1. < Aortic Aneurysms

Newly diagnosed and/or living with ascending aortic aneurysm…anxiety

Posted by ginnycake @ginnycake, Apr 11, 2023

How do you guys cope with the knowledge? My 4.2 CM ascending aortic aneurysm showed up incidentally on a CT scan for a back sprain.
I haven’t had follow up as I write this. It is scheduled for the 11th with my primary care Dr. Will I get another scan of my chest to confirm it???I live in Hawaii… fearful of it not being taken seriously and having spiked high blood pressure from Stress and anxiety cause more damage. I would appreciate your insights… thank you in advance.

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moonboy | @moonboy | Jul 2 3:46pm
In reply to @ronnie4685 "Hi i also was diagnosed with a 5.0cm aortic root aneurism by accident a physical they..." + (show)
@ronnie4685

Hi i also was diagnosed with a 5.0cm aortic root aneurism by accident a physical they also said they will watch it every 6 months but most stuff on google say surgery at 5.0 so I’m also scared
Did u have surgery yet?

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I had two open heart surgery to repair a sudden Type A1 ascending aortic arch dissection. It's a nightmare and you're very unlikely to survive it if you have a complete dissection. Coma, stroke, disaster, repeat. So, if your doctor is telling you to have surgery, get a second opinion (immediately) and then have the surgery. If you're afraid of surgery, don't be. It's a far easier than trying to survive an aorta blowing out and bleeding to death inside your chest cavity. In the time it takes to get an ambulance to your location (who can frankly do nothing to help the blood loss you are experiencing inside your chest) you can easily bleed to death.

You aorta is a little larger than a garden hose. If you saw a huge bulge in your garden hose, you would turn off of the water and replace the hose. That's what an aortic aneurysm is like. I survived mine, but only because I was in San Diego near a huge cardiac surgical center (UCSD La Jolla), paramedics arrived to my hotel quickly (2.5 minute response in Old Town San Diego at 1:30 a.m. on a quiet Sunday night), I had the Chief of Thoracic Surgery n call with 40 years experience (Dr. Anthony Perricone) and I was lucky as lucky can get. I ignored my high blood pressure and thought aneurysms were only in the movies.

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berniemacc70 | @berniemacc70 | Jul 4 11:06pm
In reply to @larak "No. My December scan showed me holding steady at 5 cm. My surgeon is kind of..." + (show)
@larak

No. My December scan showed me holding steady at 5 cm. My surgeon is kind of old-school. He still goes by the 5.5 cm. It may be in part that my aortic aneurysm genetic panel came back without connective tissue disorder variants they commonly look for. I also quit smoking years ago and am female and 54 years old. I think he thinks that I'm an unlikely candidate for dissection or rupture.

I hope he's right. I would prefer to wait until the FDA approves new stent technology for this area of the aorta. They are close. The procedure has been done for years on high risk patients who would not survive open-heart surgery with the bypass. Results have not been great, but these have been the highest risk patients.

I'm trying to get my autoimmune disease officially diagnosed. It looks like Behcet's. I have the dilated pulmonary artery going on, too. Rheumatology (at Brigham & Women's and Beth Israel) has been a nightmare to deal with, though.

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Hi mine is 5.1 or 5.0 and my doctor says it in the watchful waiting period that easy for him to say he doesn't have a bomb in his chest lol yeah I'm scared but I'm putting it in God's hands and I know it will be ok but I've had 11 cat scans done in over two years and they says it's been about the same 5.2 5.0 and 5.1 since I'm a bigger guy my thoracic surgeon doesn't want to operate until it's 5.5 but I'm still scared full of anxiety how do people cope with it

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2 replies
tripleaaa | @tripleaaa | Jul 5 9:38am
In reply to @berniemacc70 "Hi mine is 5.1 or 5.0 and my doctor says it in the watchful waiting period..." + (show)
@berniemacc70

