Thanks to everyone who has shared info from their experiences! We are moving in another direction after confirming much of what we had assumed.
We met with Dr. Vez at Capital Health in Trenton. Used to be part of the Jeff practice but left in 07-08 to start his own. We had met him years back and liked him then. Looks like an angio is on the horizon and an appointment with a seizure specialist - all quarterbacked by Dr. Vez.
We are also pursuing a meeting with Dr. Sean Grady at Penn and his team after they review my wife's films.
Have learned that Gamma knife is considered "old technology" and not many docs referring for it anymore - preferring to used newer XRT techologies. Have also learned the latest and greatest in Glue technologies.
No real direction yet until we get the angiogram but at least we had a conversation with someone who knows what they were talking about and not just the nurse. No offense to nurses.
Woo hoo! It is always a good feeling to be able to move ahead!!! I have my fingers crossed for the both of you!!!
Dr Vez is a GREAT doctor!!! I see Dr Rosenwasser at Jeff and If Rosenwasser wasn't around I wanted Vez!!! Good luck with your journey:)
Mike, Have you ever been to a support meeting for people with Aneurysms and AVMs? One of the nurses from Jeff runs them, and they are helpful for the patients (me, AVM) and support people (my husband). Do you have a neurologist who follows you? Surgeons generally are concerned w/ surgery only, not with ongoing care and symptoms. I have a fantastic one who has followed me for years. He sent me to Dr. Flamm (about 15 years ago), but was told my AVM was untreatable at the time. My neuro later sent me to Dr. Rosenwasser to check out the newer procedures. (Had 4 embos, one attempted embo, one LINAC, and ready to schedule another LINAC soon.) Regarding Tegretol: I have had no trouble with it for past 15 years. I did ask my pharmacist about using generic brands, and he explained that since the strength could vary, I would have to constantly get blood work to check levels, so I stuck with the name brand. When your wife saw flashes of light and lost vision, did she see an opthalmologist? That could also be a sign of a detached retina. I have to say, my husband and I have been very happy with Dr. Rosenwasser. As with any medical issues, it helps to have great advocates like your husband and mine. Stay calm, stay informed, ask questions (especially "why" and "what if").
@Robin - No i have never been to a support group and heading to the city would be a challenge given that we are an 1hr away. We recently went to see Dr. Vez in Trenton and they have groups 3-4 times a year that are significantly closer so we will try to make those. We do have a local neuro but its really limited to medication management - a blood test annually. We are seeking out a seizure specialist and hope to get some resolution on that front soon. We ended up at Jeff last year with the vision problems and they did have the eyes checked to make sure it wasnt a physical cause.
My wife's last GK was 11/07 and there has been exactly zero follow up since then. We have tried and phyically made two trips to Jeff (plus two emergency visits to the hospital)only to be sent home with nothing - not even a conversation with a covering physician. We have moved on from Rosenwasser and now on a nationwide hunt for neurosurgeon. She had an angio with Dr Vez yesterday which has raised some interesting questions about previous treatments. Jury is still out until we can compare and contrast films from years back. Glad to hear that your experience was better and continued success with your treatments.