Hi Denise,
I had no choice but surgery either. I was diagnosed with a 5cm x 5cm AN in early August.
I'd been dealing with symptoms for some time, having lived with double vision since Jan. 2002.
I'm an athlete of sorts and had been running 5 miles per day and weight training so, although
the double vision was always there my equilibrium hadn't been effected and I could work around it. I'm also a musician and thought that the hearing loss in my left ear was due to loud music - I'd been playing 4-5 nights every week so it didn't surprise me that it was finally starting to wear on me. It wasn't until Feb. 05 when my equiibrium took a turn for the worse that I took action and had some tests done. My initial impression of my condition was either a brain tumor or M.S. back in 02, but because I had control of it through exercise and nutrition I thought I'd overcome it.
Last Feb I got worse and continued to deteriorate. When I was jogging downhill I couldn't
stop running or even slow down unless I grabbed on to something like a sapling or a street sign to break my forward momentum; I'd stagger around like a drunk and could not, for the life of me, walk a straight line. Also, my hand writing was deteriorating.
Finally, I went for help. MY primary care doctors at Mass General ordered an MRI and the next day the phone began ringing off the hook after the results came in. The day after that, I found myself sitting in the Neuro-oncology department at Mass General waiting to see Dr. Barker, the staff neurosurgeon. He had said, after viewing the MRI photos, "This guy is still walking around?"
Both he and Dr. McKenna, the ENT surgeon, had never seen anyone with an AN growth that size. It would seem that fitness does indeed play an important role in one's survival.
I had two surgeries; the first being in mid-August where a shunt was installed to remove C.S.F.
build-up in my head. The tumor was so big it was compressing the briain stem and preventing
the fluid from draining. It was also pressing on the cerebellum and effecting my left side - I happen to be left-handed. I was in the hospital two weeks for that procedure.
The date for the tumor resection/debulking was set for Sept. 21st - 3 months ago.
During the interim - about one month - I had plenty of time to reflect on what was in store for me, i.e.: facial nerve damage, swelling of the brain, permanent deafness, problems with anesthesia, catheders, entubulation, etc.....lots of fun!! After having had a taste of what it was
going to be like with the shunt installation I was worried. The amazing thing was that after I was home for a week I was jogging and started playing my gigs again even though my left hand was somewhat impaired. I noticed that I was much more sure-footed than I had been but still impaired. That thing had to come out. I made a conscious effort to stay as fit as possible because I knew next surgery would be much harder to endure. I was right.
When I woke up in ICU I couldn't even utter a word. I was in for three weeks, two in the hospital and one in a rehab hospital, hobbling around with a walker.
I noticed that my double vision had kicked in in earnest - I mean full blown double vision. I wore an eyepatch every day. Also, there was what can be considered, some facial paralysis on the left side. It was like, and still is, like I'd been shot up with Novocain that never wears off.
I want you to know though that these problems have been improving little by little. I no longer wear an eyepatch, chew more freely when I eat and no longer requier a straw when I drink.
Last Monday, the 19th, I visited with Dr. McKenna, the ENT surgeon that worked on me. I asked him about my facial numbness again. He touched a place on my left cheek and asked if I could feel that. I could and he said that the feeling will come back in entirety. It could take up to a year but it will get better. It already is after three months. He also said that what I was feeling was from the "Trigeminal Nerve," which is responsible for sensation and not the facial nerve.
At the end of our session I thanked him for having saved my life. He said, "You have no idea how big that tumor was". He also said that he does fifty to sixty AN surgeries a year and has never seen a growth like the one I had.
Paul
