The DRG Stimulator Trial Looks Like This

Forgive the above image. It is disturbing even to me and I lost part of my humanity as soon as my robotic parts were installed and connected to my nervous system. Siri can now understand me better. My vision is tinted red and I receive information readouts like the Terminator. I dream of electric sheep...

My wife thought it'd be helpful for others to see what the DRG trial stimulator setup looks like. So, here it is. The rectanglular shape is the battery pack which is attached to my back with yellow tape. If all goes well the battery pack will be surgically implanted into my back. For now, the entire setup covers the lower left quadrant of my back.

That's Not What I Expected

We did some more experiments today and the results were surprising.

Today, instead of throwing more hot water into the air, my wife suggested we do the Mentos in Diet Coke experiment. I figured, what the heck, what else do we have going on? We went to the store and purchased the materials and headed outside. We started with a 1.25L and then a 2L. Both results sucked. It looked nothing like it should so my daughter and I went inside in the warm air and tried again with another 1.25L. Good thing I didn't go with the 2L. The geyser reaction of Diet Coke nearly hit the ceiling in the bathroom. Thankfully it stopped just short. The reaction was more like what I expected. So the air temperature directly relates to the results.

Since my diagnosis of CRPS my biggest concern has been temperature. Summer time is the best time of year. The tightness isn't as prominent and that unpredictable burning sensation feelings are much less than in the the winter where cold temperature forecasts stress me out because everything is 10 times worse the colder it is. After my surgery on Tuesday my CRPS symptoms are no longer the same. Yes, my foot is still cooler to the touch compared to the left foot, and yes it is still tight, but it's -2 degrees right now and I even spent a little time standing around outside. Normally, I try to avoid going out at all costs when the temperature is below 10. There really seems to be a change in what's happening within my body and it's exciting.

The Day After Part II

Today was cold. Our kid was off from school due to the weather and I watched her play The Legend of Zelda: Skyward Sword and we worked on a LEGO set together. At one point, we boiled up some water in the microwave and I had her throw it into the air as I attempted to photograph the results. I didn't get anything good because I can't bend low and I became super cautious after nearly eating it on the ice.

After coming inside I monitored my foot. It's taken most of the day to warm up. I texted the Abbott representative and relayed to her how I was feeling. She was mostly interested in my pain level. I told her it was at least 50% better than normal which is truly remarkable, but I was hoping for more. I wanted the cold to the touch foot temperature to improve. I wanted the tightness to dissipate. The representative was pleased by my pain response. I then asked about the procedural pain and she told me that it should be better after a couple days. That pain is much better than last night and has gotten better throughout the day.

Hopefully by Sunday I'll have a good feel for how much the stimulator has improved my well being. It'll also help, I bet, that temperatures will climb about 60-70 degrees warmer since the cold directly affects my pain and today wasn't that bad at all.

The Day After Part I

Here’s what has happened after a day since my surgery.

I couldn't sleep well again, but that has to do with the fact that if I move right now it's hell. Not in my foot, but in my lower back where I received the leads. If that pain was gone I think I would've actually slept normal.

The pain in my back is similar to piriformis muscle pain I used to suffer from. It felt like someone had taken a bat to my back repeatedly. I had a steroid injection for that which cleared that up a year ago.

As I got up from bed I made sure that when I took my first step out of bed, since that's the worst one of the day, to focus on my foot and how it felt. It was still numb. After I planted my foot on the floor and as I raised my body up I immediately had to go back down onto the bed because of the back pain. I tried again, got back up, stayed up and stepped and I didn't have the eggshell feeling.

My "walking on eggshells" feeling is not like the saying. Since the accident it always feels like I'm walking on a constant bed of an infinite amount of small eggshell bits (the size of the pieces that fall into your bowl after cracking open an egg while preparing scrambled eggs in the morning and you decide to just leave them there and not dig them out, because it's not worth it.) However, the eggshell bits litter the ground and feel more like broken glass that I only feel in my right foot with every step.

That pain was near gone and much, much duller. That's a win.

I'm going to rest now.

Recovery Time

I'm back home and I'm stoned from a single dose of Vicodin I was given before leaving the hospital. Turns out the procedure really made my back sore. I didn't think I needed the Vicodin, but I'm glad that I accepted it and I already dug up my last five from the medicine cabinet that I held on to from years ago just in case I ever needed them, or if I had to sell them for some quick cash (I'm not serious, but how much are you willing to pay?). My foot is numb right now, but that's just the nerve damage that will always be there. Other than that, I'm not feeling any burning or anything else really. My foot is even warm to the touch. Fingers crossed that I sleep tonight. I'll update tomorrow when I'm back on planet Earth.

