This is a very odd post that I never thought I'd write. I have a tumor growing out of my 8th cranial nerve, pressing on my brainstem, Also, because that isn't exciting enough, I'm pregnant with my second child. Fact is often more ridiculous than fiction.
The Path to Diagnosis
I think it's important to share this story, in case other people develop similar symptoms and have doctors who also don't take them seriously.
My first clue something was amiss was in July of 2016. The right corner of my mouth felt wet and cold, even though it wasn't. The odd wet feeling came and went over the course of a week, then vanished. I didn't see a doctor since it went away on its own.
A month later, I was vacationing and enjoying some amazing coastal shellfish. The right side of my tongue started going numb and I feared I developed a shellfish allergy. For the next several months I avoided tasty, tasty shellfish.
In January, I found out I was pregnant with my second child. I was very happy, until the weird mouth feeling came back accompanied by cold sensations on the right side of my face. I saw my GP, who basically said, 'I don't have any idea what's wrong with you, but I'll give you a referral to a neurologist'. While waiting for the neurology appointment, I developed subtle tinnitus in my right ear.
The initial neurologist I saw was terrible, and if you're Rochester, NY looking for a neurologist to avoid, I will happily give you his name. He insisted I didn't have MS repeatedly, even though I never asked about MS. He said I couldn't have a tumor because the symptoms wouldn't have faded. He said if I wasn't pregnant, I could have an MRI immediately, but since I was, I had to wait until after I delivered in September, (this was January). He proceeded to rattle of a long list of causes ranging from vitamin D deficiency, hormones or a dental issue. The he stated nothing was really wrong with me because I only had one symptom. My MRI was scheduled for October and I was sent on my way.
As anyone who knows me can tell you, I'm very stubborn. Not happy with this lack of diagnosis, I explained my concerns to my midwife at my next obstetrician appointment a few weeks later. I was told I could absolutely have an MRI, and it was one of the safest scans you could do during pregnancy, (without contrast of course). She referred me to a perinatal specialist and also cleared me for a dental xray. I had my dental xray, which showed nothing wrong. I met with the perinatal specialist who referred me to a neurologist. I waited another week and a half.
The second neurologist thought my symptoms warranted investigation and scheduled me for an MRI. Two weeks later, it was revealed I had an acoustic neuroma/vestibular shwannoma. Growing out of my acoustic nerve, it's about the dimensions of a large grape. Though the tumor itself is usually benign, the location is very nasty, placing it alongside of the vestibular nerve, the trigeminal nerve, and next to the brain. As you can see from the MRI, mine is pressing on my brainstem, which is the source of my symptoms. Being pregnant, my treatment is delayed, though I'm under close monitoring.
What can fans do to help?
I don't need any sort of fundraiser to pay for treatment. What I really need is patience from fans. I know it's not atypical to wait two years for a sequel, but it's been hard on me because I really want to tell you the rest of the story.
I have already received kind messages about Centernia. I appreciate the emails, comments, and fan art. It means a lot to me! If you would like to do something more active to help, take the time to write a review on Goodreads, Amazon or any other outlet that reviews books. These reviews help Centernia grow!!!
If you happen to be a convention dealer or artist and would like to help sell Centernia, please contact me. I won't be able to do as many shows in the next year.
The State of the Sequel
I'm editing every day. At the moment, I'm grateful that my symptoms are very mild. I'm much more fearful of my treatment, which can cause migraines, headaches, deafness, facial paralysis, vertigo and balance issues. I'm really, really, trying to finish this book before I get to that. I also could be lucky and have minimal side effects. We don't know if the tumor will grow in the next several months and how difficult it may be to treat. I'm going to remain optimistic, simply because being miserable really won't help anyone. I appreciate the everyone's concern and understanding. :-)