The Nerve Block Saga
Uh oh, there's a table of contents. That's how you know it's serious business.
Content Warning: contains many mentions of needles/injections; medical gaslighting; some survivors of sexual assault or violence may find Parts 4-6 in particular to be triggering- there is no SA, no mentions of SA of any kind, but involves a traumatic encounter (not sexual in nature) that continues despite the ability to consent being clearly revoked. In addition to loss of consent, it has themes of gendered power imbalance and subsequent retellings of said traumatic encounter with dismissal and invalidation from authority figures, all of which which may mirror SA in some cases.
Ready? Let's go.
Part 1: On Doctors and Patients
Strap in, readers, this is a long one. Grab a snack and a cup of tea, put that compression gear on, and make sure you've got your blue light glasses, 'cause we're going to be here for a little while.
I haven't gotten along with every doctor I've seen. That's not a surprise; just considering the sheer magnitude of that number, I'd be more surprised (and honestly a little concerned) if I had gotten along with every single one. And that's okay! Doctors aren't machines and neither are patients. Not everyone is going to mesh with everyone else. Sometimes it's a matter of communication styles, sometimes it's treatment philosophies, sometimes someone (or everyone) in the room is just having a really bad day, sometimes a doctor should've retired a decade ago...the list goes on. Again, that's okay. No one is perfect. Doctors aren't perfect and I'm absolutely not a perfect patient. I wasn't always good at this kind of conflict, but now when these sorts of disagreements happen I'm mostly alright. You know, I weigh my options and consider whether I value the relationship with this doctor enough to figure it out (often easier said than done) or if I want to cut my losses and move on (also often easier said than done, thanks to our delightful insurance system). Either way, I try not to let the problem escalate if I can help it.
The doctor-patient relationship is a tricky one. It's a professional relationship- a business relationship. Right? Except, it's not, exactly; it's also an extremely personal relationship. The patient comes into the office, but they're not at work. They're there because they need to hire someone, a doctor, to help with the most intimate thing possible, their body, a job no one else can do. The stakes for us can be very high, occasionally literally life-or-death. The power imbalance is jarring. There's a staggering amount of trust that we're expected to just hand over. So, tensions are high. Disagreements are going to happen. And when they do, it can feel pretty fucking terrible.
In all of my years of seeking medical treatment, all of the many, many doctors I've come into contact with or facilities I've been in- I can count on one hand the number of times I've considered writing to a state medical board or looking into legal options. This story contains two of those times.
A small disclaimer before we begin: I've changed the names of all hospitals, clinics, and physicians for obvious reasons, a note that I'll repeat later on because it's important. Additionally, it should be noted that, although several residents are involved in what you are about to read, these situations were the responsibility of the attending physician. In fact, there are a few residents here that I'd be thrilled to call my doctors.
Part 2: Nerve Blocks! What Are They? And Why?
One of the delightful conditions I deal with is called occipital neuralgia. Bilateral neuralgia of the greater and lesser occipital nerves, to be exact. To be brief (for perhaps the only time in this whole damn novel of a blog entry), the nerves at the base of my skull get irritated = jolts of stabbing pain are sent through my head.
It legitimately feels like I am being stabbed, sometimes the pain is blinding, sometimes I lose track of what's happening around me because the pain is so intense. There's pretty much always a persistent low-level headache, but these jolts last anywhere from a few seconds to a minute at a time, go away for the same amount of time, and continue in that pattern. Sometimes I go days or weeks without a round of stabbing pain (I don't really like to call them headaches because that doesn't feel accurate). A lot of people hear "occipital neuralgia" and they think I'm talking about migraines. These are not migraines. Don't get me wrong, I also get migraines. It's just that these are definitely not the same. I don't really want to get into the physiological differences here, this is already so long, but google is your friend and you'll find lots of straightforward info for all knowledge levels.
It's something I've been living with for many years. No lifestyle changes helped, nor did any oral medications. What do help, however, are occipital nerve blocks. A nerve block is exactly what it sounds like: something that blocks a nerve. An occipital nerve block is made up of injections around the occipital nerves to numb, or at least dull, the pain and inflammation associated with those nerves. The order of operations is as follows:
I'm put in a seated position facing the wall with my head down, usually resting on my arms, which are usually on an exam table (or other table that can be raised relatively high and is stable). Some people prefer to lie down, but I find that keeping my feet grounded to the floor helps with the pain. It also gives me greater access to my diaphragm and lungs so I can keep breathing the way that I need to, and in the past it's been easier for whoever is administering the injections to access more of my head without worrying about hurting my neck.
Whoever is doing the procedure will locate the nerves by pressing places on the back of my head until we find the spots that hurt the most. This may not seem like the most efficient method, but it's not a particularly large area and trust me, if you're experiencing a flareup of this condition, there is NO AMBIGUITY about where those nerves are once you've found them. They'll then mark those spots with a pen so they have a guideline for where to direct the medication, and so they know not to inject directly into that spot. No one wants them to put any needles straight into a nerve, that would suck for everyone involved.
They spray the area with cold spray- basically a topical anesthetic that comes in an aerosol can with a concentrated nozzle and feels really, really cold. It's a painful procedure, and this step helps massively.
Finally, the provider injects the back of my head, around the nerves, with an anesthetic (sometimes people also use a steroid, but I don't for a few different reasons). I think I might be on the extreme end of the spectrum in terms of how much medication/how many injections I get? I haven't actually seen any data about that anywhere, but I do know that my experiences have been ... more ... than anything I've read about. What I do know is that I get several injections around each of the greater and lesser nerves. Sometimes there's injection fluid buildup ... more on that later.
The area goes numb within a few minutes. Usually a couple of the injection sites bleed a little bit. I go home (if the office is less than 30 minutes away, I can drive myself. Otherwise, I need help). I put some ice on it if I want to (I want to). After the initial numbness has worn off, it's definitely sore for about 48 hours while everything heals and calms the hell down.
And then I get 6-8 blissful weeks of not being stabbed repeatedly in the head with an icepick. And the process repeats.
There's some added nuance for patients like me who have a ton of comorbid conditions, especially EDS. Because I have hEDS, special care needs to be taken with my cervical spine. Additionally, my tissue and blood vessels tend to move around in unexpected ways. Which means that special care also needs to be taken during the injecting process to insure that everything is in the right place, nothing has moved, no veins are being squished by fluid buildup or hands, no needles pierce anything they're not supposed to because the tissue is behaving different than expected, etc.
