So, almost exactly one month ago, at the end of my work day, I was walking through my office, and turned a corner, and all of a sudden, I felt funny. Dizzy! It came like someone turned on a switch, and while not bad, was unpleasant. I drove home, and by the next morning, I couldn't move 10 feet without having to just lay down and not move because of the nausea from the motion sickness.
After an ER visit which included a CT scan (that showed nothing abnormal), I was diagnosed with a sinus infection, given some antibiotics and told to take meclizine and vallium to see if it helped, and sent home.
I had been dealing with some long term "weirdness" in my right ear. tinnitus, hearing loss, a sense of pressure, and audio distortions. This had been ongoing for about 4 years, but had come and gone a few times. About a half a year ago I had seen an audiologist who basically told me, "Yeah, something weird about your hearing on that side....see an ENT." And....I hadn't done it yet. As a single father of four kids, life was busy, and it didn't seem like a high priority.
But, after the horrible vertigo, I got right in to see a local ENT. His preliminary diagnosis was meniere's disease, but he ordered an MRI to be certain there was nothing unexpected going on. In the mean time, the antibiotics killed the sinus infection, and with that, the vertigo quickly went away. Victory!
A few days later, I had a very, very bad day that had nothing to do with my ear. My gall bladder, which had never given me any issues that I knew of, got quite angry. I ended up having an ultrasound on my gall bladder the same day as the MRI on my head. The ultrasound showed that my gall bladder wasn't doing me any favors, so two days later it was removed. During all of this time, I had no further issues with vertigo.
However, the next day, while recuperating at home from the gall bladder surgery, I got a call from my ENT's office. "The MRI shows that you have an intralabrynthine vestibular schwannoma measuring 4mm x 3mm x 4mm."
Fast forward a few weeks. I met with the ENT, who handled it quite well. I've done an enormous amount of reading, and have a pile of MRI disks ready to send out for doctor/medical team auditions -- I live in SE Wyoming, quite far from most of the well established practices for dealing with this, so I am expecting to have to travel _somewhere_. I just need to figure out where.
I have come to terms with this, as well as I can. I'm 43, single, with 4 kids for whom I am the primary caregiver, but I am also fortunate enough to have good insurance and a job that I can do anyplace that I have an internet connection and my laptop. My struggle now is with understanding the pros and cons of the various options that may exist for me. The ENT commented that it appeared that my tumor sits quite close to where the vestibular nerve goes into the semicircular canals, which may explain why such a small tumor is causing me so many problems. In any event, sorting out all of the information to truly understand the implications of surgery versus radiation, and what the current accepted best practice is for when radiation makes the most sense, or what the drawbacks of it are, long term, versus surgery, has been a slow and difficult process.
Figuring out who to send my medical information to has likewise been difficult. I have envelopes to House Clinic, Barrow Neurological Institute, Vanderbilt (I have friends who live relatively close to there whom I could stay with), and Stanford (my employer is in San Francisco, so that proximity could be helpful). However, I am really struggling to even figure out who else I should send information to, or how many different doctors/centers I should contact.
And that's me and my situation in a nutshell.
Kirk Haines
