I need some prospective and support on my newly found thoracic ascending aortic aneurysm size 4.8

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I'm 46 and just lost 30 pounds and have been clean eating for 6 months ... I decided to go get a full heart work up at the cardiologist office... They are telling me my heart looks great ! BUT i have a large aorta measurement at the base leaving the heart measured @ 4.2cm on echo ... Dr set up a CT scan and it shows the entire ascending portion swollen and at the widest it's 4.8cm .. I was put on BP meds and told wait and watch from cardiologist and surgeon. Please help me cope with this decision ... I have 2 young girls and I have never drank or smoked ... A famous NYC surgeon has agreed to do the operation due to my anxiety over this after first telling me I won't touch it until it's 5.5cm. I'm getting a second surgeons opinion and asking a ton of questions.... What would you do ?????

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    I'm afraid to say yes to the operation but I also know other people can't wait to get the operation ... This wait and watch decision is killing me and the Drs won't commit to a best alternative decision... How is it possible something or someone that is so life threatening not just saying YOU NEED THIS DONE ... I understand it's my choice but something still feels really wrong. I guess my really wrong feeling is not having a growth history. And having a great surgeon agree to operate ... Ugh !!!!

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    Welcome, Joseph.

    Everything I've been told points to waiting until 5.0 or so. It's major "cut through the chest surgery". However, with technology, it could be a much easier procedure in the future.

    This is new to me too. Family history of heart issues. Lost a lot of weight and do what I can to stay healthy. We can't control everything.

    Mine is 4.1 and it the thought of the surgery scares the crap out of me. A lot of us feel like walking time bombs.

    Just know you aren't alone. This is a great forum.

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    • Posted

      Thanks for the support ... Is it just me or does this entire procces seam not as important as the possible out come ??? I'm so depressed and I was on a health quest before this. YES I'm glad I found it. I'm torn so so torn now that this surgeon has agreed to operate. He's the best in NYC and I love everything about them. So I have no past measurements to compare growth rate and I'm told it may not grow ... But I need to limit my activity and walk around thinking I'm sick. I'm told 4.8 is not going to burst .. Then after calling a few times and after my cardiologist called him he agrees to do it at 4.8... I did have some undiagnosed issue while running but all Drs said its not connected to the aneurysm ... So basically my surgeon is allowing this due to my stress levels and the fact that my body is sending possible warning signs. Basically they are saying trust your body ... But honestly IDK what or why I had the running problem. After BP meds it went away ... Actually after BP meds I can feel a calmness over my entire body ... That could have been giving me the running symptoms. So see I don't want to make a mistake saying ok but on the other hand having an aneurysm is also not ok ..I know you understand and I'm sorry we need to think about this. Tell me ? If you are given the option to operate at 4.8 would you ?

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    Hey Joseph, you are certainly not alone. Mine is at 4.3 and discovered over 2 years ago. 2 CT scans and 3 echocardiograms since show no change in size in fact, I am considering coming off 2.5 dose of beta blockers as I don't like the thought of taking daily meds. I am 57 and found out about mine after a younger sister discovered hers. My sister's was already at 5.1 so she has had surgery and has recovered well. The truth is that no one can predict growth pattern. Why did my sister's grow faster than mine? I have also thought that I would rather have surgery and stop the anxiety but what if it does not grow for several more years... why put myself through open heart surgery which I don't need yet. There is bound to be improvement in the repair technique as time goes on. Staying fit and healthy so you will recover quickly if and when the time comes would be my advice. Stay positive and trust me, it gets easier once it sinks in and you accept the reality. Best wishes.

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      Thank you ! I often wonder how many people are walking around with this inside them and they don't know .... In my opinion something so serious lacks so much data and information based on risk. I'm a fact and numbers person so lack of perspective coupled with Drs who ultimately say IDK kills me ... Especially when it's a mechanical problem and they can see it touch it and have so much data from the past ... Yes I understand they say 5.5 is the time. But wouldn't I rather just do it now younger and healthy ... Do it now at 46 and not 56 possibly... Oh and then they throw in "if" it grows at all ... Ugh

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      Hi Mary-rose

      Do the doctors give you the feeling that since it hasn't grown in 2 years that it is more likley to stay the way it is? The uncertainty has me so worried and confused as to what i should do.