Part 3: Nerve Blocks! I Like 'em!
Before I moved to CA, my wonderful neurologist did them for me. The second time was after the birth of his first child, and it was very clear that he learned a whole lot from that experience; there was a lot of breath coaching and he even told me to squeeze a nurse's hand when it hurt. It was honestly pretty adorable.
He'd been my neurologist for a few years before we got to nerve blocks as a treatment option. His specialty was actually movement disorders and I was seeing him for essential tremor, but he was a saint who was also treating the rest of my neurological conditions instead of forcing me to try and navigate the hospital's neurology department's bureaucratic red tape. If there's one thing I've learned from being a sick person, it's that hospitals really don't like it when you have multiple things wrong within one specialty. They absolutely cannot wrap their heads around someone having migraines *and* other kinds of headaches *and* essential tremor *and* other neurological issues. How ... dare you? How could you? What are they supposed to do with you? You, who already have a neurologist. How and why would you possibly want another neurologist in addition to that neurologist? What has your current neurologist done to offend you? Do you hate them?? Do you??????
It's like that.
Anyway. My one, singular, neurologist was treating me for everything and we landed on nerve blocks. My body did really well with them. It's one of the rare occasions that I had zero side effects. No injection site reactions, no syncope or presyncope (we took extra care with dizziness given my history and rebellious autonomic nervous system, but it wasn't an issue at all), no trouble breathing, nothing. No procedural incidents at all! In all of the times that we went through it, every time was easy, every time was successful.
Now, that's not to say it's totally without its downsides. This procedure? It HURTS. You're stabbing a bunch of needles into a space that already feels like it's being stabbed and injecting liquid where it can't really spread out well, which creates some pressure in addition to the stabbing. There's only so much a surface level cold spray can do. I'm not going to lie to you, the pain can get alarming. I am 100% unashamed to say I involuntarily teared up the first time. Honestly, I've been sitting here trying to find a way to describe it, something to compare it to at least, but I really can't. It's just awful.
But here's the thing: it's a known entity. It's the same pain every time, it only lasts a few minutes, and I know that on the other side of it I have weeks and weeks of relief. I know what to expect and I know how to keep myself simultaneously distracted from the pain and focussed on my breathing. There are coping strategies to make it easier. And again, it's only a couple of minutes, and then it's over. I breathe. I make a conscious effort to be aware of my feet of the floor. When it hurts, I clench my fists, push my feet straight down, and breathe more forcefully. I talk to the other people in the room, sparingly, so we're all on the same page throughout the procedure, they know I'm alright, and I know how much longer it'll be until sweet, sweet stabby freedom. I've done it so many times now that I can get into a sort of meditative space, and the pain is much less powerful.
I should note that I may have a bit of an advantage here in that the way I feel pain is kind of a mess. When you spend a very long time with chronic pain, your body tends to adjust. So when that starts in early childhood and never stops happening, it tends to give you a skewed perspective on pain and how to deal with it. So I don't know how this feels for anyone else, and I don't want it to seem like I'm being dismissive of anyone else's pain. I only know how it feels for me (searing, survivable), and the pros of the effects far outweigh the cons of the procedure itself.
So yes, they hurt. They're a much more concentrated version than the "headaches" themselves. But I cannot stress enough how little I care about this particular pain. Do I feel it? Yes. Do I hate it? YEP. Does it make my brain press some sort of override button so I pass out just to get away from it all? No. Is it the worst pain I've ever felt? If only you could feel how hard I'm rolling my eyes at that question being asked.
Okay, yes, I know I'm the one who rhetorically asked it. But I only did it to show you that other people have asked it before! Get off my back, gosh!
Part 4: An Incident
Speaking of focussing on my breathing, I've had to do a lot of deep breathing prior to writing this section. Going through it all again in detail is more upsetting than I thought it'd be.
Just a reminder: I'm going to change names because I still interact with people who interact with this doctor. Not patients, necessarily. But also I don't want to get sued? That's a thing that can happen, right? In any case, what you're about to read is what happened from my perspective, but I've changed names. And I need you to keep in mind everything that I just said about how much I appreciate the existence of nerve blocks and how much they help and how easy they are, because this is going to be ... not that.
When I moved out to CA, I had (am still having ) a very hard time finding neurology treatment. I was put with a neurologist at one hospital system, Hospital 1, who I'm sure was great for patients within her chosen field of study, but she Did Not Appreciate getting stuck with me and couldn't really help me at all. Let's call her Dr. Hamel. Hospital 1 matched me with Dr. Hamel because of my tremor, but she was more interested (and excelled) in other movement disorders. And she didn't deal with headaches of any kind. It was pretty clear that I was wasting her time. I spent the better part of a year dealing with Hospital 1 trying desperately to be seen by someone else. I failed (I did get to school a PA who told me that "EDS is an orthopedic condition" though, which was very empowering, and a story for another day). Dr. Hamel put in a referral to the headache clinic, but the farthest I could get was the same conversation no fewer than 6 times with scheduling people who a) didn't know the difference between nerve blocks and botox, b) called every headache a migraine, and c) insisted that every possible injection could be given to any patient by whatever PA happened to be there, regardless of comorbid medical conditions. No one ever knew about hEDS or cervical spine abnormalities, or could give me any assurances that the person who would be sticking needles into me would either. So. None of that then. I gave up. I decided then and there that I'd deal with Hospital 1's neurology department again when hell froze over. No thank you.
Eventually I found an EDS-knowledgable PCP, Dr. Oliver. His office was two hours from my house, but I. Did. Not. Care. He was wonderful. So when he told me he was opening a clinic in Hospital 2, I was definitely intrigued. When his office called and told me that he would only be seeing EDS patients in his new clinic from now on and I'd be required to transfer my care over there, I was ... less excited, but still thrilled about the concept of an EDS clinic. We'll put aside the fact that he's no longer my PCP because he's considered a specialist at the clinic and I now have to pay my specialist copay every time I want to see him for the EXACT SAME APPOINTMENT I was paying my general practitioner copay for prior. We'll put it aside. I guess.
