Kommerell’s Diverticulum with aberrant right subclavian artery

Posted by Jackie Bell @jbell22, Feb 7, 2017

I have a right facing aorta with an abhorrent left subclavian artery and a kommerellis diverticulum. I have had one surgery and am looking at more. My question/query is this: does anyone with a heart condition get heart pain just from talking? The more I talk (just with friends, on the phone etc) and the louder I talk increases my pain. My surgeon is suggesting now that I might have an aorta which is attached to my breastbone and I might now need an aortapexy - symptoms being the talking issue. Anyone familiar with this? ☺

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So I am desperately trying to find others with a left aortic arch and right aberrant subclavian artery. I have been symptomatic for years but thought it was because of my poorly controlled asthma. Then when I started choking on food and having dysphasia every week they sent me for a barium swallow study. Long story short, now diagnosed with ARSA and have differing opinions on whether or not Kommerells Diverticulum is significant. Saw a surgeon at a well known US hospital but he’s making this seem like this is such an easy surgery. Only need to stay 1 day and back to normal in 2 weeks. However this is not what I’m hearing from several on this sight. Any insights into similar situations and your experiences would be forever appreciated!

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@dsr

Hi,

I am still in the middle of being diagnosed. but wanted to inquire about what happened. I have a right sided aortic arch coursing to the right of the trachea with a dilated kommerell which appears to be compressing on the esophagus superiorly. There is likely and aberrant left subclavian artery as well.

Where did you receive treatment, who were your doctors?

Thanks.

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I was referred to Mayo Rochester by my cardiologist in Florida. I saw Dr. Bowers for vascular surgery and Dr. Pochettino for cardiac. My aberrant right subclavian was really unremarkable though- no enlargement or ring or really any issues. I was found to have a kink in my aortic arch that caused an aortic aneurysm and left subclavian aneurysm and to repair the aorta they had to relocate the aberrant right subclavian. Your case sounds more complicated with an actual Kommerals and other issues. I was very happy with Mayo and its doctors and would highly recommend.

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@dsr

Hi,

I am in the middle of being diagnosed. Out of curiousity did you have a thoracotomy? How long was your hospital stay? Recovery?

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Hi @dsr
I did have a thoracotomy. I actually had a surgery through my neck though to relocate my ARSA, a vascular surgeon did that the first day, the second day the cardiac surgeon repaired my aortic and left subclavian aneurysms via thoracotomy(if I didn’t have those I would have my ARSA still because it had no aneurysm or ring, it was just in the way of the repair needed on my aorta from the other aneurysm). After that I spent a few hours in ICU then to the floor and was discharged 8 days later- flew home the next day to Florida. I was up to a chair and walking to bathroom about 8 hrs after surgery- not well and not easily but they don’t give you much choice. I am a pretty active person and had 2 kids (14, 11) at the time so I was motivated to get moving:). I did not have any therapy- cardiac or physical- and really did not have any complications. It’s 3 years later now and I run 2-3 miles every day - and am doing really good. Hope this helps answer some of your questions. Best wishes!

Jeane

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@jeanern01

Hi!! So sorry to hear you had to go through all of this. I had aberrant right subclavian. I had surgery Nov 2019 at Mayo Rochester with Dr. Bower. My case is unique in the sense- i had no symptoms whatsoever. I also had no dilatation of the aberrant artery. I did have a large left subclavian aneurysm and descending aortic aneurysm. My cardiologist here in Florida sent me to Mayo right away, and with Dr. Bower and Dr. Pochettino help I had a 2 day surgery-- day one Dr. Bower relocated my aberrant artery to my carotid( only because it was in the way for my aortic grafts I needed) and day 2 Dr. Pochettino replaced a large portion of my aorta and left subclavian. I highly recommend if you are needing a second opinion trying Mayo. Not many doctors know how to approach an aberrant artery. If your not having symptoms it may just require some routine imaging--mine was a Ct scan. I was told the main issue with this is the development of Kommeralls diverticulum-- which is basically an aneurysm on the right subclavian-which doesn't happen all the time. Dr. Bower told me that if I did not need the aberrant artery moved because it was in the way of the graft for my other issues- he doubts my aberrant artery would have ever caused me any issues. I highly recommend before you panic to see a dr who is well experienced with this issue like Dr. Bower. It really did help me. Best wishes.

Jeane

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Hi,

I am in the middle of being diagnosed. Out of curiousity did you have a thoracotomy? How long was your hospital stay? Recovery?

