My Crazy Parkinson's Life
DBS, For Me, or Not For Me, That is the Question.
As I write this I am recovering from DBS surgery, and thought I would share my thoughts about the surgery and why I had it done in the first place. The why is easy, I had no choice, I have very little response to medication and I had begun to see changes like I had before I started medication. The medication helps me with fine motor skills, but very little with tremor, Bradykinesia and joint stiffness.
When I was first diagnosed, I refused to take medication, I was going to beat this by will power, WRONG! I rode that plane right into the ground. My left hand was useless and everything was mentally taxing. I gave in and started medication, I could now cut my food again, write with my left hand, put a belt on, and even button my shirt. But the tremor, bradykinesia, and stiffness in my joints was joined by their new friend dyskinesia.
I told myself that when and if DBS was offered, I was going to jump at it because life is too short to wait for something that could be as potentially life changing as DBS. Some people are still getting benefits 15 years after surgery ,so sign me up!
When my doctor asked if I was interested in DBS, I cool about it on the outside, but inside, I was “That’s what I’m talking about!” The process takes about four to six months to become approved. You have a phycological evaluation, cognitive exam (looking for Alzheimer’s or other forms of dementia). Then back to your movement disorder doctor, followed by a trip to the surgeon, who reviews your test and evaluation results, the surgeon sets date, and the wait begins, and before you know it, it’s party time.
I will tell you right off the bat; in some ways the surgery was much easier than I thought it would be and in other ways it was much harder than I thought it would be. I asked people with DBS about the surgery and quite frankly they are not very fourth coming with information. Now I know why, the experience is very hard to explain. And of course, everyone’s experience is going to be different.
But, and that’s a big but, the process is always the same, yet very little is said about the surgery. And when I ask people if it was worth it or not, all are on the fence about it until the tuning gets straightened out, then most are highly satisfied.
The things I was worried about, the hour and a half MRI was horrible, but I knew that going in. The drilling of the skull and the cage on my head were non-issues. The cage is very open and I had no feelings of claustrophobia what so ever, I worried about nothing. And because it works on X,Y,Z coordinates I understood how it worked. Who knew that with just little extra training, I could have been a brain surgeon. The next fear I had was having my skull drilled, could not feel a thing or for that matter hear a thing’ so that was cool.
The things that caught me by surprise were the lidocaine shots, the two to forehead were not bad. But I knew something was up when the surgeon said “nobody is a fan of the next two shots”. The ones to the base of the skull were a little tough, thankfully it did not take long. The doctor then set down in front of me and said, “you’re going to feel some pressure, that was a huge understatement. And then he began to tighten what seemed like turnbuckles and the pressure was intense. It did not hurt, but I was not so sure my head would not cave in. JR from Medtronic’s was in the operating room during the procedure, and when I told him I felt that, he said he was surprised, because most people are out when that part of the setup is done.
I don’t remember much else for the next three days. My wife said I complained about a headache and I was given morphine, I remembered walking around the hospital in a fog but little else. The next thing I remember is being at home totally confused. Everything overwhelmed me, I screwed my cell phone up so bad, it locked up and I had to get a new phone, I couldn’t even use a cell phone! I was later told that was not unusual for People with Parkinson’s to become very confused after surgery. I was told it was not the morphine; it was the general anesthetic that causes that. I am not so sure about that, because during phase two I had no morphine and never felt overwhelmed. After phase one I thought I was losing my mind. It was not scary but I did a lot of crazy stuff for a few days that’s for sure.
I had a huge scar across my head, I was expecting two holes, but instead I was stitched from almost ear to ear, I looked like a confused Marvel comic book villain.
Just about the time I had started to feel normal, it was back to the hospital for phase two. I was a little nervous about this one, the battery implanted in my chest was just weird to me, and kind of freaked me out, but it won’t work without power, so the chest it is. This surgery was a little tougher than #1 and a lot of that has to do with how I sleep. I sleep on my stomach, which is not the best position for DBS recovery. Between the staples in my chest and the ones on the side of my head, getting comfortable on my stomach was impossible. But after three nights I noticed a large decrease in pain and sleeping progressively got better. If I had been a back sleeper, I would have had a lot less pain to deal with.
Where they run the wires down the neck is a little painful but not as bad as I thought, the area in chest where the battery is placed is still a little bit tender, but I expect that issue will go a way soon as I had the staples removed yesterday.
So where am I at today? 5 days from the big day, I get turned on Monday the 20th of June. I’ve been told the surgery went perfect. During the surgery the doctor hooked me up to a tablet and gave me commands and I responded really, really well. JR from Medtronic’s said to me, “you don’t remember that?” I said “no”. JR said the test went so well, that I started crying, I guess it means more to me than I thought.
Mark Hitechew