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Looking for a forum for thoracic aortic aneurysm

  • 1.  Looking for a forum for thoracic aortic aneurysm

    Posted 12-01-2021 15:07
    New member here.  Greetings all.  I was just wondering if there is a forum dedicated to aortic aneurysm.   Last March I was diagnosed with a 4.1 cm ascending aortic aneurysm.  I've been running for 100 minutes/day on an elliptical for the last 13 1/2 years, weightlifting 3-4 days per week.  I slowed down a little after diagnosis and discussion with cardiologist. I'm due for another visit with the cardiologist in a couple of weeks, but still have many questions.
    I'm a 54 year old male, a gym rat, and absolutely hate "watchful waiting".  Every little chest discomfort triggers a depressing "what if" thought stream, and mild chest discomfort is fairly common.  Does anyone else ever get a momentary tingling or pin prick sensation in the chest, particularly during or after a workout.  I wouldn't use the word "pain" but definitely some discomfort.
    Also, has anyone heard of or done PEARS (Personalized External Aortic Root Support)?  The procedure is not approved in the USA, but seems highly regarded In Great Britain and other parts of Europe and Asia, and is very appealing to me as an alternative to watchful waiting and/or standard FDA approved aortic repair surgery.

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    Bernie Schwartz
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  • 2.  RE: Looking for a forum for thoracic aortic aneurysm

    Posted 12-02-2021 04:22
    Hi Bernie (Ben?),

    There is a huge AA contingent on this site and I will defer to them to address your questions, because I am not one of them.  You also might experiment with a search or two and you should find a number of AA threads.

    Welcome aboard,

    Ira

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    Ira Reid
    Hoboken NJ
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  • 3.  RE: Looking for a forum for thoracic aortic aneurysm

    Posted 12-02-2021 10:04

    Thank you so much for your sharing. I have exactly same symptoms and feeling like you. And I would like to know more about this.

    On 09/26/2021 CT scan found out I have 4.0 cm Thoracic Ascending Aortic Aneurysm, I’m 68 years old. 



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    Long Tran
    Omaha, Nebraska
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  • 4.  RE: Looking for a forum for thoracic aortic aneurysm

    Posted 12-02-2021 11:45
    yes I didn't see any AAA support either but this is better than nothing. I have had the AAA surgery it is very hard on you and radical on you but I died on the table and my surgeon saved my life so that could be why my AAA surgery was so radical on me. I get chest pains and needles around my chest every now and then after the surgery.

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    jon klingler
    Roseberg OR
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  • 5.  RE: Looking for a forum for thoracic aortic aneurysm

    Posted 12-02-2021 12:28
    Hi Ben,

    I agree 'Watchful waiting' is hateful, I was diagnosed earlier this year at 4.5mm, I'm 52, and like yourself I am not asymptomatic.
    I regularly get chest discomfort/pain and when I do, I stop doing what I am doing, and rest to see if it passes.

    What you have to watch for is: excessive pain and sweating, that's when to see the medics.
    This happened to my uncle in 2010 when I was with him, he asked to be taken home which I did. He felt better later that day and didn't see the doctor.
    The following month he collapsed and was taken to hospital with a dissection, and even after surgery died the next day.
    I look back and just wish I could live that day again and get him to hospital.

    This condition is real, don't take chances, do not stress your heart.

    I am from Great Britain but my cardiologist has not mentioned Pears.

    Take care,

    Darren



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    Darren Tebbitt
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  • 6.  RE: Looking for a forum for thoracic aortic aneurysm

    Posted 12-02-2021 14:08
    Thank you.

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    Long Tran
    Omaha, Nebraska
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  • 7.  RE: Looking for a forum for thoracic aortic aneurysm

    Posted 12-02-2021 21:06
    Thank you to all respondents.  For anyone interested, here is a link to some info on PEARS:
    https://www.hcahealthcare.co.uk/our-services/treatments/personalised-external-aortic-root-support
    Darren - if you ask your cardiologist about it can you keep us informed?  From the peer reviewed articles I've read, this seems to have a few advantages over other, more prevalent courses of treatment.  The surgery does not usually require deep hypothermic circulatory arrest (DHCA); this is unlike other ascending aortic surgery.  It also largely eliminates watchful waiting and even seems to facilitate healing of the damaged aorta.  I was saddened to read about your uncle's situation; it really highlights the farce of "watchful waiting".  You can watch and watch (stressful as that is) but how can you know when to go to the emergency room based on what you see? We can't go running for a CT scan in response to every chest pain.  It's an entirely subjective trigger, and if you get it wrong you die.  All that said, I'm not trying to post an advertisement for PEARS.  I'm trying to find out if there is some down side or limitation to it; I wonder why it isn't used (or even discussed) more often.

