Saturday, February 4, 2017

DBS - End of the Saga

DBS (Deep Brain Stimulation) has had an almost miraculous effect on many people with Parkinson's disease. I am not one of them.

I had a DBS unit surgically implanted April, 2008. It was an ordeal not for the faint of heart. The surgery was done in two stages. First, the wires were buried in the subthalamic nucleus (STN) deep down into my brain stem through two dime sized holes in the top of my skull.with the wires tunneled across my head, behind my left ear.This was an eleven hour surgery for which I had to be awake so that I could tell the doctors which part of the body was tingling with electrical current. They also had to examine my eyes every now and again, which would be rather difficult if I were asleep.

One week after the first surgery, I was back for part two: the battery implant. There is no room in the brain for this gizmo,so the battery needs to be implanted in the chest. I got one of the old style batteries that would need to be replaced surgically when it runs low.. I was told that it might last for two years. Nine years later it was hardly used.

The goal of DBS surgery for me was to even out my daily on/off cycle. I had high hopes for a good outcome. Turned out to have the opposite effect on me. My dystonia (the excruciating muscle cramps and human pretzel syndrome) got worse, the dyskinesia (involuntary dancing), and the bradykinesia (where every movement feels like trying to walk through a cloud of gelatin. Renee -my first programmer - called it 'wonky'.) all got worse and lasted longer. Fortunately my 'on' hours also improved. When I was on, I felt almost normal. A lot of people only ever saw me in this state, because I tried to plan my day around my on times. Even my family doctor rarely saw me in the other stages. I brought my laptop to an appointment once and showed him video of the other stages. He was quite surprised, especially that I was cycling through all of these states every day.

Nine years ago, I threatened Renee that if the DBS made me worse instead of better I was going to move in with her. Her husband was the surgeon who put the damn thing in my head. Unfortunately, they have both retired now. I met them at a Parkinsons convention a couple of years ago. I told Renee that I had turned my DBS off, and she was rather horrified. She asked if Steve (her replacement) knew about this. I have been too afraid to ask if she confronted him to ask why he would let me turn it off.

While writing this update, I noticed that my 5th chapter of the saga for some reason had never been posted on this  blog, so I just added it and it may be out of order. Here is the missing link.

The DBS has never made a significant improvement in my Parkinson's symptoms . About three years ago I was filling my pill trays for the week, and my hands were shaking so much that it was difficult to pick up the pills. Turning my DBS up and down made no difference, so I tried turning it off (something Renee had told me to never do!) and the tremors stopped immediately. When I turned it back on  -- and the tremors came back. I tried turning it on and off a few more times,with the same results each time.

Since then, I have kept the unit turned off except to experiment now and then to see if it would do any good for extreme symptoms and for on times to see if they would last longer. It didn't seem to make any difference.

So now I decided it was time to call it quits. Last week I had the battery removed. Nine years ago, the battery implant surgery was a difficult ordeal, especially for the first week after the surgery. I was hoping that the surgery to have it removed would\be easier to recover from. No such luck. I have not been sleeping well, so all day I have been falling asleep and having extreme symptoms that are lasting for hours.

The surgeon left the leads in my brain and the wires tunneled down to my chest. He secured the ends in the chest cavity in case I ever want it hooked back up again. Now I am feeling the wire tubes moving around. I wonder if I made the right decision.

Parkinson’s Surgery Update 8: Life 5 months after surgery

I realize that it has been awhile since I’ve written an episode of the continuing saga of my life with Parkinson’s disease. I can’t believe it has been almost six months since my Deep Brain Stimulus implant surgery.

To recap: on April 10, 2008 I underwent an eleven hour surgery to implant a deep brain stimulator devise somewhere deep in my brain. A week later I had a second operation to implant a battery under my left collar bone, and tunnel the wires just under my skin to connect the DBS device with the battery. The decision to have this surgery was not made lightly, and there was a thorough screening process to determine my suitability as a candidate. In Manitoba (Canada) we have a world class surgical team to do this operation, but because it is considered to be elective surgery, they are only able to do one or two a month. On my first trip through the screening process, I was deemed to be too emotionally stressed out to undergo brain surgery; which has a high risk of post operative depression. I was sent to the Psych ward, where I attended two group therapy classes to learn to deal with chronic pain. The phrase that I remember hearing frequently was “Live around the corners of the pain.” I’ll let you know then I get that one figured out.

If you are new to my ramblings, I have published a seven part series to chronicle my journey through the surgical experience. I apologize for the parts being out of order – I submitted the first five or six episodes on the same day, and had some technical difficulties. I was also very groggy for a couple of weeks, so my first submission to Triond had to be declined and rewritten when I was of sound mind (or at least what passes for sound mind).

I was hoping that by now I should be reporting that the surgery was a great success, that all of the pain was worth it, and that I am now back to attending church, doing my own housework, and possibly even getting my driver’s license back.

The best change from the DBS implant is that I have very little dyskinesia , (involuntary swaying , which my sister has told me looks like I am in desperate need of a bathroom. Dyskinesia is  a side effect of medication. However, I am having a most difficult time trying to reduce the dosage of the drugs with the worst side effects.

The worst result has been a return to the symptoms that I experienced before I was diagnosed with Parkinson’s – my whole left side is dragging uselessly for several hours every day. The most painful symptom is dystonia – excruciatingly painful muscle cramps which twist my body into a pretzel, making it almost impossible to move at all. Twice now I have been on solitary walks when a fierce dystonic cramp started when I was still a half block from home.

I’ve been a bit of a hermit for the last month or so, mainly because it is painful to walk and I never know when a dystonic attack will show up and I will be stuck somewhere. They have hit me while grocery shopping, causing me to rely on staff (or a friend who is in the store by Divine Coincidence) to pick up the rest of the stuff on my list and ring it through for me. Fortunately we live in a town small enough that most of the grocery stores’ staff knows me.

I am still having a very difficult time reading, since I am still taking the medication that makes it hard to concentrate enough to read. A pleasant surprise has been that God has graciously restored my ability (very important since this computer is my link with the outside world – and also because my handwriting has become illegible even to me). I have also discovered that I am able to read off the computer screen much more easily that out of a book. I am slowly learning that the computer is more than a glorified typewriter, and that Google is amazing! All this I wouldn’t have had time to learn if I had to go to work every day. God faithfully keeps His promise to take bad situations and make good things happen as a result. Right now I am on a character building program. The Bible says in Romans 5:4 that:
“We also rejoice in our sufferings, because we know that suffering produces perseverance;  perseverance, character; and character, hope.  And hope does not disappoint us,”