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Encephalomalacia, anyone?
Mri results came back that I have stable encephalomalacia in the left frontal lobe. I had a benign tumor removed from my left frontal lobe in 2014. I’ve had checkup MRIs done often since then and have never had encephalomalacia mentioned. I assumed this would begin shortly after a brain surgery, showing on scans.
Has anyone else had brain surgery, then diagnosed with encephalomalacia later on? Has it progressed for you? Your similar experience is greatly appreciated. Thank you.
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Yes! I am so grateful to communicate with you! I had an aneurysm clamped off in my left temporal lobe about 20 years ago. I had numerous CAT scans during the years following seizures in which I fell and injured myself. Encephalomacea never showed up in any of them. Until the one I had done following an assault October 13th 2023. This finding was never brought to my attention by my neurologist nor my primary care physician.
In fact, I came across this information on my own while filling out forms for Social security disability. I have an appointment for tomorrow morning with my neurologist to discuss this development. I have had repetitive seizures, developed "excessive daytime sleepiness" which a polysomnography and sleep study diagnosed my condition as idiopathic hypersomnia. Most recently, I developed sleep disturbances that appeared to be Parasomnias. I have endured headaches and most recently sudden onset severe headaches, vertigo, diminished coordination, and my vision, at 50, began to deteriorate rapidly. After never having worn glasses, the last 2 years, my vision has become increasingly poorer, and continues to do so. I have developed behaviors that are NOT typical of my past behaviors. I have developed moods that don't seem to be my own. I have also developed severe symptoms of ADHD, WHICH I ALSO NEVER HAD BEFORE.
Short and long term Memory loss has significantly increased over the years following my surgery. I also suffer from confusion, and dizziness. I realized just today that these conditions, which were potentially diagnosed as other conditions, all symptomotology seemed to fit encephalomalacia. I am devastated, as I understand this to be a non-treatable, non-curable, and eventually terminal.
Had brain surgery 2010; just got diagnosed with having stable encephalomalacia for the first time. Have no idea what it means for me.
Has anyone experienced seizure activity (blank stare, loss of consciousness, seizure tremors and rigid abdominal muscles) and been diagnosed with encephalomalacia?
I had an awake craniotomy in August 2019 to resect a benign tumor, and encephalomalacia did not initially present on immediate follow-up MRIs. However, it was evident on my two-year follow-up MRI in 2021. My Mayo neurosurgeon did not think it was any cause for concern but rather an expected consequence of surgery.
I have several comorbidities so it's difficult for me to say whether it has caused any issues or not. But I'd love to hear others' experiences. I have another follow-up MRI in a few months and am wildly curious to see if it has spread to other areas of my brain.