At Dr. Oliver's clinic (also two hours from my house), there was also a neurologist, Dr. Neil. He's since passed away, but appointments with him were fun while he was alive. At our last appointment we had a great chat about capitalism and the pharmaceutical industry. I liked him. He was good people.
Dr. Neil did not do nerve blocks, but he referred me to the pain management doctor at the same clinic, Dr. George. And now, finally, we get to The Incident.
Some things to acknowledge:
it had been a few years since the last time I'd gotten any occipital nerve blocks
this was my first time getting nerve blocks with this provider
this was my first time getting nerve blocks at this location
None of these things should have affected how my body responded to the procedure.
It was odd from the beginning. After a truly lovely appointment with Dr. George and his resident, Dr. Denver, they left me alone to get supplies. They came back with a little bit more than supplies; they had two extra residents with them, both men, Dr. Englehart and Dr. Bro. I was not asked if they could be present, I was told that they would be there to learn about the procedure, which happened at the same time that I was being given the standard consent form to read and sign, and setting the room up. Lots of chaos. Remember waaaay back at the beginning when I said there are residents involved that I'd be thrilled to have as my doctors? Dr. Bro is not one of those doctors. Dr. Bro is called Dr. Bro because my brain is incapable of referring to him as anything else. He looks like someone who'd come up to you at a bar, hand you a drink that he bought you without asking (and insisted on bringing you himself rather than letting it go through the safety of the bartender), and then talk at you about his lucrative finance job.* I've had this doctor before. We've all had this doctor before. He immediately assumed he knew more than I did about my own body and medical conditions, despite clearly being there because he was supposed to be learning something, and every single thing he said was condescending. He is a big part of what went wrong with that appointment.
* To be clear, I know absolutely nothing about Dr. Bro's personal life and that is not a statement about what I think he would literally do. Please do not take it seriously.
I got into a good position -the same position I always use- and everyone made sure they could see the back of my head. This might be the last thing that went entirely well for the remainder of the appointment.
Starting on the left side, Dr. George asked one of the residents to apply the cold spray. They did, but neglected to protect my face initially, so some of it dripped down my jaw onto my cheek and mouth. No biggie, stuff happens. The first injection went alright, I think? I don't remember, so at least it wasn't traumatic. Hooray. Remember waaaay back in the last paragraph when I said Dr. Bro was a big part of what went wrong with the appointment? He wouldn't stop talking. He was trying to have a conversation with me (at me, honestly, it really didn't matter what I said) pushing the importance of physical therapy. After I'd already said I go to physical therapy every other week. In that building. And would be doing so for at least another year. I told them all the name of my therapist. It was also clear that he didn't understand their own EDS PT protocol, or was even aware that any existed. He threw out several incorrect "facts" about EDS, which put me in the position of navigating how to correct him without bruising his ego too badly in front of his colleagues, remain professional myself, keep it brief to channel breath where it needed to go while somehow projecting my answers in a way that he could hear, even though I was facing a wall with my head down and face buried in my arms, keep track of anyone asking me relevant questions at the same time about the actual procedure happening, oh yeah: WHILE BEING STABBED REPEATEDLY IN THE BACK OF THE HEAD WITH NEEDLES.
Let's be generous and assume he thought he was doing a good thing and "distracting me from the pain," as was one excuse so helpfully given by another physician after the fact. Did he ask me if that's something I wanted or needed? If so, is that the kind of distraction that works for me? Was he paying attention to anything about my responses that could have communicated how I was feeling about the interaction? Did he even once check in to see how I was doing? No. The answer to all of those questions is no. If, and that's a big if, he put some sort of misguided forethought into this genius move, he failed the moment he neglected to take the patient's needs into consideration. He just came into the room and, after literally 2 minutes of being there, decided that that's what was best.
For those of you keeping score it was, decidedly, not best.
Here's the thing, though: I really, truly don't think he was trying to distract me from the pain. It felt more like he was showing off all of the massive amounts of EDS and PT knowledge in his Big Doctor Brain for Dr. George (incorrectly, and at the expense of the patient, which maybe says more about you as a physician than how many facts you can spout off in an exam room ... just putting that out there). He took my coping mechanisms away and made it harder to breathe. I could hear that he was pulling focus in the room. His behavior during the procedure and going forward (oooh, just wait) was unacceptable.
But it's time to revisit an important concept: the attending physician was in the room, and my wellbeing was his responsibility.
During the hour long appointment we'd had preceding the procedure, we discussed what I needed. When things with Dr. Bro got out of hand, it was Dr. George's responsibility to shut it down. If that were the only bit of forsaken responsibility, I wouldn't be writing this now. Unfortunately it was just the tip of the trauma iceberg.
The shots on my left (that's right, we're only a couple of injections in at this point; if you think this is a tedious read, just imagine being there!) mostly went well. Except I began having some trouble breathing. I remember saying something along the lines of "I can't breathe" or "I'm having trouble breathing" and getting no response. I wish I'd followed up on that harder, because now I don't know if I actually said nothing, if I said something but it was unintelligible, or if I was perfectly clear and they did nothing.
As soon as they began the right side, I felt an agonizing, piercing, icy cold pain, unlike anything I'd ever experienced before. It was in the correct spot, but it wasn't the way my ON headaches feel and it wasn't the way nerve blocks are supposed to feel. And then I began to feel ... strange? Like that feeling when you're so, so close to sleep, but you need to stay awake? When you've been drifting off, the exact moment that you pull yourself into consciousness? It felt like that moment, prolonged for a few seconds. Except instead of waking up, things started to get bad, fast.
I tried to tell them something was wrong and I wanted them to stop, I know I did, but I couldn't speak. It was like I couldn't get my mouth to move, or even force any sound to come out at all. I could feel all of the muscles on the right side of my body contract: arm and hand curled inward without my control, leg rose to the ball of my foot again without my control, before going back into position but staying engaged. I could still feel all of the injections happening on that side. I have absolutely no recollection of what the left side of my body was doing. It was like I didn't even have a left side to think about. The weirdest thing by far, though, was language. I quickly realized that I'd lost the ability to understand English. The only thing that kept me from panicking through this entire episode was having studied aphasia in linguistics. It gave me something to focus on, something to keep track of, make sense of. It let me stay calm. So, thanks GMU linguistics department. Because of you I was able to recognize a few key features of what I was experiencing:
I realized that I no longer understood anything that was being said.
