Three and a Half Years Post-Op

Just over three and and half years ago I had a 10-hour surgery to remove a massive brain tumor. The tumor was a vestibular schwannoma, an overgrowth of the schwann cells that surround the vestibular nerve, which is one of a pair of cranial nerves that helps control balance. These tumors start in the portion of the nerve near the ear, and grow along it's length toward the brain stem. I documented the experience on a separate blog called Bug In The Brain, but haven't posted an update in a year, so I'm long over-due.

Here is some background for anyone who hasn't already heard the beginning of the story:

The vestibular nerve runs along the facial nerve, which is part of a pair that controls facial movement, and the cochlear (or auditory) nerve, which controls hearing for the ear to which is it attached. Because the cochlear nerve is also referred to as the acoustic nerve, vestibular schwannomas can also be known as acoustic neuromas. The above picture shows the relation of the nerves to each other as well as to a small acoustic neuroma. This picture is courtesy of http://www.anworld.com/ and is copyrighted to the Acoustic Neuroma Association of Canada.

My tumor was discovered in the emergency room, almost as an incidental finding. My main symptom was months of headaches, which I consistently wrote off as due to stress, lack of sleep, or needing new glasses. One day, however, I got a fever and started feeling just bad. I went to the clinic mostly just because I needed a work note for calling out without giving enough notice, and the NP advised me to go to the ER if I wasn't better the next day. It's probably a routine thing they tell everyone, but I happened to be a compliant patient this time, and happened to mention to the ER nurse that my headaches had been doing on for awhile, and they thought maybe they'd just check that out with a CT scan. I left the ER with paperwork listing my diagnoses as 1) UTI, 2) brain tumor.

It's hard to get a good photograph of an MRI, but the tumor is shown with the red arrow.

My tumor was very large and was already displacing my brain stem. The CT results listed the dimensions as 4.5 cm x 2 cm. At surgery I believe they said it was closer to 5.1 cm x 3.1 cm. Anyway, it was big for the type of tumor it was.

So it was crazy times for awhile. I had the surgery. They took out the tumor and a chunk of cerebellum that had been damaged by the tumor (or possibly by surgery, I'm not really clear on that). My left ear became permanently deaf due to damage to the auditory nerve. The left side of my face was paralyzed but the facial nerve was left intact, with some hope of future improvement. Everything was spinning all the time, and of course it hurt. I couldn't get up and walk around on my own and my left side (arm and leg) dragged. I failed my first swallow test and passed the second, but was only allowed to eat a "mechanical soft" diet. Even that took some practice. I was so nauseated and exhausted.

I spent 2 days in the ICU, 4 days on a neurological care unit, and 2 more weeks at my parent's house. I couldn't take care of myself, much less my kids. Over the next six months I had a number of procedures to protect my left eye from drying out (due to facial paralysis and not being able to close my eye). I also completed physical therapy, occupational therapy, speech therapy, and a couple sessions of emotional therapy.

Eventually, I went back to work, but I knew I wouldn't be able to hold out as a floor nurse forever. Things were not the same. My head hurt all the time, I tired easily, and I struggled emotionally with returning to a job I didn't love after "facing death". Matt started working towards a career that was supposed to take 18 months of training, with one of the goals being that eventually I wouldn't have to work, or at least not as much. I tried not to struggle while I was actually at work, but my exhaustion would show when I got home.

After a year of a headache that wouldn't go away (Yes, a year. I'm not even being sarcastic.), I went to see a neurologist. She started me on a medication called Nortriptyline to help prevent headaches, and Imitrex to stop a headache that had already started. At first the medication would just make me sleepy, then I would acclimate to it and it would help, and then after a few months the headaches would return. I would go back to the neurologist and she would increase the dosage, and we continued like that for awhile.

Through this period of ups and downs there reached a time where I began to feel really bad. I was nauseated again, my headaches were back full force, I was completely exhausted, and there was a new thing - chest pain and palpitations. I had been exercising regularly for a month or two, but suddenly found myself unable to do the most basic routine due to exhaustion and a racing heart.
During a trip to the neurologist my heart rate was in the 130s. My neuro did a couple quick in-office tests and believed the cause to be a whole different neurologist condition called Postural Orthostatic Tachycardia Syndrome (POTS). POTS is a form of dysautonomia, a collection of conditions caused by the malfunction of the autonomic nervous system. The autonomic nervous system controls vital and automatic functions such as heart rate, blood pressure, digestion, and sweating. Patients with dysautonomia can show a number of symptoms related to these various systems, including dizziness, chest palpitations, weakness, nausea, headache, bowel disturbance - all kinds of things that I had. The neurologist prescribed propanolol to hopefully help lower my heart rate and better control my headaches.

