Recurrent and Severe Numbness: Looking for Help

My daughter’s bleed was in 2007 when she was 16 years old. She had an embolization followed up by gamma knife 6 months later. During the last two years she has experienced disturbing numbness that affects wide areas of her skin, mouth and throat. The lack of sensation, like anesthesia, will last for several weeks at a time. It’s sometimes difficult for her to eat because she can’t feel food she is chewing. At times she hesitates to shower because she can’t feel the temperature of the water. We almost ended up in the ER on Tuesday because of an uptick in the numbness.

My daughter is convinced something is wrong and frustrated that no one can figure it out. We spoke with her surgeon summer 2010, but nothing showed up her MRI. She saw her fall 2010 and completed a round of tests which ruled out seizure, new AVMs etc. But the problem continues unabated. Our primary care physician feels the problem is somehow related to either the original AVM trauma or perhaps treatment. I am trying to pursue any and all leads. So, any and all corresponding experience like this would be appreciated. I think we need to find a neurologist in the the Baltimore Washington DC area who specializes in post treatment AVM care. Our current neurologist has no experience with AVMs at all. I am also planning to contact the team in Univ of Pittsburgh who did her gamma knife procedure. Any other ideas welcome!

My focal seizures cause numbness, loss of sensation in my face, mouth, tongue. I can’t talk or eat. BUT never for prolonged periods of time. Longest focal seizure I have had lasted just over 10 minutes. However, I may have several in a day and after each one it takes some time to feel “normal”…
Has anyone investigated possible nerve damage from the halo during Gamma. I’m just not sure if it would come and go like that.
It’s very difficult when physicians don’t have the answers. Best wishes.

Stephanie, Thanks for the quick response! We pretty much confirmed that it wasn’t focal seizures (I think?) because she wore one of those 24 hour things with all the wires to the scalp. That was normal. Thanks for the other idea, never would have thought of investigating the halo.