Hi Phil and everyone!!
So glad to see we all can brunch together again!! And looking forward to meeting any "Newbie" to the get-together!!
I desperately need some input on my current dilemma--the 1 cm rt AN I had surgically removed Jan 2001 is re-growing because it was not totally removed (contrary to my Operation Report) so anyway last Fall I had consulted w/Dr Noren in RI for GK and on the recomendation of my UMassMed Ctr MD met w/Neurosurgeon Dr Barker at Mass General (he said 10% chance of further damaging my facial nerve w/repeat surgery--didn't want surgery again anyway) who referred me to Dr Loeffler (Chief, Radiation Oncology) at Mass General. Dr Loeffler told me there is a FIFTY PERCENT chance of destroying my facial nerve w/one-shot treatment such as GK. He said if I hadn't ever had surgery GK would be okay but because my facial nerve is already weakened he recommends FSR (Fractionated ) w/Lineac--low dose, Mon thru Fri for 6 wks.
I was very unnerved (no pun intended) to hear GK could do this and e-mailed Dr Noren who promptly replied stating in his experience, since 1996 his GK treatments caused no facial weakness in all his AN patients, including ones like me who have had surgery and an already weakened facial nerve. (He HAD told me at the initial consult my facial nerve wouldn't be harmed..) He said he felt there was no need for the FSR but it would inevitably be my choice...
I live in Leominster and work in Worcester and I can do the 6 wks at Mass Gen if necessary, trying to work it around my work schedule or if I can't then I will have to take the unpaid Medical leave (which will be hard financially) ... Dr Loeffler said the treatments are done 7 am to 7 pm.. Anyway tomorrow (Monday) I will call Janice who works for Dr Leoffler to ask if I can contact him via e-mail--I need to know where he has gotten his stats, etc.
I have the utmost repsect for Dr Noren who has been very gracious in his time and was impressed w/Dr Loeffler who is also very confident and personable... But who do I believe???
Thanks for listening--I am upset as I had planned for GK later this summer so now I have to really rethink that!!!
Any input wouild be greatly apprecaited!!! Regards, Mary