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.

Post Surgical Daze

This is my second Blogger post of the series that I wrote way back in 2008. I am reposting my original entries that I posted on the Triond web site. I have had links to these articles here on my blog for awhile now, but Triond's links have been inconsistently and annoyingly hard to open.

I am trying hard to resist the temptation to edit these pieces. Some of them were written under the influence of some pretty serious pharmaceuticals. I kind of regret not keeping a copy of the first original version of this piece - the one that Triond rejected because it was too short and incomprehensible (they had tougher standards back then). So this would be the second version of the original series that I wrote for Triond. It is the second post in this Blogger series, but it is part 1 of the original series, since my last Blogger entry was written four sleeps before the surgery, and was not included in the original series. 

I think I am still feeling some of the effects of those pharmaceuticals. 

Parkinson’s Surgery: Deep Brain Stimulator implant

Part 1: Post-surgical Daze

  

April 10, 2008

I was admitted to the hospital the evening before the surgery, so that they wouldn't have to depend on me to be on time at 6 am on surgery day. (Someone must have tipped them off about my challenges with punctuality.) First thing in the morning, they started with the standard hospital routine of poking me with sharp things.  Kudos to the IV specialists at the Health Sciences Center in Winnipeg – every IV needle went in on the first try. They took me downstairs for an MRI, then attached a “halo” to my head. I hope that the halos in heaven are nothing like this. This one weighed a ton, and had to be screwed to my head in 4 places. These screws are only skin deep, but skin hurts! This prevented me from nodding my head, which I soon found out is a deeply ingrained instinct when someone asks a question.

Then they wheeled me into the OR, where there must have been at least 15 people. One team was off to my right, where I couldn’t see because I couldn’t turn my head. I’m told that they were examining my MRI results. The surgical team kept leaving, except for Dr. Vivian, a resident anesthesiologist, who never left my side except for one tea break. She was from South Africa, so she had a cool accent to match her colorful surgical hat. She became my lifeline during the surgery.

Vivian kept herself at my beck and call, so I asked her why the surgical team kept leaving me. She said they had to draw a map of my brain, and to write in the details of what they found. I asked if while they were in there, could they keep an eye out for loose wires. They were mapping out just the right spots to place the electrodes in a tiny part of the brain, only millimeters long. But they never did find the loose wire in the part of my brain that used to be able to do math.

They tested several spots on each side of the brain, and needed me to be awake to tell them stuff like “how many fingers am I holding up?” & “Can you feel this electrical jolt that we are shooting through your body?” By the end of the eleven hours, they were having to wake me up to answer these questions. It was frustrating for both me and them that I could feel the electrical jolts, but couldn’t open my eyes or speak – I could only squeeze Vivian’s hand. My apologies for her bruised hand!  Sometime during the last hours of surgery, my legs started to cramp up from dystonia (Parkinson’s unmedicated extreme – painful muscle cramps that I have been waking up with every morning for a long time), so they gave me enough morphine to knock me out. I don’t even remember hubby and the girls being in my room when they wheeled me back in – about 12 hours after my day started. 

My DBS Surgery Blogs - Four More Sleeps Until Surgery

These are my before and after surgery experience blog posts from 2008. They were originally posted on Triond, and I had posted the links here on my blog, but the links are not working consistently anymore. They say that everything posted on the internet stays there in the cyber ether somewhere, but I think it gets harder to find after awhile. If you have the patience to reload each link 5 or 6 times, click your heels together, and hold your tongue just right, you can get them to load most of the time, but I thought these posts would be much easier to read as a continuing story if I post the entire original articles here. Maybe I could add updates where relevant. Some of the entries may have been  composed while still under the influence of hospital drugs.

Four More Sleeps until SurgeryApril 7, 2008

Greetings to my family, friends, and readers! I said that I would keep you updated on my progress as I journey through this maze called Life with Parkinson’s disease. Lord willing, I will be undergoing surgery on Thursday, April 10, 2008 to have a deep brain stimulation device implanted in my brain. This is considered to be elective surgery, so I have been warned that the surgery date could be bumped if someone with a more urgent condition needs the operating room. My neurologist once had a patient all prepped for surgery, with the halo frame in place, when they were informed that the OR was needed for an emergency surgery. My prayer is that if my surgery gets bumped, it would be before the IV needle is in place.

I have been waiting for this surgery for about two years now, so it seems rather surreal that it is now so close to actually happening! Friends have been asking if I am excited or anxious, and I say YES! The anticipation of fewer medications and therefore less severe side effects is very exciting, but I am also anxious about the actual surgery and possible complications. This is brain surgery, after all! It will be an eight to ten hour surgery, and I will be awake for most of it. They need a conscious patient in order to map out the brain and find the best spot to implant the device. After that, I will be put under general anesthesia to have a battery implanted under my collarbone. Maybe while they are at it, I could have some Borg technology implants just like Seven-of-Nine on Star Trek Voyager. Or perhaps they will find the loose wire in the part of my brain that used to be able to do math. With a tweak here or there, maybe I could finally be able to figure out where the train traveling west at 60 kilometers per hour will collide with the car traveling south that has stalled on the tracks.

All kidding aside, this surgery is designed to replace at least some of the Parkinson’s medications with electric stimulation. Contrary to what Rush Limbaugh and anyone who believes his uneducated slander of Michael J. Fox’s appearance on a TV ad, the uncontrollable swaying movement (my sister has told me it looks almost like I have a desperate need to use the bathroom) is actually a side effect of the medications. This movement is quite painful, especially if I try to control it. My handwriting is hardly legible anymore, and the reason that I am able to type this article is the magic of the delete key, which enables me to eventually create clean copy. Without medication, my body becomes rigid, with overwhelmingly painful muscle cramps and spasms. My days consist of a never-ending cycle between dystonia (painful muscle cramps) and dyskinesia (uncontrollable movement). The desired outcome of surgery is for the DBS device to make the effectiveness of medication more even.

My knowledge of Parkinson’s disease, its symptoms and treatments is based solely on my own experience and research. I have no medical credentials, and I am not endorsing any product or procedure. This is just my story. If anyone reading this is also dealing with Parkinson’s, especially young adult onset, I would love to hear from you.

Update July 8, 2014:

My neurosurgeon was unable to find the loose wires in my brain, and I don't think he even looked into sourcing any Borg technology. But I guess brain surgeons are pretty busy.