This page is dedicated to my healing from the acoustic neuroma – vestibular schwannoma – operation (Jan 15th, 2014). Some notes on how it’s going day to day, week to week after the operation, plus a recap of how it all unraveled before the surgery.
See blog posts (some in English, some in Finnish) about my journey in the category Akustikusneurinooma – acoustic neuroma
I have always had some amount of ringing in my ears. I used to have a whole lot of ear infections as a kid, and hearing problems that were solved by sucking my inner ear free of *stuff*. Late 2011 we came home from Paris, and for the first time in years the landing really hurt my left ear. After that, the tinnitus never left me.
I have also always had some stiffness of shoulders and neck quite easily resulting in headaches too. Late 2012, early 2013 I was suffering from these especially much – but had no idea as of yet that the reason was not poor ergonomy.
Late spring, 2013 I started to realize that the hearing on my let side was getting worse. I went to get my hearing checked and the doctor told me it was, in fact, lower on the left side. Not significantly, but enough for her to send me to the ENT for a more thorough check-up. Good thing she was awake!
In Aug 2013 I went to the ENT, and got sent to MRI, which of course did not happen immediately. “Most probably your problems are due to the childhood ear infections, but we do the MRI for everyone in your situation, to be sure”. Good thing, again.
Nov. 2013 I was waiting for the MRI that was scheduled for Nov 19th and told my husband I was afraid they’d find something there, for I’d started having these numbness points on my face and more headaches again.
Dec. 5th, 2013 I was at work, in the middle of a meeting, when the doctor called me: “Have you had any balance problems?” No, not really. No, wait, come to think of it! I’ve been stumbling in stairs and my balance at dance class is really not improving, but rather going downhill. “Yeah… You have an acoustic neuroma, this benign tumor pressing your hearing nerve. It will be operated in January.” Okay, right. I went back to my meeting.
December 2013, Christmas time I had been exhausted at work all December and took a long vacation at Christmas time. My nerve symptoms were getting worse and right before New Year I called the neurosurgical clinic to ask about them. “Your operation is scheduled for Jan. 15th.” Ok.
Jan 9th, 2014 I went to see the surgeon at Töölö neurosurgical unit, Helsinki University hospital and one of the world wide best, right here in my own home town, together with my husband.
He told us a whole lot about the tumor and the operation (sub-occipital approach, I believe) and everything related to it – possibility of facial palsy (immediate or late onset), the long C-shaped incision behind the ear, the team work with the ENT surgeon for opening up the acoustic nerve canals, the possibility of not getting it all out, and the reasons why it can’t be radiated (too big tumor, the amount of radiation needed would damage the brain) – and showed me the pictures of my 2,78cm tumor. Practically the size of a golf ball!
Jan 14th I spent the day mostly at the ENT clinic for the pre-op testing. Hearing and balance, and meeting with physiotherapist and the ear surgeon participating in the surgery. The ENT doctor told me to expect full hearing loss from my left ear.
Jan 15th Bright and early in the morning my husband drove me there to Töölö hospital to be operated. At approximately 8 am I was in the operation room, with op nurses doing there thing and the anesthesiologist pushing stuff to my vein. “Going under”, I told the bunch and lights went out.
8 hours later or so I woke up in the ICU, thinking that I needed to go fix food for the kids. And then I saw the lights and such, and thought to myself “ok, so maybe not”. Nurses noticed I was awake and came fussing around me, checking my eyes and facial symmetry and such. Everything was a blur for the next 12 hours or so that I spent in the ICU.
Also my surgeon came to visit me in the ICU, telling me that the operation had went well, that there is no major neural damage, but that he had needed to leave a sliver of the tumor inside the head to avoid brain damage. Hopefully it won’t grow back. I had no facial paralysis, but my left hand was a bit numb and swollen.
Jan 16th I was rolled to the regular ward in my bed, still in IV’s and catheters and whatnot, fully stuck to my bed and unable to stay awake for more than five minutes at a time, or eat more than a few spoons of yoghurt and take a sip of juice. The numbness of my hand had passed and my head was humming; I was on my way to recovery.
