Kommerell’s Diverticulum with aberrant right subclavian artery

It was recently confirmed that I have ARSA. I consulted a cardio thoracic surgeon that said my ARSA can’t possibly be the cause of my pain due to no rings or affecting my esophagus. And with that opinion my GP told me that she thinks my ARSA is a ‘dead end’ to my symptoms.
Reading your advice has given me hope as I do believe it makes sense that the ARSA may not be the direct cause, but is an impediment.

Ok, so, I had surgery to repair both left & right aberrant vessels Nov 2022, TEVAR to place stents Apr 2023.... no one and I mean NO ONE said to me (or my husband) that the symptoms could or would return. Because the dysphasia is back like it never left. Had yet another barium swallow yesterday (radiologist said: oh, you're back? yes, yes I am) which showed the stump of the ARSA w/ stent (still) pressing into my esophagus. -prior to the study, I asked the surgeon about the symptoms was told: "We do often see that symptoms either never get better or reoccur after treating the aneurysm due to the changes on a muscular level from the chronic compression." Well, that would have been nice to know. Also having upper endoscopy Nov 1st so that'll be a hoot.
Anyone else run into this?

@pinkcarmen, I had no symptoms. It was only found incidentally because of my other congenital symptoms. In fact I would not had it repaired if it hadn’t been in the way- I had a large kink in my aorta and the ARSA just happened to be where the graft would end, so they had to move it. I had no rings, or aneurysm. I was told this is why it is rare- more patients with ARSA are like me- no symptoms and never know they have it. It is also why when diagnosed it’s probably not taken too seriously or investigated properly by some drs. But you know your body and symptoms- and yours is definitely impinging on other structures- keep reaching out to other places for more opinions. Have you had a CT angiogram? Or Swallow studies, I had MRI, and CT scans to really visualize mine, they were able to say for sure no ring and no other structure involvement- so more studies may help secure your diagnosis as well. Hope this helps!

Jeane

Well, it may vary person to person because mine was totally compressing my esophagus and basically choking me out. Not all people have all the same symptoms or experiences.

Hey there, I totally get where you're coming from – heart issues can be a real puzzle. I had a similar journey and found answers on the site wegood.life with the help of a doctor Hanna Romanenko.
My surgeon gave me some insights that eased my worries and put things into perspective.

If you're in the same boat, don't hesitate. Expert guidance can really make things clearer. And hey, remember, you've got a whole community here rooting for you and sharing their journeys too.

Thank you so much, I am looking for other doctors for consults. Have not contacted the Cleveland clinic yet but I will, Thank you for the suggestion. You mention your ARSA does not affect your esophagus, Have you gotten chest pain or any other symptom caused by ARSA.?

Hello @pinkcarmen
I think it is important to have some more studies done. ARSA is rare to find but actually more common just not usually diagnosed. Not everyone has an ARSA that rings or affects the esophagus- majority of them I think are like mine simply in the wrong place but work fine and have to impediment on other structures- which leads normal cardiologist to brush them off sometimes. Reach out to major cardiology centers- if you’re not happy with Mayo try Cleveland Clinic. I got my second opinion from them- they also deal with less common cardiology issues more often. Don’t give up- you are your best advocate and know your body best- and you will find a medical team you feel comfortable and secure with- unfortunately it may take to searching though.

Jeane

So, wow. I'm really at a loss of how to reply to this. 🙁 So, I'm going to leave you with some more information. These are great articles I found:
https://www.mdpi.com/2308-3425/8/3/25
https://www.annalscts.com/article/view/16883/17500
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6600113/#:~:text=Open%20surgical%20treatment%20has%20been,arch%20replacement%20through%20a%20median
https://www.cmaj.ca/content/181/8/498
If your cardiologist does not specialize in this & has never treated this, he will likely refer you to a specialist. Best of luck!!!!

Appreciate your response. I have a right facing aorta with an abhorrent left subclavian artery and a Kommerelis Diverticulum. This is mentioned in 3 of the articles. I am in Canada and have had one open heart surgery where they had to go through the back because of the backwards aorta pressing too high against the sternum (and because the abhorrent left subclavian had embedded into my spinal column). Some work was done but the KD is still there and is at 5.7 cm. The hybrid technique has been mentioned but I didn't really understand it. My cardiologist has said he was looking into it. It is probably more challenging bring in Canada and I'm not sure how that will work for me (surgery in the US).

Glad you found it useful. While it will be helpful for your cardiologist to know about your diagnosis and symptoms etc, this is a very specialized condition, the very special eye surgery, and last I looked. There were only like three guys in the country who could do the surgery. Hence, why I said before to research the cardiovascular surgeon. Plus, it is usually a surgery that has two components, vascular surgeon, and the cardiovascular surgeon who operate in conjunction with each other. So please ask whoever you decide on if surgery is required LOTS of questions. Especially, how many times have you successfully done this operation yourself