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    Ben Schwarz
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  • 8.  RE: Looking for a forum for thoracic aortic aneurysm

    Posted 12-03-2021 13:36
    Ben,

    Try to keep calm, I know how difficult it is in the 'watchful waiting' period, but avoiding a rise in blood pressure is what we all must focus on.
    The risk of dissection at 4-4.5mm is very low, providing we look after ourselves and don't over strain.

    My uncle wasn't in the 'watchful waiting' period because he didn't know he had a dilated aorta, his dissection came as a complete surprise.
    He was in good health up to this point so hadn't needed a CT or MRI. I do not know the size of his aneurysm at dissection? He was 73.
    Mine has dilated in the past 18 years, I know this because I had a scan in 2003 and no mention was made of abnormal Aorta. so it must have been smaller than 30mm? This suggests mine has grown by a minimum of .8mm/year.
    Because of my strong family history I have participated in genetic testing to try to find the gene responsible? But unfortunately I am in the 75% for which the gene has not been discovered.

    It is tough in the 'watchful waiting period', but we are the lucky ones because our dilation/aneurysm has been discovered and is being monitored.


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    Darren Tebbitt
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  • 9.  RE: Looking for a forum for thoracic aortic aneurysm

    Posted 12-03-2021 13:42
    Darren:
    Thank you so much. Your message is very heart warming and encouraging.
    Judye Conner

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    Judye Conner
    Retired PE Teacher
    Las Vegas NV
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  • 10.  RE: Looking for a forum for thoracic aortic aneurysm

    Posted 12-03-2021 13:54
    Thank you for your sharing, I feel a lot better because my ascending aortic aneurysm is 4cm about 2 months ago. Hopefully 18 years later it's won't change 🙏❤️☺️.

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    Long Tran
    Omaha, Nebraska
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  • 11.  RE: Looking for a forum for thoracic aortic aneurysm

    Posted 12-04-2021 11:55
    Ben,

    I really think you've got it wrong to consider it "the farce of watchful waiting." As a non-expert, I think the whole point of watchful waiting by a trained cardiologist is that medical science has identified the dissection risk inherent in different sized aneurysms and determined that in smaller sized cases, the risk of dissection doesn't warrant the risk of open heart surgery.

    To turn the conversation in a more philosophical direction, since this is what I do, aren't we all watchfully waiting through life?  Regardless of our respective medical conditions (I am a 71 year old heart attack and quintuple bypass survivor who was in otherwise good health but nearly died of open heart surgery complications), none of us know what will eventually kill us or when.  That coronary artery disease, in my case, or that aneurysm, in your case, may not even be what kills you or me today or tomorrow or in 10 years.  All we can do is live here now, and appreciate the present instant of life, which is the only reality.

    Perhaps Shakespeare said it best in Henry IV: "By my troth I care not; a man can die but once, we owe God a death... and let it go which way it will, he that dies this year is quit for the next."

    Happy trails,

    Ira


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    Ira Reid
    Hoboken NJ
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  • 12.  RE: Looking for a forum for thoracic aortic aneurysm

    Posted 12-03-2021 01:56

    I just read the message from Ben and I completely understand the terror of waiting and watching. I'm a 75 year old female that was diagnosed In July with a 4.2 prominent ascending aorta. I occasionally feel the slight pen prick that Ben described. I also feel a tightness in the middle of my chest at the base of the breast. I was placed on Metopropol 25mg. It has reduced my blood pressure and my cardiologist is very pleased with that. He plans to do another CT in a year. He said Surgury could not be done unless it reaches 5.0-5.5cm. 

    I would love to know what Ben finds out about the procedure that he mentioned. I was told to avoid weight lifting or anything that could cause a strain. I'm a retired P. E. Teacher so I'm active, but I've limited myself to walking since my diagnosis. I'm looking forward to any helpful information.
    Judye Conner



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    Judye Conner
    Retired PE Teacher
    Las Vegas NV
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  • 13.  RE: Looking for a forum for thoracic aortic aneurysm

    Posted 3 days ago
    Thanks for this interesting information!

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    carlo pinini
    Engineer
    TDLS
    Miami FL
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