Aortic Aneurysms – Introduce yourself & meet others

Posted by Kanaaz Pereira, Connect Moderator @kanaazpereira, Feb 16, 2018

Welcome to the Aortic Aneurysms group on Mayo Clinic Connect.

An aortic aneurysm is a bulge in the wall of the aorta. The aorta begins deep in the heart as it emerges from the powerful left ventricle, gently arching over the heart, descending into the chest, and finally into the abdomen. Some aortic aneurysms can be harmless; others can lead to catastrophic problems. I invite you to follow this group and connect with others, share experiences, exchange useful information, and learn about aortic aneurysms.

Get started rby clicking the +FOLLOW icon on the group page here: https://connect.mayoclinic.org/group/aneurysms/

There are some great conversations going on right now that I think you’ll like. Grab a cup of tea, or beverage of your choice, and lets chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

tinadooks | @tinadooks | Apr 30 4:20pm

In reply to @beverly48 "I see a cardiothoracic surgeon at DUKE at Durham, NC. He came highly recommended by my..." + (show)

@beverly48 Hi, I’m Sandy and I also am being followed by Dr. Hughes for my TAAA of 4.2. I also take comfort in his reputation despite the ongoing anxiety that many have expressed about this condition.

Justin McClanahan, Moderator | @JustinMcClanahan | May 7 8:29am

This week's member spotlight features a member of the Sarcoma support group who many of you have crossed paths with. Learn more about @ctflyr his thirst to learn every day, sharing each moment with his life partner and making life an adventure🙂

Life is an adventure: Meet @ctflyr https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/life-is-an-adventure-meet-ctflyr/

Check out all the Member Spotlights here and follow the About Connect blog for future update: https://connect.mayoclinic.org/page/about-connect/

jungpeter | @jungpeter | May 19 6:50am

Bicuspid aortic valve with considerable stenosis. Aorta has been increasing in size for the past several years. 4 cm was the magic number. MRI showed 4.3 in November 26. Surgery in February. Overall surgery went well. There was some uncontrolled bleeding during surgery. Post-Op pain has been negligible. They did twist and pull my left shoulder on the operating table and that pain is going away slowly. Rehab three days a week I’ve got about a month and a half to go. Back up to mowing the lawn, carrying things, sleeping in, eating well. My appetite the day I was discharged was incredible. Everything looked good. I couldn’t get enough food. Overall attitude has been good. I try not to think about what was done. It makes me nervous if I go down that rabbit hole.

sandra66 | @sandra66 | May 25 9:27am

Hi, I am so glad I have found this group - thank you for creating it, I have recently been diagnosed with a TAA 4.7/8 and 4.3 at the root, still undergoing investigations, was a shock diagnosis and spun my head a bit
the NHS have been poor so I paid for a private appointment with a cardiologist who is going to start me on betablockers & request an MRI scan
any thoughts, help and advice is much appreciated, btw I am 57yo
Sandra

eervin | @eervin | May 25 11:54pm

In reply to @breick "Hi everyone, I am a retired science/health teacher, age 69, female, 5'11, 225#. I was diagnosed..." + (show)

@breick

Hi everyone,
I am a retired science/health teacher, age 69, female, 5'11, 225#.

I was diagnosed with a 4.6cm ascending aortic aneurysm in 2016 and have been monitoring it yearly since then. (It is interesting how the measurement can vary by facility/equipment/radiologist. I have been measured as low as 4.3 and as high as 5.3.) I went to the Mayo Clinic in Rochester in October and met with a cardiologist in their Aortic Clinic. After all the tests, the latest measurement is 5.3 at the root and 4.2 ascending. My aortic valve has moderate regurgitation, most likely from the dilated aortic root pulling on it. This alone is probably not enough for surgery. But, I also have 8 points on the Ghent scale for Marfan Syndrome, even though I don't have a known genetic mutation for Marfan. There is a familial link as my brother had a similar aortic graft, then TAVR in TAVR, and pacemaker. All these things together make me a candidate for surgery at this time.

My surgery is scheduled for April at the Mayo Clinic. The plan is to replace the aortic valve with a tissue valve and a Dacron graft from the root up to the arch. I am comfortable with the idea of surgery, especially when the alternative might be a possible dissection. I know it is better to do this at age 69 rather than 5 or 10 years from now. I am somewhat concerned about the recovery: cardiopulmonary bypass dementia, sternotomy pain, movement in daily life with a sternotomy, recovery time, etc. (I'm one of those people who needs to be prepared for anything, and if it doesn't happen, great.)

My local cardiologists added Amlodipine and increased my Metoprolol prior to the upcoming surgery.
So, for the next 75 days, I will be learning as much as I can, losing weight, walking, and managing stress. The stress part is hard as I am also helping to care for my Mom (91) and Dad (96) who have health issues.

Five generations of my family have been Mayo patients. I know the expertise and care there are world-class.

Any information and advice are welcome. Thank you.

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@breick praying for a successful surgery and speedy recovery so that can return to your life and care for your parents, but in the meantime you have to take care of you. Wishing you the BEST on this courageous journey.

ctflyr | @ctflyr | May 26 3:05pm

In reply to @sandra66 "Hi, I am so glad I have found this group - thank you for creating it,..." + (show)

@sandra66 Hello....depending on your age, body type, overall condition, blood pressure, cardiac condition, and activity level, you hopefully have access to a cardiologist that has experience with aortic aneurysm patients. The various criteria mentioned will govern your treatment and follow-up. Also, you might consider a consultation with a cardio-thoracic surgeon with an aneurysm specialty. The knowledge and experience level of your doctors relative to your aneurysm, and your own involvement in managing your health is key to your success with this health challenge. Best wishes for your success!!

sandra66 | @sandra66 | May 28 11:36am

Hello, thank you for your reply 🙂

breick | @breick | May 31 8:25am

In reply to @eervin "@breick praying for a successful surgery and speedy recovery so that can return to your life..." + (show)

@eervin I had my surgery on 4/10 and it was more involved than expected. I also suffered a small stroke from DHCA and being on the heart-lung machine. It caused some visual problems. I did go to a skilled nursing facility for 20 days after my hospital stay. I'm home now and recovering well. I'm in a cardiac rehab program 3 days a week. My biggest complaint is being tired all the time. I'm not sure if it's from the surgery or the meds.

joanp57 | @joanp57 | Jun 1 6:58am

In reply to @breick "@eervin I had my surgery on 4/10 and it was more involved than expected. I also..." + (show)

@breick I Was terribly tired for at least 3 months, taking naps whenever I felt the need. Your body if healing from a very traumatic event

mitchs | @mitchs | Jun 2 10:33am

I'm Mitch. I was diagnosed in April with a congenital bicuspid valve and a thoracic aortic aneurysm measuring 4.7 cm. Does anyone have suggestions for getting good counseling for dealing with this condition? I prefer the option for in-person visits. I would like a counselor who is knowledgeable about the condition. That is proving difficult in the Tidewater Southside.

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