When I first started the process of going thru DBS surgery, I intended to document the process as it advanced. However, for many reasons, I have failed in that effort. Therefore, I will try to bring things up to date and document the process.

FIRST SURGERY DATE

After many months of waiting and completing several pre-OP counseling sessions and tests, I finally got a date of February 24th for the first of two surgeries. Unfortunately, the weatherman threw an ice storm at us causing my surgery to be postponed until March 24th.

On the surface that doesn’t sound like a big problem, but the mental stress it caused was terrible. My tremors worsened, and I felt like there was no end in sight. Months and months had gone by with no viable progress and it was getting to me.

I was losing more and more abilities to do normal things. Eating a meal was stressful, shaving and brushing my teeth got harder. I wanted relief but it seemed elusive with all of the delays.

MARCH 24th

Finally, on March 24th, my wife and I went to the hospital for real. We had to check-in at 5:00 AM for pre-OP stuff – vitals, IV insertion, haircut, etc. I talked to the anesthesiologist who would monitor things. Since I was to be awake during this part of the process, he would only give me some mild “feel good” stuff, as he called it, to help calm me if needed.

Going in that early, I wrongly figured my turn would come early. It didn’t. I wasn’t wheeled into surgery until almost 4:00 PM.

Things started with a cage placed on my head to align and hold it correctly to insert the leads. Another cage was placed on that one with plugs that went in my ears to hold it while adjusting the first one. The plugs were painful but only lasted a short time.

Once the base cage was lined up, they wheeled me into another room for a quick CAT scan. This was used to locate the target area as compared to an earlier MRI. I could hear them verifying data before things started.

I was given a local to numb the incision area and the process began. A long incision was made between the two points where holes would be drilled for the wires. Since the brain and skull have no nerves, there was no feeling from the drilling or insertion of the wires.

Drilling the holes was loud as the sound was transmitted directly through bone. But, it didn’t last but a few seconds. After the wires were inserted, the Boston Digital tech did a quick check of the leads.

He adjusted, one lead at a time, snd asked me to respond to his questions. He handed me a plastic cup and told me to bring it to my mouth with no adjustment. My tremor was noticeably bad. He then made an adjustment and repeated the cup problem. This time there was almost no tremor. We did the same thing in the other lead as well and checked for any speech problems or muscle contractions.

The area targeted by the leads is very small. Missing the target for the leads by even 1 mm can lead to very different results.

After the testing was complete, they put me to sleep to attach the wires that would lead to the control device they would implant in the second surgery. They curled them up and temporarily tucked them under the scalp.

I spent the night as a precaution and went home the next day.

MARCH 31st

The second surgery was an outpatient affair. I still had to be at the hospital at 5:00 AM, but this time there was no long wait. I went in at about 9:00 AM and was home by around 12:30 PM.

Now, comes the long wait. I had to wait 30 days to allow my brain to heal and get used to the leads. Obviously, there was also a concern of rejection, but thankfully, none of that happened.

WAITING

After surgery, it seemed like my tremors decided to get worse just to spite me. I shook all the time. I shook sitting still. I shook when I was in bed to the point my wife could feel it. I couldn’t eat without throwing food all over the table. I was a nervous wreck waiting on ANYTHING to stop the tremors.

Sleep wasn’t much help. I even shook so much at night, that I would wake up with my hands flopping on the bed or pillow. I hurt from shaking so much. Relief felt like it would never come.

APRIL 29th

I finally had an appointment to program and turn on the device. As we made our way to the doctor’s office, my tremors were off the charts probably due to stress. Would this really work? My mind was doubting all of it.

We went into the examination room and I went thru a quick set of muscle coordination tests with the doctor. Two Boston Digital techs were there as well to observe and give me instructions as to care, recharging and safety precautions.

The doctor adjusted each lead one at a time. The difference was AMAZING! When I went in, my hands were visible uncontrollable. Within ten minutes, both hands were quiet and calm. I couldn’t believe the difference.

I have to observe how things go at the current settings for a month. Then on May 27th I go back for another adjustment if needed.

CONCLUSION

This process has been long and frustrating in many ways. But, for now at least, it has been worth it. I have my “self” back. I can do detail stuff, eat normally, sleep peacefully. Getting my life back has been a great blessing for which I am eternally thankful. How long will this last? I don’t know but plan to ask that question during my next doctor visit.

We’ll see how things go over the next month.

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