My Deep Brain Stimulation: Part III

For the first two parts please scroll through March 2011.

Halleljula! Today I had the newly implanted devices turned on and had my first pass at tweaking the settings, To cut to the finish: my results were complete elimination of the painful dystonia (twisting and spasming of my right foot and leg), 50 % improvement in the tremor on my right side (my worst side) and about 75% improvement on my left side. These results are without medication! I enjoyed my first latte without a straw and did not spill a drop. I literally cried with joy!

The tweaking to find just the right settings will take another few visits. After  1 1/2 hours of this visit I had to stop because of exhaustion. I was beginning to get headachy and nauseous. The procedure is: I was not allowed to have any of my Parkinson’s medication after 9:30 the night before. I arrived at my neurologist’s office in the hospital at 9:30 AM with my wonderful husband and was met by the doctor who as going to do the testing (the same doctor who tested me originally to determine whether I would be a good candidate for the DBS surgery). She took us into an examination room and explained what she was going to do. Each of the two electrodes in my brain has four nodes (0, 1,2,3), each of which can have multiple setting for voltage and frequency. She would test each node to see what was best and I was to report any unusual sensations.  Then she did an exam and videotaped me (seated and at rest and also walking). Then she draped the magnet, which would be used to turn on and program the device, around my neck and placed over the battery on my left side. The battery on the left side controls the electrode which is in the left side of the brain which in turn controls the right side of my body (my most affected side). My husband had been expecting to go into a room full of machinery and to have me studded with electrodes so he was a bit surprised. But I was not (having done a ton of reading).

After entering a bunch of data she said she was going to turn on the equipment. I must say I was quite disappointed when nothing happened. She upped the voltage — I felt a lot of tingling in my face. And so it went on with me getting ever increasing electric tingling at times. Once it was so severe that the right side of my face twisted into a horrible lop-sided grin and I could not speak. We quickly backed out of that setting. Eventually we found a setting which got much of the desired result with no side effects. We then moved to the left side.

We did a new scoring of my symptoms which had reduced from 41 to 20 without medication.

The continual barrage of side effects was getting to me — I was very tired so we called it a day once we found reasonable settings and I was allowed to take my meds. I was advised that I might experience increased dyskenesia (involuntary movements) and if so I should reduce my medications. I was asked to wait in the waiting room for 1/2 hour and then I was to be reexamined.

After my 1/2 hour wait I was seen, examined, and videotaped by the same doctor and by my regular neurologist. We all agreed that the day had been a success. I was thrilled that the very painful cramping I always experienced was completely gone and mt tremor was greatly reduced.

We made arrangements for another programming meeting in a month and I left a very happy person. My limbs felt so free and loose that I did not know what to do with them! I had arm swing! As the afternoon progressed I took a nap (actually crashed onto the bed and slept like a stone for over an hour). My dyskenesia did increase a bit but not enough to be bothersome.

I am eagerly testing my new body and am thrilled with the result!

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