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? Thank you. ☺

Jackie, I did a quick search of the conversations on Connect and didn’t find any discussions about pain from talking. None-the-less I’m going to tag a few people who I think might have some thoughts. @cynaburst @predictable @debcrawford and @PatMattos.

Jackie, I hadn’t heard of aortopexy so looked it up and found this abstract of a study called “The role of aortopexy in severe tracheomalacia” https://www.ncbi.nlm.nih.gov/pubmed/16516630 Is this pain something you’ve always had?

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@colleenyoung

Jackie, I did a quick search of the conversations on Connect and didn’t find any discussions about pain from talking. None-the-less I’m going to tag a few people who I think might have some thoughts. @cynaburst @predictable @debcrawford and @PatMattos.

Jackie, I hadn’t heard of aortopexy so looked it up and found this abstract of a study called “The role of aortopexy in severe tracheomalacia” https://www.ncbi.nlm.nih.gov/pubmed/16516630 Is this pain something you’ve always had?

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Thank you, Colleen for the site. The pain when talking started at the same time my heart condition made itself apparent – two and a half years ago. I was 54 when I fell very ill and learned about my congenital heart condition.

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I would sometimes get out of breath from talking, but no particular pain. Though I had an entirely different heart condition. hope you get some answers.

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@cynaburst

I would sometimes get out of breath from talking, but no particular pain. Though I had an entirely different heart condition. hope you get some answers.

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Thank you. ☺

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I also get out of breath sometimes when I am talking, but have never had any pain with it. My heart problems are also different then Jackie’s. Hope they find the reason for her condition.

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I was recently found I have this condition after a Cardiac MRI to look at my bicuspid aortic valve. I am working with a coordinator to come to Mayo in Rochester to explore treatment plans. Is there anyone else with this diagnosis? I am an RN but am having so much trouble finding much research on this- it would be nice to hear from someone with a personal experience.

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Welcome to Connect, @jeanern01,

I moved your message and combined it with this existing discussion on Kommerell’s Diverticulum so that you can connect with others. Simply click VIEW & REPLY in your email notification to find your post.

Kommerell’s diverticulum is a rare congenital disorder. It may be asymptomatic and can be detected as an incidental finding (as in your case), or it can present with symptoms related to chest compression. Aortic diverticulum consists of an aneurysm of the thoracic aorta as well as an aneurysmal opening of an aberrant subclavian artery. Here is a Mayo Clinic video that might interest you:
– Researchers Develop New Stents for Complex Aortic Aneurysms https://www.mayoclinic.org/diseases-conditions/aortic-aneurysm/multimedia/researchers-develop-new-stents-for-complex-aortic-aneurysms-video/vid-20232701

According to the latest findings, published in the Journal of the American College of Cardiology, “Symptomatic patients with this anomaly may benefit from surgical correction, while we can take a “wait and see” approach in the asymptomatic.” http://www.onlinejacc.org/content/73/9_Supplement_1/2776

You are quite correct, that there appears to be little research on this condition, but I found a few articles/studies which I hope you might find helpful:
– Taking a New Look at Kommerell: Recent Insights on Aortic Diverticula https://www.vasculardiseasemanagement.com/content/taking-new-look-kommerell-recent-insights-aortic-diverticula
– Graft replacement of KOMMERELL DIVERTICULUM https://www.annalsthoracicsurgery.org/article/S0003-4975(18)31443-7/fulltext
– Exploring the Surgical Management of Aberrant Subclavian Artery Associated With Aortic Arch Anomalies https://www.mdedge.com/vascularspecialistonline/article/168248/mixed-topics

I’m so glad to hear that you are entrusting your care with Mayo Clinic. Now that you’ve been diagnosed @jeanern01, has your doctor outlined any next steps?

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@jeanern01

I was recently found I have this condition after a Cardiac MRI to look at my bicuspid aortic valve. I am working with a coordinator to come to Mayo in Rochester to explore treatment plans. Is there anyone else with this diagnosis? I am an RN but am having so much trouble finding much research on this- it would be nice to hear from someone with a personal experience.