I began to bounce from doctor to doctor, some convinced there was something wrong with me, some convinced I was "fine". My general practitioner was the most sympathetic, seeing that I was clearly struggling, but was unsure how best to proceed. She did write me a note to switch from night to day shift, which of all the things different doctors tried, made the most difference in improving the way I felt. She also started me on fludrocortisone, though it was meant just to help temporarily while the specialists figured things out. I went through series of tests with cardiologists, electrophysiologists, and neurologists, and had all the blood work anyone could think of. The cardiologists couldn't find anything wrong aside from my racing heart, and basically told me in different words to "get over it" and call them "if things get worse".

Finally, I had testing specific to dysautonomia, generally described to me as "autonomic testing", and was told I had "autonomic neuropathy". A number of my test results were abnormal, including my sweat and cardiac responses. I saw the specialist right after the testing, so I assumed my test results were significant. He told me to drink tons of water, increase my sodium, and excerise. I was to start with something like a cardiac rehab exercise program, and work my way up. He told me my problem was "more serious than POTS" and said I would have to be especially careful not to overheat in the summer. I would see him again in 6 months, his next available appointment.


Here is where I left off with my last blog post one year ago. Miserable and confused.

With the psudeo-diagnosis of autonomic neuropathy, I tried to follow instructions but found myself having continuous ups and downs of "okay days and bad days". My neurologist increased the doses of propranolol and nortriptyline. Some days I would be able to drink up to 3 liters of water (I was told to get 4 liters), but other days I would be so nauseated by drinking that I couldn't finish 1.
I borrowed a mat and resistance band from my mom and developed an exercise program for myself of all exercises that could be done laying down or otherwise supine, since changing from laying to sitting or standing made me feel the worse. I tried my best to follow my own program. After a few weeks, however, instead of feeling better, I was feeling worse.

I would be so lightheaded in the morning that I had to sit on the floor of the shower and while brushing my teeth. I had to get a special doctor's note requiring me to sit during morning shift report at work. I never passed out, but I would "grey out" if I tried to ignore my racing heart and the panic-y feeling of "you MUST sit down" that I would get. Actually, I had to sit a lot. Reaching my arms over my head would make me start to feel as if I might pass out as well. My bowel symptoms got so that I would have to excuse myself from shift report to go to the bathroom. I spent a significant number of days dealing with a migraine. My fingers and the bottoms of my feet would tingle and go numb. I was always too hot or too cold, never just right. Matt would let me sleep in any day I didn't have to get up for work (we were misinformed about that 18 month thing he was training for - it would end up taking 3 years before he would be able to work), and I would go to bed early, but still I was exhausted.

I began obsessively tracking my headache level, vital signs, and symptoms in the hopes that it would help my doctors figure out what was wrong. While my neurologist would look closely at my charts and take notes from them, all that would result would be a change in medication levels. She would comment on how well I seemed to be coping, kind of in disbelief of my charted headache levels. I thought maybe I should show up to appointments in my typical house-bound pajamas instead of my going-out dresses.

Finally, on our family trip to the beach last July, I decided this was it. I was chronically sick and not going to get better. I tried my best to participate in everything the family was doing, but walking from the hotel to the beach across the street was exhausting, I couldn't cope with the heat and had to stay under the umbrella, my heart raced and my head pounded. I spent more than a couple afternoons napping rather than going back to the beach. One night at dinner my headache got so bad that I began to panic and couldn't sit still in the restaurant, so excused myself and walked back to the hotel to cry in bed.

During that time at the beach, I began reading about using meditation and mindful awareness to deal with chronic pain and headaches. I ordered a book called How to be Sick - A Buddhist Inspired Guide for the Chronically Ill and their Caregivers. I found it quite helpful, and became more at peace at my resignation to just "be ill".

Then, in August, I went to my long-awaited appointment with the dysautonomia specialist. I came to my appointment armed with notes of symptoms and vital signs. I still have them. It's whiny and not fun. There's a lot of "nagging headache", "abdominal cramps", "nausea", "fluttery chest", "jittery", "anxious", "woozy", and "stabbing pain".

Here's how August 1st looked:
8am - Out of bed. BP while standing after coming downstairs = 88/66. Pulse 147.
Had to squat a few times while making breakfast.
12noon - Sleepy, whoozy, palpitations. BP 95/76, pulse = 124.
1230 - nausea while trying to drink water
1500 - jittery, anxious. BP 96/70, pulse = 122.
1630 - headache 6/10, moving around head
1700 - still have headache, now 8/10. BP 103/77, pulse = 124.
1930 - still have headache, 7/10. Motrin 800mg.
2200 - headache 4/10, going to bed.

