If you look through my facebook feed for the past month, you will get the impression that I'm some kind of energizer bunny - always smiling, always meeting my goals, always pushing forward and upbeat and optimistic. The reality is much more complex.
I don't have the intention of being misleading, but I feel that there are certain things for facebook and certain things that belong on blogs, or in journals, or in personal conversations. Facebook is for happy updates and puppy pictures - Simple things to scroll through in your newsfeed. Easy quick ways to keep people updated that yes, I'm still alive and things are going "well."
This post will be for people who are curious about the more intimate details. Maybe you're facing a similar surgery and want to know what to expect, or maybe you are just curious and want to know more about my life. Well here it is, my accounting of what it's really like to have a major neurosurgery.
Why I needed surgery
This was pretty usual. And very uncomfortable.
I have had a BUNCH of neurosurgeries already and some of them had some complications. Over time three main issues stood out as needing to be fixed.
1. My alignment was off because I had a patchwork quilt of hardware. So in addition to looking like a hunched linebacker (oh hey, vanity!), I was having cord stretching/compressing symptoms. For example, I couldn't lay down flat and still be able to breathe. Breathing in general was pretty hard. The day before my surgery was an average day. Not good or bad. I could barely make it through a 3 min walk because my breathing muscles were just too weak. The whole last month before surgery, I think I only went on one or two walks and took the whole rest of the day to recover afterwards.
2. I had a wonky screw that poked my dura at C1 and caused repeated CSF leaks. When the leak was bad, my headache and nausea were so bad, I couldn't leave my bed other than to go to the bathroom. I even ate meals laying down. On less bad leak days, I could get 1-2 hours of sitting up time a day. Once or twice a month I'd have a great day where I could do something cool like geocache, go to the beach, or sit up for 3-4 hours at once. I was also having crazy terrible blood pressures because the leak prevented me from holding enough fluid to keep up a functional blood volume. Because I was so prone to leaks, I had a ton of activity restrictions and dreaded things like sneezing or coughing. It was a bummer.
3. My skull to C1/C2 fusion never formed a bony fusion for some reason and so my skull was slipping out and rotating a lot. This caused a lot of moderate to severe pain, muscle spasm, and increasing cord/brainstem squishing symptoms like my legs and arms not working sometimes.
So my life pre surgery was mostly spent in bed with brief and cherished exceptions. I'm used to the chronic illness roller coaster, but this was next level. I could sprout a leak at any time and then it was goodbye to the next 3-10 days. I could develop a really stubborn muscle spasm and then it was bed for me for that too. Or I could just have a bad cord day and my breathing/arm/leg/trunk muscles weren't able to support me doing most activities. It was pretty brutal. I would literally miss my parents and dog who were in the same house as me, but I couldn't really interact with them because I needed a cool/dark/quiet space. I did up my anti-boredom skills, find some great podcasts, and got pretty "live in the moment" zen about life (when I wasn't freaking out about everything, that is.)
The pictures I posted on facebook from this time are mostly of the good or great days. I guess that's misleading, but...eh. Who wants to see a picture of the view of my bedroom wall for the 5th day in a row?!? Or the 99th photo of my blood pressure showing I'm so dehydrated I would be in the hospital if it weren't for a current COVID surge.
2020 was a rough time for everyone. I was just joining the club in my own unique way.
Finding out I needed surgery
It was a long, convoluted, and stressful process. COVID complicated things further because access to healthcare became quite difficult in some cases.
There were many doctors consulted, lots of tests, looooots of shoulder shrugs. Sometimes I worried that this was just my life now. But I found someone to help and eventually COVID calmed down enough that I could have surgery. Yay! This part is boring, so I'll just kind of skip it. I do want to say that my mom basically was the one getting everything done because I was too sick. So big thank you mom! And big thank you to some amazing EDS neck surgery friends who helped guide me in this particular part of my journey. Yall saved me.
Now skipping right to...
Pre-Op
Two VERY nervous ladies.
Usually I'm pretty relaxed the day before and of surgery. I sleep fine. No tears. I have the easy job, afterall. I just get to take a really long nap. The surgeons do all the work and the family/friends do all the worrying. By the point of pre-op I usually describe my frame of mind as I'm already strapped in to the roller coaster, it's going up that big scary hill, and since there's nothing I can do to get off at this point, might as well just go with it.
