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A MyEpilepsyTeam Member asked a question 💭
Shanklin, UK

Why do Dr use such long words you don't understand.
I saw my epilepsy Dr last week who put my meds up. I asked for copy of the letter. On the letter it states what I was diagnosed with from my MRI scan I had done a few years back with is causing my epilepsy.
It say Epilepsy with heterotrophic grey matter on MRI.
What the hell does that mean?
All I know is my brain is not how it should be and I have both absence and grand mal seizures. That's all I know.
Anyone?

November 18, 2015
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A MyEpilepsyTeam Member

Gray matter heterotopia (singular heterotopion) is a neurological disorder caused by clumps of grey matter being located in the wrong part of the brain.

November 24, 2015
A MyEpilepsyTeam Member

You can look that word up in a medical dictionary to find out the true definition. As well as ask your doctor. Your doctor should have told you what it was in lamens terms.

November 18, 2015
A MyEpilepsyTeam Member

I happened to be at my Neurology specialist when I saw this, figured I would ask what the term ment...

So you should still ask your doctor to clarify where and show you your scans but... Epilepsy from Heterotrophic grey matter showing on your MRI is when clumps of grey matter are located in the wrong part of the brain.

November 18, 2015
A MyEpilepsyTeam Member

It could be scar tissue or something similar. It depends. I would ask the doctor to explain it clearly to you.

November 18, 2015
A MyEpilepsyTeam Member

I don't know if this the same thing, but my husband has bi layerial peri-ventricular gray matter heterotopia which has to be diagnosed by an MRI. It is a birth defect where not all of the brain cells made it to the cortex when you formed in the womb. The heterotopias are the clumps of brain cells stick into the ventricle (fluid sacks in your brain.) Places in the brain where the cells were supposed to go can be seizure points. We went to the MAYO Clinic in Rochester, MN.

September 30, 2025

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