How It All Began....
It’s hard to believe this whole this started as some ringing in my ear. It wasn't constant. In fact, in the beginning was barely enough to be noticeable. It would come and go, lasting a few minutes, and over time it started to last longer and longer. Eventually the day came that it just never went away. I could hear my heart beat inside my ear. What was just annoying at first became constant and so loud that I couldn't focus on anything else.
The first time I went to the doctor they told me it was likely related to seasonal allergies and since it wasn't bothersome, they wouldn't worry too much about it. Fast forward 4 year and the ringing is so loud I can't function, I have a headache that never goes away, and I feel like I am on the verge of crazy, I FINALLY go back to the doctor and tell them this isn't allergies. My family doctor sends me to an ENT. They take a look and see fluid in my ear and decide it's an ear infection. Steroids, Antibiotics, Decongestants. 3 weeks later, no changes, I go back, they give me more of the same and say let’s try round 2. And again, NOTHING. When I go back to my family doc, she agrees there must be something more and sends me to a different ENT. He takes a looks, and says the same. This time I protest. WHOA doc... I've already been down this road. Can we try something else?? Take another look? Something? Please?
This doctor seems more willing to listen and sends me out for a CT scan. And the results come back clear. But he at least believes me that there could be something going on so he sends me to ANOTHER specialist. Who sends me for MORE scans. 2 CTs, 3 MRIs, a Brain Scan, a Lumbar Puncture, several hearing test, a consult with a Neurologist, a consult with a Neuro-ophthalmologist, and a consult with an Interventional radiologist to be exact. And to our surprise, there is something wrong. Several something's actually.
1 - My Cerebral Spinal Pressure is off the charts high, putting significant pressure on my brain and spine. It's also putting excess pressure on my optic and auditory nerves causing hearing and vision loss.
2 - There is a hole in my skull. And that hole is letting all the excess spinal fluid leak into spaces it shouldn't be leaking into. Like my sinus cavities and into my ear (so it looks like I have an ear infection).
3 - All these little somethings are causing damage to some of the blood vessels in the head that could require treatment later down the line.
And if all this isn't problem enough, apparently my body is a medical anomaly in its own right and my blood doesn't flow like "normal" people, making any surgery more complicated and a high risk. But Surgery is the only way to fix it, so surgery is what we will do.
