April 25, First Programming session for DBS

Emotional Response: When we took Charlie’s mom to High Tea at The Empress Hotel in Victoria BC she exclaimed “oh my oh my”and “oh my”over and over again. She was absolutely delighted. Today I had the first programming session after my DBS surgery. My Movement Disorder Specialist Dr. Hiller, worked with me for about 90 minutes. And all I can say is Oh My!
I think it will be like peeling an onion, more layers and layers will be revealed as this device is tweaked and I discover what I have forgotten I was able to do. But I noticed, getting out of the car was not a struggle. I was up out of the car seat and walking. OH My!
Our God has been guiding me through this. I have been protected by angels, both heavenly and earthly. So many prayers and well wishes and visits and meals and kindnesses have been shared with me. And I am so appreciative….you cannot believe how much.

OH My!

This photo was taken a few days after my surgery.  Was it worth it?  At this point in time I say “You betcha!”

This is what happened: Due to an unforeseen event, Charlie could not escort me to Portland. What to do, What to do?  How about ask some friends to help?  I discussed this with a couple different Hermiston friends and finally concluded that if I could make it to Art and Rose’s house in Troutdale and they could help me negotiate the city traffic on Monday I would be fine. I often wonder if my friends know how important it is for me to be independent.  I am not foolish about it and I felt well enough to drive.  And so I did!  I waited for the wind to settle a bit and headed out on Sunday afternoon.  Art and Rose fed me dinner, gave me a comfortable bed and also  were able to assist me to the various places I  needed to go in the big city. All went well.

I met with Dr Hiller, my Movement Disorder Specialist  for the last 8 years, at Oregon Health and .
Sciences University  9am Monday. She appeared with a first year med student on her heels and a small tablet like device.What follows is my very simplified account and may bare only some resemblance of the actual procedure!   My Doctor looked at the locations of the incisions and commented on the job well done by the surgical staff.  My only point of discomfort has been the neuro stimulator, the thing I have calling and will continue to call the  generator, which is implanted below my left collarbone. Hmm she noted that is was also a “job well done” and “many  people have this device quite more noticeably protruding”  which I took to mean there are folks out there more  uncomfortable than you Carol.  So I guess I should feel lucky ??? Dr Hiller expertly ran her handheld  device through its paces and checked out my implanted device.  Then she started working on which of the leads (implants)  to be used.  She asked me what I was most bothered by and I commented #1 being stiffness and rigidity and #2 being tremors.  So she started manipulating my right wrist and arm and upping the amps on her device.  She had forewarned me to comment immediately on any strange feelings I had.  Shortly thereafter I experienced bright flashes in my right eye.  She backed the “amps” down until no secondary effects were noted and my wrist and arm were quite flexible.  She completed this a a few more times and my tremors disappeared.  Next was the left side. I was aksed to flick my fingers and as she “amped”up my cheeks began to feel like I had been shot full of Novocaine.  Again, she backed off and asked me to flick my fingers, which were sometimes most wonderfully coordinated and other times an uncontrolled mess of fingers tangling with each other. Soon, that setting was reached.  I was asked to demonstrate walking for the Dr. and med student.  I did pretty darn well, yet after sitting for awhile the stupid sciatic nerve wanted to act up.  I couldn’t really show them my stuff.  Dr Hiller asked me what med I would prefer not to take anymore.  Of course that would be ropinerole.  We made a plan  to delete this drug, and also to decrease the carbo-levo.  The good doc carefully recorded all the settings.  Told me not to leave town for a day to be sure I was ok with the decreased meds and new settings and made plans for the follow up appointments. Before I lft she demonstrated my personal hand held device which would be used for daily device generator checks, powering up and possibly programming changes.

Tuesday I woke up early and had a busy day until I finally left Troutdale around 3 pm.  No naps.  I drove straight through to home,  Awake, comfortable and confident in my driving..  Way cool!.
I know this process is going to take more time.  But truly, it is amazing!

One response to “April 25, First Programming session for DBS”

  1. Wow! So happy for you. The technology is amazing and so are you for having the courage to seek it out. Hang in there. You're blazing trails for many others.

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