A Change of Heart

They have tested me for diabetes, parasites, cancer, and a whole bunch of other things, but everything comes back inconclusive or normal. No one ever tested my heart. You can imagine my surprise when a neurologist at Primary Childrens heard my story while my son was in the PICU and asked if I had ever had an ECHO. After all of these years, no one had considered my heart. He suggested a syndrome that disguises itself as epilepsy that I might have, Long QT Syndrome. I turned out that I did not have this particular syndrome but after some pushing and a lot of tests, they discovered I had a very large Patent Foramen Ovale (PFO). Everyone is born with one, but mine did not close and stretched as I grew. This large hole in my heart that has been closed with a titanium device. The cardiologists I saw thought I was insane because I wanted all of these tests without symptoms, but I am glad that I kept being persistent. Sometimes the squeaky wheel gets the grease. My cardiologist who performed the surgery (I have seen three) told me that he couldn't believe that I haven't had a full stroke, especially during pregnancy. I had a TIA (mini-stroke) that I am aware of and possibly others, but have not had any other major episodes since surgery. When they told me about the PFO it was another "Maybe this is the reason" moment. Unfortunately, I have had a seizure since my surgery and still have severe headaches, but stroke prevention was the main reason for the closure. My heart has inflammation around it so I occasionally have chest pain and my heart races from time to time. This has not caused me to seize.

I would suggest for anyone that has severe headaches or seizures, to get their heart checked. There may be an underlying problem that can not be heard with a stethescope.