The sound was not muffled or distorted in any way. It was crystal clear and crisp. I could still tell who was talking by the sound of their voice, generally where they were standing in the room, and whether they were talking to me or asking a question because their inflection changed.
I knew the problem was in my comprehension, not in their speech. I wasn't convinced, for example, that they'd all switched to a different language for some reason. Because...
It didn't sound like any other language. It didn't sound like made up gibberish. They weren't saying nonsense words. It was still structured like English, it's just that there were only sounds where words should have been.
This whole episode lasted for several minutes until it just ... stopped somehow, and they were suddenly helping me sit up (which we'll get to in a second). I'm going to say that again.
A patient in a room of three residents and an attending physician went unresponsive in the middle of a procedure for several minutes.
They did nothing.
They finished the procedure.
Not a single one of them tried to figure out why I wasn't responding.
Again, there are ways in which the residents should have behaved differently. But my wellbeing was the responsibility of the attending physician. It's possible that none of the residents felt comfortable doing anything without the express permission of Dr. George. Obviously, I don't know what anyone said during those minutes, so maybe someone tried to help. Maybe they all discussed pros and cons. Who the fuck knows. When you're on the receiving end of something like that, it's the outcome that matters.
When I was coming out of it it should have been glaringly obvious that I was Not Okay. I realize that I'd never met two of these people before they walked in for the procedure and I'd only known the other two for an hour before, but it was a very involved hour, and it honestly would have been obvious to pretty much anyone. I learned later that it was, in fact, clear that something was off, but no one did anything anyway.
As they tried to get me to sit up, they had to tell me to open my eyes. It was at that moment I remembered that I had eyes, and the moment after that I remembered that they could be opened. I opened my eyes. They had to tell me to sit up again, because in order to perform this brand new opening-of-the-eyes task, I'd stopped sitting up somewhere in the middle. I could only follow one simple instruction at a time. Once I was all the way up, my lungs reminded me with much insistence that they needed help. I tried to ask for my inhaler, but couldn't form a complete sentence. I think I said something like, "can't, uh...can someone get inhaler?" while pointing at my bag. Dr. Denver, who'd been the only resident sitting at my side at this point, quickly got my bag. Now, If you know anyone who has to carry an inhaler, you know that they always put it in the same easy-to-access place in case of emergencies. I'm no different. There's a designated Inhaler Spot in every bag and room that I spend any time with. The Spot does not change, because in emergency situations I need to be able to get to it quickly or someone else needs to be able to find it quickly and easily. So. I couldn't find my inhaler. I've gotten it out of the same spot so damn many times, hell I've been able to find it in the midst of a full blown asthma attack or when my heart rate is so high and my blood pressure is so low that I'm going to pass out and I grab it on the way to the floor to prevent that happening, because I know I'll need it once I'm down there. I've been doing this for more than half of my life, I'm a pro. To say it's muscle memory would be an understatement. I know this seems like an overkill of a defense, but it'll be important later, trust me. The point is, I couldn't find my inhaler. So much of my bag got emptied out onto the exam table that day, none of which was helpful because the Inhaler Spot is reserved for only that.
Alright, fine, I found it, yay me. So ... I couldn't get it to work the first time. All that stuff I said about knowing where to find it? It goes double for knowing how to use it. But I did it wrong. What the actual fuck. I went back in to do it a second time and got it right, and then there was good ol' helpful Dr. Bro. Guess what he had to add to this situation. Laughter. He laughed at me for not being able to work my inhaler. When I got it to work the second time he said something along the lines of, "Yeah that's more like it, I was gonna say..." and then made a sound like I'd said something wrong at a party. I'm sure he was trying to laugh with me, but fuck, dude. The bar for professionalism is so low and he was just skatin' right on under it.
After the inhaler, I thought for sure that someone was going to, you know, do something. Take my vitals, make me lie down, literally anything. But then it became heartbreakingly clear that I was on my own. So I turned to my Apple Watch to at least try to get some measurements, just to grab what little data I could and -drumroll please- I couldn't work the fucking apps. Again, this is stuff I'm used to doing when I'm on all levels of consciousness; it's the whole reason I have an Apple Watch. But I couldn't get a blood oxygen measurement or take an ECG. The whole room was just standing there watching me struggle to take my own vitals. Dr. Bro told me to ice my head for 10 minutes when I got home (ever helpful, thank you), and had to have seen that there was something up because he was pretty close to me and I was definitely seeing two of him, so I know from experience that I was making a strange face and blinking weirdly.
Then they tried to send me home.
They knew I lived in San Diego. They did not know my partner had driven me in that day. They were going to let me get behind the wheel of an operating motor vehicle and drive myself two hours (probably more like three at that time of day) back to San Diego.
I stood up and sat right back down. Turns out I was disoriented. Who knew. They very generously let me have a couple of minutes alone in the room to collect myself before heading out. And then they just ... left me fully unattended. After a few minutes, Dr. Denver came back in by himself and asked if I was ready to go. I was not. I had Questions. I asked what they'd experienced on their end of things and it turns out I already knew. Everything was fine, all of a sudden I stopped responding to them physically or verbally, that lasted for several minutes, they finished the procedure. I didn't ask any follow-up questions. I got up, was very unsteady on my feet, and with Dr. Denver's (sincerely) dedicated help, made my way to the lobby to make a followup appointment that I was certain I wasn't going to keep. Finally, all that was left was to wait for my partner to come get me. Dr. Denver kept a steady hand on me while moving and stayed with me the whole time, even watched to make sure my partner and I got into the car okay, even though the workday had ended by then and he could have gone home.
Part 5: The Aftermath
The eventual good news is that once everything healed, the nerve blocks did their job and lasted about as long as they usually last. However.
The usual couple of days needed to recover stretched into a couple of weeks. Well, that's not entirely accurate. The left side healed after about three to four days. It was the right side that continued to hurt for weeks. It felt for all the world like there was still a needle stuck in my scalp. The day after the event, I had started trying to get doctors' appointments. At first it was only to talk about the symptoms I experienced during the event itself and the type of pain I was still feeling (and how abnormal that was). As more time went on, though, it became clear that there was more that needed to be addressed.