First days there were a fuzzy blur too. I was detatched from the drip bag and the IV eventually, I started to eat, I was hauled to the shower, and I started to need to get up to use the toilet – with a nurse on my side, for the first days. At times, my vision was a bit blurred, like an unsharp mask, and focus sometimes double. The physiotherapist visited me a couple times, taking me to walks and prodding me to walk a bit further every day with my husband when he came to visit.
Jan 21st I got home. A mere 6 days after major brain surgery. Boy it was good to be home! My head still felt light and heavy at the same time, but I could walk. Even the stairs! And I wasn’t completely exhausted and sleeping all the time anymore. Yes, tired most of the time, but not sleeping all the time anymore.
Jan 22nd Went to the local nurse for head stitch – or actually metal clips – removal. I was scared it would hurt, but it didn’t.
Jan 24th Here we are now. I’ve been home for a few days now. My head buzzes and whines. It’s like there’s a huge big power source in it that constantly hums. Plus the “normal” ringing. On the surface, my head feels plated, like Zorg from Fifth Element. Pain killers keep the throbbing away, but the head is very uncomfortable. Like helium balloon with a heavy shell. Sometimes it feels better to lay the head down, sometimes it’s better to hold it up.
I walk about, I do things like write in my blog and such, read a little bit of Facebook and short articles, but I have no energy to focus on anything lengthy. Not reading my book, and even my daughter’s blog post I had to read in two parts. My eyes work, but I go about relying more on my feel than signals fed to my brain by my eyes.
I slouch around. On the sofa, on the bed, trying to change positions for my whole body is starting to be sore and stiff from all this non-moving and moving in strange ways. I also realize, I easily go holding my breath when doing things, and then I sit down panting. When I walk, I get disoriented just from changing direction. I dream of the day my head stops humming so bad I don’t know where and how I am.
And of the day I can take our dog out again.
I took another shower today. Though it feels wonderful to begin with, not so much anymore when the shower room steams up. Normally, I love the steam room effect, but now it makes me feel a bit dizzy.
My incision, Jan 24th. I have so much hair, it really covers the cut completely.
Jan 25th It’s amazing how much I can sleep! Napping or at least resting throughout the day (e.g. 10-15 min. helping in the kitchen and I’m ready for a nap again…), I still slept again for 11 hours. Not straight, but in like 2+4+5 hours spans. At least those 2h at a time nights seem to be history… That was the story for the first week or so. I also seem to have left the worst of the nightmares at the hospital but still my dream world right now is quite something else!
I also have an endless appetite. I start every meal like person who hasn’t seen food in a week. I’m hungry all the time and have all sorts of cravings – even though my taste is a slight bit off. At first simply eating was using energy too and I was always tired after a meal, but today I noticed for the first time that after breakfast I actually felt energized instead of immediately worn out.
And I still have some of those numbness spots on my face every now and then, which is normal according to the doctor, while the facial nerve repairs itself. My left ear is practically deaf. I can hear *sounds* but not make out words with it. Higher frequensies get lost altogether. If my right ear is against a pillow, I don’t necessarily hear a thing outside my head. And if there’s any extra clatter around, I lose my ability to make out words from speech.
My movements are not so robotic anymore now. I don’t need to take turns in 90 degree angles like I did at first. My orientation remains ok. I go up and down the stairs more swiftly – not like a 2 year old anymore. I can stand on my toes and on one foot for a little while.
I think my fibromyalgia got angry over the operation. When I first woke up, my right ribcage and armpit were sore – they still are, with no visible bruising. Now, I have realized I’m sore all over my skin. Plus my muscles are getting stiff. Lying around all day and all night is not as much fun as one would think. Pain pills keep most of the discomfort at bay. Arcoxia helps with the fibromyalgia too, parasetamol not, making nights uncomfortable since I only get to take Arcoxia for the day. If things get worse, I need to talk about this to a doctor.
Jan 27th I woke up feeling miserable. Physically no different than other mornings, but that’s the problem exactly! I’m tired of waking up to every new morning feeling like crap. Imagine having a hangover that never lifts. My husband reminded me that it’s been less than two weeks since the surgery, and I haven’t even been home for a full week yet, and every day I’m doing much better than the day before. Granted. Baby steps. I’m being impatient. Something one nurse, too, at the hospital told me I’d need to conquer with this.
