Aortic Aneurysms – Introduce yourself & meet others

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. You can get started right away by clicking the +FOLLOW icon on the group landing page.

I’m Kanaaz (@kanaazpereira), and I’m the moderator of this group. When you join, you’ll also likely be welcomed by volunteer patient Mentors and fellow members. Learn more about Moderators and Mentors on Connect.

We’ve got 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?

@amybeth7367

My husband has his aortic aneurysm repaired and aortic valve replaced last summer after 2 years of watch and wait. When he was diagnosed, neither of us had ever heard or, or knew anything about aortic aneurysms.
We've since started Rock From The Heart to raise awareness of aortic disease and are planning an event in Minnesota – Feb 9 2019!
Our goal is to connect with others around the country, sharing experiences and hopefully saving lives along the way.

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Rochester is a very user friendly town. Caters to patient needs. Mayo is awesome to work with. They are great at juggling appointments to help out the out of town patients. Mayo has been #1 in Cardiac for many years.

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Hi to All ! I am new to this group and am very interested to all of the posts. In late 2015 an aneurysm was accidentally found that was 3.5 and last month a CT showed it to be 4.8. I am trying to decide what kind of Dr.to go to. I also may consider Mayo in Florida. I have seen good recommendations for Mayo in MN.
I have diabetes and autoimmune thyroid disease., controlled with meds. Am presently and for the past 3 yrs have been dealing with back issues. I have had all the injections, nerves burned, surgery and the pain will not go away.I am not able to exercise any more. I feel that most of my issues were caused due to the back issue as I was very active and a 3 mile a day walker. Right now, I am a hot mess. Any advice would be appreciated. Thanks

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@kanaazpereira

Hi @DiannaTV @cynaburst @lynnkay1956 @jessicalatessa @HeartPatches @abster93 @elsinann @wangs @mariejnd @jend @teatime @jimmorris900 @glenys123 @mlan68 @janetpomponio @laverne @hopeful33250 @predictable @johnbishop @morningglory @thankful @ch246cf10 @ssams @kdh1 @playsdixie @mamamae @bobireland @trish602 @clevelandme @michellr @aldona @jbsb93 @axels @crhp194 @shakuni11 @janean @grandmajan @morgan44 @smithjss @srlove @jimmorgan @noram @aqs1 @pbr420 @lisaannhicks @redskin39 @hermthor @acara @worry,

I’d like to invite you to the new group dedicated to discussions about aneurysm conditions such as aortic aneurysm, aortic dissection, abdominal aortic aneurysm, abdominal aortic branch occlusion, aortic branch aneurysm, aortitis, thoracic aortic aneurysm, and more.
It’s a space where we can ask questions, share tips and learn about aortic aneurysms from each other. Please drop a note to say hi and introduce yourself.

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I have a question about after the AAA surgery, I had my first and only check one month after my surgery the Dr. Said. See you in 5 years . is this the normal amount of time between visits . in the repair he had to remove the aneurysm and sew up the open part of the aorta. Could the thread or material used break over time? Anyone that has had a AAA please let me know how. Often you saw the Dr. after surgery. Thank you kdh1

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Hello,
I had my Aortic Aneurysm repaired in 2005. Had follow-ups with the surgeon many times in the first year. Then I would do a CT every year. After that it was just follow-up with Cardiologist. I am going to assume you the Surgeon and Cardiologist are two different Doctors as was in my case. You should see your Cardiologist and set up a check-up plan that you are comfortable with. I had my Aortic Valve replaced this January. Had 2 follow ups with the Surgeon and shook hands. Just last month had my 6 month post-op follow up with Cardiologist. I'll see them again in 6 months. My Family (Primary Care) Doctor monitors my Blood Pressure, giving updates to the Cardiologist, I'm good with this. Hope this gives you some ideas.

All the best.

