ABI and Encephalomalacia

Posted by trixiesirish @trixiesirish, 2 days ago

I had a R craniotomy in 2016 for a tentorial/petroclival meningioma. In 2018, it was discovered that the residual tumor might be growing, so I went through 6 weeks of focused (?) radiation, which caused radiation necrosis.

Subsequent MRIs show stable encephalomalacia in the temporal lobe and tumor growth.

The problem is, I’m having increasing trouble with my vision (I keep going cross-eyed while I’m reading or focusing closely on something) and gait (I veer and it’s like my feet are not communicating with the rest of my body. I’ve fallen several times). My neuropsychologist said damage to the temporal lobe could cause these problems. Fair enough.

But, do the symptoms of encephalomalacia get worse, even if the MRIs are stable??

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laura1970 | @laura1970 | 2 days ago

I can’t help with the encephalomalacia issue but if you’re falling this needs to be addressed. Possibly your PCP can do a full fall risk assessment or perhaps she will refer you on to someone else. Regardless, this needs to be done. In addition, if u have Medicare, they will pay for an in house visit annually. Ask them to do an environmental fall risk assessment looking for causes of falls in the home : area rugs, uneven thresholds, need for grab bars, inadequate lighting, etc.

trixiesirish | @trixiesirish | 2 days ago

In reply to @laura1970 "I can’t help with the encephalomalacia issue but if you’re falling this needs to be addressed...." + (show)

@laura1970 Already being addressed with PT. We’ve made some progress. We may need to revisit. My primary and I have been on top of it. I *am* a fall risk. I’m aware of dangerous items and am always assessing whether I need to move things potentially in my path. In fact, I see one now. LOL But, on top of it. Thanks!