I had noticed on the ANA site, that Mark Ruffalo has gone through this too, so I started my crappy morning by googling that a bit. Apparently, his story was far worse from what I’ve experienced (so far). And still, he has made his best acting career after that. I’ll rise from this too. Time just stands still for me right now. Every day feels like three. I’m bored, but not well and energetic enough to be doing much anything. My eyes dry out and start to sting from 10 minutes of iPad. Frustration!
Today, at least there’s gonna be a tiny bit of action, when I go to the local nurse to have my stomach stitches taken off. During the operation, they had to take some fat from my stomach to patch stuff in my head, to prevent the CFL (cerebral fluid leakage), and my stomach is all bruised, has some stitches and I can kiss my navel piercing good bye. Today, everything sucks. My positive disposition is lost. I feel cranky and sour.
Besides, I’m not really looking forward to the car ride; it feels plain awful. Floating in the air, disoriented, and not even smoothly. My head does not keep up with the movements, so I get motion sickness even while sitting on the front seat. I guess that will pass with time too. I am not allowed to be driving for the next several weeks myself either – not that I’d even feel like it. Just like I don’t even feel like having any wine or anything, what with my head messed up enough as it is.
Actually, the car experience wasn’t as bad anymore. Left turns felt strange, like brain got left behind for a millisecond, and the overall feeling was like playing a video game where the scenery moved, but not me behind the screen. Getting better… In every way. I walked already much more swiftly and confidently than a week ago, and it felt great to do such a simple thing as to go to the grocery store after the nurse’s appointment!
I did get funnily disoriented there at the health care center, though, when the nurse called my name. I thought it came from my left(!) and turned to go 180 degrees wong direction. Good thing my husband was with me to turn me around and point me to the right where the nurse was…
Jan 28th Ever since the surgery, my senses have been in overdrive – though the fibromyalgia seems to be getting better again. I especially well notice it in the shower, where the water feels like it’s hammering my skin instead of gently running over. I can see every drop of the shower, as a little sparklet. The different sounds of the water hitting the floor, shwooshing by my ears, running down th drain, create a cacophony that fills my head. Not uncomfortable enought to take away the pleasantness of shower in itself, but not really fun either.
Hearing is a funny thing. Soft voices fade into oblivion, I can miss my rather soft alarm completely if my good ear is against the pillow, I don’t always hear the girls talking to me. But e.g. dishes clanging, our dog letting out a sharp bark, feel like explosions inside my head. And all kinds of chatter, TV, whatever multiple sounds coming from different directions confuse and aggravate me. But even that was a bit better today.
Today, I had to go see the doctor at the local health care center. I have managed to develop an angry inflammation on one of my cuticles. Never had one so bad as this before, and with the head surgery only two weeks ago, I wanted to discuss it with a doctor. Antibiotics it is, for a stupid cuticle
After my doctor’s appointment we grabbed some lunch at this Chinese Lunch Buffet, and then went to the local shopping center to get my antibiotics from the pharmacy. I was happy to notice I felt almost normal walking there, in the mall. The noise wasn’t bothering me too much, and I had enough energy to walk all the way to a supermarket to get some shampoo and ice cream 😉 But I did pass the Lidl on the way home, and let my husband take care of getting milk etc. from there while I napped in the car.
Jan 30th A whole lot of my headache has subsided. I still need the Arcoxia in the morning, but then I’m fine for the rest of the day. I take some parasetamol for the night only. I can finally sleep on my stomach (despite the bruise that is still there from that “liposuction”) and mostly sleep just normally, instead of being like a twisted chopstick all night long.
My agility all in all is starting to resemble normal. Only a slight bit off anymore, mostly I feel awkward lifting or carrying things for it makes me feel off-balance. I still sometimes sway just a bit, but mostly I don’t get disoriented anymore. I even stood in the shower washing my hair with my eyes closed, not even thinking about it! Also, the humming in my head has dropped to a bearable level. So doing fine 🙂 Still getting tired extremely easily, though.