I just wasn't myself for nearly a week, and the brain fog was overpowering. I'm used to brain fog, right? Most people with chronic health conditions are. So I'm used to having to search for words sometimes, for example. But when I can't get to a word that I want, I can still find a good substitute or I can describe it another way, remember what it starts with, know a couple of letters within it, or at the very least I know what concept I'm looking for. Enough to help whoever I'm talking to help me figure out what I'm trying to say. A fork might get called a "you know, pointy-spoon-but-not-a-spoon," but it's a fun* little** adventure we can all take together.
*definitely not always fun
**sometimes it takes quite a long time and I am eternally grateful to everyone who plays Twenty Questions with my brain
This was not that. This was a whole different experience. In keeping with word-themed examples, I play a game on my phone called Spelling Bee. The goal is to take seven random letters arranged in a sort of honeycomb formation with one central letter and the other six surrounding it, and turn them into as many words as possible; each word must include the center letter and must be a minimum of four letters total. It's fun! It's occasionally extremely challenging! Even with brain fog, I usually do pretty well! After this nerve block incident, though, it's like I could stare at the letters and know there was something I wanted to spell, but I just couldn't get there at all. One time I was trying to spell the word "aviary" (I know this because I remembered the word a couple of weeks later). Not only could I not get to the word, I could not identify any of the letters I wanted to use despite having all of the options in front of me. I couldn't remember the definition of aviary. I forgot -prepare yourselves- the concept of birds. Not the word "bird," that would be too easy, oh no, I couldn't remember birds. Like a computer that didn't have permission to access a set of files, I just couldn't get anywhere near it. Not wings, not flying, not the sky, not even that I was trying to think of an animal. Nothing. Birds did not exist. The closest I got to aviary, after many minutes, was a very, very, no really I cannot stress this enough, very fuzzy idea of a guy (?) watching things (??) that ... weren't bees? Appropriate, given that I was playing a game called "Spelling Bee." I could visualize a beekeeper's uniform. But I couldn't connect anything about that to birds. I also had vague flashes of wallpaper in the bathroom of my grandparents' house (they haven't been around for a long time now, and that house hasn't been in the family for nearly a decade), which, yes, had some birds on it, but the best I could come up with were a couple of stripes and the thought, "there's wallpaper, right?" That thought was quickly followed by two seemingly simultaneous thoughts: "... huh. Well, this probably isn't great" and "haha UH OH."
Obviously, I could tell that something was Wrong, capital letter very much intended. I had wanted to be seen by someone as close to the event as possible to try to get some sort of usable data, or at least some observation and a physician to run everything by. Between the initial incident, the continued pain/lack of healing, these weird memory blips, and the general differences in the way my body was responding to this very routine procedure, I needed someone who understood what occipital neuralgia is, what occipital nerve blocks are, what EDS is, would understand my complicated medical history, and be able to at least point me in the right direction for next steps. That's a lot to ask, I know. I'd've settled for someone with active listening skills, empathy, and a drive to help. The medical system had other plans.
Part 6: A Comprehensive Account of Appointments That Passed for Medical Care
1. I started with Dr. Oliver. I'd been seeing him the longest and he knew the most about EDS. I sent his office a message through the patient portal and they called me back within a couple of hours (the staff at his first office can be pretty incredible) and set me up with a telehealth appointment the next day. Great! That was quick! He might have some ideas, he could order some imaging or lab work or whatever other test he thought was a good idea. He's a good listener, he'll want to know what's going on in his own clinic. He schedules all EDS clinic appointments on the same day (other days have clinics for other conditions and specialties), so he was literally down the hall, just steps away while all of this was happening. Step one: check.
I was wrong. I don't know if he was just especially busy because he'd had to squeeze me in or something, but it felt like this was a waste of his time. It was unexpected and it hurt, so I was thrown off for the rest of the appointment. I didn't push back the way that I should have or ask for anything I wanted/needed. I didn't even mention imaging. What I got from him was, and I quote (I don't think I'll ever forget this), "yeah, I don't know, there's nothing in a nerve block that should have done that. EDS is weird sometimes."
First of all, I'm aware that there's nothing about a nerve block that would have done this. That is the problem. He then suggested that, since I tend to react to medications, this was a reaction to the medication they injected. When I reminded him that I'd gotten this done several times before and never had a problem, this didn't seem at all like an adverse medication reaction, and the medication they were injection was LIDOCAINE (if anything, I under-respond to lidocaine) and wouldn't produce anything like this anyway, what I got in return was basically a shrug. There was no attempt at help, no suggestion of anyone else to see or anything else to do. He asked if I wanted him to talk to Dr. George. Which ... I mean, yeah? Please do not ask me to make that decision? I don't understand why that is a question, given the situation?
I got off the video call feeling defeated. I found myself second guessing everything that happened, everything that was currently happening. Maybe I was overreacting. Luckily, my wonderful partner was there to remind me that, uuuhhhh no, no overreactions here, something is definitely wrong in a possibly bad way (thank you). I was just feeling so discouraged. Plus, that was another day removed from the incident, making it less and less likely that we were going to get anything useful beyond my words.
There was a chance I could have gotten an appointment with my neurologist at Hospital 2, but not until the following Tuesday at the earliest, and I really, really did not want to go back there. After Dr. Oliver's reaction, I had no idea what to expect from Dr. Neil. It felt like a better plan to go somewhere else entirely. I looked at every major hospital system in the LA area to find out if getting an urgent neurology appointment was at all possible. I'm lucky enough to have a PPO, so my insurance doesn't require referrals. But no one would even talk to me unless I was already an established patient in their system. It's so strange, I've come across that a couple of times on this coast, but never before now.
