On the inside though, it’s a whole other gory story. Here’s a diagram of a Medtronic abdominal bladder neurostimulator that’s similar to mine, but my actual one is what you call “off label”, meaning the equipment has been adapted with non FDA approved modifications for purposes other than indicated, so mine looks a little different inside.
Frequently Asked Questions
What is “bionic”?
Bionic is a word to describe people that have any of their organs or other parts of their body that are artificially enhanced. These can be things such as internal bodily machinery, inner medical electronics, prosthetics, or even transplants can be considered bionic. My body is made bionic by electric neuromodulation stimulation through my mechanical implant in my abdomen including the wires running along inside me. Technically, it’s not just a bionic bladder that I got, but a bionic intestinal tract, and bionic kidneys, since each of those organs function solely thanks to the help of my electric machinery going on inside. If it still sounds a bit confusing, here’s a short and simple breakdown of the word “bionic,” courtesy of good ol’ google:
What are your main disabilities and chronic conditions? How do they affect you?
- Reflex Sympathetic Dystrophy also known as Complex Regional Pain Syndrome (RSD/CRPS) (a nerve dysfunction disease which causes the highest level of pain recorded on the medical McGill pain index scale)
- Idiopathic Degenerative Neuromuscular Disease (affects all the muscles in my body including my diaphram’s ability to take deep breaths, reduced, lung capacity, and caused me to lose the ability to speak, chew, swallow requiring a feeding tube, induced bone structural changes, and left me with only minimal movement in my hands and arms. Still in the process of muscle and genetic testing to determine exact classification type.)
- Aphonia (inability to speak due to lack of ability to move vocal chords or facial muscles from neuromuscular disease, so I use an iPad with a type-to-speech app to communicate)
- Atonic Neurogenic Bladder (a genitourinary disease that prevents my bladder from working on it’s own, requiring me this electrical bladder implant)
- Ptosis (causes eyelid muscles to remain perpetually heavy and drooped)
- Postural Orthostatic Tachycardia Syndrome (POTS) (causes blood pressure to drop and heart rate to increase when sitting me upwards for repositioning or lifting me for transfers and at random times unexpectedly)
- Acute Intestinal Angulation: (due to the many abdominal surgeries over the years, adhesions and scar tissue grew into my intestines making them looping, twisted, and angled sharply and causing irregular bowel motility)
- Metastatic Dysgerminoma (first diagnosed 16 years ago at stage III, recurring tumors over the years, currently in remission)
What’s that implant you talk about? What’s it for? Why is it so painful?
The bladder implant you’ll notice me reference super often on this website is called a Bilateral Sacral Neuromodulation Bladder Neurostimulator Interstim…Yeh, that super duper long name can be a bit hard to swallow, I know, haha. That’s why I nicknamed it “Big Bessie,” not only to shorten that supercalifragilisticexpialidocious type name, but to make the situation dealing with a tissue tearing big metal box inside my body, just a wee bit lighter. When I say tissue tearing, I mean how the box shifts inside with any slight movement, the corners causing an intense searing tearing pain as is grinds against the raw flesh inside. From the outside though, its always swollen, red, and the skin starts peeling in the areas over where the implant is positioned in the moment. Here’s a pic of what it looks like from the outside:
My particular implant is not your typical bladder implant. My urologist took an older model of Pain Neurostimulator, and implanted it off label using 4 wires he crosses all up inside my body, connecting my bladder to my spine, hooking in the wires into my bones, all in a spiderweb tangle of cableing inside me. So my actual device battery (that big square you see in the diagram) is larger, wider, and connects to more cables than pictured in the diagram. Typically the Medtronic Interstims are either for pain purposes alone, urinary purposes alone, bowel purposes alone, or cardiac purposes alone, only ever focusing on one condition at a time. However, my Doctor Frankenstein style mad scientist slash urologist is the only one in the country who takes the Medtronic equipment, rearranged the wiring, and implanted it in an off-label type surgery and off-label type multipurpose for patients who have urinary, bowel and pain conditions simultaneously. Thanks to his mad genius but uber experimental style of implanting this device, Big Bessie allows me to be able to both pee again and have bowel movements again, which my genitourinary disease and acute angulation of my intestines previously did not allow my body to do on my own anymore.
