I apologize in advance for what will be a fairly long post...
So, a few of you may remember me from when I first started coming around here 3 years ago, seeking answers about radiation treatments for my AN.
As an orchestral musician, my primary concern was attempting to preserve both hearing and facial nerves in "killing" my tumor. At the time my tumor measured approximately 2 cm (20mm) and after my treatments my radiaton doc felt the tumor was not going to grow, etc., and said I could go from having an MRI every 6 months to doing annually.
In the meantime, however, I had begun to experience some hearing loss. My ENT felt it was due to the radiation "burning" my hearing nerve and I tried to use a hearing aid, to little avail. So I decided to retire from the symphony at the end of the 2015 season, and then decided to move out west to be near my family. If I wasn't going to be playing in the symphony, there was little point in being 1000 miles from home. So I moved out to Phoenix where my sisters live (mom & dad are in Albuquerque).
I guess that during this time my balance issues, which I'd felt to be mostly minor but more or less to be "normal" for an AN patient, had been slowly getting worse until my younger sister felt I needed to be more proactive about following up on things.
I've only started to establish with new docs out here and hadn't actually seen a neurologist yet, though I have an appointment actually set for the end of July...
So, the other night, last Sunday, as a matter of fact, I found myself on the floor of my apartment (I didn't fall, but I 2as on my knees and couldn't get up) for hours. When I was finally able to get up (called my sisters, they ended up calling the paramedics), my younger sister felt I should go to the ER because she felt it had to be related to my increased unsteadiness she'd observed in me.
So at the ER, I had a CT scan which showed an increase in my ventricles and a build-up of csf. They suggested either going directly to the hospital or going home and following up with my PCP to get in go the hospital.
So I went to the hospital, which ended up being St. Joseph/Barrow Neurological Institute, of all places.
There was some discussion about how serious my condition is (have to have surgery right now? Should they discharge me and have me come back?), but in the end they decided to keep me here and wait to get me on the surgical schedule.
So now my surgery is scheduled for Tuesday, the 7th, as in, the day after tomorrow! Since I've already list most of the hearing in my ear, my surgeon, Dr. Randall Porter, will be using the translab approach, to try to preserve the facial nerve.
I know what I know about it from what I've gleaned here and through the AN FB group, so fortunately I'm not blind Bout it, but it is something I didn't think I'd have to deal with.
The tough part is that I've been lying around in the hospital while my parents, who came out right away, and my sisters have been trying to figure out what needs to be done all around me (feeding my cats, cleaning my place, etc.)
Anyway, just wanted to keep you all up to date on my journey. I thought I was done with this thing--even to the point where I said, only weeks ago, "I don't need to be undergoing treatment--I've already been treated for this thing!"
Well it has grown from its original 2cm to approximately 3.5cm, and the CSF blockage is apparently a fairly new development as well.
I had an MRI in early March that didn't seem to mention enlargement of my ventricles, but the enlargement was visible in the CT scan as well as, apparently, the fresh MRI I had done last Tuesday morning after I was admitted here.
Now I have to prepare for a NEW new normal...
Thanks for reading.