Bruce
Texas

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@ch246cf10

Hello,
I had my Aortic Aneurysm repaired in 2005. Had follow-ups with the surgeon many times in the first year. Then I would do a CT every year. After that it was just follow-up with Cardiologist. I am going to assume you the Surgeon and Cardiologist are two different Doctors as was in my case. You should see your Cardiologist and set up a check-up plan that you are comfortable with. I had my Aortic Valve replaced this January. Had 2 follow ups with the Surgeon and shook hands. Just last month had my 6 month post-op follow up with Cardiologist. I'll see them again in 6 months. My Family (Primary Care) Doctor monitors my Blood Pressure, giving updates to the Cardiologist, I'm good with this. Hope this gives you some ideas.

All the best.

Bruce
Texas

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Thank you so much for this information. I will call my vascular surgeons office tomorrow. I know I will be less anixious about it if he gives me the reason why he didn't want to see me more. Now that I know someone else who had this done sees there surgeon I won't feel like I'm whining when I ask about it. Thanks again.

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Thanks for addressing this specialty. I had a dicecting aneurism 22 years ago. It healed without an operation. But I lost half of the intestines and one kidney and almost did not make it. Had a very good doctor to put it all back together. The aneurism is close to the heart in a difficult position. It is 6.1 cm by now and high
risk to operate on. I have no symptoms, and as long as it stays this way and it is being checked every 3 to 6 month I should be ok for a while. Will see two cardiologists next week. See what the outcome is. When the time comes I have to go to one of the hospitals that is able to perform this operation.
Cedars is 3 hours to drive for me or Mayo Scottsdale 4 hours. Is there anybody in a similar predicament?

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Hi, i was in a car accident in april this year, they found a 4.5 thoracic aortic aneurysm during tests, i am female and 53 years young, im not happy with the cardiovascular doctor i have here, i ask questions but vague answers, just wanting to talk with others with this situation

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@charmine1965

Hi, i was in a car accident in april this year, they found a 4.5 thoracic aortic aneurysm during tests, i am female and 53 years young, im not happy with the cardiovascular doctor i have here, i ask questions but vague answers, just wanting to talk with others with this situation

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Hello,
Sounds like the car accident may have saved your life indirectly. Ask more questions of your current Cardiologist. I'm going to guess they screened you in an ER and the Cardiologist is one that was there at the hospital, not one you selected. My Family Doctor referred me to my Cardiologist. He is great. And it took two of them to get one I am happy with. Talk to your Family Doctor and tell him of your diagnosis and ask for a referral. Maybe get a couple of referrals and select the one best for you. Nice thing is your the Cardiologist you select can copy your Family Doctor on test and visit results and have a better idea of your total health.

All the best.

Bruce
Texas

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I went to a Surgeon today about my dilated aneurysm. He blew it off and said radiographer calls anything over 3cm a dilation and mine is 3.4.. my concern is it’s new. This was just check last month and it was in normal range. I was still hurting in they checked again in found it had dilated there.
He had no answer for why it had changed.

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@charmine1965

Hi, i was in a car accident in april this year, they found a 4.5 thoracic aortic aneurysm during tests, i am female and 53 years young, im not happy with the cardiovascular doctor i have here, i ask questions but vague answers, just wanting to talk with others with this situation

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Usually, the surgery won’t be scheduled until aneurysm is 5. This is because of the surgical risks and I think Medicare and other insurance companies won’t pay until then. In the meantime, don’t worry about it but have it checked. Mayo checks on mine yearly with either a CT or an MRI. Best to you!