Here’s a picture of my own x-ray, taken in the summer of last year 2018, showing my implant’s position stuck between my rib and hip as it was at that current moment. It never stays put though, so its always gruelingly moving around inside the pocket my surgeon made for it in my abdomen with every slight movement or readjustment and repositioning. Sometimes it’ll be poking out the front of my right side, sometimes it’ll get stuck on my hip, and sometimes it pops out towards the back, hanging by the skin as it becomes more and more superficial.
The device isn’t perfect and it constantly goes wonky on me, making me resort to catheterizing still when I’m not able to pee, but it keeps me alive. My experimental yet life saving brutal butt-kicking box of an implant is what keeps me from going into kidney failure again, keeps me off dialysis, and keeps my body going till some better, smaller, more efficient technology becomes available one day. And it will! I know the future of medical technology holds all sorts of awesome exciting things for me, so I’ll keep hangin’ in there with this here Big Bessie as long as it takes, till technology catches up with my body. In the meantime I’m just so dang grateful that there even is a device like this to help my bladder, kidney, and intestines continue to function, no matter how agonizing it may be, it keeps me alive, and that’s the biggest thing I could ask for.
So are you really in pain all the time, like non-stop all the time?
Yes, I am in constant continuous pain every waking moment. I honestly cannot even remember what if felt like to not have pain. I’ve been in pain for 14 years now, but the pain became more prominent and constant about 8 years ago. The bladder, implant, musculoskeletal, and neuropathic pains are continuous never ceasing, though they do amplify with any small movements like bumps on my bed and transfers to the commode, and flares throughout the day. But yeah short answer is yes, I am in pain all the time, it never goes away, and I have learned to adapt to living in these extreme levels of constant pain, just making the best of each day with what I have in front of me.
Where is your pain? What does it feel like??
All over my body from my bones to muscles to my organs to my skin. To simplify and be more specific, my skin, abdomen, bladder, kidneys, urethra, spine, limbs, hands, fingers, joints, lungs, tissue, bones, and the ferocious interstim implant I like to call “Big Bessie.” If I had to list the pains in ascending order from moderate ass-kickin to most unbearable ass-whoopin, I would say headache/migraine pain, neuropathic pain, musculoskeletal pains, organ pains, and then the worst is my interstim implant pain. Here’s a little bit more on what they’re like for me:
My headaches are something I don’t even think twice about to be honest, compared to the severity of my other pains I don’t even complain about them, it’s only when loud sounds cause instant headaches that can turn to migraines then it becomes more of an issue. It’s a throbbing type ongoing headache that fluctuates throughout the day, and amplifies as noise volume increases. When I get a migraine its like an elephant is sitting on my head, it’s like ‘no Horton, don’t sit on my head, off you go now’. Haha.
The neuropathic pains are much more problematic, there’s the extreme pain on my skin from a condition I have called Complex Regional Pain Syndrome Reflex Sympathetic Dystrophy (CRPS/RSD) which worsens with any slight touch, there’s the deep neuropathic pains in localized areas where the surgeries did irreparable tissue damage, there’s the stinging type neuropathic pains along my spine, and then there’s the burning hot pain that makes my feet and limbs feel like they were lit on fire. One of the most annoying areas of nerve damage is in in the tissue running along on my left bum cheek (sorry if its tmi, but this blog is all tea boo!) down to my upper left leg and outer thigh. This happened after one of my previous interstim implant surgeries got infected with a flesh eating bacteria and was left unattended due to neglectful doctors so it ate up a good chunk of tissue inside, and never healed up. The whole area feels the stinging super strong from the deep lower muscle to the top layers of skin. Touching it flares it up more, even gentle wash cloths in the shower.
The next pain that kicks my butt is the constant musculoskeletal pain. This includes the pains from all my joints, bones, and muscles all along my body. It’s gotten worse over the past year, and specifically these past few months as my muscular disease has been progressing. I wake up feeling like I got hit with hammers all over my arms, hands, and fingers, and my legs feeling like they got run over by a snow plow. The pain on my wrists and fingers feels kinda similar to like the pain you get when you get your hand slammed in between a car door, but just ongoing. My fingers get worse as I type and my wrists get worse as I use sign language, but after losing the ability to speak, these have become my only means of communication, so I have to deal, just taking breaks from typing and signing throughout the day.
