RSD: how i became a robot

so RSD stands for Reflex Sympathetic Dystrophy. the current versions of this diagnosis have types, but back when i got mine it didn't have types. it is also called Complex Regional Pain Syndrome. if you are familiar with dr. house- it is what he has. basically, it is a form of chronic pain that just goes on & on past when the preceding injury should have healed. the nerves just keep sending "help pain!" signals for no known reason. it can also spread. i'll recap & add a little to what i posted on the pain is a 4 letter word post....

i had minor surgery on my left foot my sophomore year of high school (living in michigan) 12/92. a month or so after, my foot did not look right- it was shriveled up, the skin was yellow & blue & it had very poor circulation (my mom used to say "it looks like a dead fish") plus it still hurt. my surgeon, a pediatric orthopedist, gave me the initial RSD diagnosis and said it was no big deal- i'd do some physical therapy. physical therapy didn't go well as my foot had become so sensitive it was hard for me to put on a shoe or a sock, so letting a PT touch it was out of the question. so was weight bearing (i used crutches). they also did "switch baths" where they take a double sink or two tubs and have one full of icy cold water and the other full of as hot-as-you-can-take-it water. you switch back & forth 5min hot, 1min cold, 4min hot, 1min cold... etc. those HURT, the idea is to shock the nerves back into normal sensation or something, i don't know i just remember them being like torture. my pain started to spread across my foot and up into my leg. PT tried giving me a TENS unit... which is little sticky leads that i would keep on my leg with a stimulator in my pocket. it was all exterior. i would get some increased blood flow where the leads were placed but the rest of my limb would stay cold. by 3/93 i ended up at another doctor that did my first nerve block- the first one they do is a "differential" - what they don't tell the patient is that the first thing they inject into your spine is saline, to weed out the fakers. then they do a low level of anesthetic where you can still feel & move the limb most people get pain some relief, then they knock it out entirely. i only ever got pain relief if they knocked it out entirely but would get increased blood flow at the moderate dose. the doctors in michigan didn't really seem to know what they were doing & just kind of "eh, wait and see" meanwhile my pain is spreading and the blood flow problems are increasing and i am losing muscle in my calf...

so the next doctors we went to were in baltimore- i had previously lived there and being a big city there were more options. we found a pain management doc that put me on a rigorous block schedule 2-3x/week and he also did a variety of them. so what is a block- a block injects anesthetic directly onto a nerve. the type they were doing were mostly lumbar sympathetic blocks- going in through the lumbar region of my spine and directly targeting the sympathetic nervous system. i also had bier blocks, which is where they cut off circulation to the limb and inject it full of bretylium. the idea is to calm the nerve down- get it to stop sending the erroneous signals. like when your computer/phone is running slow you shut it off or restart it and then it works fine. for me, the blocks would give me some relief while the block was in effect, but never as much as the doctors wanted (ie that other patients tended to get) and the relief was never lasting. they tried a bazillion meds- most of which i had bizarre reactions to & was on for less than a week. the docs in baltimore ran a bunch of other tests too- bone scans, nerve conduction and velocity (ouch!), bone flow studies- some times they'd show something a little off but most showed nothing. but if you looked at my foot- you could see there was something wrong with it. still had that dead fish look to it and i was SUPER protective over it & wouldn't let doctors touch it. i still couldn't put on a shoe but was kind of tolerating a loose sock- at least in public. by april my baltimore doc literally cried when he told me he couldn't help me, but he referred me to one of his mentors in cleveland.

i ended up in cleveland from 4/93-6/93. they started me on lumbar sympathetic blocks again- same results. they tried placing a catheter- so instead of getting a block that was one injection, it can last for a few days or weeks. i had issues with the catheters not staying in place, they'd move or i'd end up with a high white blood cell count so they'd have to take it out due to risk of infection. they also did an interesting test called a thermography- where they get an image of the foot based on thermal readings. they do one to start, and then you sit in this cold room & aren't allowed to move or touch the area they are imaging- when i'd get this done on the second image, my foot just wouldn't show up. like it wasn't even there! so obviously there were still blood flow issues. i also started to see the adolescent psychiatrist. and well, i didn't like him. he always came and got me up at like 7am and i was hardly awake and he would ask me all these stupid questions like if i thought my TV was talking to me. mostly i just gave him quick answers and rolled my eyes at him. at some point he decided i was faking the whole thing. my pain anesthesia doc assured him i wasn't. when pain annesthesia doc went out of town for a conference, the adolescent psych guy bullied the fellow that had taken over my case into letting psych take over my case. he talked my mom into it by saying that on the psych unit i would be able to attend daily schooling & socialize with peers. i remember my mom saying that after she signed the ok for me to be put on the psych unit, the psychologist said, "now (pain anesthesia doc) will have to answer to me" such drama! anyway, when pain anesthesia doc returned, i was on the adolescent psych unit and he was not allowed into any of the team meetings to discuss my case.