Hi mine is 5.1 or 5.0 and my doctor says it in the watchful waiting period that easy for him to say he doesn't have a bomb in his chest lol yeah I'm scared but I'm putting it in God's hands and I know it will be ok but I've had 11 cat scans done in over two years and they says it's been about the same 5.2 5.0 and 5.1 since I'm a bigger guy my thoracic surgeon doesn't want to operate until it's 5.5 but I'm still scared full of anxiety how do people cope with it

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Mine was a 6.0 in March. I had emergency Abdominal AA surgery in February (They found 3 when I went in for pack pain). I think they are waiting for me to heal. Next scan is September. I take my meds and do lots of walking and breathing. My BP was still all over the map even after slimming down and eating healthy. I finally went on anti-anxiety meds a few weeks ago just so I could work and stay flat. It has made a huge difference. Not planning to stay on the meds forever but needed something more so I could function during this time. My surgeon saved my life once already so I trust him when he says I’m doing great and let’s talk in September.

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Lara K | @larak | Jul 14 8:16am
In reply to @berniemacc70 "Hi mine is 5.1 or 5.0 and my doctor says it in the watchful waiting period..." + (show)
@berniemacc70

Hi mine is 5.1 or 5.0 and my doctor says it in the watchful waiting period that easy for him to say he doesn't have a bomb in his chest lol yeah I'm scared but I'm putting it in God's hands and I know it will be ok but I've had 11 cat scans done in over two years and they says it's been about the same 5.2 5.0 and 5.1 since I'm a bigger guy my thoracic surgeon doesn't want to operate until it's 5.5 but I'm still scared full of anxiety how do people cope with it

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The thing I have the hardest time with is that no one seems to care about the Why? What caused the aneurysm? Is that other condition that caused the aneurysm just going to kill me some other way?

I have other signs of either pulmonary artery hypertension or heart failure, and nothing is being investigated.

It's insane to me.

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pamela78 | @pamela78 | Jul 15 7:09am
In reply to @andytheman "I’m surprised that all of you seem to have a “let it be” attitude. I recently..." + (show)
@andytheman

I’m surprised that all of you seem to have a “let it be” attitude. I recently had a cat scan for my artificial mechanical aortic heart valve and a 3cm aneurysm showed up in my abdomen by using contrast dye.

I was at one hospital ER for something unrelated when the usually normal CT scan came back revealing the aneurysm in my aortic artery near the celiac vessel.

The doctor came back to the exam room and said “we are going to have you transferred to a trauma hospital for emergency surgery”. I asked why and he said I had that confirmed aneurysm “but it has a tear in it” . I said ok and off I went.

When I was examined at the trauma hospital. Their cardiovascular surgeon said “you’re going to have to come back to the hospital but right now it isn’t bleeding so the team feels you’re stable enough to be discharged”. Then he said that I should see my own cardiovascular surgeon ASAP.

I made a phone call to my surgeon and asked to be seen as instructed by the trauma hospital’s ASAP instruction but he said All hospitals say ASAP and laughed.
I told him that I needed to see him soon. He said that tomorow would be fine but “you know we have an appointment in 2 months”

I said it’s important for me to see you sooner and the office made an appointment for me the next day. When I arrived there I was greeted by a smug secretary. “You need to wear a mask and pointed to a mask holder near the door.

I sat in the lobby by myself as nobody but me was there Finally his radiologist came to get me and he did a sonogram or cardiogram ( I’m not sure).
After he was done he showed me to an exam room. He started talking to me like I was bothering him and he was clearly annoyed with me and he took it lightly and was in a rush.

He said “I didn’t find anything
( but 2 other cardiovascular surgeons did??) as he was rushing out the door I said “could it burst?” He turned around and said as a matter of fact it could but we have ways of treating that” (when?) “while I lay on the grass after jogging?”
People would think that I’m having a heart attack when I wasn’t. A burst aneurysm is usually fatal isn’t it? Anyway he just said “it could” and was taking it lightly before he closed the door.

Staff person came to take me out of the exam room and pointed to the way out to the secretary (who was still rude).
He said “ see you next year!” I know he had to get back to seeing other patients who had appointments but he basicallly blew me off.

