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Hi Susan,
Hope things are going well ! Jaime already had her follow up angiogram (angiogram/emolization was on a Monday, craniotomy Tuesday, follow up angiogram was that Friday). It was all done in one week. We've seen the neurosurgeon a few times since the surgery (July, September and December). In December he basically said he'd see us again June and from there it would once a year. He said this would be indefinite meaning we'll never really be done with it. We're OK with it though b/c we really love this doctor. (I know I'd have cried if I had to say goodbye forever to the guy who saved her life!) They haven't talked about follow up angiograms, MRIs or anything...they say she's cured. The newer neurologist has her going for the 24 hour video EEG this coming Tuesday/Wednesday. They're also talking about doing neuropsych testing. (did I ever email you that info?). I'd like to believe Jaime is 100% cured with no residual issues but I think I mentioned to you that we have some concerns about excessive forgetfulness so I'm not really sure of where we're at. We plan to address this further with the neurologist this coming week. I think they're the ones steering the ship right now.
instead of multiple angios, jamie's drs decieded to preform a craniotomy, this maybe that j's has had the opportunity to to grow for 30yrs before discovery, she will have to take antiseizure meds for the duration of her life,she will need to have follow up cts, until the all clear is given. since without a blood supply they are not supposed to reform.i feel blessed tat we have so m any years, as, a single mother i don't know how i would have been able to cope. she hasa very good attitude, and has recieved excellent care from her drs', and support from her sister.
We were advised to have an MRI at 6 months and an angiogram and MRI at a year, then just MRIs yearly. We did the MRI at 4 months due to some concern and all was well. We repeated MRI at a year, opted not to do angiogram per another surgeons advise that if it were his own child he wouldn't do it unless MRI showed abnormalities. Scarring was one reason he stated, said at his young age (6 at the time) and the fact that he would probably need more and had already had more, he convinced us not to do it. I think it was the right choice for us. He treated the situation more like we were family instead of a case, if you know what I mean.
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