Thoracic Aorta Anuerysm confirmed in 3 siblings!

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I originally posted that I was diagnosed with a 4.2cm Thoracic Aorta Anuerysm in June this year after my sister had surgery in Feb to repair hers which measured 5.1cm. My sister is 50 years old and I am 55. Having grandmother and uncle who died in their 50’s possibly from a similar condition, it was clear that our family was predisposed to it. The rest of my siblings (3 brothers and two more sisters) were all given appointments for CT Scans and thankfully one by one they were all cleared. Unfortunately, my youngest sister (45 years old) has just had hers confirmed at 4.1cm. That makes 3 sisters out of 4 diagnosed with an anuerysm and 3 brothers cleared. We are told that this is unusual as it is normally the males who develop it. It has been difficult coming to terms with it but we are supporting each other and get inspiration from our sister who had the repair surgery and who has made an amazing recovery. I have my next scan in December. It is still frightening at times but it does get easier to accept. There is not much to change in our health and lifestyle as none of us smoke and we are all slim and fit. I am taking 2.5mg of Beta Blockers which can make me a bit light headed at times but other than that, life goes on and I just pray that our anuerysms do not grow and if they do that we will be as fit and healthy for the operation should it come to that.

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  • Posted

    Do you not take a statin? When I eventually asked what I could do to help my one the consultant said that I shuld get my BP controlled and that I could take a statin. No one in the earler four years had suggested anything.

    I'm having an MR scan this week as part of a new investgation into my hypertension that will better highlight my aortic anuerysm.

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    • Posted

      Hi Derek, the recommendation I was given was to go on Beta Blockers even though I do not have high blood pressure. Mine is often around 100/60 and sometimes drops under 100 but the cardiologist is happy as he just wants it to stay as low as possible. The interesting thing is that even the sister who has had the surgery has been advised to continue taking the Beta Blockers to ensure that the blood flow remains gentle. I have read some articles though, which suggest that Beta Blockers may not be that helpful and so it is difficult to know what and who to believe.
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  • Posted

    Hello Mary Rose,

     My thoracic aneurysm is at 4.2cm.  My next echocardiogram is next month and as I have not been scanned for a year I am hoping it will not have changed. I had a MRI scan last October and the cardiologist said I can be scanned yearly now.

    I don't think about it too much now, but sometimes I still get frightened, especially at night. Like you, I have always been slim and fit and have never smoked. I am an only child (well 66!) but many in my family have died of heart conditions, so who knows? I have three children, my son has had a scan and is ok but my daughters do not want to know.

    Did you have much advice about exercise etc. Nobody seems too sure. I was told by a registrar that I have a very serious condition and I must be careful with lifting and must not cycle. We I asked the cardiologist he said cycling was fine! I am not on any medication as my blood pressure is low anyway.

    I hope all goes well for you and your family and I also hope that none of our aneurysms grow. I feel better for hearing of your sister's good recovery.

    Best wishes to you all.

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    • Posted

      Hi Marlborough, I do hope that your next Echo will show that it has not grown. I don't like the idea of having a 2nd CT scan within 6 months of the previous one but after the one in December I will have Echo's or MRI's which are safer.

      I get more scared at night especially if I turn on my left side and feel my heart beating. I do a lot of yoga including inversions like head stand and shoulder stand. My cardiologist said that I can carry on doing these poses and only refrain from anything which makes me hold my breath (so no diving or swimming under water and off course no lifting of anything heavy).

      I do not have any children and so thankfully, this will stop with me but my sisters do, of ages varying between 14 and 32. We are trying to find a balance between being cautious and aware and not frightening everyone especially the younger members of the family.

      My sisters and I keep reminding ourselves that we are the special ones and that we are lucky to have been made aware of our condition. Sending you my best wishes.

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  • Posted

    Hi Mary-Rose,

    It's now 4 years since my aneurysm was discovered and operated on (I had a what is called a modified bental procedure). I was 47 years old at the time. The procedure includes the fixing of the aneurysm and replacment of the aortic valve. All is good now - on going medication is warfarin and bisoperal. After my op, 2 brothers were also diagnosed. One has had a successful operation and the other is being monitored. I hope all goes well for you. Frank.

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    • Posted

      Remember the song My Grandfathers Clock?

      I just had my aortc valve replaced due to aortic stenosis and got a tissue valve as I am much older. I thought great, I will not need Warfarin but the operation caused AF so I had to take warfarin until having a cardioversion.  

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    • Posted

      Hi Frank, It feels strangely reassuring knowing that there are other multiple siblings having aneurysm. My sister and I felt isolated when we were diagnosed following our other sister's surgery. I am glad to hear that you and your brother have both had successful procedures. Yesterday I went for my second CT Scan in 6 months and my anuerysm has not grown at all. I know that 6 months is not a long time and that it could still grow over time but the cardiologist said that having a second scan in the same machine and measured by the same radiologist is very precise and so who knows I may be lucky and and it stays as it is. My next check will be in a year's time and via an Echo. Will keep taking 2.5mg of Bisoprolol. My valve seems to be fine and it is Tricuspid.

      All the best to you and your brothers.

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  • Posted

    Mary-Rose - yep 2.5mg of beta-blockers here also and with the mechanical valve I also take 5mg of warfarin. Having said that, I do feel pretty good now. 
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    • Posted

      Hi Frank - what size was your aneurysm when you had the operation? My sister had hers done at 5.1 but only because she is small framed otherwise the cardiologist would have waited a bit longer. Not sure what is worse - surgery or the waiting game?
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    • Posted

      Mine was found almost by fluke after I went for a medical check up when the GP sent me for a precautionary scan after he thought he heard a murmur in my heart .(I think the murmur was actually backflow leakage through the bicuspid valve) .I thought I was taking a couple of hours off work to go for the scan.that turned out to be a very different day from what i expected..they found the aneurysm at almost 9CM..red light ambulance from one hospital to another etc that day. They did a few tests and scans and operated within two weeks. My brother was operated at about 5.1 also and they have told my other brother that they normally operate at around 5 although i think cardiologists will take into account the build of the individual. I understand the stress due to the waiting game - I guess i was 'lucky' that my diagnoses to surgery timeframe was very short.   

       

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    • Posted

      Wow....at 9cm, you really were lucky that the GP picked up the murmur. My sister's GP also picked hers up when he heard a murmur during a routine health check and she waited about a month before the operation. I kept putting off having mine checked as I felt sure that there would be nothing wrong but eventually I went to see my GP and he confirmed that I had a murmur too and sent me off for a scan. My third sister, the youngest at 45 has the smallest anuerysm at 4.1 but no murmur. This will be our first Christmas post discovery of our anuerysms and we feel grateful for my sister's recovery and for being made aware of our condition which hopefully can be managed. Wishing you and your brothers and everyone on this forum a merry christmas and a Healthy New Year. Mary-Rose
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    • Posted

      And the same to you and yours.

      By the way there is life after the op. Although for a time I was a bit nervous of the pressure on my chest pull staring the mower etc. I would show you the tool i built for overcoming the problem, but links to videos arent allowed on this forum. If you want a look go to yotube do a search for 'pull start tool' you wiil see a couple videos I posted.. ..I'm raffling one of the tools with the funds being donated to the World Heart Foundation .  

      Frank.

       

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    • Posted

      Wow, I had a look at the video and while it is not something that I would use, I can appreciate how effective it could be. You should apply to appear on Dragons Den. I hope that you will get the backing and opportunity to develop your invention into a sound business and then promote your inspiring story. Good Luck.
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