2. I contacted the office of my PCP from Hospital 1, even though I hadn't seen her in more than a year. I explained the situation, had already checked the patient portal and seen that she had no appointments available, but asked if there was anyone else who could see me. They were very kind, something I desperately needed, and called me back in a matter of hours. The nursing staff was suitably concerned, apparently, and wanted me to have an appointment that day, so they scheduled me for a telemedicine appointment pretty much immediately. Talking to him was ... fine. At least he tried to keep track of everything that happened. At one point he asked for my partner to get on the video and asked him, in front of me if, "she's always like this," which, rude, but he was trying to gauge if the difficulty I was having communicating with him was normal or if it was a result of the incident, which I actually appreciate. I had already told him that it was worse than normal because of the incident, and also because of the delay in video, and also also because of medical ptsd and being terrified of not being believed and trying to choose my words perfectly and being concerned that if I didn't get the answers right I was going to be told to shut up and go away. A condensed version of that, but that was the gist. AND THEN. He began the first of many, many times that I was told this was just POTS, or a vasovagal response, probably because of the pain or the position I was in. I told him that those are things I've been managing for decades, I know what my symptoms are in pretty much every situation, and these are not those symptoms. He then proceeded to explain vasovagal syncope to me. A diagnosis that I have. A diagnosis that I have had for more than half of my life. After I had already told him that I know what it is, am very clear on the definition and symptoms, and am intimately aware of how it feels. He threw around the possibility of a seizure, which I'd already looked into and didn't seem likely for a number of reasons. He also said they could have missed and injected some of the meds into a blood vessel, which had occurred to me as well. He briefly brought up a transient ischemic attack, which I'd also looked into, and which lined up most accurately with my symptoms. However, he promptly dismissed it, stating that it was not possible. Some positives: he ordered a brain MRI with contrast, an EEG, and a STAT referral to neurology, which is really what I needed anyway. Before ending the appointment he made sure to bring up vasovagal syncope one last time and how very sure he was that that's what happened.
There was a small glimmer of hope that since this was a new referral, since it had been multiple years, and since this was very clearly out of the scope of her specialty, Hospital 1 wouldn't stick me with Dr. Hamel again. No such luck. Even when I explained the situation to the person who called a few days later to schedule (for those keeping score, we're now eight days after the nerve block). I could get in to see Dr. Hamel in person the next day, or ... possibly try my luck at going through the same ordeal I'd gone through before, or, more likely, nothing. On to Dr. Hamel, I guess. Which was, you guessed it, a colossal waste of time! Except it wasn't just that. It was exhausting, demoralizing, humiliating, and frustrating.
My appointment was at 3:30 pm, which was great because I could stop by the lab on my way out. Two birds/one stone and all that. The system setup was that I'd check in through the app, get a text acknowledging the check-in and telling me I was supposed to wait in my car until I got a second text that said to go inside, because COVID safety is good. I got there half an hour early, was greeted by an unsettling Cat in the Hat statue, parked in one of the hospital lots, and checked in. I got the first text. The second text never came. When my appointment time rolled around, I gave the office a call and the receptionist was like, "oh, we're just telling people to come straight in now!" like I had been living under a rock for ages and should have known this information, despite it never having been communicated to me either verbally or digitally in any way. I went in, checked in again for some reason, and waited. And waited. And waited. I watched employee after employee leave for the day. I waited for another HOUR. This appointment was more than an hour and a half late. Don't get me wrong, I don't mind when appointments start a bit late. I actually kind of like it, it lets me know you spend real time with your patients. But an HOUR AND A HALF total? Come on. Alright, it's whatever, the appointment was happening, I tried my best to shake it off and put on a good face.
And this fucking lady.
She didn't even want to hear about what happened. She cut me off constantly. I tried to ask about the possibility of a ministroke/transient ischemic attack and she didn't consider it for a second. And then she tells me she really THINKS IT WAS A VASOVAGAL REACTION. Just, you know, not enough to faint! Because that can happen, you know! "It's just that sometimes your body really, really wants to get you to the ground. But since you were already sitting, it didn't need to take you all the way down! You see, nerve blocks are very painful. So sometimes that just happens."
I wanted to scream. I'm so fucking tired of doctors who have never experienced any of these symptoms or conditions telling me about them. If you've never had an occipital nerve block, you are not allowed to condescendingly explain to me how painful they are, and then use that as an excuse not to look into my concerns any further. You can fuck all the way off with that nonsense.
She then told me that I shouldn't bother getting any tests because they'll all be normal. And that was the end of that appointment. Until, that is, she was walking me out and cheerily said (another direct quote, which I've pulled from texts I sent from the lobby), "I do think there was some blood supply cut off from your brain. Just think, you probably know what a stroke feels like now! Just think if it stayed! Then you'd have that feeling and lasting symptoms and damage to the brain!" And shut the door in my face.
YOU JUST DESCRIBED A TRANSIENT ISCHEMIC ATTACK.
WHAT IN THE ABSOLUTE ICY HELL IS WRONG WITH YOU.
And you just know there is a 0% chance that turned up in any notes. By the time I got out the lab was closed, because of course it was, and to add insult to injury I couldn’t get my parking validated because in order to validate accessible parking you need to show a human your blue tag and all of the parking attendants had gone home for the day. So after a few minutes of frustration crying in the parking lot and a short staring contest with the Cat in the Hat (who’d given up on unsettling and moved right on into sinister), I paid my disgustingly expensive escape fee and went home.
One thing that remained constant throughout all of these appointments was the underlying feeling that all of this was somehow my fault. Or that it wasn’t that bad, or maybe it didn’t happen that way at all. It must have been the position I put myself in, right? Or maybe what I was wearing? EDS is weird, it’s my body that’s the problem. Nerve blocks just cause so much pain, it’s okay if I admit that I couldn’t handle it. It really is just like POTS, isn’t it? Weren’t these the symptoms I was really experiencing? I just didn’t understand how vasovagal syncope works or feels, but I’m not a doctor so that’s understandable. It’s not possible for that procedure to cause those symptoms at all ever, so there’s no way to explain it. There’s no way that so many doctors would have ignored it if something were going wrong, so it probably just seems like a bigger deal than it really was. I wasn’t aware of my surroundings anyway, so how would I know?
I don’t understand my body, medicine, science, a procedure I’ve had done for years (that I’m willing to bet none of the physicians I’d spoken to have been on the receiving end of), a medical condition I’ve been managing for decades, or an experience that I was present for.
