An Essential Tremor Journey. Decisions, decisions…

Well, I had my initial evaluation for Essential Tremor treatment using DBS by one of the neurosurgeons at SLU (Saint Louis University) hospital and he has now referred me to the neurosurgeon that would actually perform the procedure.  And they’re sending me to a neuropsychologist to make sure that I’m actually ok psychologically with proceeding and to deal with any anxiety I may have about the procedure.  Truth be told, I’m not ok at all with proceeding!!!

Let me back up for a minute.   Essential Tremor is the most common movement disorder, affecting roughly 3% of the population (about 10 million people in the US).  It’s a hereditary neurological disorder that causes involuntary and rhythmic shaking, typically in the hands but it can also affect the head, voice or other areas.  Remember Katherine Hepburn’s shaky voice as she got older?  ET.  My ET started rearing it’s ugly head in my 40’s, which is pretty typical, but in some cases it appears much earlier.  There is no known cure and it usually worsens over time.  Socially anxiety compounds the tremors.  From WebMD:

“Unlike the tremor of Parkinson’s disease, the shaking in essential tremor gets worse with anxiety and with simple activities like writing, eating, drinking a cup of coffee or dialing a phone. Shaking in public makes the person embarrassed, which in turn aggravates the tremor, creating a vicious circle.  As a result, people affected with essential tremor often avoid eating out, attending parties, and participating in other social functions.”

That pretty much describes me.  Not fun.  You feel like every eye in the room is on you and it makes the tremor even worse.  As I’ve gotten older I’ve become more and more uncomfortable being around large groups of people anyway.  Throw ET into the mix and I feel like I’m gonna come unglued!

Treatment typically begins with medication, with first line drugs being Propranolol (Inderal – a beta blocker) and/or Primidone (Mysoline – an anti-seizure medication).  I tried both of those and saw very little benefit.  In fact, we pushed the dosage of the Propranolol to the point where my blood pressure was so low that my neurologist felt it was not a good idea to continue.  Next, we tried Gabapentin (another anti-seizure med) which had absolutely no effect.  Next came topiramate (Topamax) which did help reduce the tremors slightly but the side effects were too severe.  I felt like a vegetable.  Tired, brain fog…I couldn’t function.  In rare cases, cases where people suffer severe anxiety because of ET, Xanax or Klonopin are prescribed but considering that these can be addictive, I wasn’t about to go there.  So we decided to proceed with the evaluation for DBS.

For those not familiar with DBS (Deep Brain Stimulation), it basically comes down to having two wires inserted into a region of the thalamus deep in the brain.  These wires are ran under the scalp, down the neck, over the collar bone, and attached to a pacemaker-like device implanted in the chest.    The current sent back to the brain counters or blocks the “misfires” that are causing the tremors in the hands, head, voice, etc.  The current sent to the brain can be regulated by making adjustments to the “pacemaker”.

I suppose they turn it up until the tremors subside or your head starts flopping around!  Joking aside, statistically, the risks are very low (approx 5% or less) – things such as infection, bleeding on the brain/stroke, hallucinations, persistent headaches, problems with gait, among others.  They claim up to approx 90% reduction in tremor, though that can lessen slightly over time.  The procedure is supposed to be reversible should serious complications arise but that doesn’t go very far in stilling my fears.  There are other things to take into account as well.  I would have to go in once every four years or so, have my chest opened up and the battery replaced.  A rechargeable unit is available which is supposed to have about twice the life span but you have the hassle of actually recharging the thing.  A huge concern for me is the location of the implant and how that might impact my ability to backpack.  From what I’ve read and seen, a pack’s shoulder strap would run right over the top of the thing.  NOT GOOD!  It could potentially cause some major discomfort, damage to the device or dislocation of the leads going to the brain.  And if I can’t backpack because of this then I’m not going to go through with it, at least not yet.  There are guards available that cover and help to protect the implant.  Think athletic cup for the chest!  That’s a possible solution.  Additional padding in the shoulder straps may be another.  I’m still researching.  And again, I still haven’t talked to the other neurosurgeon or the neuropsychologist so we’ll listen to what they have to say and go from there.  Saint Louis University Hospital alone performs on average one DBS procedure every week with the intent of doing more so that says something about it’s success.

An alternative to DBS is MRI-Guided Focused Ultrasound.  This involves high intensity sound waves being concentrated on and ablating (burning) the area of the thalamus responsible for the tremor.

It’s totally non-invasive.  No drilling holes in your skull, no wires stuck in your brain, no device implanted in your chest.  There’s very little to no recovery time involved.  No going back to have a device programmed.  No having to open your chest back up to replace batteries.  But it isn’t reversible.  Since the area treated is destroyed there’s no going back so there’s always the risk of adverse effects that can’t be reversed.  Since this procedure hasn’t been in use as long as DBS, the long-term benefits and side-effects are unknown.  Time will tell but it seems very promising.  From what little research I’ve done I’m getting conflicting accounts as to the reduction in tremor but either way I’m interested in finding out more.

Another option is injections of Botox in the arms.  Apparently this does help some people but you have to go back every three months for another round of injections.  One of the possible side-effects is less grip strength and considering the nature of my tremor and that I’m already having things mysteriously just drop out of my hands, it was not recommended.  This is something that I’ve been noticing more of the last year or so.  My grip strength is just fine but occasionally I’ll pick something up and it’s like my brain flips the switch that tells my hands I no longer need to hold it.  Bizarre!

Focused Ultrasound just received FDA approval for treatment of Essential Tremor in July of 2016 so it’s very unlikely my insurance will cover it.  I still don’t know if they’ll cover DBS, so all of this may be a moot point.  I can still write…if that’s what you want to call it…but good luck reading it.  I can still type for the most part, though using the numeral pad, which in my profession is a lot, is becoming a struggle.  I’m one of those rare types that is almost ambidextrous.  I write and use a fork and spoon with my left hand but do just about everything else with my right.  I can sort of write with the right hand but the tremor is worse in the right.  It’s severe enough in the left that my hand writing is becoming illegible.  I usually lift a glass with my left now because my right hand will shake so bad that I wind up spilling everything.  But the left isn’t all that much better.  I started using an electric toothbrush because I chipped a tooth and scraped my gums raw.  Shaving is a pain in the butt – I have to use both hands.  Trying to use a screw driver or drive a nail is always an adventure.  And I would love to make more of my own gear again for backpacking but you can just imagine what threading a needle or cutting material is like.  I have at least 12-15 years until I retire so being able to function on the job until then is a big deal.  I also need to remember my wife in this whole thing.  Depending on the progression and severity of the tremors, how will she be negatively affected?  To sum it up: ESSENTIAL TREMOR IS A HUGE PAIN IN THE ASS!!!

Ahhh…I suppose that brings me to the real underlying problem here.  Yes, it’s a huge pain in the ass and yes it can truly affect your quality of life but I really need to put things into perspective.  I will go on living whether I have whatever procedure for ET or not.  Being grateful for what I do have, making the most of what I have, remembering how fortunate and blessed I am, recognizing the plight of so many others for things far worse than ET – that’s what I need to focus on and I’m not doing a very good job of it.

More to come…

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