The saga continues:

Parkinson’s Deep Brain Stimulator Implant surgery

Part 4: The second surgery

April 17, 2008:

One week after having the deep brain stimulator implanted deep within the depths of my brain (shucks – I forgot to ask the neurosurgeon if he found the loose screw that connects by brain to my mouth), I was back in to have the battery pack installed. I figured that this surgery would be a cinch compared to the marathon eleven hours of the first surgery. Turns out that the second surgery is only easier for the doctors.

Hubby drove me in to the city to be at the hospital at 5:45, which meant leaving home at 4:00. No problem for me, that’s when the pain usually wakes me up anyway. We got there on time (see – I can be punctual sometimes!) and joined the line up for assembly line day surgery. I met Vivian again, with her colourful hat. This time she was there to put me under. No halo this time – Praise the Lord! Apparently some neurosurgeons do the first surgery in two steps as well, which means that that medical device from some evil medieval torture chamber has to be screwed onto the patient’s head twice. Another IV needle was torture enough for me!

The next thing I remember is the trip back to the surgical ward to sleep for the rest of the day. I have a vague recollection of lunch. I told one of the nurses my standard pain med joke: if pain killers don’t help, try ice cream. She was sweet enough to find me some ice cream, but I was so tired I had to get hubby to feed me. It’s been awhile since he had to spoon feed anyone, and I ended up falling asleep with a sticky face. After a short nap, I went back into restless/exhausted mode again.

The pain from restless legs is hard to describe, and codeine doesn't help much. It’s a spring fever of some sort – you spring back & forth, in bed and out of bed, it just hurts too much to stay still. It is a relentless pain, and I am sure it leads to insanity. I probably kept the whole ward awake with my endless pacing up and down the hallway. I know I kept my roommate awake with the constant bed adjusting (why is it that the more restless patients get the squeakiest beds?). 

Around 5 in the morning, a nurse commented that I seemed awfully young to be in so much pain (I'm 42), and then I lost it. I started to cry like a homesick puppy. Then, to make matters worse, I knocked over my pill tray which held a week’s supply of meds while fumbling in the dark to find some Kleenex, so I had to call the nurses back, turn on the lights, and they swept the floor. They must have thought I was suicidal, since they took my pill tray away. I called home, woke up Hubby, and – sweet, sensitive man that he is -  he put my sister in charge of waking up the Munchinettes for school, and he drove in to see me. He got there before breakfast. (If anyone would like to order my manual on “How to Train a Husband by Getting a Chronic Debilitating Disease” it will available in paperback soon – but I’m sure that you won’t want to try my method). We stayed long enough to see my doctor, apologize profusely to my roommate for keeping her up all night, and headed for home.

Hubby stopped for ice cream on the way home. Perhaps you would like a copy of my manual after all.

At Home: The first week after surgery

In hindsight, now that my restless leg syndrome has been diagnosed and since I have been on Lyrica, I now understand why it was absolutely impossible for me to rest or sleep. Back then though, I drove everyone crazy with my relentless walking at night.

Deep Brain Stimulator Surgery

Part 3: The First Week at Home

April 19, 2008

My doctor said to go home and sleep. My brain wouldn’t cooperate. I went into restless/exhausted mode, where I would lie down, but couldn’t get comfy, so I would get up again, and be too exhausted to do anything. I drove hubby nuts. I also was banging into everything, and I still don’t remember how I got some of those nasty bruises on my legs.

All week I was amazed at how calm my body was (except for not being able to rest). The dyskinesia  (dancing, uncontrollable swaying movement) was gone, and the device wasn’t even activated yet! My surgeon explained that this was a brief side effect of the surgery; the brain probes that they do while mapping the brain before implanting the permanent device have a bit of a calming effect for a few days.

I didn’t go out much. I was afraid of scaring people with my reverse Mohawk hairstyle with 18 staples in 2 rows on my head. When I did go out, I wore a scarf. Hubby asked me why I bothered, since whenever I ran into someone I knew, I pulled the scarf back to show off my war wounds. He just doesn’t get my flair for the dramatic.

After one week at home, it was time to go back to get the battery pack implanted. I thought this surgery would be much easier, since I would be under general anesthetic. Well – the surgery itself was easier (for me, at least), but I think the recovery was actually more difficult… Part 4 will describe how I survived (barely) the next surgery.

The First Night - Why the Night Nurses at HSC hate me

I remember wondering if I was dreaming but then I woke up to a conversation between the night nurse and the day staff that removed all doubt. I guess I really did do this. Again - remember that I was under some pretty influential pharmaceuticals.


Parkinson’s Surgery – Deep Brain Stimulator 

Part 2: The First Night 

April 11, 2008 – Part 1 ended with the recovery room nurse giving me morphine… my husband and children said they came to see me… All I remember is waking up around 3 in the morning (I guess the morphine wore off), and having the worst case of restless leg syndrome pain ever.  My legs were still dystonic (painful muscle cramps and spasms) from 11 hours in the OR without my Parkinson’s meds. 

I don’t think that the nursing staff understood how painful these cramps can be, or that the only cure is to get up and walk it off. (My neighbours back home know that I can be seen out walking at odd hours of the night.)

I insisted on getting up, and the nurse kept insisting that I was not capable of getting up. It took all the strength I had left to yank off those tight stockings they put on to prevent blood clotting in the legs, and untangling myself from as many of the tubes as I could, wiggling out of bed (with all the rails up to prevent me from doing just that), but I eventually made it up to a standing position. I made it to the bathroom and back, then I fell back into bed with the cramps calmed down at last, and finally fell back asleep – only to be reawakened at 6:00 for the usual vital signs check.

Next episode: home for a week, then back for part 2 of the surgery.