This time I wasn't so calm and peacefully resigned. I was pretty nervous the day before, hardly slept that night, and was unusually emotional in pre-op. I was grumpy and upset that I had to go through this even though I knew that it was 100% what I desperately needed to do. Usually I'm pretty good at monitoring my thoughts and turning on the optimism switch. But this time I knew in painfully intimate detail what I was in for with this being my...7th? 8th? neurosurgery. My optimism switch going full steam ahead meant thinking about surviving the surgery with the fewest complications possible and hopefully seeing some improvement to quality of life further down the line. I knew I was in for a bad time even if everything went perfectly so there wasn't really a happy place for my thoughts to go perch.
This meant I didn't joke around with the nurses or respond to their efforts to engage me with conversation. I fiddled with the rough hospital blanket and tapped my toes against the end of the bed. I stared off into space a lot. I forgot who every nurse, resident, and tech was roughly 1.5 seconds after they introduced themselves. I even, wait for it, cried when I hugged my mom before they wheeled me away for surgery. Like, I cried a lot. I've definitely never done that before. I have reoccuring nightmares where I'm in pre-op and I scream, cry, and beg them to stop. "Please, please don't make me go through this again." I wasn't so far gone as that, but that energy was definitely closer to the surface than usual.
Here's the nice thing about pre-op people that helped me get through this tough situation. They are wonderful, empathetic human beings who have seen it all and know how to help support their patients through a range of emotions and reactions. They used an ultrasound to guide my IV placement which was almost painless. For my fellow wonky veined people, you know how amazing that is! They explained each thing they did and got my consent before proceeding. Even the marks they put on my body to help guide the surgery were done gently and carefully. They got input from my mom and I about managing some of my more complex health issues during and after surgery. The room was full of people, but it really felt more like a team than a bombardment. It's how medicine should be.
When it was go time, they gave my mom and I just the right amount of time and space before wheeling me away. They assured both my mom and I that they'd be giving me something shortly and "I wouldn't care about much" after that. I really appreciated how they took care of both of our emotional needs.
Within a minute, whatever that stuff was that they pushed through my IV, got me that optimism switch reinstalled. In the space of a breath, my tears dried up and I giggled, "you weren't kidding. I really am all good now." From that point on, I think they could have probably amputated my leg while I was awake and I would have been pretty chill about it. "If only it was so easy to control emotions all the time," the anesthesiology resident told me. The nurses got me talking about my dog and then it was lights out for me. I fell asleep calm and knowing I was in good hands.
Post Op (ish)
My usual post-op experience is pretty traumatic. It's what I have the most nightmares about. It's where my brain flashes back to when I get a whiff of "hospital smell." Waking up after surgery usually feels like crawling out of the grave while fully panicking and being bombarded with way too much sensory information. It's flipping terrible.
But this time, things were much more pleasant. I had talked to my doctors ahead of time and though we agreed that some people are just panic wakers, there were things they could do that may help.
One thing that helped a whole lot was that I didn't really do the post-op thing this time, at least not consciously. Instead I stayed intubated overnight in the ICU to protect my airway and was sedated enough that I just slept and healed. That's over 12 hours of pain and panic that I didn't have to go through and I am so appreciative.
ICU
Because I was intubated and "medically complex," I spent a few days in the ICU. That's where I finally woke up from surgery over a day after I was put under. I woke up feeling calm, warm, and surrounded by people helping me. I knew I was intubated (it's uh...hard to miss a big honking tube breathing for you), but I wasn't really all that bothered by it. I must have been at some point though, because I did have the naughty cuffs on, aka my arms were tied to the side of the bed. Oops! Hope I didn't give anyone too much trouble.
As I woke up, the pain went from a persistent irritant tugging me away from the nice warm happy sleepy place to a BIG FLIPPING DEAL. Thing was, I couldn't express this because my mouth was currently busy hosting a large tube (and I later learned other things like a feeding tube and stuff.) I was grimacing, but I think everyone thought it was because of the tube. So here's where I brag a little because even in my drugged, pained, mobility limited state, I figured out I'd tell them all about my pain woes using sign language. I'm not very good at ASL, but I definitely need to thank fellow SASer, Destiny for helping me learn some of the basics. So, I persistently fingerspelled "O-U-C-H" and used "yes" and "no" signs until someone either came in the room who knew ASL or figured out what I was getting at. Oh the relief when someone finally understood me!
Things, perhaps for several hours, are a bit blurry from there. I was in and out, often fingerspelling more "ouches" and answering "no" when asked if the tube was bothering me. (Honestly, I had been having trouble breathing for months before surgery. Some extra help was kind of nice.) I would have little fleeting thoughts of concern like, "Hey, I'm intubated and that's maybe not such a good sign." or "How did the surgery go?" or "My mom isn't here and she's supposed to be, so who is monitoring my cortisol stuff to make sure I don't have a crisis?" But mostly I was chill. Part of that was because all the people in the room always spoke as if I could hear them and were very reassuring. I heard a lot of delighted doctors and nurses commenting on how well I was going down on the vent settings and how great my airway looked and stuff like that. So I knew I was doing ok. (This is the same ICU that had been through MONTHS of intense COVID overload. I think seeing someone come off a vent nice and easy was especially gratifying after all the trauma they have been through.)
