Ascending Aortic Dilation - Ascending Aortic Aneurysm

Posted by rory @rory, Apr 2, 2018

I was diagnosed in 2012 with ascending aorta dialation of 4.1 cm. In 2013 no change. Finally went back to dr in 2017 and echo showed 4.3 cm. 2 months later dr made me have a chest scan which read 4.5 cm. which is correct? Echo or scan? Dr wants me to have another in 6 months. Very stressful.

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

@paulj

Hi,
I have a ascending aortic aneurysm that is 5.1 cm. it was diagnosed in June of 2011. I have been told that at this time it will be treated with medications but if it grows to 5.5 cm then a surgery will be performed.Also one doctor says if it moves to 5.3 between ct or mri s then i would be a candidate for surgery. Being a typical guy i feel that if its this close why don t we just fix it! I am typicaly very active and this just seems like were playing with fire.... I know percentages,etc etc but if it bursts I am told I will most likely die before the ambulance arrives or at best a 50 percent rate of survival if i make it to the hospital.
What a crazy way to live.
I am leaving for 5 weeks wandering around Costa Rica with a backpack and my rental car so hopefully all will be fine. I would like to do the Camiino de Santiago 550 mile walk through France and Spain carrying a backpack this fall....but what the hel??,,,l is this safe???? i have been going to the V.A. (Veterans Administration) since I don't have regular health insurance....I just can't afford it...I am told the Mayo Clinic might take on my case as a "pro bono" situation and help me live....
It's such a strange feeling to know you can drop dead at any time due to a particular condition that everybody is aware of but waiting for a Fix that is already there and I believe well proven....If the surgery is available but .2cm is what i need to qualify...wher e are those administrators that determined this 5.3 or 5.5 cm threshold if I am out ther and it bursts?
Well, this was a lot of rambling but maybe theres a Doctor or Mayo clinic or someone out there that can help....
Please pass this on to anyone at mayo Clinic that you think can help..
In the meantime I will continue to take my meds and walk through life as best i can...
I know we are all going to die and it could happen at any time but seems a little strange.
I feel like if my engine on my car was acting strange and i took it in and they said it needs to be rebuilt and it will take care of the problem ..otherwise put this of oil additive in it and drive to New York..you should be fine...oh and if it breaks down in the rockies ...you'll probably never get parts so you wont make it to your daughters wedding on time but probably never.....
so put this can of oil additive in and lets all wish for the best?
Have a great day,,,this was fun to vent...hope somebody else reads this and relates or maybe just gets a good laugh...
(maybe an aortic surgeon over at Mayo Clinic
Paul

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we are pretty much in the same situation, waiting for va. ugh. Good luck to you.

REPLY

Eleven years ago 59 cm of my aorta was replaced. I lost a kidney, have a huge diaphragmatic hernia, COPD, minor things---I'm still here! But now I have a 5.3 cm aneurysm in my heart. And I'm not a candidate for surgery.
Does anyone out there have this condition?

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@dixitworld

Hello All

I am 31/M
I had my bicuspid aortic valve replaced 8 years back with ATS Mechanical 22 Mm valve.
Now I am diagnosed with ascending aorta size of 5.2 and aortic root of 4.4.
I talked to 2 surgeons in diff hospital.
One surgeon says that no need to replace well functioning mechanical valve and will cut root just before the valve and cover the little rim and existing valve with graft.he gives reason if a mechnical valve passes 1 year successfully it typical remain forever and should not be changed. His recommendations is not to touch the place where valve is sewn to root.

Other surgeon is of opinion that when we will open we will be able to see the condition of root and if it need to be replaced we will put new composite graft already fitted with a new St.Jude valve.
He also believe my current valve is 100 percent functioning but as per him existing valve should have some tissues deposited and replacing a new is always better.

