Before I say anything else, I'd like to offer our sincerest thanks to everyone who has contributed to our gofundme campaign. People we know and love, long time internet friends and complete strangers.... thank you all for your wonderful generosity.
As a result we can now start the admin process and should soon commence the new treatment. We will therefore be closing the gofundme page. I will continue to post updates here, so if you have an interest in how it all pans out over the next couple of years, bookmark this page or subscribe to the blog and I'll keep you in the loop.
It's been an interesting few weeks, starting with my first ever visit to a vestibular rehabilitation therapist (VRT). This is something I've been meaning to do for a few months now. I have to say that, even at this early stage, I'm glad I went.
The primary objective of VRT is to compensate for the damage done to the vestibular system. Basically, for those of us whose bodies send us balance signals that are out of whack, VRT works to get your body to compensate for that through a series of "challenging" exercises.
The therapist appeared to have a good understanding of Meniere's (never take anything for granted!). After a good chat about my situation and expectations, she seemed more than a little relieved that I didn't expect her to "cure" me. I'd be happy if she could, don't get me wrong! In this case I'll settle for a bit of assistance.
Here's something to ponder: Not one ENT of the four I've seen in three states ever mentioned vestibular rehab.
Not one. Fortunately for me I currently see a thorough and thoughtful GP who suggested VRT. Hooray for her.
So... after a series of tests designed to challenge my balance (which was good considering how long I've had Meniere's, but kind of shit compared to mid-20s me), the therapist placed blacked-out goggles over my eyes. Comfortable enough that this wasn't some sort of prank involving D grade celebrities, fake blood and cries of "gotcha!", I trusted the therapist's instructions. The mask experience involved a lot of head wobbling. In fact, VRT in general seems to be about head wobbling. Being a VRT therapist in India must be bloody frustrating.
Back to the blackout mask. Little did I know, there was a night vision camera built into the mask that recorded my eye movements. Turns out I have nystagmus. It's involuntary movement of the eye; Wikipedia has a good GIF in case you're curious to see what it looks like:
http://en.m.wikipedia.org/wiki/Nystagmus
To see my own eye do this was fascinating. It also explains why I occasionally feel like everything is in motion, despite not feeling much vertigo, even with my eyes closed. Fortunately for me it's milder than what you see in that GIF, and usually happens in response to over stimulation. In fact it happened just now as I skimmed my eyes over the letters on the screen. It feels a bit like someone is shaking the TV screen at the back of your head. Hey, here's another curious fact: In nearly 10 years, not one ENT explained to me what nystagmus is, or even acknowledged its existence, until this year. Even then it was just the surgeon ticking off a box of symptoms.
I don't want this to turn into an ENT bashing session, because it's not meant to be. Surgeons in general are very intelligent, highly skilled people who know waaaaay more about the human ear than this here mouth breather. But they are still people. People can be stubborn. And people can be forgetful. So don't assume that any one person you speak to is the font of all knowledge. Doctors are people and straight up forget stuff. Ask questions and don't be afraid to sound silly in front of a surgeon. Sometimes they'll be grateful for the company.
So back to the therapy and the head wobbles and the spy goggles facing the wrong way. I now have a series of exercises I need to do each day, designed to challenge my body into compensating for the damage to my ear's balance systems. It involves a lot of looking at small crosses and wobbling my head while standing on one leg. Like a sobriety test home kit.
It sucks. It makes me feel sick and I don't want to do it. I mean, who wants to feel sick? Screw that.
But I want to keep the balance I have. I want to humiliate my kids at sport when I'm in my 50s. I want to run away from the boogieman in a dark house without thinking I'm going to break my nose on a door frame.
So I'll do the stupid exercises and let's hope they really help.
For all of you who supported our efforts to raise funds to start the Stephen Spring treatment program, we are now at the stage of discussing blood tests with doctors. Once we get further into this I will be able to share more information about my health. Please bear in mind that I am legally bound by a nondisclosure agreement that prevents me from discussing the substances used in the vaccine. I will however keep you updated on when I start the treatment and how my body responds over time. With luck it will, in the long run, be a good news story!
In other news, my football team are in rebuilding mode (this means we missed the finals). I have decided to grow a beard. I await my wife's punishment, which will be both subtle and severe.