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Hello everyone! As you can all guess, I just received a diagnosis of an ascending aortic aneurysm (5.3cm) this past Friday and have been feeling pretty discouraged ever since. I am 47y old and a busy mother of 4. No obvious symptoms until a fainting episode about a month ago prompted me to seek the consult with my GP.
EKG and nuclear stress tests did not show any abnormalities but the echocardiogram results came back with the news of the aneurysm of 5cm. I ended up st the ER yesterday as I was once again experiencing the same sensations that preceded my syncope. Had the CAT scan done and it showed the aneurysm at 5.3cm. My blood pressure was way higher than I ever had, in fact I used to be more if s low blood pressure person.
I am seeing thoracic surgeon at Regions in Saint Paul and hoping to find out more what’s the next step. Needless to say, I spent hours following the diagnosis trying to educate myself. Most of the available data and research relates to older age groups and so I am hoping to find some further information and feedback from the community
here and perhaps younger patients as well. It is a very scary feeling to know that at any time things might go wrong and I am terribly worried about my family. Thank you all for having this forum and for any advice you might offer. All and any will be greatly appreciated…

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Hello,
You are relatively young which will help you recover quicker. This is really key. Had my Aortic Aneurysm repaired at age 39. I had no symptoms. They found it when doing a routine chest x-ray for an annual physical. Mine was about the same size as yours when I was operated on. It was growing at a rate of 2.0 cm per year. I had a prior heart surgery(at age 13) so there were some scar tissue complications but you won't have that if this is your first (Lets hope only) chest opening. When they read my x-rays I felt it was unusual they were sending me straight to a Surgeon instead of a Cardiologist(I didn't have a Cardiologist at the time). But there isn't much the Cardiologist could have done. I was really needing a Surgeon. I understand now why this was done. Get yourself a Cardiologist you will need them to check in on you after surgery. Otherwise the Hospital will probably assign one to you while you are in the hospital. Which is OK too. But you probably want to pick one yourself. Mine came a few times when I had Aortic Valve Surgery(Yup, my third surgery) this past January. Made the difference and I was out in 5 days. Hope some of this helps. You are fortunate to be in the younger age bracket as the surgery is very invasive and tough on the body(I know, I've had it twice). I'll be looking for your posts over time and would like to know how well you recover from the procedure. Keep your chin up.

All the best to you.

Bruce
Texas

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@ch246cf10

Hello,
You are relatively young which will help you recover quicker. This is really key. Had my Aortic Aneurysm repaired at age 39. I had no symptoms. They found it when doing a routine chest x-ray for an annual physical. Mine was about the same size as yours when I was operated on. It was growing at a rate of 2.0 cm per year. I had a prior heart surgery(at age 13) so there were some scar tissue complications but you won't have that if this is your first (Lets hope only) chest opening. When they read my x-rays I felt it was unusual they were sending me straight to a Surgeon instead of a Cardiologist(I didn't have a Cardiologist at the time). But there isn't much the Cardiologist could have done. I was really needing a Surgeon. I understand now why this was done. Get yourself a Cardiologist you will need them to check in on you after surgery. Otherwise the Hospital will probably assign one to you while you are in the hospital. Which is OK too. But you probably want to pick one yourself. Mine came a few times when I had Aortic Valve Surgery(Yup, my third surgery) this past January. Made the difference and I was out in 5 days. Hope some of this helps. You are fortunate to be in the younger age bracket as the surgery is very invasive and tough on the body(I know, I've had it twice). I'll be looking for your posts over time and would like to know how well you recover from the procedure. Keep your chin up.

All the best to you.

Bruce
Texas

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Bruce,
I was about to log off and saw your kind message! I hope you can imagine how incredibly comforting it is to hear from someone and learn about their first hand experience rather than sifting through medical journals and research.
I thank you for taking the time to reply from the bottom of my heart!
I understand that one’s road to recovery and health might differ from person to person but it still feels good to know that you were able to endure the surgeries and it gives me hope for my own case.
Strangely enough, I am not very scared for myself, been always thinking better with a bang than…but it’s my family’s well-being that weights very heavily on me.. all I need is to a few more years for my kids to be emotionally able to face and recover from the trauma. Sounds very dramatic but it’s all I care about..
I will definitely post any further developments. I am so relieved to know there are people out there willing to support and share with one another as we navigate the scary unknown.
Again, many thanks for your response!
Ilona