The next pain that’s caused some of the biggest troubles over the years are my ongoing organ pains. Specifically my bladder, kidneys, urethra, and lungs. The lungs start hurting more when the fluid builds up more in my airways, and as it gets stuck it gets harder to take in breaths as well. Each inhale feels like I got socked in the chest by Muhammad Ali. The bladder is the biggest contender to deal with though, causing intense crushing pain round the clock, feeling like I got impaled through my bladder by a huge Viking wielding a jagged spear (any Vikings fans out there get this reference? Haha). It gets worse as my bladder fills up and becomes unbearable when I’m unable to pee. My interstim implant for my bladder is supposed to help me pee, but it’s a very glitchy device, and with my implant and wires constantly migrating its impossible to get a consistent urinary pattern. I try to adjust the amplitude of the electrical current to my bladder, but it hardly ever works, and is requires continuous adjustments with the antennae. When I’m unable to push the pee out it starts shooting up my urinary tract up to my kidneys, causing extreme sharp shooting pain up to my kidneys. Then when the kidneys get filled up they start feeling like swollen butternut squashes, with mega stabbing pain. Once I finally push some pee out, the pain in the urethra is like a razor sharp knife stabbing and lodging itself jaggedly in my crotch. I do apologize if any of this information is uncomfortable, but it’s the unfiltered truth of my day to day life, its just something that’s as familiar to me to talk about the weather boo, haha.
One of the most excruciating of all is the pain of my bladder interstim implant, which I decided to nickname “Big Bessie”. I’ve had 7 surgeries to replace my implant now, but this particular location where they put it in my abdomen the last time, is by far the worst. My urologist had made the pocket he dug out in the abdominal wall way too large, so now the implant moves around like a loose yo-yo, causing extreme cutting, ripping, and tearing pain, as it scrapes through my tissue inside with the slightest movement. When the implant gets stuck up by my rib like where it is now, even breathing causes it to move and cut the raw tissue with each breath, like what its doing at this current moment as I type this. The implant itself is a metal box about the size of my hand, with the thickness of a retro tv remote, and wires that connect to my spine and bladder area. But it’s those corners that really dig me in with them razor sharp relentless slicing. That’s why I’m only able to tilt up in bed at about a 15 degree angle, and why transferring to the commode and shower chair are such an unbearable process. The Big Bessie pain is always at a level 10, but during each transfer the implant shifts, slides, and pops to different locations on the right side of my abdomen, causing the pain to spike to total agony off the charts level. It’s a constant bum-kicking device, but it’s a life saver.
What do you take for your pain? What is your pain management plan?
Indica thc & cbd oils, indica-cannabis cookies, cannabis topicals tramadol, lyrica, lidocaine patches, rizatriptan, naproxen/aleve. Lyrica is a nerve damage medication I take twice a day for neuropathic type pains, and though it doesn’t make too drastic of a difference, it at least tames down the fire on my feet at night. I used to be able to manage the pain better when I was on heavier meds like morphine and fentanyl round the clock, but that wasn’t gonna fly, as the doctors were saying it could stop my heart at any time. I’m highly opioid-intolerant now, so I’m only able to take tramadol once a day, otherwise I go into a neverending puke storm, it ain’t pretty boo. But thankfully I found cannabis as a medicine, and I’m able to take as much as I need without any negative side effects whatsoever. The pain is so intense and constant that I have to take my indica thc & cbd oil every 3-4 hours round the clock as my main pain management regimen, but I take a indica cookie in between when I need. Then there’s the extra stuff like the lidocaine patches (which I have to use super sparingly and try to reserve my last few since my insurance won’t cover it anymore, the medical system here in the states is such rubbish), anti-inflammatory Aleve at night when my side gets super inflamed or my bones won’t let up, and then I have rizatriptan for when I get migraines. Every now and then, ma’ gently applies cannabis topicals on my implant area to try and soothe the skin when it causes that inner tissue ripping pain, and rubs it on my bones and joints, but its mostly soothes rather than actually helping the pain, no matter I still just try to do whatever I can to try and manage my pains.
My doctors have pretty much given up on pain management plans now, at my most recent appointments they tell me we’ve just exhausted all our options, and the only thing they can do now is continue to prescribe the tramadol and Lyrica. It’s okay though, the doctors may have given up but I haven’t. I’ll keep hanging on and pushin on till technology catches up with my body’s needs. I do believe the future of medical technology holds tons of options for me, and I’m so excited to see what’s to come in the following years and can only imagine all the rad things that’ll be available in decades! And could you picture what medical technology will look like in like 2 decades?! I’ll hang on as long as it takes boo. :-)