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lisagold70 (@lisagold70)

Scimitar Syndrome: Anyone else have this?

Heart & Blood Health | Last Active: Sep 1, 2021 | Replies (11)

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Hello @lisagold70 and welcome to Mayo Clinic Connect. I appreciate your post and question about scimitar syndrome. As I had never heard of this before, I "Googled" the term and found that this is a rare disorder. Here is some information that I found on the National Institute of Health's website. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2813113/.

From your first post, I see that you were diagnosed with this in 2015. If you don't mind sharing more, could you relate what symptoms you were having that led to this diagnosis and what tests were done to confirm it? Have you had surgery or other treatment?

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Replies to "Hello @lisagold70 and welcome to Mayo Clinic Connect. I appreciate your post and question about scimitar..."

Yes happily: I was diagnosed in 2015 prior to my diagnosis the only symptoms I was experiencing was shortness of breath and fatigue. I was employed as a CMA for a family practice physician who suggested I use an inhaler before my workouts. I changed employment and was employed for a cardiologist. At the time as I'd room patients I'd identify myself to there symptoms however trying not to be a hypochondriac I brushed off my symptoms. However, my workouts where becoming more difficult because my SOB and fatigue was getting worse. Soon after I started to retain a lot of fluids and gaining weight rapidly. I had a ECG and a ECHO in the office and even though my ECG showed RT heart enlargement the cardiologist wasn't to concerned. By the time I seen my own cardiologist I had another ECG, ECHO, TEE and showed nothing, it wasn't until I requested a cardiac MRI that I was properly diagnosed. Within 5 months of that diagnosis I was in heart failure and needed open heart surgery to create a baffle to allow proper flow from the RT to LT. It followed 2 other open heart surgeries due to stenosis in the baffle that was placed and numerous procedures such as right heart caths, balloon etc. Thankfully Dr. Derani at Mayo Rochester, which I had to fly to from PHX, performed my 3 and hopefully final open heart surgery in 2017!

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