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@ch246cf10

Hello,
I had my Aortic Aneurysm repaired in 2005. Had follow-ups with the surgeon many times in the first year. Then I would do a CT every year. After that it was just follow-up with Cardiologist. I am going to assume you the Surgeon and Cardiologist are two different Doctors as was in my case. You should see your Cardiologist and set up a check-up plan that you are comfortable with. I had my Aortic Valve replaced this January. Had 2 follow ups with the Surgeon and shook hands. Just last month had my 6 month post-op follow up with Cardiologist. I'll see them again in 6 months. My Family (Primary Care) Doctor monitors my Blood Pressure, giving updates to the Cardiologist, I'm good with this. Hope this gives you some ideas.

All the best.

Bruce
Texas

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Thanks Bruce, i am in the process of getting a referral to mayo clinic. Hoping to just find a good cardiac doctor there,and continue there.

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@azzurro1999

Hello everyone! As you can all guess, I just received a diagnosis of an ascending aortic aneurysm (5.3cm) this past Friday and have been feeling pretty discouraged ever since. I am 47y old and a busy mother of 4. No obvious symptoms until a fainting episode about a month ago prompted me to seek the consult with my GP.
EKG and nuclear stress tests did not show any abnormalities but the echocardiogram results came back with the news of the aneurysm of 5cm. I ended up st the ER yesterday as I was once again experiencing the same sensations that preceded my syncope. Had the CAT scan done and it showed the aneurysm at 5.3cm. My blood pressure was way higher than I ever had, in fact I used to be more if s low blood pressure person.
I am seeing thoracic surgeon at Regions in Saint Paul and hoping to find out more what’s the next step. Needless to say, I spent hours following the diagnosis trying to educate myself. Most of the available data and research relates to older age groups and so I am hoping to find some further information and feedback from the community
here and perhaps younger patients as well. It is a very scary feeling to know that at any time things might go wrong and I am terribly worried about my family. Thank you all for having this forum and for any advice you might offer. All and any will be greatly appreciated…

Jump to this post

Azzurro1999,
Hello! Just under 6 years ago, I was diagnosed with an ascending aortic aneurysm. I was 48 at the time. I was not aware that I had a problem until I just collapsed one day. I worked full time and was very active. I thought everything was fine! Little did I know….

This surgery is a very serious surgery. If you are happy with the surgeon at Regions, that’s great. I would highly recommend that anybody about to have surgery, especially such a complex surgery, should find the best doctor that their insurance will cover.

The surgery is definitely survivable, as per all the post surgery people conversing on this site. The recovery is painful but will gradually get better. You will be in ICU for several days before you are moved to another wing. The nurses will fuss over you (this is good). You’ll be turned from one side to another to prevent bed sores. Moving around in bed will really hurt. The doctor will want you up and sitting, then walking, within a couple days of surgery. You’ll be thinking “are they kidding me, I hurt” but you’ll do it anyway. While in ICU, you’ll be “eating” a lot of broth and drinking liquids. You will be amazed at the number of drainage tubes sticking out of your chest and abdomen post surgery. Dressing changes will be frequent. You’ll learn to love the catheter and bed pan ( ha ha). Sleeping may be a little challenging due to all people coming in and out, especially while in ICU: nurses, phlebotomists, doctors, janitors, nutritionist, heart monitor people, x ray technicians, physical therapists… to name a few.

You may want to consider bringing a few personal items for your comfort: ex. Phone, tablet, favorite toiletries, underwear, slippers.

Consider what type of help you will need at home as well as who will help you at home when you are finally released from the hospital. You won’t be doing a whole lot. Your sternum, heart, aorta and incisions need time to heal. No driving, no cleaning, no cooking, no lifting etc. You may need help showering. A shower stool was a big help.

It is a big surgery. I had two surgeries three months apart for this. Your situation sounds a little more straight forward than mine was. I had unforeseen complications. But here I am 6 years later.

I wish you all the best.

Natalie
So. California

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