I knew it was only 3cm but it’s torn! Now. I’m thinking of getting another opinion. What should I do?

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Get another opinion. Now.

REPLY
mdw100 | @mdw100 | Jul 15 7:56am
In reply to @andytheman "I’m surprised that all of you seem to have a “let it be” attitude. I recently..." + (show)
@andytheman

I’m surprised that all of you seem to have a “let it be” attitude. I recently had a cat scan for my artificial mechanical aortic heart valve and a 3cm aneurysm showed up in my abdomen by using contrast dye.

I was at one hospital ER for something unrelated when the usually normal CT scan came back revealing the aneurysm in my aortic artery near the celiac vessel.

The doctor came back to the exam room and said “we are going to have you transferred to a trauma hospital for emergency surgery”. I asked why and he said I had that confirmed aneurysm “but it has a tear in it” . I said ok and off I went.

When I was examined at the trauma hospital. Their cardiovascular surgeon said “you’re going to have to come back to the hospital but right now it isn’t bleeding so the team feels you’re stable enough to be discharged”. Then he said that I should see my own cardiovascular surgeon ASAP.

I made a phone call to my surgeon and asked to be seen as instructed by the trauma hospital’s ASAP instruction but he said All hospitals say ASAP and laughed.
I told him that I needed to see him soon. He said that tomorow would be fine but “you know we have an appointment in 2 months”

I said it’s important for me to see you sooner and the office made an appointment for me the next day. When I arrived there I was greeted by a smug secretary. “You need to wear a mask and pointed to a mask holder near the door.

I sat in the lobby by myself as nobody but me was there Finally his radiologist came to get me and he did a sonogram or cardiogram ( I’m not sure).
After he was done he showed me to an exam room. He started talking to me like I was bothering him and he was clearly annoyed with me and he took it lightly and was in a rush.

He said “I didn’t find anything
( but 2 other cardiovascular surgeons did??) as he was rushing out the door I said “could it burst?” He turned around and said as a matter of fact it could but we have ways of treating that” (when?) “while I lay on the grass after jogging?”
People would think that I’m having a heart attack when I wasn’t. A burst aneurysm is usually fatal isn’t it? Anyway he just said “it could” and was taking it lightly before he closed the door.

Staff person came to take me out of the exam room and pointed to the way out to the secretary (who was still rude).
He said “ see you next year!” I know he had to get back to seeing other patients who had appointments but he basicallly blew me off.

I knew it was only 3cm but it’s torn! Now. I’m thinking of getting another opinion. What should I do?

Jump to this post

So sorry to hear about that and how they treated you! You definitely do need to find another venue for treatment, but meanwhile, take a deep breath. Try to calm yourself because 3cm is a very small tear. It will do more harm to you too, for you to get into a panic mood. Appeal to your head and think. Do research, read a lot and seek a new dr. Meanwhile eat healthy, continue to do daily routine, trust that God has this in control. You are going to be ok; you got this. Will pray for great resolution for you.🥰🙏🏼

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1 reply
andytheman | @andytheman | Jul 15 9:04am
In reply to @mdw100 "So sorry to hear about that and how they treated you! You definitely do need to..." + (show)
@mdw100

So sorry to hear about that and how they treated you! You definitely do need to find another venue for treatment, but meanwhile, take a deep breath. Try to calm yourself because 3cm is a very small tear. It will do more harm to you too, for you to get into a panic mood. Appeal to your head and think. Do research, read a lot and seek a new dr. Meanwhile eat healthy, continue to do daily routine, trust that God has this in control. You are going to be ok; you got this. Will pray for great resolution for you.🥰🙏🏼

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Thank You for the response. I went back to a cardiovascular surgeon and he said that according to my past doctor and my new cardiovascular surgeon he said that my aneurysm was 1.7 ten years ago and it’s still at 1.7 so nothing is needed. He will check on the tear and see if it’s still small.
So he said that he would see me next year. That was it. Nothing to worry about

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summer230 | @summer230 | Jul 15 11:45am

@ginnycake I've just discovered I have a 4.3 cm ascending aortic aneurysm today and glad I found this group. Like you i am a bit anxious about this find. I initially went in for a CT scan for my heart to see if there is any calcification which was zero. But they found 2mm pulmonary nodule and this 4.3 ascending aneurysm. I'm curious about how you feel today and what have you been doing and if it has grown? I see the last post was in April 2023. Thanks for your help.