Twilight Zone

I weighed myself and I’ve lost 13 pounds since Christmas. Fist pump. Vitals checked. IV next. I dislike that part and they can never find a vein. At one point in the hospital I had blood drawn every four hours and I felt like one of those tomato looking pin holders. I like those things. Twilight is coming soon. I was informed that they will wake me during the procedure to make sure they’ve targeted the right nerve endings. I want to ask my doctor at that point how much hydrocodone I’m getting for all this, but even if I got a laugh I’m told I won’t remember. Until next time. 

Hurry Up and Wait

It’s the big day. Are you ready?

It’s 4:34 AM and we are leaving Newark for the city. This reminds me of Black Friday. I have never willingly participated, but a few times I had to photograph those dummies in line hoping to purchase a coffee maker for only $11.88 while I worked for the paper. Seeing as I have to be there at 6 AM I have already imagined they told me and a dozen others the same time and depending when you sign in that will determine our order and I’ll feel the need to go straight to registration upon arrival, even though the doctor is just waking up at his home in reality and I’ll only find a metal gate covering the waiting area like a store in a mall before opening time. 

Cold Foot, Not Cold Feet

Tomorrow is the day I get the DRG stimulator trial.

I haven't had much time to obsess and become more anxious about tomorrow's surgery. It's not that I haven't been in pain lately or that I've been able to sleep again (I haven't), but we've been busy with a wake and a funeral for Mitchell Rowe. The service was at a Catholic church where they like to sit, stand, kneel and repeat. By the sixth time of having to stand I quit and stayed seated. I often wonder what others think when I don't participate or take a handicap parking spot. I've gained weight, but I don't look "disabled." If you didn't know something was wrong, you'd never know. Often times I'm told I look good and that I'm really getting around well nowadays. Sure I am and thanks, but I'm not O.K. 

Over the past couple of days family and friends have wished me luck with tomorrow's surgery which I really appreciate and it makes me feel good, but I feel odd talking about myself ever, especially at a funeral when I see other family members hurting emotionally. I never wanted any of this, but here I am.

I want this to work so bad, but I'm worried that it won't and this is the best it'll ever be. I just want to be my old self. It's weird. I'm hoping I feel a difference right away when I awake from the twilight. I also hope I don't get all teary-eyed in front of others if it does. I just hope for something better than this. I'll let you know how it goes... but, if I never have another post, something bad happened and you should run like hell from DRG stimulation. More than likely, though, I'll see you in the future.

Oh, and do you like Elvis?

Sweaty Buddy

No stuffed animals were harmed for this post. It's cold outside, I'm having trouble sleeping and my procedure is in a few days. 

It's polar vortex time. That means the CRPS symptoms in my foot are acting up more than usual. My right foot runs about 10 degrees cooler than my left on average and only worsens during bouts of cold like we are enduring right now. Luckily, my kid gifted me Sweaty Buddy for my birthday a couple months ago. Buddy is filled with with flaxseed and smells like lavender. I enjoy the way Buddy smells. Who knew I'd ever be excited by something like that? My wife got me the fancy Sacred Sandalwood oil for Christmas and I was and still am thrilled to have received it. Sweaty is microwavable and I like to heat him up to the point his insides are about to melt and I place him on my cold foot. Eventually, the temperature in my foot will rise and match the left which makes the pain more bearable.

The weather has agitated my foot more which makes everything difficult including sleep, but I decided to make that worse, too, because why not? I was binge watching "Homecoming" the other night (no spoilers here...?) and I realized it had been 48 hours since my last dose of amitriptyline. I was prescribed a daily dose of the drug about a year ago because I was suffering from insomnia. The first day I took a dose it worked great. I fell asleep in minutes. I remember thinking that had The Narrator in "Fight Club" had only been prescribed amitriptyline when he told his doctor he was suffering from insomnia we'd never know the story of Tyler Durden... Where was I? That's right, I don't want to take drugs that mess with my chemistry if I can help it, so I decided right at that moment to attempt to quit another drug cold turkey. It's been crumby but I looked up the drug's half-life and it should be nearly out of my system.

I think my anxiety of knowing that my procedure is only days away is also keeping me up at night. I have hopes that it'll help, but I also thought that about other treatments. At a certain point I shouldn't build this up, but I want that magic bullet. A past doctor told me about a patient he had that so badly wanted that cure for pain too and in the end he sucked it up and put his "pain" in the passenger seat. He was a truck driver, I believe. I know where he was going, but God that was a buzzkill. I didn't see that doctor again. I just hope this works to some capacity of pain relief.

Walking in the Cold

I took a walk at Silver Springs today. Probably the last time before I receive my DRG stimulator.

This morning my dog and I took a 3-mile hike at Silver Springs in Yorkville, IL. We do this often and since the new year began I've tried to at least walk two miles a day. It's not an unattainable goal for most, but it's quite difficult for me. Cooler temperatures make my right foot feel real tight and bound up, like as if it were in a cast after having just sprained my ankle. The colder it is the worst it gets. Also, I forgot to mention in my first post that I also developed foot drop on top of the CRPS due to the accident. It's like walking while wearing a flipper on my right foot...always.

