Aortic dissection & aortic aneurysm information support group

Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

Not being macabre here..but this question REPEATEDLY tops the 3 most asked question on Google regading Aortic Dissections. 

My research from published medical papers seems to indicate that their is a 60% survival rate after 10 years for Type 'A' Aortic Dissection but I cannot find any further survival statistics past this... So - the million dollar question.... :0

Anyone know of anyone who has gone past this... and how long..??  I am sure that this would be a very positive set of numbers for all of us to know.... Their are a number of answers online for this question but most are pretty obtuse and no-one to my knowledge has ever put down a definitive answer.. not that I/we can either but it would be good to get some numbers to look at..

I make my 10 year anniversay next April 2013 so hopefully I can look forward to the next 10 years ;-)

Anyone like to put their AD anniversary  date to this post.. if we have enough data we can then do up hopefully a quite reassuring graph for our members and others.. :)

 

cheers

 

Graeme Archer  

 

 *** Update August 25 2015***
12 Year Anniversary April 23rd 2105.. here's to my lucky 13th Anniversary coming up in 2016 :-) 

 

 

Tags: AFTER, AORTIC, DISSECTION, EXPECTANCY, LIFE

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Graeme, I asked my surgeon this and he said that because it's only been 10-15 years since people have been surviving the surgery there are no statistics beyond that.  It would be interesting to see posts on here, your 9 years give me a lot of hope.  My AD anniversary is 18 August 2011, not long!

 

Nicola

Oh this is good news indeed:) Thank you for sharing that information.

Deborah

I will hit my 7yr anniversary in December. I've also done research on this and asked my cardiologist and surgeon. One of them said something that really made the most sense. He told me to ignore the stats I read online. He explained that most dissections/aneurysm occur in much older people and that stats are made up of averages. That with a medical issue such as dissections, where the survival rate is low, due mostly to misdiagnosis or the fact that for many cases it is asymptomatic and never diagnosed before death, they don't have a big number of survivors to work with and for most cases all age ranges are grouped into one study. Therefore lifespan is hard to rate, age makes a big difference. I have been told that I could live to be 90, that my lifespan has not changed due to this dissection. The fact is aortic dissection has not and still is not being studied as much as many other more common diseases/disorders. Everyone in the world knows what you are talking about if you were to say I survived cancer, but when you say I survived an aortic dissection....most of the time you have to explain what it is.

So live your life, don't worry about stats or numbers!!! We all are strong people, we proved that by surviving. Life is too short to worry about numbers.

*hugs*

Kimberlee

right on!  ; )

I worried a lot the first year, but made it past that and I stopped worrying about

dying and started to live.

Frendessa

 

Thanks Kimberlee and Hugs back to you :)

Dear Graeme,

What a great idea to have all members of this group post their AD anniversary date for data collection. Obviously there are so few of us survivors that this is sorely needed information. Are you volunteering to keep the data and chart for the members? I agree the first question we all have is 'how long will I live' and the second for me is 'how many survivors of AD are out there in the world'.

My AD Anniversary Date: May 31, 2009

Warm Regards,

Deborah

Yes Deborah, the information will be kept along with other data that we collect from time to time..as frankly so little data exists on Aortic Dissection anywhere - even the medical profession does not know or keep a central register on AD! Yes it makes me mad as well! 

 

cheers

 

Graeme

Thank you for doing this important task for our group.

Warm Regards as always,

Deborah

Mine is 17th September 2008

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