the psych unit was probably the most bizarre 18days of my life. i remember the first exercise we did in a group- it was about having friends.  this exercise had us put our name in the center of the page & then draw circles around it- each layer was friends of a varying level of how close they were to us and we had to write names of people in them. the other kids all had like 2-5 people on their paper. now, i was by no means ms popularity, but mine was like some crazy diagram with names all over it. the first kid i met, scott- he had wanted to kill people because pink floyd told him to. most of the other girls had eating disorders, except one of my roommates, kim, that had some sort of a stroke and brain damage. she would leave feces on the toilet & freaked out when we watched the movie "Big" cause she was afraid of the jeanie machine (it was the devil). they started me on higher doses of antidepressants at that point too. and they kept upping them claiming that my blood levels weren't high enough. i just remember thinking there was no way out of the situation. i just kind of shut down. my parents had been arguing with the staff about the "level system" because i wasn't allowed to call my friends- something i had been previously doing daily. by the time i was allowed a phone call, i didn't even use it. i didn't want to talk to anyone and i didn't have anything to say. my suicide plan involved what i called "tearing my self open in the hopes of getting out" the vision i had in my head was not of cutting not my wrists but into my upper thighs (i had a piece of glass from a broken compact mirror the nurses didn't know about) and literally ripping the veins/arteries out. i had also started hording tyelnol- saying i had a headache and then just saving the tylenol. i knew tylenol was a blood thinner so i wanted to make sure i was going to bleed fast so i was going to take like 10of them before starting. i was also getting more blankets- since the ones we had were thin i kept complaining i was cold (which i was anyway) at night so i could get more. this was also because they did 15min checks on us and i wanted thicker blankets so i would have more time before they figured it out. i was also waiting for my friend julie to be discharged. she had recently moved to just being on days (she was a roommate before) but i knew she would be the one to find me in the morning and i didn't want that. kim i wasn't so much worried about. but obviously, this is not what happened. i don't have an explanation for what happened. one thing i knew, was that i was not going to tell the doctors about my plan. we did a daily survey about how we were feeling, which always asked about suicidal thoughts. i always checked no- cause i knew when you checked yes you went on constant observation, weren't allowed to wear shoes and had to sleep in the hall by the nurse's station. how the hell would i be able to kill myself then?!! so telling them was not part of my plan. during my weekly meeting with the attending i was asked the standard questions and gave all my standard answers, until "are you having any suicidal thoughts?" i took a moment and all of a sudden my head turned to the right and looked out the window, i heard my self say "i just don't know anymore" and then turn around and made eye contact with the doc. inside my head i am screaming "what the fuck was that?!" it was literally like some other force took over for a moment. i was pissed and had no idea where it had come from. the meeting ended and i went back to my room. i fully expected to be put on constant observation. but in a few hours, i was instead transferred off of the adolescent psych unit and admitted to the pain management unit- which is still technically run by a psychiatrist, but they acknowledge your pain is real and give you coping strategies.

the pain management unit is where i should have gone in the first place. but, it wasn't open at the time and they kept saying i could get the "same care" but be with people my own age on the psych unit so i would have a better social experience. ?! i met some really cool people on the pain management unit (i met a couple girls on the psych unit i am still in contact with)- most of them would come in severely addicted to pain medications (also not an accident that the pain management unit was on the same floor as the addictions unit). there was one elderly woman that came in and was just disgruntled, pissed at the world, would just hold her head and not talk to anyone. until she had detoxed, then she had such amazing stories! she had helped build the microchips that put the shuttle on the moon! anyway, the first thing the nurses noticed when i got to the pain management unit was that i was a zombie. they immediately cut my medication in half. i was once again allowed to call my friends, listen to music, hug people, open a window & pretty much do whatever i wanted. we all ate meals in the cafeteria, and knew a secret path that was shorter and involved knowing codes to security doors. i was back in daily PT and had access to my pain anesthetic doctors. we still did groups and learned how to make "I" statements, had stress relief classes & coping strategies. i learned a lot there, and still use a lot of it. it was mostly: "there are things in life you can change and things you cannot. at this time, your pain is not something you can change- so you have to change how you look at it and change yourself to be able to deal with it. now get out of bed and get on with your life!" they have a monthly aftercare meeting too, i went as often as i could make it back to cleveland. after the pain management unit I went back to michigan. i would have occasional appointments with pain anesthesia docs to follow up, i was still on crutches, barely tolerating a shoe. still had muscle loss- my calf was 1.5inches smaller in diameter on the left. having blood flow issues and color changes (would go from bright red to blue). then i became a robot.

