My life has taken on a surreal quality. You know that quote that says “Life has a way of testing you by everything happening at once, or by nothing happening”? I seems to have trainwrecked into *everything* happening in pretty short order.
The whole thing started back in March when I mentioned to my pain management doc that my neck wasn’t responding to the latest “shots”. (Decipher as: I have Degenerative Disc Disease in C5 & C6 in my spine and the procedure to “burn” the nerve in November wasn’t as successful as I would have liked) so she referred me to a neurosurgeon to see if there were any surgical options. He looked at my latest scans and examined me and decreed that there wasn’t much he could do surgically for my neck, but ordered a brain MRI and moved on.
It took 6 weeks for me to convince all the necessary parties to get their ducks in a row, referral acquired, appointment made….and finally I had a brain MRI at the end of May. In the midst of all of the fun, I was also following up and getting a referral to a neurologist. After 6 weeks of chasing down various parties and information, everything just sort of came together in the same week, two weeks ago.
I got in to see the neurologist who spent 2 hours going over everything, completing a neuro exam, and reviewing my file, symptoms, & medications. Finally she pulled up the report from my MRI and that’s when everything started happening at a quicker than normal pace. (If you have *any* experience with doctors, tests, etc you can imagine what the normal pace of it all is, and recognize when it speeds up.)
My MRI had come back with an abnormality in it. The radiologist spotted something called a “meningioma” and recommended a second MRI with contrast and ” I A C Protocol”. I had the referral and appointment for the second MRI within the hour.
I spent the next week learning what a meningioma is. You can follow the link to learn more, but basically it’s a cluster of cells behaving badly and it’s found on the lining of the brain. It’s thrown in with the rest of the brain tumors, but it’s not technically a brain tumor because it’s not comprised of brain tissue. I take a lot of pride in being an informed patient and in my research skills, so I have spent the last few weeks learning all about a new medical specialty.
*Quick side note: in the middle of ALL of this, hubs and I went under contract to have a house build and my 14 year old Border Collie passed away….(meaning inside of 30 days….contract to build a house, poochie passes, and I get diagnosed with a brain tumor, hellava year!)
So….pant, pant….I finally get to the point of it all. Ten days ago I went in for my second MRI with contrast and doc’s orders for a couple of specific views. I have spent the last week chasing down the report. See anything …..interesting?
I got a hold of the report today, and very shortly after the nurse from my neurologist called. That little white spot in the middle, on the left? That’s my meningioma. It would appear that I have a 1.5 cm long x 5-6 mm thick meninioma sitting on my left fifth cranial nerve and my next step is to have it surgically removed.
These are 3 of the 300+ pictures from my last scan and it shows the tumor (or as it’s occasionally referred to, lesion) on 3 levels of the scan and indicates that it’s pushing up against one of the 12 cranial nerves. The fifth one to be exact. (The link up top explains what that particular nerve does).
So, all of a sudden my life includes neurosurgeons and information on something only about 6500 people in the US are diagnosed with annually. When you take notice of the fact that the tumor is on the fifth cranial nerve, that number drops to 0.2% of diagnosis each year.
The good news is I finally get to take something to my doctors that they can identify and (hopefully) cure. The interesting news is that I have still found a way to be a rare case. And the less than good news is that I’m looking at brain surgery very soon. I’m going to do my best to document and share as much of the journey as possible. I’m finding a lot of info, hope, and inspiration in other stories that have already been through this and I’m hoping to do that for someone else.