Thank you so much for taking the time to visit my site. My name is Michele. I had brain surgery to remove a brain tumor at NYU Langone in 2017 by neurosurgeon Dr. John Golfinos and neuro-otologist Dr. Thomas Roland. I haven’t had a pain-free day ever since.
I was officially diagnosed with Trigeminal Neuralgia in 2017 by my neurologist. It wasn’t until December of 2018 that my neurosurgeon at NYU Langone finally acknowledged that I had Trigeminal Neuropathy (a-typical facial pain) Anesthesia Dolorosa and referred me to another neurosurgeon who specialized in neurostimulation and deep brain stimulation. I have not moved forward with either procedures. Brain surgery also left me with severe tinnitus, deaf in my left ear, speech and balance issues.
Knowing that I no longer wanted to seek follow-up care with Dr. Golfinos, I transferred my case to another hospital. Wanting my notes, I noticed there weren't any from my final visit in December of 2018. It took almost 2.5 years to get those notes and only because NYU Langone's legal counsel demanded the notes be written. Upon receipt—in March of 2021—they were inaccurate, as were all of Dr. Golfinos' notes. The notes are just the beginning of a story that I'm going to share, for there is more to this story that is now my life.
Assuming honesty and integrity were still such a thing, I, in the interim, filed a complaint with the hospital's internal investigation team. Naive me assumed they would read the emails that were sent back and forth and find Dr. Golfinos in gross violation of his oath as a doctor. They found that Dr. Golfinos did nothing wrong. Of course they did. They didn't read the emails. They only read his notes that inaccurately depicted my office visits.
For those unfamiliar with Trigeminal Neuralgia Anesthesia Dolorosa, it means I cannot feel the left side of my face, including teeth and tongue, and am always in pain. All three zones of my face are affected. The pain varies in intensity and, thankfully, I have tolerable days, but I don’t know what pain-free means anymore. Additionally, Dr. Golfinos, nor his nurse practitioner, Jessica Schafrick at NYU Langone, never mentioned this was a potential outcome. She's another nightmare story in and of itself and is deserving of an entire chapter in my book. Talk about lack of compassion and hostile. I could feel her eyes rolling as I read her emails to me. Dr. Golfinos did apologize for "failing me as a patient," but is sorry enough? Does he—do they—truly understand what they've done to my life? They will never.
... to be continued
It was the summer of 2016 when I first starting noticing something was off with me. I couldn't write. I would try to sign my name to receipts, etc., and I couldn't. I recall getting the check for a rather large bill and the waitress couldn't let us leave without my signature matching the signature on my license. I just couldn't do it. I hadn't been drinking, I rarely do, but I just couldn't get my hand to work. Thankfully, she saw that something was wrong and, after about twenty attempts, finally accepted my signature even though it looked nothing like what was on my I.D. From there, the symptoms progressed. I had no idea I was about to embark on the darkest, most challenging years of my life.
... to be continued.
Trigeminal Neuralgia Warrior
P.O. Box 1054
Island Heights, NJ 08732