Taking the tubes out wasn't that bad. It sounds like it should be, but they just ask you to cough and then out it comes. It's not comfortable, but it's not terrible either. Once it was out, and after a few false starts, I could get out some raspy words and there was much rejoicing in the room. There were some pretty...um violent things done to my neck and airway during surgery, so being able to breathe and talk right away was pretty great.
Sometime around then, the pain got completely out of control ( I think there were some coughing fits involved in taking the tube out) so they put me on a ketamine drip.
Oh boy.
That stuff is...intense. I did not care for it at all. It did help the pain quite a bit, but it did STRANGE things to me. Like I developed a weird kind of...synthesia maybe, where every sound was represented by a mathematical equation. Simple sounds like the beeps from my heart monitor were easy or partial equations, but more complex sounds, and especially people talking, completely overwhelmed my brain with equations. It was like someone was frantically writing on a blackboard and never having time to erase what was underneath before starting on the next equation. It was not super fun. My brain also did this weird thing like dejavu but to the point where it felt like I was constantly time traveling. All this could have been VERY frightening, but luckily one of my BFFs had warned me about ketamine years ago and coached me on how to relax during the "trip." (Thanks Robert!) So I just kind of floated around the ceiling, traveling through time, and swirling through complex mathematical equations while trying to take deep calming breaths and stay chill. And it really did help with the pain.
At some point my mom was finally allowed in. We had special permission for her to be able to stay with me despite COVID visitor restrictions because my mom manages my adrenal issues when I'm incapacitated. (The order in which people recognize I'm having adrenal issues is 1. my dog 2. my parents 3. me.........way further down the line: everyone else. Even endocrinologists are not great at managing my adrenal issues.) It was absolutely wonderful seeing her and getting to hold her hand. I'm normally pretty sensory adverse to things like hand holding, but I still find it super comforting when I'm really scared, hurt, or miserable. It was still hard to talk at that point, but I did manage to ask how things went. I don't remember what she said, but I it seemed to be an overall positive sentiment. So off I went back on my time traveling mathematical trip.
Some time later, I started feeling real bad. I got so nauseous that I was maxed out on anti-nausea meds, couldn't open my eyes, was absolutely drenched in sweat, and thought maybe I was having an adrenal crisis. Or possibly dying. I really felt that sick. I guess I must have communicated this because they did some quick tests to rule out adrenal issues and then they took me off the ketamine. Thank flipping goodness! I very slowly started to feel better.
The next few days are pretty hazy. I know I didn't feel well a lot of the time. Like even more than I would expect after surgery. But the ICU people did do a pretty good job with pain control. By that, I mean I was still completely miserable and making embarrassing chewbacca noises most of the time, but I also could occasionally get comfortable enough to rest and sleep. I even got quite chatty in that magic spot where I wasn't drugged asleep or writhing around in pain.
All my nurses were wonderful, but I had one night nurse who was just...beyond awesome. Nights in ICU were kind of like a slumber party with those deep, fun conversations. I legitimately would love to be friends with this dude. We talked about all kinds of things and it really helped to ground me to real life outside of the neurosurgery nightmare. We talked about how we admired Buddhism, and how helpful having that frame of mind could be in times of great suffering. I did A LOT of reigning in thoughts, living in the moment, focusing on the next breath, etc. over the next several days. It was a great reminder of some great strategies exactly when I needed them.
Another wonderful visitor I had while in ICU was the chaplain. I'm not a terribly spiritual person, so I usually feel a little uncomfortable around chaplains. Like I totally value what they do and what they offer, but I worry that I'm just wasting their time? Also, usually I would rather sleep then talk to anyone, so I just sort of universally am not thrilled with visitors. But this woman has a presence about her that made me perk up out of my medicated/pain haze. She did a great job of engaging me and finding out what I needed. Through some conversation, I found out she often sang for people and that sounded perfect. She was gearing up for the Hawaiian rendition of Somewhere Over the Rainbow when she mentioned Carole King's You've Got a Friend. That is a VERY special song to me because it's what my dad sang to me every night when I was a child. At this point it had been several days since surgery and I hadn't been able to see my dad because of those pesky COVID restrictions and that was really hard emotionally. So, she sang the song beautifully and I had a big smile on my face thinking about my dad and I think there may have been some crying by all of us. It was just completely beautiful and perfect and I I'm going to write her a very nice thank you card once I can write again.
