Scared!!

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I have just been diagnosed with an ascending aorta of 4.4cm. This was found during a routine ultrasound scan. The doctor told me that an earlier ct scan identified the aorta at 3.8cm and because the measurments were taken using two different methods he was unsure which was correct. So i am due another scan in 9 months. I would be telling lies if i didn't admit to being afraid of what the future holds for me. I am a 70 year old male in reasonable health.

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  • Posted

    Follow your Dr's guidance.  Mine was found the same way two weeks ago today.  It measured 4.3.

    After follow up this week I was told I can resume my normal running but not to lift anything that causes me to strain.  For me that's about 100 lbs.

    From her we monitor every 6 months with a CT scan.

    I was scared at first too!  But I was told none of us are stamped with an expiration date.

    Good luck and stay positive!

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    • Posted

      Thank you for your reply....these are scary times.......laying awake at nightis the worst...your mind runs riot and everything seems so bad. Thanks again. Roy
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  • Posted

    Hi Roy,

    I was diagnosed in July and mine was 5.2cm and my aortic valve was leaking. . I was told that we would do more measurements in four months. I read that many surgeons will now operate on female patients at 5.0cm, so I got a second opinion. That surgeon felt that my valve would work correctly once the stress was removed from it and qualifying for valve-sparing meant a different surgeon in his group.  He said to return in three months. I have several friends who are nurses and they all urged me not to wait. I decided to meet the guy who would be my surgeon and he agreed to do my surgery ASAP. I had it done on October 9th, six weeks ago. I couldn’t believe that I needed open heart surgery, but finally dug deep into my faith and found peace with it. Every time I began to doubt my decision, I’d experience twinges right where the aneurysm was, and I hadn’t felt those prior. Confirmation! The surgery went perfectly and my surgeon told my husband that it was good timing—-my aorta was very thin. I was off narcotics by day four and left the hospital the fifth day.  I didn’t need anything for pain. The first four weeks of recovery were pretty tough because I had to sleep on my back and that didn’t go well. I finally started taking 2 Tylenol PM and that helped me start sleeping on my sides and sleep all night. I’m now doing cardiac rehab and I feel almost back to normal. I am so glad that I am on the other side of this journey and that I feel good! I’m back to painting my kitchen cabinets and my social life. 

    The expected increase in size of an aneurysm is 1mm per year, and you didn’t mention how much time between measurements. If it’s growing faster than that, it would be a factor for having surgery sooner rather than later. Mine also was more than twice the size of the rest of my aorta, which was another criteria I met for surgery. 

    I think the best advice I can give you for surgery is to select a surgeon who does the exact procedure you need day in and day out. You want a real expert, and once you find the right surgeon, the rest is their job! And don’t watch any online videos! Be thankful your aneurysm was discovered—-95% of the time, the first symptom is death. You’re going to be fine!

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    • Posted

      Thanks Sandy. I was measured at 3.8 cm during a unrelated ct scan in December 2015 and nothing was said to me I had an echo ultra sound scan in July 2017 and my ascending aorta measured 4.4cm.....and the dr wants to see me again in 9 months. Just scared what the future holds for me. Thank you for replying. Roy
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    • Posted

      I understand the fear and feeling like you’ve got a ticking time bomb in your chest! Keeping your blood pressure quite low and avoiding lifting and straining are two things you can do during this watchful waiting period. The second is to do your research and find the very best surgeon so that it doesn’t have to be a rushed decision later on. And then you enjoy life and get scans when YOU want them. If you want to go back and have a scan in six months, do so. It’s your body and your life. I had to take charge in my case and I’m so glad I did. 
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  • Posted

    I'm told the CT scan can be up to 10 % out as the ultrasound image is measured from a screen shot and the catches the moment of the pulse.

    I was told this after having had a CT scan for something else and the aneurysm was mentioned as being 4cm opposed to 3.6cm on an ultra sound scan a few months earlier.

    It is a shock initially but you get used to it and most are slow growing and you are way under the stage where they would want to think of operating. Mine has only gone from 3.1 in 2004 to 4cm in 2017.  

    The only problem now will be if you want travel insurance, to them size does not matter.

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    • Posted

      If you appreciate Black Humour on Black Friday.

      When I mentioned the insurance problem to the person doing my scan one time she said 'Why not insure you? If it burst it would only cost them a £100 for the ambulance to take you to the mortuary:-)

      I was once quoted £2000 for a month in America. I asked how much it would be for Cuba and was told £1000. After that I just asked Insureandgo to exclude that risk from the policy.

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    • Posted

      Wow thats a big insurance cost. I wonder what the cost would be for a trip to Europe. I suppose if anything did happen in the states then it would be £2000 well spent and I agree with your nurse if the worse did happen the insurance cost would be a trip to the airport and a plane ride home. Roy

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    • Posted

      Why have the expense of the air trip home. Cremation where you are and ashes brought home. Though I have several places in the world where I would not mind being buried. Above English Bay in Antigua or my body put into one of the shelves in the Nuns Corral in the crater of the volcano in Madeira.

      The £2K quote was from an insurance broker as none of the usual travel insurers would take me as they just work from a tick list and ask "Has it bled, have you been operated on"

      Some understand how ridiculous it is and tell you of relatives who have had the operation successfully. One was a 90 year old grandmother.  

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    • Posted

      Thanks Derek....i suppose the good thing is they actually found it and i will be monitored....at least it gives me a fighting chance. It is what it is and there is nothing at all i can do except watch my lifestyle BP etc. Something will get us in the end.... but please not yet!!!! My wife and i love travelling all over the world, still can, difference is it may cost more. Cheers Roy
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    • Posted

      Let me know the reactions you get when trying for insurance.

      It is a scary thing to begin with but being under observation gives you reassurance. A friend who was a policeman said that various types of aneurysms were the main cause of middle aged and old men being found dead.

      The national screening programme for aortic aneurysms must have reduced that considerably.

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    • Posted

      I will let you know about the insurance although it won't be until the New Year...to be honest i didn't know there was such a thing as an Aortic screening programme. Roy

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  • Posted

    I think it is just for AAA abdominal aortic aneurysms. It has been around for quite a few years and is automatically offered to men at 65 so you should have had it. There is also bowel cancer screening programmed for men and women to send of three stool samples.
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    • Posted

      I knew about the bowel screening programme but have never been invited for a AAA scan. I will contact my GP Monday. Cheers Roy
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    • Posted

      What was your original routine scan for? Usually they have a good look around liver, kidneys, gall bladder and all of the aorta.

      When I had the initial scan on my gall bladder it showed cysts in my liver and one kidney and my AAA. 

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    • Posted

      I have Persistant AF and the scan was a routine heart scan to check heart chamber condition ....which were fine and they then noticed the 4.4cm accenting Aorta. So I need a scan to check the decending Aorta. Cheers Roy
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