The nastiest thing right now is the bruise on my left wrist, where they had this blood monitoring tube during the surgery and in the ICU. It hurts. The way it is on the wrist there, it hurts when I bend my wrist, when I move my hand, when I grab something with the hand. It bothers me in my sleep, when pain shoots through my arm from simply moving the hand to a different position or when it hits my hip etc. It’ll heal, I know. I’m just so easily bruised and my bruises last long
Feb 1st Having been feeling very good for a few days now, it seemed like a setback when today the headache didn’t seem to want to respond to the morning pain medicine at all. The surface of my head around the incision has started to hurt a bit now too. I did feel better again after having my cappucino and some fritatta for breakfast. Maybe I strained my eyes too much yesterday, maybe it was a combo of many different things.
Anyway, I ventured out the door for a short walk with the dog today, for the first time. First we walked together with my husband for a little bit (200 meters or so?) and then he continued to the store and I walked back home with the dog. It’s only like 400m to the store, and I was thinking for a while that I might even be able to make it back and forth, but at that point of halfway there I realized I had been overly optimistic. So I turned back.
Feels kind of frustrating, but little by little I guess. My overall physics are good, so I’m sure I’ll get my strength back in good time 🙂 Just need to take it bit by bit and be merciful to myself. Yes, I also was quite tired by the time I was back home. But it was a good start, a few days short of 3 weeks from the surgery.
Feb 4th I have found dog walking to be excellent threapy for orientation. That little terrier of ours makes me turn this way and that, forcing my head to excersizing. And every time I go out with her, it feels better than the last time. So I believe it really is working!
I also tried watching some movies in our fully equipped TV-room with the Dolby Surrounds and stuff, and burst in tears when I realized that with the Dolby, I needed to turn on the subtitles because I simply could not make out any of the words. My husband turned off the Dolby, switching to plain stereo, and I was able to hear again without subtitles. What a depressing moment!
Feb 7th I myself feel like I’m stuck and there hasn’t been anything happening on a daily basis anymore for a week or something. My husband says though, that in his eyes I am doing better every day. Maybe I am. But the morning headaches are back, Pamol’s not doing anything and I’m back to using Arcoxia again. Disappointing.
Lately, I have been feeling a bit down and sad. The realities of my condition are slowly sinking in. My husband worries that I’ll fall into depression and tries to remind me that it’s only been three weeks and a couple days since the surgery, that I need to give it time before defining any new realities. I know he’s right. But right now it seems like time has stopped and what is now will forever be. I ever mention, that patience is not really among my virtues?
Looking back three weeks from now? When I woke up, I was trapped in my bed, not even able to sit on the edge of my bed while trying to spoon food into my mouth with my left hand while my right hand still had an IV tube stuck into it. Later that day, I was freed of the drip bag and forced into walking to the shower. I was on heavy pain medication, they even gave me some Oxynorm (basically morphine) in the night time, to help me sleep. That there was a seriously bad trip, and no matter what the pain, I refused to have any more of that stuff.
So I guess I have come pretty far already. It’s just, the process seems stuck to me. But I suppose it’s not. And I myself do not fear depression on my account. I am a cat, I always fall on my feet.
Feb 10th Hair is growing back fast around my pretty nicely healing incision. Scalp itches around the wound, especially in the neck and the clip holes, Headaches are slowly subsiding but I still need a pain killer or two a day. I’m still quite tired all the time and worn out easily. And it doesn’t help that we’ve had a bunch of drama in my family, with my sister and my mother who is struggling with lung cancer. You know what they say. When it rains it pours. I’m thinking that I should be up for a bonus level in life here soon already.
Feb 13th This past week I’ve been trying my hand at driving a bit. Like everything else, repetition is the key. First I just turned the car in the driveway, and the first time I did that, it left my head dizzy and spinning from all that turning my head around. Second time was better. Then I drove half a kilometer to the store. First time felt awkward, the second time was better. Head gets used to things little by little.