Neuro Floor
All good things must come to an end, and a bed eventually opened up for me on the neuro floor. Everyone there was also wonderful, but I missed my ICU nurses and the better pain control I had there. In the ICU it was all about stability and comfort, but once I was on the neuro floor, I had to like, do things. And I was not feeling super up for that.
I sweet talked the nurse/doctor into letting me have the catheter in for an extra day because I was too sick to get up to use the commode. (Also, I love catheters after surgery. My bladder isn't super great at functioning on a good day, and after surgery it throws tantrums that make it VERY hard to pee. I'd love to have a catheter full time if I could get away with it. There, now you know more about me than you ever wanted to.)
I kept trying to sit up which was one of my first goals. I'd proudly ask my mom or one of the nurses "Am I doing it? Am I sitting?" and they'd have to break it to me that, no I was at like 15 degrees.
I knew that prior to surgery, I was supposed to be "sitting up in a chair to eat breakfast" on day one and maybe discharged by day 3, and I was majorly failing to meet anything close to these goals.
I started to get a sort of anxiety reaction to the sound of the hand sanitizer machine going off outside my room because people kept coming in and wanting me to do things. Not just sitting, but drinking, eating, transfering to a chair...all things that I was WAY too sick to do. To put it in perspective, I had enough endurance to go to the bathroom using a bedside commode, OR take a few bites of pudding, OR drink some ginger ale in a two hour period. It was awful. I felt aweful. I wasn't meeting goals which I was oddly embarrassed about. It was just a really bad time. When OT/PT recommended 2-3 weeks of acute rehab after discharge from the hospital, it sounded about right. Also, I was kind of too sick to care.
On top of that, there was weaning off IV meds to oral meds which made the nausea worse and made me a little withdrawl-y. I was taken off some very important meds cold turkey the day of surgery so was definitely withdrawl-y from that. The high doses of steroids I was on made me sick, agitated, and grumpy. I wasn't able to sleep properly due to pain, constant interruptions, and horrible PTSD nightmares. Evenings were especially bad with restless leg and extreme agitation. I would also wake up in the night and have no idea where I was, why I was hurting so much, and why I felt so sick. I have hospital nightmares all the time, and it was a huge bummer to finally understand that I woke up to the nightmare being the reality. Super fun. I also worried that something was wrong with me because I was so sick. Like maybe there was something everyone was missing. Which is pretty scary. Nothing like being really sick and no one knows why. Ugg. Basically, on top of feeling really crappy physically, I felt really crappy mentally.
So I had some pretty bad days where I was just stangnating, frustrated, and miserable.
I do want to say that everyone was wonderful about treating me though. The OT/PT and nurses always knew just the right amount to push me and reassured me when I wasn't so great meeting my daily goals. The nurses were AMAZING. I have this weird anxiety thing about having to pee when I'm not allowed to get out of bed without a nurse because sometimes it takes like 30-40 minutes before they are available to help me to the bathroom. (So I have learned how to turn off bed alarms and sneak in a quick bathroom break.) But the nurses were so attentive that I never was in a situation that my bladder was bursting (unless it was due to me being too tired to get up to pee). The doctors were great at explaining everything as many times as my muddled brain needed and working with my parents and I to figure out why I was so sick, how they could get me to eat, etc. I also was allowed to keep my central line which was great! I know they aren't super safe, but man are they convenient! Meds go in without any pain, they can take blood without sticking you, it was just a little workhorse while all my other IV sites blew one by one. I think I could write poetry about my love for my central line.
Anyway, I think we kind of figured things out around the 5th day. Turns out, I was taken off some VERY important medication that my body needs in order to retain fluid AND I was taken off IV hydration AND I was refusing to drink because of nausea and being too exhausted to get up to pee. Oh, and I was extremely anemic. Each of these things separately were, "well tolerated by most patients." But I'm a special snowflake medically complex person and I couldn't handle one of these things, let alone all of them. So after some negotiating, I was put back on my water retention meds, given some IV hydration, and given two units of blood (in addition to the transfusions I had during surgery. I guess it's pretty normal to bleed a lot during such things.) Shout out to my mom for figuring it all out and going to bat for me because I was too weak/miserable to advocate for myself. And for my dad raising the alarm the day prior because he just knew something wasn't right. I'm not a patient who typically lays about in bed. The fact that I wasn't walking laps around the hospital floor meant something wasn't right. Oh, and shout out to the doctors WHO ACTUALLY LISTENED TO OUR CONCERNS, TALKED IT OUT WITH US, AND THEN CAME UP WITH A PLAN AS A TEAM. There wasn't any ego and every choice was thoroughly explained. Have I mentioned that Mayo Clinic is Disneyland for sick people? Because it is. It's everything right with medicine and should be what everyone strives for.
