Coarctation of the Aorta

Hello @afunt0708
My kids do not have CoA but I do. I had mine repaired at Mayo Rochester 2019 at 42 years old. Dr Pochettino did my surgery, and I could not have been in better hands. I had half of my aortic arch and most descending aorta replaced. They did it via thoracotomy. I was in the hospital 9 days and flew back to Florida on the 11th day post op. It was by no means an easy surgery- but in my experience (as an adult) there was no better place to be but Mayo. I would imagine this is a very different scenario for a child and there are many excellent pediatric heart centers- I cannot imagine how scary this must be for you! I would get second and third opinions if possible at big university centers and find the team you are most comfortable with. But after my experience I would not hesitate to send my child there, but again as an adult it is a very different experience and surgery so I don’t know if I am much help. Best wishes, thoughts and prayers your way!

Jeane

@afunt0708, welcome. I can imagine you have loads of questions. I hope you saw the helpful response from @jeanern01. I'm also tagging @judytru to join this discussion.

Will your son be treated at Mayo Clinic? Which location?

Hello- my 47 year old husband was just diagnosed with coarctation of the aorta. We went to Mayo Rochester for chest pain evaluation and saw a cardiologist while there this past weekend. We are awaiting a call from congenital heart to get an appointment. Curious to learn more about the process other adults have gone through after being diagnosed. Thank you!

Hi there. I am so curious to find out how your husband is doing. I was diagnosed with CoA (coarctation of the aorta) in 1986 at the age of 20. Within a week I had a thoracotomy (surgical entrance to the heart through the left side of the body) in order for the cardiac surgeon to cut out the narrowing of my aorta (1.5 centimeters! But I was completely asymptomatic. Crazy right?) out and replace the section with a Dacron graft. (One of many options for repairing CoA). Now, 39 years later at the age of 59 and after routine yearly CT scans and visits with my cardiologist, it was noted that over the years my CoA had returned and my peak gradient had gone from 20 to 33 mmHg. I was already seeing Dr. Heidi Connolly at Mayo’s Adult Congenital Heart Defect Clinic for the last 5 years, and it was determined that a less intrusive vascular repair was not possible. I would have to have another thoracotomy. Being older and wiser, I was petrified. I knew just what to expect. Wonderful Dr. Pochettino performed my second repair on September 17, 2024 and although a thoracotomy is a very, very difficult surgery, my surgical recovery has been great. However, I was warned of a 10% chance of damage to the Vagus Nerve. Lo’and behold, I fell into that group. My left vocal cord is paralyzed and I developed laryngeal sensory neuropathy and a severe neurogenic cough. I have coughed a dry cough since surgery and it progressively worsened. My PCP tried everything to alleviate it, steroids, antibiotics, Codeine w/Guaifenesin. Nothing worked. I coughed so much I would vomit multiple times a week and was not allowing my 14 inch incision on my side to heal. I even ended up in the ER but no one seemed to know what to do. Finally, just this past Thanksgiving week, I went back to Mayo (I live 50 miles southwest of Chicago) and saw my cardiologist, an ENT and a Pulmonologist and within two days of talking and testing they had the diagnosis. I have been put on pregabalin 3 times daily at 50 mg each time. I’ve been on it since Thanksgiving and still continue to cough. It is a long process to heal, but my Pulmonologist believes I will see significant improvement in 6 weeks. For some people, it remains a chronic condition. I couldn’t imagine having it for life. I can’t even speak or laugh without coughing. So - there you have it…my experience with Coarctation of the Aorta, two thoracotomies, and one resulting surgical damage to my “Recurrent” nerve (the official name of a branch of the Vagus nerve that wraps around the aorta.) I am praying that everything went well for your husband and no surgery was required. It is uncommon to find CoA in adults so he was very lucky. On a side note, if any one has had a thoracotomy for any reason or has had or has experience with chronic neurogenic cough and treatment with off-label Lyrica (pregabalin - being used in an off-label capacity) or Coarctation of the Aorta, please follow up with me. I find I have absolutely no one to discuss my experience or neurogenic cough with. Again, good luck to your husband and I apologize for my extremely lengthy response. (Pardon any typos! I typed this on my iPad.)

Hello,
Thank you so much for your message, thoughts, and prayers! Your message was such a welcome surprise and I so appreciate the time you took to write it - thank you!

As you requested, an update on my husband…. He had the less invasive procedure this summer and the stent greatly improved the gradient in his aorta. He has had some bumps along the road - but is doing well. It took about a month post procedure for my husband to be feeling better and he has been staying on top of monitoring his blood pressure and heart rate and how he feels. He also just finished months of cardiac therapy to monitor his heart rhythm during activity…. This has lead to a decrease in medications he was needing to take and we are so thankful for that as well!

We have been so impressed and thankful for the Mayo system…. The congenital heart group and how interwoven the help at Mayo has been!

I am so sorry to hear of your repeat diagnosis, procedure, and damage to your vagus nerve. It must have been so hard for you to learn about the reoccurrence and then go through the whirlwind of another surgery as well as to now go through the symptoms related to the damage to your vagus nerve. How have you been doing since writing on Sunday?

You wrote some things that really resonated with me….. outside of the physical, there is a mental and emotional load that comes with a congenital heart diagnosis even well after surgery and procedures have occurred. My husband just had a short burst of minor chest pain that felt like the symptom he had before the procedure - even that related short symptom amongst all the good brings back feelings of fear, anxiety, and uncertainty because of what you know from previous experience as well as the unknown.

The CoA diagnosis is teaching us the importance of reaching out, connecting with those you love or those who can relate and being honest about what you are experiencing…. Not our strong suit, but every time we choose to reach out we are
So thankful that we did!

This experience is also teaching us to stop, notice, and give thanks for the blessings in the negative. The odd pain he had prior to procedure was irritating and annoying while it was being experienced…. But was the main reason a scan was completed and allowed him to be diagnosed! This experience has also brought us closer to some family where distance had crept in and has strengthened our small family in ways we didn’t expect. There have been so many big and little blessings during the darker times.

I’ve been thinking of you daily and praying for you - prayers for healing and comfort as well as unexpected blessings in times that can feel dark and lack hope.

Thank you again for your message, we are counting it as another blessing this week! If you’re up for it, please let us know how you’re doing.