PaulaMart
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Posts: 84
Spain
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I understand you perfectly . It's very frustrating pass through all this and to see that the symtoms don't go away ... Paula's neurologist explained us that It's very difficult for a neurologist to diference between a TIA or a seizure, because the symptoms are very similar ....
After surgery, Paula started to have even more episodes that before surgery, but with time (6 months later) they started to decrease, and now, when she has them, they are much more slight ... Paula is on Trileptal (anti-seizure meication). Is you daughter taking some medication? It's very dificult to give an answer, and probably, you will don't find a Dr who tell you what is exactly hapening to your daughter... I understand you because with Paula's symptoms, Drs didn't know the nature (TIAs, seizures, complex migraines .....).
I have the theory that, if surgery is succesful and the brain perfusion is good but symptoms persist, may be they are provoked by the moyamoya vessels that can still be present after surgery (they can decrease but not completly dissapear...., and may be, when there is a vasoconstriction of this vessels, is when you have the symptoms .... I don't know, I'm not a doctor, but I have almost got crazy looking for an answer, perhaps one day we'll find some answer.
You are not alone. Take care.
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