In our attempts to have a procedure done by all the neurosurgeons on the eastern seaboard, Monday marked our first with Dr. Vez at Capital Health. My wife had an agiogram peformed and it was done well. Hospital is under construction but easier commute, parking and all around equal to or better than Jefferson experience. The early results are in and they are ........well somewhat curious. AVM is still there and large. Almost 4 yrs from last GK and apparently little success. Actually we are not sure what has changed and now in the process of comparing the before and after pics to see where we stand. Dr. Vez made an interesting comment which suprised us! He said that he didnt see any glue from previous embolizations at Jefferson. 4 embolizations were performed from 2003-2005 and it was our understanding that glue was used to make the AVM smaller for GK. So the obvious question is " What was done during those procedures?" Good news was that Vez does believe that further embolizations might be a next step so there maybe hope for progress.
Met with Dr. Chris Skidmore at Jeff - a seizure specialist and was most impressed. Checking for Tegretol toxicity and then considering a change to Keppra or Lomictal.
Have sent films to Dr. Gary Steinberg at Stanford, traded emails with Spetzler in Phoenix and waiting to hear back from Dr. Ogilvy at Mass General. Spoke with Dr Grady at Penn and will be collecting the necessary info for them to review. Dr. Grady answered lots of questions, emails and even a phone call with someone he's never met.