Maybe I should take a moment to explain my dysautonomia symptoms. If I stand up, my blood pressure drops significantly. My heart rate is always high, but when I’m standing it climbs to 160 when I’m doing nothing. This can still happen even if I am only sitting, though my heart rate doesn’t get quite as high. As one could imagine, that produced all sorts of symptoms. Mainly, everything in my body screams at me to get to the ground and lie down. If I don’t do that quickly enough, it forces me to -in the form of fainting (syncope). Usually I:
begin to feel hot
say very clearly, “I need to sit/lie down”
feel my pulse in my extremities, face, and core
get VERY dizzy
lose track of everything happening around me; my one and only focus is getting to the ground
stop hearing as well; everything sounds sort of muffled, like I’m under water or wearing ear muffs
get tunnel vision until finally my vision greys out, and then goes black as I lose consciousness
am momentarily confused upon regaining consciousness, but am generally just fine and functional (if I lose consciousness at all; that hasn’t happened in many, many years
I do not:
lose control of my muscles or limbs
get a weird “fighting sleep” feeling
keep an accurate account of the amount of time that has passed
maintain the ability to keep track of where everyone else is in the room
hear everything clearly, know when people are talking to me
lose the ability to comprehend an entire language
lose the ability to speak
struggle with routine tasks after an episode
struggle to follow instructions after an episode
struggle to form sentences after an episode
have double vision
take weeks to recover, have severe lasting brain fog or memory impairment
So, no. I’d say this was pretty solidly not an autonomic response of any kind. Thank you.
4. Against my better judgement, I kept the followup with Dr. George. On the one hand, I felt like I didn’t have any other option. On the other hand, I wanted to give him a chance to talk it out. I wanted to tell him that what happened wasn’t okay, let him know exactly what I experienced, and ask why he made the decisions he did. I wanted an apology. I wanted to talk to him about having complicated patients, especially EDS patients, and why we can’t be treated the same way someone would treat an otherwise healthy person who comes in with a sports injury. I wanted to know what he would do if anything like that happened again. And, against my better judgement, his responses could keep the door open to a continued doctor-patient relationship.
The day of the appointment had been a long fucking day. I’d already had the commute, physical therapy, occupational therapy, neurology, EDS specialist, and at the very end of the business day, this stress- I mean fun-filled appointment to look forward to. So I’m sitting in the exam room, I’m exhausted, right? I’m taking deep breaths and going over my talking points, reminding myself of what I need to happen in order to salvage this relationship.
And who should walk in …
but Dr. Bro.
I didn’t know what to do. Seeing a resident at the beginning of the appointment was expected. Dr. Bro was not expected.
And he just … started talking. He started talking so much. Just immediately jumped right into it. He asked me how I was doing and I didn’t know how to respond. At one point he could see that I Was Not Having It and I don’t even remember the question he asked me, but I interrupted myself answering to change gears just a teensy little bit. The conversation went a little something like this:
“I’m sorry, why are you here?” I abruptly asked. Nice, Kathleen. Smooth. Full of tact.
Dr. Bro proceeded to explain to me what a resident is.
“I understand residencies. What I mean is why are you here, in particular?”
Dr. Bro, having no other explanation, proceeded to explain to me what a resident is.
The day had been long. The month had been long. I had been Done. What followed was, while not my kindest moment, hugely liberating.
Interrupting his riveting lesson on this brand new material, I blurted out, “I need you to not be here.”
This, mercifully, stopped the talking for a minimum of two glorious seconds. For once, it was his turn to not know what to say.
“Do you mean residents in general?”
“No, no, residents are fine,” I said, wholly unaware of what was about to come out of my mouth, “I can talk to someone. I just need it to be someone who isn’t you.”
I saw his life flash before his eyes. Clearly, no one had said anything like that to him before. Hell, I’d never said anything like that before. We were both stunned! I felt awful about it for a fraction of a second…until I remembered how he conducted himself during the last appointment, and how much he singlehandedly contributed to it tanking.
When he’d gathered himself back together, he asked, “is it personal?”
What I wanted to say was, “what the fuck kind of a question is that? Of course it’s personal!”
What I actually said was, “…yeah, a little!”
He chuckled a bit and tried to save face by saying something about not “being offended,” which I cared so, so very little about, sort of acted like it was his idea to leave, and sent in Dr. Denver.
Thank goodness for Dr. Denver. He is one of those special kinds of people who has that particular kind of empathy that, to me at least, feels necessary to be a good doctor for complicated patients or patients with chronic conditions. He listens, and he remembers information. And his notes, oh my gosh his notes. I saw the notes he took from my first appointment because he went through them when we were talking. I don’t know how to say this. But. They were typed up. And…organized??? In outline format? On multiple pages?????? WHO IS THIS PERSON?
We’d just gotten into the bulk of what had happened when Dr. George came in. In filling Dr. George in on what we’d discussed so far, Dr. Denver very seriously said, “I think this was much worse than we thought at the time.” Dr. George was not convinced. Dr. Denver, however, nearly cried. He verbally kicked himself over not at least taking my blood pressure or any other vitals (“that’s literally the first thing they teach us to do, I can’t believe we didn’t do that”) and apologized for making me feel like I had to leave without receiving appropriate care. He said he could tell that something was off, and didn’t understand why they didn’t help. He just kept apologizing over and over again. When we went over the symptoms I’d experienced, his first thought was that it sounded “like a transient ischemic attack.” I learned a couple of interesting things in that appointment. The first being that they’d gone very quickly, so there was a lot of fluid buildup during the injections that they then massaged in, instead of going slowly and carefully to let the fluid disperse naturally and prevent buildup or pressure. Dr. George said he wanted it to go more quickly to spare me the pain. But that extra fluid could have meant extra pressure on fragile, flexible EDS veins. And the act of massaging the fluid in could have caused damage in itself. The second thing I learned is that Dr. George didn’t perform the procedure, the residents did. This was a surprise to me. I barely consented to them being in the room, so I absolutely did not consent to them putting needles into my head. That might be alright to people whose tissue functions normally. But unless it’s demonstrated to me that a physician understands how my body is fundamentally different than other patients’ and what that means on a practical level, they do not get to stab me or inject anything into my body. Telling me that a couple of residents are there to learn is very different than telling me that these residents are here to perform this procedure, which is very, very different than asking me if I’m okay with anyone other than the doctor I scheduled an appointment with performing the procedure.
