I survived the procedure. Even though it was non-invasive they still consider this a surgery since it messes with your brain.
Two days out I feel like an alien is controlling my right hand and it's taken quite awhile to go back and fix all the typos in these last three sentences so this post will be short.
It was an intense experience and not something that I'm looking forward to repeating. Having my head shaved wasn't a big deal to me but when they injected anesthetic and began screwing those 4 pins into my skull to hold the halo frame I about freaked out! Even with a dose of fentanyl I could hear and feel them screwing these into my skull. Talk about creepy!
Once they put me in the hybrid MRI machine and began the process of mapping out where to zap my brain it was another 3 hours(including a follow up regular MRI afterwards).
With each "zapping" I got nauseas so they pulled me out and put Zofran into my I.V. line. I am not prone to being nauseas but I did get very queasy with this treatment
We got to the hospital at 6:00 am and left for home at 1 pm-ish. I was wiped out.
Yesterday was had to go to Walmart and Aldi. I need to use my sister in-law's walker as I find my gait is off and I lean to the right when I try to walk. Trying to write or type is difficult for now too.
One side effect that seems to be pretty rare(figures I would get that one)is that food and drink tastes different. If you blindfolded me and fed me something, I'd have a hard time telling you with any accuracy what it was in my mouth.
The neurosurgeon was sure I'd get headaches from the procedure since my skull was NOT on the thick side but borderline on the thin side. Never got a headache though. But I got a nice burn on my skin where they focused all the ultrasound waves.
They zapped me four separate times after mapping out where the placement should be. Each session I felt like Alice falling down the rabbit hole since your laying in a white tunnel so it's fairly disorienting to begin with. This procedure heats your head up to 55 degrees Celsius and I could sure feel that too.
That's the left side of my head since the mirror makes it look like the right.
I'm on a steroid pack and just OTC pain meds.
This Focused Ultrasound doesn't cure Essential Tremor. It's just a way to ameliorate the symptoms that is non-invasive, unlike Deep Brain Stimulation where they cut you open, implanting a pacemaker like device in your chest with electric leads up into your brain.
They don't know what causes ET nor do they have a cure. They use anti-seizure drugs as a first defense but DBS and FUS are the only other options. It's an autosomal inherited chromosome disorder and if you have a parent with it you have a 50/50 chance of getting it.
So now, like a toddler, I have to relearn how to walk properly and learn to eat, write, etc. with my "new" hand, which so far, an alien is controlling. It will take time to relearn and stabilize,
Here is my "Before" and "After" treatment paper.
If anyone wants more information about my experience just contact me.
Sluggy
