With my battery change behind me – a bit of unnecessary “excitement” amid the chaos of COVID19 – this cyborg is now powered by “rechargeable” batteries with a shelf life of up to 15 years. Yes! The much-welcome reprieve until my next battery change surgery is counterbalanced by the daunting reality of weekly charging sessions.
My bedroom has been transformed into a “recharging studio.” Each neurostimulator has its own charging equipment pack that hardly harmonizes with my country decor. Sitting on my nightstand are two black “antenna” devices that look like flattened hockey pucks connected to two “Patient Programmer” remote control units attached to power cables inelegantly draped across the floor.
The recharging process itself is rather cumbersome. To make a love connection,” the antenna device must be placed precisely and securely over the neurostimulator in my chest. I slip into the harness supplied by Medtronic, secure the straps across my chest and around my waist, then drop the antenna into the handy pocket on the harness and look, hopefully, for the suggested eight blackened bars on the patient programmer screen indicating the recharger is fully communicating with my neurostimulator. Absent these bars, I must reposition the antenna by fiddling with the straps.
Time to turn on the TV, find a nice long movie, sit back and try to refrain from moving for one hour until my battery is fully charged. Then, all I have to do is repeat the whole lovely procedure for my other neurostimulator. So far, it’s one side at a time but I’m hopeful I can map out a way to charge both sides simultaneously as patience is not one of my virtues.
CAVEAT: During charging, I look like a suicide bomber with the bold black harness holding the antenna device strapped across my chest and the handy Patient Programmer clutched in my hand. Lesson learned: NEVER, EVER charge in public…I’d frighten the daylights out of everyone around me!
Posted in Health
Tagged Activa neurostimulator, Battery, DBS, DBS therapy, Dystonia, Health, Involuntary movement, Medtronic DBS Therapy, Movement disorder, Neurological disorder, Neurosurgeon, Neurosurgery
Hollywood’s leading ladies have nothing on me and my starring role in a “surgical trilogy” featuring a brilliant neurosurgeon, his drill, cutting-edge guidance technology, and two electrodes taking a slip into my brain for an ongoing adventure of electrical proportion. Best supporting actor goes to the strong-armed “villain” in this medi-drama, the metal vise that fiercely immobilized me every step of the way. The hero, my Mount Sinai neurosurgeon, cool as a cucumber, assumed command over his troops in the OR. His team took no prisoners, bolting me to the operating table to set the stage for the drilling…but with my neurosurgeon controlling the scene, this dystonia damsel was hardly “in distress!” As for the “awake” part, our tete a tete during surgery was largely surreal as my “leading man” filled my field of vision during our big dramatic moment and I lacked a bird’s-eye view of the surgical scene. I’ve absolutely no recollection of the drilling.
Having considered – and rejected – DBS oh so long ago, I needed a pinch to jolt me into reality as we traipsed about the hospital – vise securely in place – on our way to a pre-op CT-scan. You’ll find my verdict – since overturned – on this site in the article “Promises, Promises.”
With DBS, the waiting is the hard part. Until that all-important first procedure set a bar on my expectations, my overactive imagination embarked on a joy ride over the prospect of two “awake” brain surgeries in the span of one month. For those Dystonia warriors considering DBS, rest assured that the “idea” of these procedures is far more daunting than their reality – especially that fearsome metal vise. After the numbing injections, it’s smooth sailing ahead. If you can handle life with dystonia, you’ve got DBS!
Once the surgeries are completed, this surgical thriller morphs into a tale of suspense. Stay tuned for my BIG MOVIE ENDING, dramatically revealed in 3 to 6 months…
My amazing Mount Sinai neurosurgeon is second to none!
Posted in Health, Life
Tagged Activa neurostimulator, Anxiety, DBS, DBS therapy, Deep brain stimulation, Dystonia, Involuntary movement, Medtronic, Medtronic DBS Therapy, Mount Sinai Hospital, Movement disorder, Neurological disorder, Neurosurgeon, Neurosurgery
I’ve been a blond, brunette and redhead. Now I sport a skinhead. At the altar of DBS, the sacrificial lamb is my hair. So how to make the best of my untenable situation when there’s no use crying over spilled milk? My go-to guy is my “secret weapon:” the handy PhD Dystonia forced me to earn in “Making Lemons Into Lemonade!”
Turning Lemons Into Lemonade never disappoints. I laud the virtues to be found in identifying positive outcomes for our negative situations without unduly minimizing our struggles. My friends may reassure me that it’s ONLY my hair – which will certainly grow back – but my solace hardly lies in downplaying the significance of our locks. After all, I’m a female with a telling history of life-defining dos. Rather, I find my comfort recognizing the importance of our hair by making a donation. With a few trips to Google, I’d surveyed the landscape and located a nonprofit, Children With Hair Loss, more than happy to claim my mane, chemical highlights and all.
For those about to part with their hair or seeking to lighten their load, check out the following organizations spreading sunshine with their good works:
Children With Hair Loss
Locks of Love
Pantene Beautiful Lengths
Posted in Health, Life
Tagged DBS, Deep brain stimulation, Dystonia, Essential Tremor, Hair, Hair donation, Movement disorder, Neurological disorder, Neurology, Neurosurgeon, Neurosurgery, Parkinson, Parkinson's, Parkinson's disease, Tremor
Here’s an attractive offer: Let’s shave off your hair, immobilize your head in a vise, drill a hole in your skull, insert an electrode into the right side of your brain, and wake you up for some fun in the sun before closing that hole. Then, invite you back to do it all again, left side this time – before implanting two battery-powered neurostimulators into your chest and snaking wires under your skin that enable us to activate those electrodes with electrical currents.
No, it’s not some twisted version of electric shock therapy but Deep Brain Stimulation (DBS) – perhaps not shocking your socks off but, hopefully, improving your neurological movement disorder, which is why you place that bet. Why not embark on a wild ride to slay the never-ending, hair-raising roller coaster commandeering life with dystonia?
Of course, your vanity interjects itself. After all, they’re shaving your head twice, replacing your lush – or not so lush – locks with a barren plain. As for the “awake” part, fancy chatting with your surgeon while he’s navigating an intruder into your brain. Then again, you find yourself trudging your way through your 30th college reunion, holding on to your walker for dear life as a once-familiar campus morphs into a forbidding obstacle course. Watch the impossible become plausible when mastering each step presents a triumph of will. Those looming procedures take on a whole new light, vanity and apprehension fading into luxuries you can ill afford.
All roads lead to Rome. Chin up, three surgeries, here I come!
Posted in Health, Life
Tagged DBS, Deep brain stimulation, Dystonia, Essential Tremor, Movement disorder, Neurological disorder, Neurology, Neurosurgeon, Neurosurgery, Parkinson's, Parkinson's disease, Tremor