He didn't care much about any of this. I was so surprised that the same guy who had told me whatever was wrong with me was "more serious than POTS", was now writing off everything I told him. He basically told me that the reason I wasn't getting better was that I wasn't doing what he told me. If I would just chug water and exercise I would be fine. I told him, "I used to climb the stairs 9 flights before working a night shift, then I could only do 3 flights before a night shift, then I could only do 3 flights and day shift, now I can only do day shift and no stairs.. my problem is I don't have enough energy to get through the day. How is exercise supposed to help?" At least, I told him that in my mind. In reality I had explained my decreased activity tolerance to the resident already, and by the time the attending expert guy came in, I was so tired that I just cried. I sat there and cried like an idiot and nodded my head while he told me to go to the gym at 5am before my 12 hour work shift.

At the front desk when they asked if I wanted to go ahead and schedule my next appointment, I told them I'd have to call them back about it. I went home, threw away the lab work slips they gave me, and through tears of rage I told Matt I wasn't doing the doctor and medication thing anymore. He was fully supportive of this, as he'd long suspected the medications to be contributing to, if not causing, my issues.

It wasn't a good idea, but I stopped taking everything cold turkey. Luckily I didn't really have any side-effects from this, aside from some major headaches in the first couple weeks. Cold turkey is not really a recommended way to end these kinds of medications. I had tried it before and only made it two days. This time I was armed with my rage towards towards the medical community and a tiny gold Buddha I set on my night-stand.
After a week, I started to feel less dizzy and fatigued. After a month, I even began to feel somewhat normal. Headaches continued to be a problem, but without all the other issues going on, they were more tolerable. For my birthday in September, Matt and I went on a 6 mile hike. It was a bit of a challenge, even for Matt, because of some of the steep elevation changes, but we did it! I did it!

In January, after a long wait, Matt left for eight weeks of job training out of state. I cut my work hours back to very part time. While he was away I decided to try working out again. I was able to do it, even upright moves like squats and lunges. I wasn't exhausted - in fact, like I read from regular people, I had more energy! Well, except I wasn't sleeping with Matt being away, so that made me tired, but I could still do the exercise.

After a month or so of exercising, I decided one night to check my pulse rate while laying in bed. It was 59! Excited, I stood up at the side of the bed and checked again a minute later - still 59!
I had done it. I had beat POTS.

Now, I'm three and a half years post-op. I don't know how many of the ups and downs of the last three years have been from medication vs surgery recovery vs other neurological issues. But either way, I'm finished with it. I'm not taking anymore medication. I'm trying to eat more healthy and exercise regularly. I'm sleeping regular hours. I am taking a break from working at all right now to enjoy being a full-time stay at home mom. At this point, I don't think I feel quite "normal", as in, how I would feel had this whole thing never happened, but I feel my own version of normal.

Headaches are less of a problem now, but are still present. I no longer have a constant headache, but do have some level of headache for some part of most days. I wake up with one everyday, but by breakfast it's typically improved. Usually my headaches are just in the background and at this point I don't think about them much, but once a week or so one will get bad enough that it bothers me, and maybe once every other week I'll get more of a migraine. I'll take an 800mg motrin or some tylenol if it's bad enough. If I'm really hurting and miserable, like to the point where I'm thinking about going to the ER, I'll take one of the percocet I have left over. Luckily I haven't had to do that much or recently.
My biggest headache trigger, aside from laying down, seems to be weather changes, but also sinus pressure, strong emotions (like crying or getting really angry), and I think sugar. I'm still not sure about the sugar one.

My left eye is stable. The first punctal plug I had in the lower tear duct fell out and was replaced, and then a couple months ago the replacement fell out. I haven't been back to Dr L recently, as I've been a bad patient, but I think I have enough awareness of how things are with that eye to know that it's okay. I hope so at least. Of course the gold weight and the tarrsorhaphy are still there. Dr L said I wouldn't need the gold weight changed out ever, unless it started to poke through the skin. I kind of wish I had a more low-profile platinum chain, but I didn't have time to research those things at the time that I needed it. I just hate how saggy the weight has already made my eyelid. I'll probably need a lift when I'm older or something. Who wants to contribute to my plastic surgery fund?
I still use Lacrilube (or Target brand, which is my favorite) ointment at night. This is needed to keep my eye from drying out at night, but it makes my eyelid skin kind of extra-well moisturized and sometimes my eye looks "gooey". I mainly notice this as a problem in the rare case that I'm trying to put on makeup. The eyeshadow won't stick to the left eye as much as the right.
In the morning I use Refresh Plus preservative free eye drops. They are slightly less viscous than the Celluvisc I used before, but they've been thick enough, and I was happy to move down a step. I usually only use the drops once in the morning. Occasionally I'll need one once in the afternoon but not usually.