From Wikipedia:
Foot drop is a gait abnormality in which the dropping of the forefoot happens due to weakness, irritation or damage to the common fibular nerve including the sciatic nerve, or paralysis of the muscles in the anterior portion of the lower leg. 

Walking in the snow is like walking in sand for me. For a normal person it'd be like walking in molasses. A while back I was left behind on a Lake Superior beach when biting flies started attacking our party. I told the group to go on ahead, because I just couldn't go any faster. If we are ever invaded and I have to be left behind I'll be happy to slow down the enemies with a grenade. I need to start working on a cool action movie catch phrase I could use while removing the pin. Something like, "this is gonna blow your mind!" Or "don't go to pieces!"

So why do I walk? Why not just stay home? Before my accident I weighed 168 pounds. I could eat 3,500 calories a day easy and gain no weight, because I was always moving. During my rehabilitation stay when my brain rebooted to version 2.0 I weighed in at 127 pounds. I couldn't believe it. I decided I was going to bulk up like Mac from "It's Always Sunny in Philadelphia." The weight came back and then some. Turns out if you can't move, then you can't burn calories.

Now, I could get one of those fancy exercise bikes and have some instructor yell at me to go faster and harder from a hip New York fitness studio like in the television commercials, but I already hate being home as much as I am and I really just miss being outside and experiencing life. That's why I go on my walks. With a beautiful state park like Silver Springs only ten minutes away there's no reason not to go.

During the walk we came across a bird's nest in the snow, rabbit, a flock of ducks, squirrels and a group of three deer. Luckily my dog didn't spot the deer, because although he's a coonhound, he's also a deerhound and UPShound. An instinctual switch will flip in his acorn brain and there's no turning back. He spotted a UPS delivery truck at Glacier National Park last June and he wanted blood. He was probably wondering how had that truck tracked him for over a thousand miles?

The walk was wonderful as usual. Except for one man on a snowmobile, who also ticked off my dog, we had the whole place to ourselves. This is also good for me, because the scent hound likes to stop and sniff everything and when I pull him to go he starts bucking like a bronco and that's when I start with the curses. It probably sounds like I hate my dog, but he's a real son-of-a-bitch. Literally. He's not my son and we are just real good friends. Stop calling yourself a dog parent you weirdos.

Just before we made it back to the car I decided to have a closer look at the Farnsworth House that sits on the opposite side of the icy Fox River. Most of the year it's quite hard to see the architectural masterpiece through the foliage, but in the winter it's easily spotted through the barren trees. It's good to be outside and experience the seasons. I really hope this treatment increases my quality of life. If not, I'll probably keep trying to find something that'll help.

The Beginning of the End of Constant Pain?

From here on forward this area will be reserved for the CliffNotes version of what is explained below in my posts for people who prefer brevity. I got wrecked in a vehicle collision and I now suffer from CRPS. In less than two weeks I will begin my trial of DRG stimulation.

I should be dead. From what I've experienced, dying only hurts if you live. It has been three years and four days since it happened. Last June, one of my many doctors said that it had been only a ‘relatively short amount of time.’ As an individual who has been suffering from chronic pain due to someone else’s negligence, I can tell you that one day feels like an eternity and completely unfair, but so is life. I’ll never forget January 14, 2016, but I’ll also never remember it, except for one thing. The only memory I have of that day was my wife and I discussing the death of Alan Rickman that occurred earlier that morning. Rickman is most famous for playing the role of Professor Snape in the Harry Potter movies and, more importantly to me, my pick for the best villain in cinema history as Hans Gruber in “Die Hard.” Beyond that, I can’t remember two weeks before or two weeks after that date in January of 2016.

When I first started waking from my haze of drug induced reality, I found myself on a hospital bed unable to move due to weakness and fatigue. I asked a woman wearing scrubs who was checking my life monitoring electronic equipment if I was dead. She laughed nervously, as if I had startled her, and said that ‘no,’ I was ‘alive of course.’ It was a poor attempt of trying to sound positive.