Feb 16th Today has gone by without me needing a single pain killer! So I guess there is an end to these headaches after all. Neck muscle is a bit stiff and I try to stretch it a bit every once in a while, and the scalp and scull have occasional pains here and there every now and then. My head is slowly gaining feeling again on the surface where the incision is. All in all, I’m feeling a whole lot better today than I was only a couple days ago! A leap and a bound. Yesterday I reached the one month milestone post-op. Maybe I will be ok to get back to work in another month 🙂
Feb 21st What an excellent week it’s been 🙂 My energy levels have been practically sky rocketing, I haven’t needed any pain meds anymore, head hasn’t felt that pressurized anymore, but rather close to normal. I’ve been for long walks (several kilometers, approx. hour long walks) with the dog and my husband. I don’t feel “blind” anymore while walking along. For a while there it felt like nothing was happening and I was stuck, but this week has been a definate uphill for my recuperation. No “because I’m worth it” hair flips just yet though, for that still feels quite awful in my head. As do pirouettes. But I’m sure I’ll get there eventually too 🙂
Feb 28th Feeling just great 🙂 I’m back in the saddle again. I’ve been driving the car again properly, and it feels just good. No dizziness while driving or anything. Dizziness is not all gone though, it may never be, who knows? But it’s more of a when I’m tired -symptom. I also have noticed, that the humid rainy weather makes my skull ache a bit on the AN-side, and on longer walks it quite easily develops into a slight headache too. And the AN-side ear starts hurting quite easily in the cold, along with the feeling of pressure developing in the ear channel. It goes away with a little rest when I’m back in the warm again. I so miss summer!
Oh, one day this past week I also tried the pirouettes again, and this time they didn’t leave my head spinning or cause dizziness either! They weren’t exactly elegant ones, but my balance didn’t falter (much, not any more than before the surgery, when it wasn’t perfect either) and my head felt ok. I also did a little stretching routine there, while I was cooking some spaghetti bolognese for the girls, and I have to admit I did need a bit of rest after that. So maybe not quite yet ready for 1,5h dance classes yet? In a couple weeks maybe? Let’s see…
My incision is doing pretty ok. The clip holes especially in the neck area are a bit agravated, but there’s no inflammations or anything. Hair is growing back fast. It itches quite a bit, though, and I have found this saline solution (sold for caring for piercings) quite helpful. A few times my husband has had to apply some antibiotic creme or Bepanthen or such when some individual clip hole has been more badly irritated or even scraped (by hair brush?).
A couple notes here on the things that I have understood about the recuperation process along the way so far:
- you don’t get anywhere lying around – the recovery only happens when you get out of bed and push yourself one step further than comfortable
- everything feels bad for the first time, but it gets better by repetition (not immediately, but doing it again the next day or after a couple days)
- stairs are an excellent balance excercise and it helps with the dizziness too
- dog walking is an excellent exercise in many ways: it forces the head to practice orientation what with the stopping and going, plus it takes you out into the fresh air, plus the obvious walking excersize (forget the treadmill, get out to the fresh air!)
- doing just normal stuff, like cooking, cleaning, showering etc. is tiring at first, but the energy comes back – but only by getting up and doing things
- rest is important too, and not only physical rest but full rest
- stress makes you tired and head hurts more
- pain killers are there to help you out, you don’t gain anything by being a hero and trying to cope without -au contraire! it’s easier to get up and
- do the things that restore your balance and energy when you’re not struggling with pain constantly
- yes, you can get used to being SSD and learn to move to the correct side of people to hear them, to ask them to repeat what they said, to walk in the traffic safely and whatnot. I even am ok with using the subtitles to aid my hearing when watching movies.
- support groups are a great thing; a big help in learning to live with your new normal, and fun too
So ok, a few more than a couple. And I’m only little over 6 weeks post-op, so only in the beginning of my AN journey myself. But I’ve recovered excellently, and I hope that continues.
March 5th A week and half left of my sick leave. Seven weeks since my surgery. Mostly I feel just great, but on Monday I got a reminder of my state, that I’m still in recovery – and or, who knows if certain things will ever pass completely? We went to the store, a big super market for some grocery shopping, and my god that got my head swimming! I wasn’t ok even yesterday, but I hope today is better again. Such an experience, that I had to write a whole blog post about it 😉
March 11th Yesterday, I went to my first dance class since the surgery! To think that 7 weeks ago I was still learning to walk again, and even just a few weeks ago my head was spinning from everything – and even that super market vertigo not even a week ago, and there I was, practising my piqués and dance routines again! It felt so good – first of all the doing of those normal things like taking the bus to the dance school and changing into my dance gear, and second, the actual dance class.
So ok, I had to rest a few times during the class and cheat a whole many pirouettes on the way, and in the eyes of an ignorant spectator I pretty much sucked. But for me the lesson was one small victory! An accomplishment! You gotta start somewhere. I’ve a long way to go, to get back my dancing skills, but I’ve also already come a long way since the surgery, and in a pretty short time too!