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david63 | @david63 | Jul 15 11:59am

My ascending aortic aneurysm is 4.8. I am coming up on my 6 month CT scan. I have not been able to do the things I once used to and it is aggrevating, but I want to live longer, so I follow dr orders. I, too, am no push, pull, or lift anymore than 10# at this point. I have other health issues to the point I am pretty sedentary at 61 yo. A heart surgeon said they don't necessarily do surgery until 5.8-6 measurement of the anorysm. At that time, it is cut the ribs and go in. Seems like in 2024, we should have some other way to treat and cure, rather than open heart surgery with the technologies we have. Thoughts? Comments?

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2 replies
moonboy | @moonboy | Jul 15 12:18pm

An aortic dissection is a serious condition where the inner layer of the aorta tears, causing blood to flow between the layers of the wall of the aorta and forcing the layers apart. This condition requires immediate attention, particularly when it occurs in the ascending aorta, which is the section of the aorta that rises from the heart.

Here is a detailed explanation of why open heart surgery is necessary for repairing an ascending aortic dissection:

Explanation for Open Heart Surgery in Repairing an Ascending Aortic Aneurysm
**1. Complexity and Severity of the Condition

Critical Location: The ascending aorta is a crucial part of the heart’s anatomy. It is close to the heart and the aortic valve, and any complications in this area can affect the entire circulatory system.
High Risk of Rupture: The ascending aorta is under significant pressure due to its proximity to the heart. If a dissection occurs here, the risk of rupture is extremely high, which can be life-threatening.
**2. Need for Direct Visualization and Control

Direct Access: Open heart surgery allows surgeons to have direct access to the aorta and the heart, providing a clear view of the affected area.
Precise Repair: The surgeon can precisely repair the tear in the aorta, ensuring that the new lining is secure and the blood flow is restored properly.
**3. Comprehensive Repair

Grafting: During open heart surgery, a synthetic graft can be used to replace the damaged section of the aorta. This graft reinforces the aorta, preventing further dissection and reducing the risk of future complications.
Valve Involvement: Sometimes, an aortic dissection can affect the aortic valve. Open heart surgery allows for the repair or replacement of the aortic valve if necessary.
**4. Immediate Management of Complications

Controlling Bleeding: Open heart surgery provides the best opportunity to control any bleeding that might occur during the repair of the dissection.
Cardiopulmonary Bypass: The use of a heart-lung machine during open heart surgery helps maintain circulation and oxygenation while the heart is stopped, allowing for a controlled and safe environment for the repair.
**5. Long-term Outcomes

Durability: The repairs made during open heart surgery are generally more durable and have better long-term outcomes compared to less invasive methods.
Comprehensive Treatment: This method ensures that any potential issues that could arise in the future are addressed during the surgery, reducing the need for additional procedures.
Less Invasive Methods: Limitations
While less invasive methods, such as endovascular repair, are effective for some conditions of the aorta, they are not suitable for an ascending aortic dissection due to:

Limited Access: These methods do not provide the same level of access and visibility to the ascending aorta as open heart surgery does.
Complex Anatomy: The complex anatomy of the ascending aorta and its proximity to the heart make it difficult to achieve a reliable and durable repair with less invasive techniques.
Higher Risk of Complications: Less invasive methods have a higher risk of complications in this area due to the high pressure and dynamic movement of the ascending aorta.
Conclusion
In summary, open heart surgery is necessary for repairing an ascending aortic dissection due to the complexity and severity of the condition, the need for direct visualization and control, the ability to perform a comprehensive and precise repair, the immediate management of complications, and the better long-term outcomes. While less invasive methods have their place, they are not suitable for this critical and high-risk area of the heart.

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