in oct of 93, i got my robot parts. it is a spinal cord stimulator (also known as a dorsal column stimulator) by medtronic. my first one was the Itrel II. they first place leads in your spine, and the box is external- to see if it will work before going all the way. it is interesting as you notice a difference immediately. it works similar to how a nerve block works- except it is with electric/magnetic signals instead of anesthetic. kind of like a circuit breaker in my spine. it still didn't take care of all the pain, but it was enough that they went through and implanted the system for good. soon i was down to walking with one crutch, and then on to just a cane (i walked with it on the same side for weight bearing instead of how you are supposed to walk with a cane which is in the opposite hand, i did this WAY before dr. house) it also took care of my blood flow problems and since i was actually able to put some weight on it, the muscle started rebuilding too. i was still having occasional color changes but overall, my box took care of most of my symptoms.

5/94 i was in PT doing some weight lifting with free weights for my arms. i suddenly dropped the weight in my right arm. it had been a long day and my PT let me go early. when i got to my jeep, i could not lift my right arm to get the key in the door. on the short drive home i watched it turn red-blue over and over again. we called pain anesthesia doc in cleveland and i was in to get a nerve block in less than 2 weeks (usually a 3-6mo wait). now, for an arm- the nerve blocks i got were called stellate ganglion... and they go in through your neck. with a very large needle. they shove your trachea aside and shoot. not fun. especially when the resident misses and they have to do 2 in one day. pain anesthesia doc promised i would never have a resident do a block on me again, and only he would do them. the funny part of a stellate ganglion block is that it makes the pupil on the side they hit get REALLY big (this is also how they can tell if it took). i had a few more stellate ganglion blocks & continued PT, it never took off the way it did in my leg- probably because we caught it so early. it was hard for me to use my right arm for a while, in school i would hold my pen in my right hand and use my left hand to move it around and write. my friend christine would meet me before our first class and help me put my hair up into a bun. i think by the end of senior year i was almost writing normally & able to move my arm fully.

fast forward to now. i still have daily constant pain in my left leg from my foot up past my hip and right arm from my hand up to about my shoulder. though i have more of a range- it used to be severe all the time, now i have days where it isn't so bad just there in the background. they are still sensitive to light touch especially if it is constant from tight clothing (which you rarely see me in). i cannot wear a sock on my left foot for a full day (yay florida! yay yoga!) and take my shoes off whenever possible (yay florida! yay yoga!) if i keep a sock or shoe on for too long, the pain will suddenly jump up and start burning (usually it is just more of an ache). and then even once the offending sock is off, it will take a while to calm down. i also cannot sleep with the covers on my left foot, it starts to feel like an elephant is on my leg. breezes from ceiling fans or a/c are also a problem- those feel like you are throwing razor blades at exposed nerves. this is why i am always messing with your a/c vents in the car. i rarely have color changes, but sometimes they do pop up.

my robot parts were upgraded (my batteries died) in 1/99. my theory is that they programed the leads differently. i never got the same pain relief, and my back started having severe muscle spasms and i could hardly stand up. i went to a doctor in tampa- i said, "when i turn my implant on my back goes into muscle spasms. when i turn it off it is fine" he told me my piercings were the problem and gave me a script for anti-seizure medications. i never went back. i just started using my implant only at night so that my pain was down to sleep but i didn't have to stand. and i just learned to live with it again. there was a lot going on in my life around that time so medical stuff just got pushed to the back. i still haven't gone in to get it fixed- which at this time will be replaced (and the new models are rechargeable!) as my batteries- well i thought they were dead but then recently my box has been turning itself on randomly. it has always done this at shows (the magnetics from all the speakers/equipment turn it on/off/on/off etc and that makes my back hurt- why i am always in the back at shows) but now it is just doing it while i'm driving or standing in the front yard. i have no idea what is up with it. BUT- there is this new issue called POTS... and i am avoiding surgery and going under general anesthetic until i can find a doctor that knows about POTS, how to treat it and what i need to do to support my central nervous system while under general anesthetic. so we'll make POTS our next post...

'whew. that was long!