Overall, the appointment went well. I used that last bit as a jumping off point for a discussion about EDS and chronic illness generally, what I can expect from Dr. George as a physician, and what he can expect from me as a patient. I was there for nearly two hours, and they never made me feel like I was wasting their time. I decided to keep seeing Dr. George, with a couple of caveats: there would be no Dr. Bro, and I decided I’d bring my partner to every injection appointment from then on, just to be safe.
So that’s what I did. And honestly, it went really well. I got to work with Dr. Denver a bunch more times, as well as meet a couple of other incredible residents. There were two in particular that just made me immediately relaxed every time they walked into the room, because I knew that if they were there it was going to be a good appointment. One of them is the chief resident now, and I can’t think of anyone who deserves that more than she does. In addition to the nerve blocks, I began getting perineurial injection therapy, focused on my shoulders and upper back. Appointments would go one of two ways. I’d come in, have a regular appointment, and do PIT injections. After that either the appointment would be over, or I’d get nerve blocks. There were a few issues with Dr. George along the way; he’d disappear for long periods of time, he’d be extremely late, his quality of care would greatly depend on which resident was in the room. But none of that mattered a whole lot in the long run. We had a good routine going. At least we did for awhile.
Part 7: An Incident of a Different Sort
At the beginning of 2022, I came in for a usual PIT and nerve block appointment. There was a new (to me) resident! She was very nice, but didn’t listen particularly well. Which is fine! I didn’t really need anything new, just the usual. There were issues I would have liked to have gotten into, but I figured those could wait until next time. I didn’t really feel comfortable bringing them up with this resident, but I wasn’t sure why.
Dr. George came in for the appointment and all of the various injections. It was … weird. The energy in the room was uncomfortable. I don’t want to say that they were flirty, but something felt strange and they were definitely more focussed on each other than they were on me. The PIT portion of the appointment got off to a rocky start when Dr. George didn’t believe me about where all of the injections were last time we did this. I didn’t know how to convince him that I knew where I’d been jabbed. So I just went with it and figured I’d just be in a little extra pain for the next few weeks and that was okay. We moved on to nerve blocks. He did half and she did half. Everything went fine, except they were still more focused on each other than the person they were injecting things into. And again, they went quickly and massaged the liquid into my head. Afterwards, I tried to stand up, but sat right back down again due to my body’s sudden urge to say “no thank you please” and they were very chill about me and my partner hanging out for a few minutes before leaving. And hang out we did! And boy oh boy, if I thought the appointment had been weird so far, I was in for a real treat. Every object on the wall suddenly had a halo of light around it. All of the words on the fire extinguisher, clock, etc. were blurry. My partner had his hand on my leg to check in with me. How did I know this, you ask? Not because I could feel it, that’s for damn sure. I only knew because I could see it. Definitely, 100%, could not feel it. Both of my legs had gone numb. And in my frantic gesturing to explain this strange happening, I noticed that my hand was leaving a trail in the air. You know how movies and TV shows like to show that people are on drugs? It was like that. Every movement left visual trails. We were just about to pull the emergency cord when Dr. George’s nurse came in with a blood pressure machine (they learned A Thing!). And wow, my blood pressure has never been high before. The new resident came in right about then and said it was probably, you guessed it, POTS! Dr. George and his two, slightly fuzzier clones took her place in the doorway, was suitably unimpressed when we explained what was going on (I could almost hear the eyeroll), echoed the POTS sentiment, told me to lie down in the dark for awhile, and left. Great. So I did lie down, and immediately my lungs started rebelling. My partner got my rescue inhaler and I sat up because no one needs an asthma attack on top of whatever the hall that was, waited for a few minutes, and found a different position to lie in. About a minute later someone came in to ask if we were ready to leave and we said not only no, but hell no, I was not okay, and at the very least we needed to see Dr. George again. At one point someone told us not to worry, that it was okay for us to be there because there were no other appointments after me, so they didn’t need the room, somehow a reminder that I was making them stay there when they didn’t have any other appointments and implying that if there were other appointments I’d have to leave regardless of whether or not I was okay because they’d need the room. The other empty rooms don’t count, I guess.
Dr. George finally came back. We got a lot of “I don’t know” and head shakes. POTS was mentioned again. I may or may not have snapped at him that “oh my god it’s NOT POTS” but who’s to say. With regards to my legs going numb, he suggested it was probably the way I was sitting. I should have fucking predicted that. I countered that it was the way I sit every single time. He said something about how small things can change without me knowing. Sure. Okay. He tried to blame it on doing the PIT injections first, “maybe we don’t do that next time,” as if we hadn’t been doing it that way for a year with no problems whatsoever. No apologies. No responsibility whatsoever.
I even tried going to one more appointment with him to beg for some help for the lingering symptoms and, though I knew in my heart it wasn’t going to happen, any kind of acknowledgement that he could have screwed up. He told me and my partner that he had done a lot that day, and I wasn’t giving him enough credit. I got no useful treatment. Dr. Denver was in that appointment. He spent it reading through notes so he knew for certain what was going on, and apologizing.
Part 8: The Present
This time, the pain never went away. The feeling in my legs came back, my right far more quickly than my left. My blood pressure went back to its normal, problematically low self. But I couldn’t turn my head correctly for a month. It hurt severely to lie down for about 3 months. The nerve block effects never kicked in. The high levels of pain went on for so long that I tried a new migraine medication, knowing that it wasn’t going to work (as this was not a migraine), in hopes that it would surprise me and do something after all. In fact, my normal migraine meds now make my occipital neuralgia unbearably worse. Sure, the migraine stops. But the pain in the back of my head is excruciating. My vision is significantly worse than it was before this incident, and the visual trails haven’t gone away.
At this point, I don’t really know what to do. I haven’t gotten any more nerve blocks. I haven’t gotten any PIT. I’m trying not to use my migraine meds. I don’t have a neurologist or a pain management specialist, or a doctor who understands or cares what any of this means (that’s not entirely true, my physical therapist has been wonderful and has done the only useful or helpful things throughout this entire ordeal). I need a neurologist ideally also a neuro-ophthalmologist, and someone who knows how to give nerve blocks to someone with connective tissue disorders. Where do you go when the people you're supposed to be able to trust with your life are untrustworthy? I’m sure as hell not going back to Dr. George.
Stay tuned for my upcoming book, maybe?
At least I'll always have The Cat in the Hat of my nightmares.