What to choose. Both surgeon are top notch surgeon in diff hospitals

Jump to this post

Hello and welcome to Connect, @dixitworld,

I’d like to introduce you to a few members who’ve written about aortic valve repair or replacement, and mechanical valves; please meet @dlruff @ronbee @redhawk @eugeneo @lyndamm @robaz @crhp194 @morningglory @ch246cf10 @tazzy @colleen00 @marnie10 @shakuni11 @judytru.
Connect member @jimmorris900 has written about his experiences with the David procedure (valve-sparing aortic root replacement ), and may have more insights for you.

You may also wish to go through these discussions on Connect:
– Aortic Valve Replacement https://connect.mayoclinic.org/discussion/aortic-valve-replacment/
– Aortic Stenosis & Valve Replacement https://connect.mayoclinic.org/discussion/aortic-valve-calcification/
– Congenital Heart Disease – What Patients Need to Know https://connect.mayoclinic.org/webinar/webinar-topic-challenges-in-adult-congenital-heart-disease-what-the-patient-needs/ In this Video Q&A Mayo Clinic cardiologists address many questions about valve surgery.

@dixitworld, you mentioned having aortic valve replacement when you were twenty three? Wow! May I ask what symptoms or condition led to having this procedure done? What are your thoughts about the decision of replacing the valve again?

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@kanaazpereira

Hello and welcome to Connect, @dixitworld,

I’d like to introduce you to a few members who’ve written about aortic valve repair or replacement, and mechanical valves; please meet @dlruff @ronbee @redhawk @eugeneo @lyndamm @robaz @crhp194 @morningglory @ch246cf10 @tazzy @colleen00 @marnie10 @shakuni11 @judytru.
Connect member @jimmorris900 has written about his experiences with the David procedure (valve-sparing aortic root replacement ), and may have more insights for you.

You may also wish to go through these discussions on Connect:
– Aortic Valve Replacement https://connect.mayoclinic.org/discussion/aortic-valve-replacment/
– Aortic Stenosis & Valve Replacement https://connect.mayoclinic.org/discussion/aortic-valve-calcification/
– Congenital Heart Disease – What Patients Need to Know https://connect.mayoclinic.org/webinar/webinar-topic-challenges-in-adult-congenital-heart-disease-what-the-patient-needs/ In this Video Q&A Mayo Clinic cardiologists address many questions about valve surgery.

@dixitworld, you mentioned having aortic valve replacement when you were twenty three? Wow! May I ask what symptoms or condition led to having this procedure done? What are your thoughts about the decision of replacing the valve again?

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I didnt had any symptoms but doctors told me that my bicuspid valve is creating my left ventricle size increasing and EF going down than 50. I did elective surgery at that time and now within 8 years as back at this stage. Not able to decide who is better of those two surgeons

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@dixitworld

Hello All

I am 31/M
I had my bicuspid aortic valve replaced 8 years back with ATS Mechanical 22 Mm valve.
Now I am diagnosed with ascending aorta size of 5.2 and aortic root of 4.4.
I talked to 2 surgeons in diff hospital.
One surgeon says that no need to replace well functioning mechanical valve and will cut root just before the valve and cover the little rim and existing valve with graft.he gives reason if a mechnical valve passes 1 year successfully it typical remain forever and should not be changed. His recommendations is not to touch the place where valve is sewn to root.

Other surgeon is of opinion that when we will open we will be able to see the condition of root and if it need to be replaced we will put new composite graft already fitted with a new St.Jude valve.
He also believe my current valve is 100 percent functioning but as per him existing valve should have some tissues deposited and replacing a new is always better.

What to choose. Both surgeon are top notch surgeon in diff hospitals

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Guys please anyone had my situation?

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@dixitworld

Hello All

I am 31/M
I had my bicuspid aortic valve replaced 8 years back with ATS Mechanical 22 Mm valve.
Now I am diagnosed with ascending aorta size of 5.2 and aortic root of 4.4.
I talked to 2 surgeons in diff hospital.
One surgeon says that no need to replace well functioning mechanical valve and will cut root just before the valve and cover the little rim and existing valve with graft.he gives reason if a mechnical valve passes 1 year successfully it typical remain forever and should not be changed. His recommendations is not to touch the place where valve is sewn to root.