My memories of that time are scrambled and hard to put in the correct order of when they happened or if they ever happened at all. I remember panicking and becoming hysterical because I didn’t want another CT scan. The recorded robotic sounding voice that instructed me not to move while the machine fired up terrified me, not that I could move if I wanted to because I was just too weak. I had a fever of 104 degrees due to an infection, probably just days after my last dose of Haldol and my brain was not working, like when you have the flu and it’s going to get worse before getting better. I saw a flock of small dragons soaring above my bed as I hid under the sheets. At one point I was ushered down a dark hall while traveling on a gurney through swinging double doors into the bright light of outside. It was terribly cold and I asked the person transporting me if the virus had reached our area yet. I was referring to the zombie virus, of course. I hoped the cold temperatures were freezing the zombies solid in place, which was slowing the spread of the virus into our region. That’d give me a chance at least to get stronger before they thawed in the springtime. That tube which was shoved down my esophagus appeared to be too long when they removed it from my throat and it hurt so bad. I was so thirsty and nobody would give me a drink because my throat muscles were too weak. I remember watching an X-Ray of myself swallowing on a monitor and it looked so Sci-Fi. My abdomen was stapled shut in two separate spots. I couldn’t find my daughter. Wait, I have a kid? How old am I? A woman kept visiting me at the hospital(s) and she was usually there to escort me between rooms and buildings. I must’ve asked her the same questions over and over. One time her and I watched a movie together on a laptop in my hospital bed that starred Will Ferrell, but it couldn’t have been real because the movie we watched wasn’t a comedy and this woman was out of my league but she seemed so familiar. If you are ever worried your brain is broken find a clock with the mechanical hands and see if you can figure out the time. Or try to write something down on paper. It’s scary as hell when you can't. Oh, and that goddamn pain I had! It felt as if the Devil was caressing my foot in a pool of lava while smashing it with a sledgehammer over and over and over. I tried to express the feeling of pain I was having, but nobody truly understood. Eventually, my fever broke and the lines in the wood grain stopped moving and I was able to convey my suffering to those around me.

I was transported back to the rehabilitation hospital after a second visit to the ICU and the infection was under control. I finally understood that I was involved in a multiple vehicular accident. A distracted driver slammed into the back of my car while I was waiting to turn left on a two-lane country road. The point of impact angled my car right into the path of an 18-wheeler and I was hit head-on by the semi-truck and then by two more SUVs that were traveling behind the vehicle that initially ran into me.

My seatbelt worked so well that it fractured my pelvis into three separate pieces. My X-rays reveal over a dozen surgical screws that hold me together. I'm going to blow the mind of whoever cremates my body and sees all the metal left behind in my ashes. I received three new scars. The most impressive is the one that begins just below my ribcage and goes four inches below my belly button. That one really stands out because I had internal bleeding from a perforated bowel that had to be repaired immediately after arriving at the hospital via lifeline helicopter. There was no time to make a clean surgical cut. I also had that TBI from the multiple concussions I was subjected to from colliding with four different vehicles. I hope I never develop CTE. And then there is the neuropathy, specifically damage to my sympathetic nervous system.

I was a mess, but my foot pain was/is the apex. One of the doctors that first saw me in the rehabilitation hospital hypothesized that I may be suffering from Chronic Regional Pain Syndrome, or CRPS. Learning to walk again was hard, not because of pelvic pain, but because with every step I took, even to this day, hurts so damn bad. It feels like walking barefoot on LEGO. Over time that pain has decreased, but it’s still there. Every time I’m asked of my pain level I answer "3" or "4," even if it’s an 8. The first step out of bed every morning is the pits and it continues with each step after. It is a constant reminder of what is wrong with me and what happened to me.

I’ve been told CRPS is a diagnosis of exclusion. Well, after three years and tens of thousands of dollars spent on CT scans, MRIs, blood tests, surgeries, a vein stent, 47 days between two hospitals, rehabilitation, PICC lines, nearly a year of physical therapy, medications, antibiotics, a month long pain program, and five nerve blocks (that essentially did nothing), my latest doctor has finally fully diagnosed me with CRPS. 

Since I've finally been 'officially' diagnosed I can finally begin a new treatment. In less than two weeks I will have surgery to begin my trial of Dorsal Root Ganglion stimulation. From what I understand, I will have temporary leads placed into my back that connect to the sympathetic nerves that are sending bad signals to my brain. My brain is telling me my foot hurts so, so bad. I will be able to control the signals with an electronic battery device that is controlled by a BlueTooth remote, such as an I-Phone. The hope is that my brain will stop receiving those incorrect messages that I’m in pain.

I’m worried about having more surgery. I have fears of placing a foreign electronic device into my body by choice. What if it shorts out and I’m electrocuted and I can’t stop it? I will have to be cut open every few years for a new battery. What if the inevitable apocalypse happens and it needs to be taken out? I told my wife she’ll have to grab the Exact-O knife and cut it out. I don't want to rely on something like this, it's the reason I cold turkey quit my 3,200 mg daily dose of Gabapentin. What if my device is hacked by the Russians and I'm programmed to destroy our country? Terminators will be on my side at least. Even though I’m anxious about this treatment, the pain I’ve endured and will continue to endure if I do nothing has made me want to take this next step. I created this blog for myself and for others who just want to know more about DRG stimulation. I’ll try to journal this experience as best as I can with words and illustrations. Please feel free to ask me questions or share your experiences.