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Hi, I would love to follow and hear what the Mayo Clinic suggests for you. What exactly were you diagnosed with? I have a right facing aorta with an aberrant left subclavian artery (that actually eroded and embedded itself in my spinal column) and a kommerell's diverticulum. I have had one surgery in which the surgeon went through my back (in hopes of removing left subclavian from the spine – could not do) and cut some parts of my heart to loosen the bindings around my trachea and esophagus, he rolled my aorta and tacked it to my heart in hopes of relieving the pressure on one area of the trachea. There was always the thought that I will need another surgery through my front but I haven't needed it yet. My original surgery was in 2015. I do have chronic chest pain and other symptoms but remain active and hopeful.

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@jbell22

Hi, I would love to follow and hear what the Mayo Clinic suggests for you. What exactly were you diagnosed with? I have a right facing aorta with an aberrant left subclavian artery (that actually eroded and embedded itself in my spinal column) and a kommerell's diverticulum. I have had one surgery in which the surgeon went through my back (in hopes of removing left subclavian from the spine – could not do) and cut some parts of my heart to loosen the bindings around my trachea and esophagus, he rolled my aorta and tacked it to my heart in hopes of relieving the pressure on one area of the trachea. There was always the thought that I will need another surgery through my front but I haven't needed it yet. My original surgery was in 2015. I do have chronic chest pain and other symptoms but remain active and hopeful.

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@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!!!

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@kanaazpereira

Welcome to Connect, @jeanern01,

I moved your message and combined it with this existing discussion on Kommerell’s Diverticulum so that you can connect with others. Simply click VIEW & REPLY in your email notification to find your post.

Kommerell’s diverticulum is a rare congenital disorder. It may be asymptomatic and can be detected as an incidental finding (as in your case), or it can present with symptoms related to chest compression. Aortic diverticulum consists of an aneurysm of the thoracic aorta as well as an aneurysmal opening of an aberrant subclavian artery. Here is a Mayo Clinic video that might interest you:
– Researchers Develop New Stents for Complex Aortic Aneurysms https://www.mayoclinic.org/diseases-conditions/aortic-aneurysm/multimedia/researchers-develop-new-stents-for-complex-aortic-aneurysms-video/vid-20232701

According to the latest findings, published in the Journal of the American College of Cardiology, “Symptomatic patients with this anomaly may benefit from surgical correction, while we can take a “wait and see” approach in the asymptomatic.” http://www.onlinejacc.org/content/73/9_Supplement_1/2776

You are quite correct, that there appears to be little research on this condition, but I found a few articles/studies which I hope you might find helpful:
– Taking a New Look at Kommerell: Recent Insights on Aortic Diverticula https://www.vasculardiseasemanagement.com/content/taking-new-look-kommerell-recent-insights-aortic-diverticula
– Graft replacement of KOMMERELL DIVERTICULUM https://www.annalsthoracicsurgery.org/article/S0003-4975(18)31443-7/fulltext
– Exploring the Surgical Management of Aberrant Subclavian Artery Associated With Aortic Arch Anomalies https://www.mdedge.com/vascularspecialistonline/article/168248/mixed-topics

I’m so glad to hear that you are entrusting your care with Mayo Clinic. Now that you’ve been diagnosed @jeanern01, has your doctor outlined any next steps?

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@kanaazpereira, thank you so much for the response and taking the time for the articles. I have read them all and they were very helpful, they were actually ones I had not found and read yet. We reached out to Mayo immediately when we received the MRI report, primarily because my cardiologist has never dealt with this before. I am very assured though so far with what I have seen and heard from everyone at Mayo. I am so glad I discovered this forum on the Mayo website, this is a really great way to help support and share!

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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!!!

