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Has anyone been diagnosed with a papillary Fibroelastoma ?
I was wondering if anyone has experience of this and management or surgery? I was diagnosed with a 7x7mm Fibroelastoma as part of regular heart monitoring for myelofibrosis and drug damage. I was told that mine is well embedded and of less risk of breaking off whilst it remains less than 10mm. I was prescribed edoxaban to prevent blood clots around the growth in the meantime. The only options I have been given for surgery is atrial valve replacement via full or hemi open heart surgery. Has anyone had any experience or other options offered to them?
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Mine was measured at 1.1 cm in Feb 2024. They wanted to perform open heart surgery to remove but due to other health issues and 5 back fractures I was too weak to do the surgery. I go back May or June this year for follow up test.
Hope your appointment goes well. I have been trying to find out if they can do anything other than complete open heart surgery. I have read some published articles about this happening in the USA but in the U.K. they are not yet willing to consider. Yes given my complicated conditions the open heart surgery is quite high risk for me and I may end up having to be on kidney dialysis as well as bleeding risks. Mine has grown and is still just under 1 cm but they are very keen to push me down surgery. I have no implications of this on blood flow etc and am on blood thinners to prevent clots around the area. Best of luck.