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@jeanern01

@jbell22 thank you for answering! I am so sorry to hear about all of your issues first of all. I have known since childhood I had a bicuspid aortic valve, in the past 6 mos. I have had a spike in my diastolic pressures, my cardiologist started me on meds but my echo really didn’t look that bad so he just wanted to make sure there was nothing else causing the pressure other than the stenosis from the valve- so I had a cardiac MRI. I live in Pensacola, which is one of the smaller cities in Florida, my cardiologist and the surgeons here saw the scan and never seen this before, so really they couldn’t or wouldn’t speculate treatment or even really confirm diagnosis yet, in fact I have heard many different measurements of my KD from them so I am not even sure how big it is! Our hospital here has a affiliation with Mayo, so we reached out immediately. It’s only been a month since we did that so we are still working with coordinators to schedule a visit, I have found it’s not quick process. My husband is a physician, so we have tried to find some answers through his colleagues as well, but honestly I have not heard really anything from any physician other than I need to go to Mayo. My MRI result reads left aortic arch with right aberrant subclavian with KD of 3.5cm, but like I said the docs here aren’t agreeing in measurements, most have never read a scan with this before either. I have no symptoms- so I feel very fortunate. It sounds like your issue is very complicated and painful. I will just be glad to sit down with a dr who can confidently tell me what is going on and answer my questions- the unknowns are starting to cause a little anxiety. I am really apprehensive surgery. Did you have all of your procedures and surgeries at Mayo? How has your experiences there been? The coordinator has been working for over a month and I still do not have an appointment, but I also feel like I am not an emergent case so I am trying to be patient . Thank you for discussing this with me!!!

Jump to this post

Hi,

I am still in the middle of being diagnosed. but wanted to inquire about what happened. I have a right sided aortic arch coursing to the right of the trachea with a dilated kommerell which appears to be compressing on the esophagus superiorly. There is likely and aberrant left subclavian artery as well.

Where did you receive treatment, who were your doctors?

Thanks.

REPLY
@abbieannemary81

Hi Jackie!
I live on Vancouver Island and was diagnosed with KD/ARSA over 2yrs ago. I have been through a variety of tests and would really just like to be fixed. I had a surgeon here in Victoria but had a second opinion consultation with a doctor in Vancouver who wanted me to get surgery asap. After talking to his "team" they want MORE testing. I am a single mom of 2, age 40 and I will just like to be able to eat/sleep/breath properly. If you have any insight....I would love to connect!!!! My aneurysm is 25mm!!!! If I had the money I would have been at a Mayo clinic 2yrs ago and ready to get my life back to normal.
Thanks!
Abbie

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Hi Abbie,
Absolutely, we should connect - it is a terrifying thing you are going through. How would you like to connect - phone, email, in person? I live in Courtenay if you ever pass through. I probably have seen many of the specialists you have or will be seeing.
Jackie

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@jbell22

It is very unsettling and difficult to not think about. I live in B.C. and my surgery was at St. Paul's Hospital in Vancouver, B.C. - I live on Vancouver Island. Sadly, the Mayo Clinic is not an option for me unless I win a lottery. There is a 2016 study out of Virginia that says KD's should 'be called Kommerellis Aneurysm and not Kommerellis Diverticulum because of their unpredictability and catastrophic nature' and it goes on to explain why. My surgeon called it an aneurysm but my cardiologist now feels as your does that it shouldn't be under the aneurysm umbrella, that they are unlikely to rupture or rare to rupture but considering what we have is very rare, it seems par for the course. I hope this isn't too much negative stuff and I apologize if so.

Jump to this post

Hi Jackie!
I live on Vancouver Island and was diagnosed with KD/ARSA over 2yrs ago. I have been through a variety of tests and would really just like to be fixed. I had a surgeon here in Victoria but had a second opinion consultation with a doctor in Vancouver who wanted me to get surgery asap. After talking to his "team" they want MORE testing. I am a single mom of 2, age 40 and I will just like to be able to eat/sleep/breath properly. If you have any insight....I would love to connect!!!! My aneurysm is 25mm!!!! If I had the money I would have been at a Mayo clinic 2yrs ago and ready to get my life back to normal.
Thanks!
Abbie

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@abutler27

I’m trying to get some questions answered and also figure out how do I go about getting an appointment

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I was first referred to Mayo by my cardiologist. My first referral went to Mayo at Jacksonville but then they said it best to go straight to Rochester. We contacted Rochester ourselves. It did take some time- I believe maybe 3 months to get the appointment, then everything happened rather quickly. If your doctor will not refer you reach out your self. It is important to have all your tests and scans ready to send when asked to help speed up and facilitate the process. Reach out to the closest Mayo first, I found that was the best way to get my foot in the door. And you may not hear back right away- it was 2 weeks before I got a return call. But be patient— there is a reason so many people seek care there. Hope this helps a little…. Take care

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@abutler27

I’m trying to get some questions answered and also figure out how do I go about getting an appointment

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@abutler27, I moved your post to this related discussion:
- Kommerell’s Diverticulum with aberrant right subclavian artery https://connect.mayoclinic.org/discussion/adult-congenital-heart-disorder-right-facing-aorta/

I did this so that you can easily connect with fellow Connect members with similar issues like @jeanern01 @perry1 @jbell22 @akeyfes @jl2rogers

I also encourage you to click the link above and read through the other posts.

To request an appointment with Mayo Clinic experts, start here: http://mayocl.in/1mtmR63

You can self-refer by completing the online form or call the Mayo Clinic location of your choice. Or you may prefer to ask your doctor to submit a physician referral. It looks like you have all your records to make the submission yourself.

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@amandaa

Hi @abutler27 and welcome to Mayo Clinic Connect. Are you looking to connect with others who have the same thing or looking to get questions answered?

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I’m trying to get some questions answered and also figure out how do I go about getting an appointment

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