Gold weight and tarrsorhaphy

My face is still about halfway paralyzed on the left. I have some movement below the cheekbone, but not much above. Just now I think I maybe moved my eyebrow a teeeeeeny bit. I have some hope that things will slowly improve but I know it will never be normal. I have synkinesis, which means that parts of my face that do move, don't always move in the way I think I am telling them to. For example, when I try to smile some other muscle pulls and I get a weird dimple in my chin. I would love to get botox again, but it's not really worth going in every three months just to avoid some weird face movements.
My face is still probably my #1 most upsetting thing. At this point a large number of the people I know have never met my "real face". I know it shouldn't and really doesn't matter, but it bothers me a lot.

My facial issues still effect the way I eat and drink to a certain extent, but my compensations are more automatic now. Usually I don't think about it. I don't always use a straw anymore to drink, but I do kind of position cups more on the right side of my mouth. Things like soda cans and narrow bottles are more difficult and I can only take individual sips out of these instead of a regular series of gulps. Whatever I'm drinking will sometimes dribble down my face but the kids seem to notice that more than I do. I try to always have a napkin because I will always make a mess on my face while eating. I guess it's since my lips won't completely move out of the way. I also use the napkin or my hand to kind of cover my mouth while I'm chewing, mostly when out in public, because I know my mouth doesn't always close all the way while I chew and no one wants to see that. In general I still prefer not to eat in front of other (non-family) people, but I don't let it affect my plans or anything.

Here's the "poses" with glasses on and glasses off. Face-face, smile, eyes closed (which results in a frowny face, apparently), and pucker face. I wish masks were somehow in fashion.

I still sleep primarily on my right side. Most nights I wake up at some point with a sore right hip. I try to position all waistbands so they won't be on my right hipbone and make those uncomfortable red lines. If I sleep on my left side, it will only be for a couple hours and I'll usually wake up with more pain I guess where the titanium mesh is.

Of course being deaf on the left hasn't changed. I'm not shy about it (or about any of this, clearly..) and tell most people about it almost right away. I never want someone to think I'm ignoring them, which does happen when people are standing on my left side talking to me and I'm staring off into space, not hearing them. I have the hardest time with background noises. If there is any level of background noise, it makes it really hard for me to hear, or at least make the words out, in conversations. When I'm in a group I probably stare too much at people's faces when they talk, as looking at their lips does help me puzzle things out usually. I want to learn sign language, but have been too lazy to actually try to learn. I just want to know it somehow.

My left ear still has a constant white noise in it. The tinnitus doesn't bother as me as much, luckily. Most days I don't think about it. As soon as I do start to think about it, it gets louder. Sometimes the right ear will ring, but only for about 5-30 seconds, and it's more of a typical ringing tone. That worries me sometimes but it doesn't happen that often and always goes away.

I still get "fuzzy brained" at times. Sometimes I think it's from not hearing what's going. Sometimes things just get kind of loopy and confusing. This usually happens during times of stress, headache, or lack of sleep. For example, in the week after we moved I found it kind of hard to get around Target. Target, of all places! It seemed like the aisles were getting narrower and I couldn't sense the dimensions of my cart and the edges of everything were hazy. It's hard to describe exactly. I hate to use this analogy, because I really don't drink that often at all, but it's the best I can think of - it's kind of like having had a little too much alcohol, but trying to pull off like everything's just fine when really things just aren't quite right. I don't like when I get fuzzy brained because I'm afraid I'm going to bump into someone or loose a child or something.

My memory still sucks. I write a lot of lists.

My balance isn't great. I modify my exercises to avoid anything that involves standing on one foot, because I simply can't balance like that while performing any kind of movement. I can hardly balance like that without moving. Most people with vestibular issues have trouble in the dark because vision is used so much to process up from down, left from right, etc. Despite all that wonderful work I did in PT three years ago, I am no exception. In the dark I feel like a drunk (here's that analogy again) - I have a vague idea of where the floor and walls and furniture should be, but they just keep swirling around and making me wobble. We keep a nightlight in the bathroom and I walk with my hands out in front of me. I have plenty of random bruises on my legs, but I have never fallen.

Since I'm not being followed by any doctors currently, I didn't have my yearly MRI last October. I was, however, in a minor car accident where I ended up getting a head and neck CT, which was clear. I know they weren't really looking for tumors in that case, but I'm fine with it anyway. Besides, if something is wrong I don't really want to know about it right now. Too many things are going well that I'm probably about due for some sort of issue, and I just don't want to deal with it.
Let's claim it now - it's going to be a good year!