After many months of waiting, I finally had my appointment with a surgeon to discuss DBS (Deep Brain Simulation) surgery.  This journey began back in June of last year when I underwent testing to verify if my tremors were indeed a result of Parkinson’s.  They are.

That process alone took weeks to schedule appointments with a specialist, set up a specialized nuclear MRI, and wait for results.  The process took so long that it ran into the new year (2022) due to the holidays.  Yesterday, January 5th was the beginning of the final step – the actual surgery itself.

The surgeon went over the procedure and explained in detail, what would happen and the timelines.  After a brief examination, and filling out some paperwork it finally came down to a “yes” or “no” decision.  I said, “Yes, let’s get this going.”

Step One – Mecical Clearance

The first thing I need to do is get surgical clearance from my primary doctor and cardiologist.  The surgeon wants to make sure he knows exactly what medications I take, what health issues I’m being treated for, and my overall health to undergo the operation.  At a specific time prior to the surgery, I have to stop taking certain medications.  Specifically, any medications that are blood thinners or over the counter vitamins and suppliments.  I have to stop taking any aspirin related products as well.  There may be other Parkinson’s related med’s I need to stop, but I will find that out later.

Step Two – MRI

I have to get an MRI of my brain to build an exact model for later use in the process.  The first MRI is a more detailed form in that it takes much finer incremental slices of the brain for more accuracy.  If you’ve never had an MRI or don’t know what they do, taking slices of the brain might sound strange.  It’s not.

The machine scans the brain from top to bottom in very small increments.  I’ve been told they can be as fine as .010″ thick, or less.   The thickness of the scan slices builds a much more accurate 3D model of the brain for later use during the first surgical step. 

So far, I’m waiting for the diagnostic lab to call and set up the appointment.

Step Three – First Surgery

DBS is a two-step process.  During the first surgery, approximately four  hours long, the patient is awake the entire time.  The reason being, the doctor and technician will ask questions of the patient to move his arms, hands, legs and to speak.  The patients reactions to these commands tell the surgeon if the wires are inserted in the correct location.

The process begins with the patients head being shaved and placed in an apparatus I call “the drill jig.”  It has some medical name but I’ve forgotten what it is.  The patient is in a semi-reclining position that allows the device to be placed on the skull.  The scalp is numbed to reduce feeling when the four adjusting pads are tightened against it.  There are also two locating devices that are placed in the ears to help hold and align the instrument.

Once the instrument is in place, a CAT scan is taken to be compared with the previous MRI.  The two scans are laid over each other to give the surgeon and technician a very accurate picture of the brain.  The device is aligned to the combined scans so very precise placement of small wires can be accomplished.  The area where the wires go leaves very little margin for error.  One or two millimeters off location can put them in a completely different portion of the brain that might  control speech, body movements or other functions.

As the surgeon explained, “the different sections of the brain sing a different tune from the area we want to target.  If we are off by one or two millimeters, we may be in another zip code entirely.”  The accuracies of the MRI and CAT scan are very critical to placing the wires in the right location.

After the CAT scan is taken and everything is ready to go, the surgeon will drill two holes in my skull.  I have tremors on both sides, thus the two holes and two wires.  As the wires are placed, I may be asked to move my hands, arms, legs, or speak so they can tell if they are in the correct location.  The technician monitors the process and can apply a signal to the wires to see if it reduces or affects the tremors.  The signals he sees can also be used as an indication of proper placement and a baseline for future adjustment of the device.

With the wires in place, two small caps (I call them plugs) are placed over the holes and attached to the wires.  The incision is closed and I will be taken to an ICU for an overnight stay.  They will monitor me for any brain swelling, bleeding or other complications.  When I am released, I go home for a week to let my brain rest and begin to heal.

Step Four – Second Surgery

One week later, I go back for part two of the process which involves attaching the wires implanted earlier to the actual control devivce (“the gizmo”) that will be placed under the skin at my shoulder.  I will be under anethesia for this process, and go home the same day as an outpatient.

A second incision is made behind my ear (on one side) to insert two more wires between the two caps and the control gizmo.  That device is battery powered and can be recharged using a special device that hangs around my neck like a collar.  The end contains the charger and lays over the implanted gizmo to recharge it as needed.  Older devices (and those from some other companies) had batteries that only lasted 2-3 years.  When they were depleted, the patient had to go into the hospital and have them surgically replaced.  The unit I will have allows me to recharge it without surgery for quite a while.

After a brief stay in the recovery room, I go home and rest for at least a month.  The device will not be turned on for at least that long to allow my brain to heal and for any possible swelling to go down.  No adjustments will be made until the swelling (if any) goes down as it would cause false or inaccurate inputs to be made.

Step Five – First Program Session

When the month is up, I will see my nuerologist for the first adjustment of the gizmo and to turn it on.  Only then will I begin to see any signs of relief from the tremors.  I understand, of course, this is in no way a cure for Parkinson’s – it is not.  But, it should give me a more comfortable, near normal life style and allow me to do things I have difficulty with now.

My nuerologist told me it might take two or  three adjustments several weeks apart to get to a place where I can finally do things without the tremors.  That is my ultimate goal, to get back to a place where I can use my hands again instead of watching them flop around like a fish out of water.  I have to focus on that and not the long, drawn out process it is taking to get there.

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