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      Hi John, I wish the doctors could reassure me that it wil never grow but unfortunately they can't. The fact that it has not grown in 2 years and having been measured twice by the same radiographer using the same CT scan machine (apparently this can make a diffierence when measuring such tiny changes), means it is not fast growing at the moment. Aneurysms do tend to grow with age which is why we need regular montoring. The cardio surgeon who had operated on my sister mentioned that he had once repaired the thoracic aorta of a lady in her eighties. Her general good health and her attitude swayed him into performing the surgery which she completely recovered from. I know it is difficult not to worry especially at the early stages but try to focus on staying fit and healthy which if nothing else, will make you feel good about yourself.              

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    • Posted

      Thank you Mary rose. It's all so frustrating.  How long was your sister's recovery? Does she feel like she is 100% back to 'normal'? Does she have any lingering side effects? 

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      John, my sister made full recovery and was back to normal within 6 weeks. She has had some problems with the scar causing keloids which makes the skin lumpy and itchy. She has had some corrective surgery as the pins holding the ribs also strayed to show under the skin. These have now been removed. The whole experience was not pleasant but she got through it and now feels lucky to be alive. She still has to be monitored as clearly ours is genetic and so you never know.
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    Hi Joseph,   If I were you I wouldn't push it.  You are not in the danger zone yet.  Surgery does have risks.  You could do things that could possibly keep it in the safe zone i.e.  blood pressure medicines and statins, moderate some external pressures out of your life like work stress, etc.  You may be lucky and keep it in the safe zone!!!  I had an abdominal aneurysm rupture on me when it was about 8.6 cm and I fortunately survived.  Below are some stats I found on the internet: 

    AAA Diameter (cm) Rupture Risk (%/yr)

    6–6.9 10–20%

    7–7.9 20–40%

    > 8 30–50%

    *Elective surgical repair should be considered for aneurysms > 5.0–5.5 cm

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    • Posted

      Thanks James ... Yes I'm currently processing this issue and every dr said wait and watch. My feeling is to hang close to my cardiologist and get a few new measurements and start a time line on this. I have PTSD and depression when things go bad in my life ... This one is a whopper for me and my dads stroke was also a whopper. Yes I need time to digest this thing but I also need REAL HONEST PERSPECTIVE FROM PEOPLE WHO HAVE THE SAME ISSUE. I'm glad I found you and the others ... This is not something other people know a lot about. I'm still shocked that the Drs are so IDK about it to some extent. Almost makes me feel like they know most of the time nothing bad happends but they can't say it

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    Hi again, Joseph. I totally understand everything you are saying. When I first found out about mine at 3.9, no one made a big deal about it. Well, it is a big deal. My mom who was very fit except she ate a lot of red meat and some saturated fats, and she had a stroke and died three months later at age 72. Most people in my family don't live past their 70's so I feel my expiration will be close to that. So, my defense is staying educated on this topic.

    My growth rate is .1 cm per year so far. Like you, I don't want to have surgery at a risky age. HOWEVER, it is a big surgery and we sometimes have to trust doctors with experience and wait - at least until it sinks in and we learn as much as we can.

    Praying for you and all your issues. I am super stressed at work and wish I could quit or get a low stress job but my income and benefits outweigh my desire for now. Besides l need really good insurance to cover whatever may come up.

    Hang in there. We're all in this together. ??

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      Hi Anna, I run a sales team in the financial markets industry and also thought of quitting when I discovered my aneurysm. I am glad that I didn't as the constant demands of my job distract me from thoughts of dilating aortas. I remember travelling on business straight after discovery and I panicked every time the plane hit turbulance as I was convinced the stress would make me dissectsad The reality is that my sister who does not work and has what appears to be a much less stressful lifestyle had a fast growing anuerysm whilst mine seems to be growing slower. I have always been slim, fit and do lots of yoga and my increased focus on health is making me feel even better and gives me confidence for the future. It does seem to be a bit of a lottery (I also have 3 brothers who are unfit, overweight but thankfully, no aneurysms). I see myself as lucky to know about it and have the luxury of monitoring. There must be hundreds of thousands of people out there totally unaware and I am glad not to be one of them. Let's keep in touch. neutral     

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      Hi, Mary Rose. I love your name.

      Sounds like you're taking it a day at a time and that's great.

      I'm interested in yoga as I've never been able to relax. Perhaps I'll take a class soon.

      Our jobs can be a good distraction. 😉

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      Thanks Ann. I highly recommend yoga. I have researched this a lot and took my blood pressure after each pose to see the effect they had on me. Even inversions such as head or shoulder stands seemed to calm me down. I do avoid some advanced poses which make me strain and that goes for any sport or physical activity. I am now careful not to lift anything too heavy and will ask for help if travelling with a heavy suitcase. My next measure will be done via an MRI and I am waiting to get a date for it. Will keep you posted. All the best. 
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