Hello Forum Members...
I have been lurking and reading this site continually since my AN diagnosis last year. I cannot begin to tell you how helpful it has been. At times, it was scary, but that is the nature of this affliction I think. As an attempt to give something back, I would like to relate my GK experience at NYU with Dr. Golfinos and Dr. Rush.
Originally, my ENT referred me to Dr. Roland for evaluation of what was believed to be a 4.5 cm AN. As it turned out, there was an error and it was only 5.6 mm (Typo???) Dr. Roland was so comforting and assured me that we should not be alarmed. We were to take another MRI in 6 months to determine growth rate. At the end of that time, the tumor had grown to 6.8mm. Did not get back to his office right after MRI as our NY weather seemed to plot its worst snowstorms each time we scheduled an appointment and we are on Eastern Long Island, so on a GOOD day, it can take up to 2 1/2 hours. Finally saw Dr. Roland in May and he recommended talking to Dr. Golfinos about options. Dr. Golfinos believed that due to my age (73) the growth rate was a bit much and he recommended Gamma Knife now. Needless to say, I was terrified. The whole scenario...head frame, after effects, etc. I discussed my fears and apprehensions with both of these amazing doctors by e-mail. They made themselves accessible and responded to my questions and concerns quickly and were able to put my mind at ease about the risks and benefits of either proceeding or waiting another six months. It was my decision to move ahead at this time because I felt sooner rather than later would be better. No point waiting for it to get bigger and possibly getting worse symptoms which would most probably remain after treatment. Dr. Roland and Dr. Golfinos told me my balance could be worse (it was manageable prior to treatment) and this was my greatest fear. My hearing was pretty bad in the AN ear already, and they both said eventually this would all be lost no matter what we did. Had the procedure done at NYU by Dr. Golfinos and Dr. Rush last week. There is not much info around on Dr. Golfinos doing Gamma Knife and I believe it is because he and Dr. Roland are such exceptional surgeons that that is where focus placed on them. The treatment I received at NYU was absolutely first rate. From the time we arrived and throughout - the team focused on keeping me comfortable and calm. A wonderful nurse named Tim, Dr. Golfinos' terrific Asssistant Jessica and a wonderful aide, all contributed to what I feel was the most positive experience I could have had. Dr. Golfinos and Jessica applied the head frame, and honestly, after the meds I had (a very effective Valium lollypop and some IV sedation), it really was no worse than any dental work we have all had. If the headframe is the reason someone would not consider Gamma Knife, really, dont even worry about it. Had MRI and then the procedure, which in my case was brief. What the future brings, we will see. Seems like tiny symptoms change from day to day. Afraid to say, it seems like my hearing has almost improved a bit, but that will most likely change. Tinnitus a little more noticeable and a bit more balance issues from time to time. Early days, so we will wait and see and deal with it as it comes.
Just wanted to say, NYU facilities may have been terribly damaged during hurricane Sandy, but now, THEY HAVE SUNSHINE IN THEIR BASEMENT. Remarkable team, wonderful caring and professional people throughout. I cannot recommend them highly enough. If by chance, any of them happen to see this, my most sincere appreciation...THANK YOU