Other surgeon is of opinion that when we will open we will be able to see the condition of root and if it need to be replaced we will put new composite graft already fitted with a new St.Jude valve.
He also believe my current valve is 100 percent functioning but as per him existing valve should have some tissues deposited and replacing a new is always better.

What to choose. Both surgeon are top notch surgeon in diff hospitals

Jump to this post

Hi @dixitworld,

I can imagine your stress and worry about making the right decision! I'm tagging two of our stalwart Mentors, @hopeful33250 and @predictable as they will perhaps be able to provide some thoughts that might help you.

REPLY
@dixitworld

Hello All

I am 31/M
I had my bicuspid aortic valve replaced 8 years back with ATS Mechanical 22 Mm valve.
Now I am diagnosed with ascending aorta size of 5.2 and aortic root of 4.4.
I talked to 2 surgeons in diff hospital.
One surgeon says that no need to replace well functioning mechanical valve and will cut root just before the valve and cover the little rim and existing valve with graft.he gives reason if a mechnical valve passes 1 year successfully it typical remain forever and should not be changed. His recommendations is not to touch the place where valve is sewn to root.

Other surgeon is of opinion that when we will open we will be able to see the condition of root and if it need to be replaced we will put new composite graft already fitted with a new St.Jude valve.
He also believe my current valve is 100 percent functioning but as per him existing valve should have some tissues deposited and replacing a new is always better.

What to choose. Both surgeon are top notch surgeon in diff hospitals

Jump to this post

@dixitworld

I would first like to welcome you to Mayo Connect and to thank you for posting about your health concern regarding an aortic valve problem.

I understand your concerns, I have an aortic valve (with aortic insufficiency) that some doctors think need replacing, but not all. I could only wish for a concise decision from two doctors so that I could have some confidence on making an informed decision and going forward.

In thinking about your situation I'm wondering how this change in your EF (which you state is now 50) is affecting your symptoms. How are you feeling? What type of symptoms are you having? Has your energy level, ability to exercise, changed since your EF has dropped to 50?

I have one cardiologist who says "we treat the patient, not the report." Which basically refers to treating the symptoms the patient is having (in my case I have a hard time exercising without a lot of fatigue, however, my EF is still at 60). While I have a leakage of the aortic valve, I also have some loss of functioning with the heart muscle which results in more fatigue, especially upon exercise.

Perhaps thinking about your symptoms can help you move forward. Also, a third opinion in a matter like this would certainly not be inappropriate, especially if you seek out a good heart center with an excellent reputation. I'm not sure what geographical area you live in but Mayo has 3 facilities in the U.S. (Minnesota, Florida and Arizona).

I look forward to hearing from you again.

Teresa

REPLY
@dixitworld

Hello All

I am 31/M
I had my bicuspid aortic valve replaced 8 years back with ATS Mechanical 22 Mm valve.
Now I am diagnosed with ascending aorta size of 5.2 and aortic root of 4.4.
I talked to 2 surgeons in diff hospital.
One surgeon says that no need to replace well functioning mechanical valve and will cut root just before the valve and cover the little rim and existing valve with graft.he gives reason if a mechnical valve passes 1 year successfully it typical remain forever and should not be changed. His recommendations is not to touch the place where valve is sewn to root.

Other surgeon is of opinion that when we will open we will be able to see the condition of root and if it need to be replaced we will put new composite graft already fitted with a new St.Jude valve.
He also believe my current valve is 100 percent functioning but as per him existing valve should have some tissues deposited and replacing a new is always better.

