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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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@lisagold70

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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Replies to "Yes happily: I was diagnosed in 2015 prior to my diagnosis the only symptoms I was..."

How wonderful that you persisted and found an answer, @lisagold70. I'm glad that you found a good surgeon at Mayo Clinic in Phoenix. I get the impression that you had to ask for the heart MRI. Is that correct? What made you ask for that?

If you will share more, what was different in the Mayo surgery that makes you think you will not have to have more open-heart surgeries? Also, are you currently taking medications for heart failure?

I hope that your SOB and fatigue are resolved now. Are you able to exercise without symptoms?

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