On Jan 31, 2019, I became the 120th patient at Toronto’s Sunnybrook Hospital (and ~3000th worldwide) to have a new treatment called MRI-guided Focused Ultrasound performed to address my worsening, medication-resistant Essential Tremor (ET).
This is a scalpel-free surgical procedure that Sunnybrook brain scientists pioneered in 2012.
The hope for anyone receiving this operation is that it will remove, or at least slow the progression of, the tremor for the side that is selected for treatment (right side, in my case).
That was my hope, too. And further down, I’ll explain how SAP plays into my wellness journey.
How it works…
MRI-guided Focused Ultrasound for the treatment of ET takes about 3 hrs and is performed while you lay in an MRI machine. In my case, the neurosurgeon created a 7mm lesion using 900 ultrasound beams all trained in one spot – the group of neurons in my brain that were emitting the errant signal that caused tremors on the right side of my body.
At 54 centigrade, the misbehaving neurons were obliterated (little white spot in the image below), and surrounding healthy neurons took over instead.
A couple times during the pain-free procedure, the neurosurgeon came in and asked me to perform the same dexterity tests I performed pre-surgery to ensure they were zapping the right spot. Eventually, my hand moved through the tests without any shake whatsoever. AMAZING.
My right side is now free of tremor, and I’m now able to write again, put a key in a lock, eat soup in front of people and lots of other things I had incredible difficulty doing before! The image below was me trying both print and cursive writing within couple hours of the procedure. I had forgotten my handwriting style, but my hand hadn’t forgotten!
I am temporarily without hair, alternating between a cold head because the hats itch, and between itchiness because the crew cut appearance still shocks ME to see! And this experience has taught me how small minded I am!
LITERALLY my head is SMALL.
For a little while more I must deal with some common side effects when swelling in the brain presses on the balance/coordination area. Essentially, I have the opportunity to know how I look and sound if I were to drink too much. The swelling causes the same effect as a few stiff drinks – except you are sober enough to be mortified by it 😉
On to why I love working at SAP..
My area of responsibility is kind of stressful, fast-paced, chaotic. Through it all I never got the sense that my recovery was less important than deadlines – and that really helped my recovery process. We have a huge release pending and the backlog to get through is daunting.Not once did I feel anything by encouragement, patience, and understanding – from my manager, my colleagues, HR.
SAP made it clear my recovery was the highest priority, and I was left to decide how best to resume duties..
WEEK 1 after surgery, I was at home, and by the end of the week was really only able to offer drunken-sounded utterances to my colleagues via Skype (no video because I essentially changed species while the facial swelling ran its course).
WEEK 2, I relearned to type (right hand), walk without creating additional bruises, and carry things more than 10 feet without dropping them (sadly my iPhone screen didn’t survive this ordeal). By the end of the week, I was able to work at the office a bit between snowstorms, and wrote flowery hellos on my teammates’ white boards. In the past, my whiteboard creations looked more like raisins and squiggles so it was fun to do this.
WEEK 3 saw me fully back – both at work and at functioning levels. I type slower than before, but it’s coming back.Each day I get better at things that require balance, coordination, and motor skills (which includes saying the letter S, believe it or not!).
Through the whole process I kept hearing “take the time you need”, “whatever arrangement you need”, and “you’re recovering so fast” – encouragement to not feel any pressure.
There is a chance that the surgery success may not last–it’s new, after all–and/or that some of the now minor side effects will be permanent. But the (current) quality of life boost was worth it. I was diagnosed in my 20s and have dealt with ET for a while now with no effective relief. I’d like a future 20-something who is just starting their career have more options than I did.
I also have the option to have the left side fixed as well. Jury is out on that one……
For now, though, I am just excited for the rest of the side effects to diminish.. and for my hair to grow back so folks will stop randomly petting my head like it brings them luck.
THANKS SAP – for being a solid supporter on my wellness journey!