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It is all very confusing isn't it. Oddly, I was diagnosed with a bicuspid aortic valve when I was about 12. Thought I had it my whole life but when my congenital defect arose, testing eventually showed I didn't have that. I live in Courtenay BC on Vancouver Island and have to go to Vancouver for all my testing (takes about 6 hours one way – 2 hour ferry trip included in that). I would love to have the option of the Mayo Clinic but would need to win the lottery, haha. Surgery is scary but you are going to the best place and they really know what they are doing. 😊

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@jeanern01

@kanaazpereira, thank you so much for the response and taking the time for the articles. I have read them all and they were very helpful, they were actually ones I had not found and read yet. We reached out to Mayo immediately when we received the MRI report, primarily because my cardiologist has never dealt with this before. I am very assured though so far with what I have seen and heard from everyone at Mayo. I am so glad I discovered this forum on the Mayo website, this is a really great way to help support and share!

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I’m curious on what you were told when you went to Mayo Clinic? I was found to have a right aortic arch with an aberrant left subclavian artery and Diverticulum of Kommerell on an MRI due to my cardiologist hearing a Brue. I’m 35. My cardiologist wasn’t concerned at all and said he‘all scan me again in a year but I’m still concerned. I don’t know the size or anything. It’s hard to find much research or see what the standard of treatment is.

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@jl2rogers

I’m curious on what you were told when you went to Mayo Clinic? I was found to have a right aortic arch with an aberrant left subclavian artery and Diverticulum of Kommerell on an MRI due to my cardiologist hearing a Brue. I’m 35. My cardiologist wasn’t concerned at all and said he‘all scan me again in a year but I’m still concerned. I don’t know the size or anything. It’s hard to find much research or see what the standard of treatment is.

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I am absolutely shocked reading your post – I have exactly the same thing. There should be a post on here from a few years ago describing my situation. I did not know there was anything wrong with me until I was into my 50's (I am 59 now). I have had one very complex surgery in which they went through my back because my aberrant left subclavian artery had eroded my spinal column and embedded in there. There is a second frontal surgery being discussed because of the Kommerellis diverticulum and a vascular ring crushing my esophagus and trachea. I have had conflicting opinions on the danger of the KD erupting. The discovery of my heart issues came when I got very sick, perhaps because you are not, you may never need surgery. I hope that is the case for you.

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@jbell22

I am absolutely shocked reading your post – I have exactly the same thing. There should be a post on here from a few years ago describing my situation. I did not know there was anything wrong with me until I was into my 50's (I am 59 now). I have had one very complex surgery in which they went through my back because my aberrant left subclavian artery had eroded my spinal column and embedded in there. There is a second frontal surgery being discussed because of the Kommerellis diverticulum and a vascular ring crushing my esophagus and trachea. I have had conflicting opinions on the danger of the KD erupting. The discovery of my heart issues came when I got very sick, perhaps because you are not, you may never need surgery. I hope that is the case for you.

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Thank you for your reply. May I ask where you are being treated? I hope everything goes well with your second surgery if needed. My physician said it’s very rare for it to rupture but then told me to keep something on me with the diagnosis just in case. He said otherwise just live life normally. I have 2 little ones and the idea of it rupturing terrifies me. It’s just so hard to find info on it and I’m not sure how familiar my cardiologist is with it. When giving me the results of my MRI he didn’t even mention it by name but I asked about it because I had already read the MRI report on my my chart Before seeing him. Then after I asked about it is when he said we would scan again in a year. If I wouldn’t have brought it up we wouldn’t do anything. I feel like from what o have read it doesn’t seem like it’s a problem until later years of life but I kind of feel like a ticking time bomb. It’s very unsettling.

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@jl2rogers

Thank you for your reply. May I ask where you are being treated? I hope everything goes well with your second surgery if needed. My physician said it’s very rare for it to rupture but then told me to keep something on me with the diagnosis just in case. He said otherwise just live life normally. I have 2 little ones and the idea of it rupturing terrifies me. It’s just so hard to find info on it and I’m not sure how familiar my cardiologist is with it. When giving me the results of my MRI he didn’t even mention it by name but I asked about it because I had already read the MRI report on my my chart Before seeing him. Then after I asked about it is when he said we would scan again in a year. If I wouldn’t have brought it up we wouldn’t do anything. I feel like from what o have read it doesn’t seem like it’s a problem until later years of life but I kind of feel like a ticking time bomb. It’s very unsettling.

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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.

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