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| So this basically makes me a vampire, right? |
By late evening on day 5, after just half my transfusion, I was already feeling better. My nurse commented that it was the first time I'd really had a conversation with her. Before that, it was just too much for me. Like to put it into perspective, I found out she was such a Harry Potter fan that she named her dog Ginny and my response was, "cool." That's it. "Cool." If I had felt better, I'd have kept her in the room for hours discussing Harry Potter fan theories.
I was still weak and exhausted, but I was doing more "me" things like walking a few extra steps every time I got up to go to the bathroom or asking to brush my hair or listen to an audiobook. I also started tolerating eating and drinking again. Ish. Which was a huge relief because I knew I needed to eat and drink to heal, get stronger, and get discharged.
Overnight, I had such a transformation that by the 7AM rounds on day 6, the neuro and endo teams and I decided that I could be discharged later that day and not even to acute rehab! I was flipping elated! I was going bonkers by that point and just wanted to get out and be in charge of my own movements and meds. The doctors agreed that would be what was best for me. So then I just had to wait on a few tests, prove I could eat (thank you cereal!), do paperwork, etc.
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| This is my YAY discharge face! |
I tend to have a rough emotional time right before discharge and this time was no exception. I cried a lot because...happy?....sad?....scared?....Relieved? No idea. I was very agitated, so there was a lot of clawing at my blankets and kicking my feet. I dunno, hospitals make me go a bit nuts.
Things got SO much better when my dad got there! I don't remember all the specifics, but I know there was some hand-holding, reassurance, happy talk about how they'd prepped the airBnB for me, and an attempt to watch the live action Aladdin. (I say attempt because there were lots of interruptions and I had trouble focusing.
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| Multi-tasking Wonder Dad who did caregiving and work |
I got to go on my first trip out of my room just a couple of hours before leaving the hospital which is not typical. Usually they want you to be walking and even doing some stairs before discharge, but I was happy my team recognized that me managing my own meds at "home" was more important than that. So anyway, I had a very nice dude wheel me to get x-rays and back. I think I scandalized him and a few other guys in the elevator when I said I loved Boston winters. People do not tend to live in Arizona because they like the cold. haha The adventure through the hospital was a good preview for the ride home-ish so I knew to ask for anti-nausea meds and muscle relaxants right before discharge. Which helped a lot!
Since discharge was imminent, I snuck my external adrenal gland (aka cortisol pump) back on. It was SUCH a relief to be back in control of my steroids! Prior to that, I was on a flood/famine steroid schedule when what my body really needs is a steady infusion that follows the usual cortisol curve. Hearing my pod clicking away, delivering meds was just fantastic. Once on, not only was my basal rate back to what I needed, but I was in control of updosing when I needed to. (Generally I do tiny updoses a few times a day to mimic how a normal body would respond to the environment.)
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| love this lil dude |
One of the last things I had to do was get my central line taken out which is...let me tell you, a super weird experience! It only hurts a little bit, but it feels like someone is pulling a giant worm right out of the center of your chest. Gave me the heebie jeebies! The site ached for a while afterward, but it overall wasn't nearly as bad as I thought it would be. In fact, none of the drain, arterial line, IV removals were that bad. I had some minor wound care issues because of an allergic reaction to adhesive, but those are healing nicely too.
Then my dad packed up all my stuff and I got to go home(ish)! The drive wasn't fun, as you REALLY feel each bump, but it wasn't horrible. Dad had mapped out the least bumpy route ahead of time, which was awesome.
Just having the endurance to sit up long enough to get the 15 min to the condo, which was impossible the day before, was merely challenging that day. I even walked a few steps into the condo to celebrate.
This is the first picture that I feel really looks like "me" in months. (Minus the crazy hair.)
It was SUCH a huge relief being back in a comforting space. And it was such a relief to finally feel like I had my head above water from an overall medical standpoint.
The condo was beautifully adapted thanks to my mom's amazing thrifty and creative assistive tech skills. I could relax and safely move around right away. It was beautiful. There's no happiness quite like being home from the hospital happiness!
That's it for now. I'll do another one of these about how recovery is going since then. But this is already obscenely long. Also, sorry about my lack of proofreading skills. Also, sorry about my oversharing. I'm still on lots of meds. :0)
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