It's been awhile since I posted, but I'm back!
After months of what all of us know is an emotional roller-coaster, in May I finally put together treatment/surgeons/insurance and had retrosigmoid surgery on July 27 with Dr. Samuel Selesnick and Dr. Philip Gutin at Sloan-Kettering in NYC. Once I made the decision to go with surgery and not radio-surgery, I had to wait 2 months for the surgery date, and I lived with it for weeks before even telling many people. At that point, I just needed to withdraw to a "quiet inner place" to prepare myself. I cannot even say for certain what it was that brought me to the decision. So many people who know me (in-person) thought I was brave and business-like about all of it - but I SURELY was NOT - and this forum and every single wonderful person I've read about or had contact with has my heartfelt gratitude for their sharing and caring. I will never forget and hope I can assist others. I am more than willing to talk and share. My local ANA Assn here in NJ is a group of absolutely wonderful people giving unwaivering support and friendship.
At almost 3 weeks my recovery is going well. I'm up and about, not overdoing, and resting when I need it. At the end of my first week home I was able to begin a tiny bit of email each day. I'm still limiting that as I think walking and moving is far better for me than anything. I am beyond fortunate that my facial nerve is OK. I had no sign of facial issues going in, but my tumor was "sticky" and involved with the facial nerve, and much time was spent in surgery to avoid damage. I'm told they left a "trace" of the AN, but it's a "goner". My hearing was pretty good before surgery (82% word recognition), but when they tested the nerve upon opening they were surprised to get nothing, so they don't have much hope for that. Still, they worked hard and didn't sever the auditory nerve, just in case. I think I can hear a little bit, (dial tone on phone) but they both say that if I'm right and they're wrong, they will be delighted. I don't believe in being greedy, though it would be nice. My balance issues are not worse than before surgery; I would say they are better. I had balance issues for so long before I was diagnosed, I think maybe the vestibular nerve was pretty shot and my body had already done alot of adjusting. I didn't have any issue with it at all after surgery until the first couple of days after the steriods were done. At that point I had a couple of days of a mild headache and that old "floaty"feeling. I've had a lot of neck pain which has improved a bit; that and the head respond to Tylenol for now. (Sure wish I could use Advil - but the drs say not yet). I will have vestibular therapy too, and see how I do with that. My AN ear sort of "echos" and instead of tinnitus (my old summer night "crickets"), I can hear my heartbeat in a tinny kind of way. It reminds me of Captain Hook and the Crocodile. I miss the crickets!
To address the recent postings about "Post-Surgical MRI's" - I had an MRI the day before surgery, the day after surgery, and am scheduled at the 3 month mark to have a hearing test and another MRI. My doctors recommend long term continued follow-up with regular MRI's after surgery. Frequency w/be determined going forward.
I had two phones calls while trying to post this. I'm not even sure I put it in the right place! Thinking of all of you in your own journeys down this road.
