Second opinion on thoracic aorta ascending anuersym

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Well I went for a second opinion about my 4.8 aorta ascending anuerysm and the doctor wants to do immediate open heart surgery. I'm scared to death as I know they freeze your brain and you're on a heart and lung machine and in ICU for several days. I worry I could have a blood clot or get infection or die. In the mean time I'm having anxiety attacks about dissecting with this anuerysm. It's like choosing between the devil and the deep blue sea. Any recommendations on a good surgeon or hospital. I went to UNCG Chapel Hill for my second opinion. I'm a 64 year old female and live in Virginia.

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  • Posted

    You could get all of those things. Last big op, I was on a ventilator in ICU and did not know anything about it as I was asleep. I had a post op temp and wound infection and this was treated successfully, within 2 days, the temp had gone back to normal. Being on blood thinners, I did not get any clots post op. Pain and nausea were managed with medication. 3 months post op, no pain killers at all.

    It's a scary procedure.

    Being in ICU is best post op as it means nothing is being left to chance and someone will be there 24/7 to monitor and get you through, deal with any issues, step by step.

    I stopped researching the internet about the procedure and complications as its possible to scare ones self to death and imagine bad things that may never happen.

    Any complications will be dealt with by your team. That's their job and the experts do this all the time. For us it's different and so very special.

    Put your fears and questions to the surgeon before hand. I watch movies and do other things to take my mind off it. I also get frightened, then pull myself away from the fear. I am to have a scan in 2 hours time, both legs and abdomen, then go on from there ....be lucky!

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  • Posted

    I am a 61 year old female with 5.7 aortic root aneurysm. I do not have a date for surgery yet, but I have had a pre-admit done last week (so it will be soon, I hope).

    I don't know how long you have known about your aneurysm, but I have know since March. The first 2 - 3 weeks I really had a hard time dealing with the fear. I am more able to control my fear, and do what I feel will help me get through. I have joined a few facebook groups, I take my cell phone to bed with me and have it set so it is ready to call if I need it. Like Gate Keeper, I take my iPad to bed with me and watch things like "House" or "Star Trek" series. I also watch movies. All this helps keep my heart from racing, and allows me to fall asleep without being so afraid. I pray (always have) with gratitude for each day.

    I think I feel like I have lost what power I had to control my destiny. So, instead of dwelling on the fear and that loss, I focus on being busy. What will be, will be. I have no control. 

    I hope this helps. There are also facebook groups that 

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    • Posted

      sorry...there are facebook groups that help support you because the members are going throught the same thing, or have already gone through the same thing, and can help answer questions. You can add family members to the groups as well.
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    • Posted

      Thank you DebW for your supportive and very useful message. I also watch Star Trek! I am 62!

      I was diagnosed in 2012 and then monitored. I am on statins, blood thinners and a low dose of blood pressure tablets to take reduce the pressure on the aneurysm. I keep fairly active, walking and swimming. I go on holiday and just came back from Sardinia and Kenya. If I go away, I take my scan results with me on a DVD and I keep my medical history on a private internet link. I was more worried about losing my leg before the bypass, than I am now. Maybe I am in denial, but it beats fear hands down. Please do keep posting if you need to vent or have a rant or can be helpful to any of us. Thank you for writing.?

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  • Posted

    Hope you find this info helpful Gloria as I know how hard it is to find info for AAD suffers as it is rare.

     

     The sites below are well connected to Hospital and specialist research sites including the ‘John Ritter foundation’ in the US, plus Liverpool heart foundation in the UK which we support as with many others World-wide this is so important as we are so few.. We affectionately refer to US,  as “Warriors”.

     

    You will find us all on FB and find someone who is in your position with the info you are needing:

     

    Aortic Dissection UK Buddies (Uk Branch)

    Aortic Dissection Surgery Support & Education Group

    Aortic Dissection Support Group (US) Run by Lisa Peowski Bard

     

    My name is Paul Harris

    I am an AD suffer with a dissection. My Aneurism is at 5.8mm on the descending and may have to have the same surgery as you have had done after July 2017… so you're experiencing could help me and others too… and there are those who have your condition too.

     I live in Southampton Hampshire UK and part of UK AD WW Awareness team

    Today is a Good day...  You would be warmly welcomed in our AD awareness support groups.

     

    PM me if you can help with your own story, or Interested in finding out more.. or just read what others are doing and how they cope… AD is a family, we are a few... But big on action in AAAD awareness.

     

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