In mid-1999 I noticed that I was having trouble hearing on my left side (sounds seemed "muddy"). I went to a very astute ENT, who ordered an MRI. Apparently, bilateral hearing loss is nothing to worry about, but it is something to be concerned about if the loss is on one side. I was diagnosed w/a meningioma, which is a benign tumor in the lining of the brain (can be anywhere on the brain). Mine was 2.2 cm (about 1"), and in a bad place -- pressing on five of the 12 cranial nerves, by the brain stem. The only option was surgery, based on the tumor's location. The risks (for me, based on its location) were facial paralysis, paralysis of my shoulders, inability to modulate my voice (which, as a singer, would have been life-altering), and hearing loss. I interviewed three different teams of surgeons (I needed a neurosurgeon AND a neurotologist, which is a neuro-ENT) -- two teams in NJ, where I live, and one at Memorial Sloan-Kettering, where a friend's daughter had just had similar surgery.
We fell in love with the surgeon at MSK (Dr. Phil Gutin) -- he was (and is) the chief of neurosurgery, and was a wonderful, optimistic guy. Though my tumor was probably benign, we thought that he was a good choice, since he had seen it all. My other surgeon (Dr. Sam Selesnick) was out of Cornell (they partner on this type of surgery).
My 6+ hour surgery went as expected, and MSK was a fabulous hospital. As a result of the surgery, I did lose the hearing on my left side, but it is almost a non-issue, even as a singer. I actually consider it a blessing, because the other outcomes would have been much worse for me. And my pituitary microadenoma was found in one of my annual F/Us for my surgery -- when examining my most recent MRI, my neurologist said, "Your meningioma is still gone, and your pituitary microadenoma is unchanged". To which I replied, "My pituitary WHAT?!" Apparently they missed it on the original films becase the meningioma was so big and obvious. I obviously wasn't pleased that they had missed it.
So, that's my story in a nutshell. I know that there are many wonderful neurosurgeons in NYC; I have been the "go to" person for any friends of friends/family who are diagnosed w/a brain tumor (which sadly, is not that uncommon). If you want to talk privately, I'd be happy to communicate with you and/or your DS either via e-mail or phone. I understand that you are concerned (I found that it is often much more difficult for those around the patient than for the patient -- my husband and mom had a really rough time).
Best of luck to your DS (and you!); let me know if you want my private e-mail or phone #. And you were right to reach out to Minna -- she is brilliant!
Last edited by EllenNJ
on August 13th, 2012, 3:40 pm, edited 1 time in total.