What to choose. Both surgeon are top notch surgeon in diff hospitals

Jump to this post

Hi @dixitworld. I am glad to make your acquaintance and to follow along with you as your heart valve issues are resolved. I won't be able to offer any vital information about your heart valve, because I haven't encountered that. My son-in-law did 20 years ago, and his surgery fixed his problems; he is in good health and hardy enough to enjoy hiking, hunting, and other outdoor activities.

My experience has been with enlargement of the left ventricle and thickening of its wall, which has reduced my EF somewhat in the last 8 years. I also contracted atrial fibrillation in the left atrium about 4 years ago. Even so, the combination of the two conditions has not greatly hindered my lung or heart functions, although my endurance has fallen off somewhat, and I have given up bicycle racing as a result.

We have the good fortune to be helped in this case by a real trooper, Teresa (@hopeful33250), who has had an experience like yours. She also has given good advice, I think, in suggesting a third opinion -- and especially from doctors at a Mayo Clinic, or at a nationally recognized cardiac center. Another possibility that occurs to me, since you spotlighted the expertise of the two cardiac surgeons you have dealt with: Could they be persuaded to coordinate their recommendations for valve surgery and agree on a course of action? This would relieve you of the burden of being a referee between competing surgeons with differing treatment plans. Perhaps the three of you could get together and develop a strategy that you'd feel comfortable with. Whaddayathink?
Martin

REPLY
@hopeful33250

@dixitworld

I would first like to welcome you to Mayo Connect and to thank you for posting about your health concern regarding an aortic valve problem.

I understand your concerns, I have an aortic valve (with aortic insufficiency) that some doctors think need replacing, but not all. I could only wish for a concise decision from two doctors so that I could have some confidence on making an informed decision and going forward.

In thinking about your situation I'm wondering how this change in your EF (which you state is now 50) is affecting your symptoms. How are you feeling? What type of symptoms are you having? Has your energy level, ability to exercise, changed since your EF has dropped to 50?

I have one cardiologist who says "we treat the patient, not the report." Which basically refers to treating the symptoms the patient is having (in my case I have a hard time exercising without a lot of fatigue, however, my EF is still at 60). While I have a leakage of the aortic valve, I also have some loss of functioning with the heart muscle which results in more fatigue, especially upon exercise.

Perhaps thinking about your symptoms can help you move forward. Also, a third opinion in a matter like this would certainly not be inappropriate, especially if you seek out a good heart center with an excellent reputation. I'm not sure what geographical area you live in but Mayo has 3 facilities in the U.S. (Minnesota, Florida and Arizona).

I look forward to hearing from you again.

Teresa

Jump to this post

My EF is 65 and more currently , I think my post was not clear. I had EF down at age23 when my valve was changed.
Now I don’t have any valve issue or EF issue. I have aortic root and asc aorta aneurysm.

REPLY
@dixitworld

Hello All

I am 31/M
I had my bicuspid aortic valve replaced 8 years back with ATS Mechanical 22 Mm valve.
Now I am diagnosed with ascending aorta size of 5.2 and aortic root of 4.4.
I talked to 2 surgeons in diff hospital.
One surgeon says that no need to replace well functioning mechanical valve and will cut root just before the valve and cover the little rim and existing valve with graft.he gives reason if a mechnical valve passes 1 year successfully it typical remain forever and should not be changed. His recommendations is not to touch the place where valve is sewn to root.

Other surgeon is of opinion that when we will open we will be able to see the condition of root and if it need to be replaced we will put new composite graft already fitted with a new St.Jude valve.
He also believe my current valve is 100 percent functioning but as per him existing valve should have some tissues deposited and replacing a new is always better.

What to choose. Both surgeon are top notch surgeon in diff hospitals

Jump to this post

My current surgeon are Craig Miller at Stanford and Dr Svensson at Cleveland Clinic. What I understand is more surgeon in diff hospital I talk more diff opinion comes up resulting in more tension and headache. I was looking for any patient similar in condition like me who can tell what was done in his or her case

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