I never thought I had a Brain Tumor, well, I did rationalize that it was within the realm of possibilities. I had a 5+ year history of many/most of the symptoms that we seem to share. Vertigo, Perceived Motion, and many common “Migraine” symptoms too.
Never sought any medical care or diagnosis for my symptoms, seemed to get by on using Meclizine periodically at first, then during the 18 month or so before my eventual medical consultation i used it very frequently. I was able to go so long because I had symptoms that would leave me with periods of “Normality”.
In late 2016 I had a period of constant severe Vertigo syndrome symptoms and it culminated in a weekend long severe unrelenting episode that finally led me to make an appointment to see what was going on.
My Primary Care doc was stop #1. She seemed to think that there were a lot of possibilities and decided to make many referrals for various tests. Including but not limited to a FULL Cardiac work up including an Exercise Stress Echo, 48 Hour Holter Monitor Test, a series of Blood work that was HUGE.
Based on early test results and best guesses by my Primary she referred me to an ENT Doc, a Neurologist, and a Rheumatologist. All had waiting time for visits in months.
She on her own accord ordered an MRI of the Brain. That was on 02/11/17. The Neuro-Radiologist modified the test order after the first few minutes in the Machine. My 30 minute MRI turned into a 1.5 Hour long one.
Two days later my results posted to my Online account to see your test results. The finding were:
- There is a linear zone of encephalomalacia, gliosis, and hemosiderin deposition in the right
posterior medial temporal lobe including the posterior parahippocampal gyrus and lingual gyrus from chronic hemorrhage
- Asymmetric enlargement of the left geniculate ganglion indicating the presence of a small facial nerve hemangioma or schwannoma.
I eventually had my appointments with ENT and Neurology and was also given a Migraine with Aura diagnosis as well. ENT chose the Vestibular Migraine, Neuro used Migraine with Aura. ENT also diagnosed sever Eustachian tube dysfunction as well.
My first followup MRI is in a few weeks. The tumor is small enough now that watch and wait is my choice for now. I am likely to be offered Tubes in right ear for ETD.
Strange thing is that my Vestibular Migraine symptoms have very gradually improved. I went through several meds and have now gone Med free and seem to be doing okay most of the time. Not completely normal but better.
My thoughts on the Vestibular symptoms have evolved over time. I originally thought Menieres. ENT and Neuro think it is Migraine. ENT does not think the Tumor is the cause of those symptoms at all.
My thinking has mirrored James (turnitaround) line of reasoning and yet I am not at all comfortable with a FINAL declaration of certainty of WHAT IS WHAT. Time has changed my views, as well as my symptoms and I feel that that will likely be a life long process.
Thanks for listening to my rather long Vent. Don’t Give up.