected I have had a horrible pain in between my shoulderbaldes and down to my lower back. The pain is constant, debilitating and drives me crazy. It’s not as serious as when I actually dissected but it is also not your “run of the mill” back pain. No one, including Dr. Coselli could tell me why I was still having pain a year after my dissection. (I dissected August 29, 2010). I have been told that some people do experience pain after their dissection, sometimes it goes away as quick and sudden as it came and some people have said that the pain did not go away until they had surgery. I was advised that in most cases it goes away on it’s own and because of the seriousness of the surgery and the fact that there is no guarantee that the surgery will fix the pain that cannot be a reason to perform the surgery. I have gone through multiple pain medications (partly because my body has always had a really high tolerance for medication). Eventually Fentanyl patches worked the best with percocet for breakthrough pain. The only thing with that is that I have read and heard that getting off of Fentanyl is a pain so I have made the decision to lower my dosage and soon get off of the Fentanyl and just deal with the pain. I’m 20 months out from my dissection and the pain is still there but not as serious.
    In the next 8 weeks or so I will be having a metal valve placed in my heart and my aoritc root replaced….due to Marfan’s and am nervous about what the recovery from that will be like…
    Not sure if you are experiencing the same things I did but the emotional stress and anguish when recovering from my dissection was horrible. I was a wreck, constantly paranoid that something was going to happen, not a good wife, not a good mother and not active in my family (at least, that’s how i felt), emotional rollercoaster doesn’t even come close to explaining how I felt. Depressed is no where close to a good enough explaination. It was the hardest thing I’ve gone through in my life. This website helped me a lot. If you ever need someone to talk to or want to ask questions or compare notes as to what you have been through please feel free to email me. It took a lot of support and a long time for me to “get back to normal” so I am more than happy to lend a listening ear or share some stories and information.

    I wish you and your family all the best,
    Amber Berg, Denver, CO

  2. could I have more info on Marfans Syndrome and Skin inflammation Infection???around ankle following Dr.Debacky procedure to 100% unblock femoral artery in rt.leg -left leg still to be done as well as dysecting aortal aneurysm now @ 4cmsx5-2 cms,Had Debacky procedure done March 6th and other than very itchy pimply outbreak ,and some swelling,recovery has been remarkable

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