There’s nothing to it, but to do it. You gotta believe in yourself, and believe that you can. In Finnish we say that the reward stands in the end – you gotta work a bit and not stay at home waiting for miracles to happen. They don’t. You make them. And today I got to feel the reward of that one single first dance class: a day without any dizziness, even though I was driving around and having lunch at a restaurant and walking in my high heels! and went shopping with my daughter at the local shopping center. And, besides, it’s spring ❤
March 14th After a week of enduring teenage eyerolls at my “speak up and repeat please, I didn’t hear you”s (our daughters live with us every other week, and with their other parents every other week, and this past week they were with us again), I burst in tears when this morning my H asked me: “I’m right here, so why are you shouting?” I try to take things in stride and just live with my half deafness, but sometimes my cup flows over. Not quite in terms with it yet, though getting better at coping and accepting it. And starting on Monday, I need to start dealing with it at work and with customers too…
March 20th Tomorrow is the Friday of my first week at work after sick leave. Monday was quite difficult. The bus trip to work was ok, even the couple first hours there, but then I started to feel like somebody had poured vodka in my cappucino instead of milk. By afternoon my head was totally overheated and I felt like needing a nap. I went out to visit a doctor to have my asthma med prescription renewed, and that outing helped a lot and I was more ok again for the rest of the day.
Tuesday I was ok visiting a customer and driving back and forth, but then sitting at the table at home working, my head started to overheat again, I got a headache and went to bed with my laptop. Since that point it’s been uphill. Yesterday was I was better, even sitting at the office all day, and today I was quite fine working all day here at home, on my own sofa. Today, too though, I went for a walk outside, with the dog, and that cleared and cooled my head a whole lot and it was much easier to continue working after that again. Fresh air and walking seem to be very helpful. But head also adapts.
March 27th Almost two weeks at work again and it’s starting to feel like I was never away. Mostly I do quite fine: I drive to customers, I work all day on my laptop, I handle online conferencing well (I mean, I didn’t expect that to be a problem, since I have two ears and it’s not like people talk in stereo 😉 ). The overhead lights at our office are fluorescent lights, and that seems to be a bit of a problem for me. But since I can work at home a lot, I do. It makes my work life easier.
I have also gotten back to wearing high heels 🙂 I mean, like, 8-10cm high heels. For a year or year and a half prior to my surgery it didn’t feel good to be walking around in them anymore and I mostly ditched my beloved heels. But now this seems to be better than before operation 🙂 Happy! Besides, it’s spring!
March 31st I wrote a blog post about my current state and thoughts on it, in Eglish: Recovery point.
April 10th Soon back to work for a month already! I am doing better and better at the office, only a slight bit of vertigo but I can live with it. I am also making progress in dance class. Last time I actually managed ok pirouettes without faltering! I am very well recovered 🙂
Ear is still ringing and humminig, and mostly deaf too. The thing that annoys me most about it, is the loss of locating sounds. It can be real frustrating when you don’t understand where someone is when he’s calling. When it sounds to me like the person’s right there next to me but in reality e.g. behind a corner so that i can’t even see them. I wrote a post about being SSD, in Finnish though.
April 21st Here I am, a bit over three months post-op. Last week I had some strange skull sensations (like, I had a itch on a spot at tha base of my skull and when I as much as touched it to scratch it, it sent like a million needles through the left side of my head) and some balance issues, as in a couple days of slightly off balance. But it passed, and I am as good as ever again. Even went climbing a rope pyramid and an excercise thingy, just to see if I still can. I still can 🙂
Easter brought us some beautiful warm sunny spring days, and we have been outside a whole lot 🙂 Does a lot for my mood and general good feeling.
May 5th Had my hearing tests and doctor’s appointment, the post-op check-up at the ENT today. They did all these auditory tests with the head phones on, with and without disturbance of my good ear, and then the test to see what I hear on the AN side through the bone. AN ear, my left ear heard some 250-500hz sounds, other than that, nada. My right ear compensated a whole lot – even with the disturbance static I heard a whole lot of the sounds fed to my AN ear in my good ear. It caused some nasty vertigo for me, for whatever reason. Or maybe it was all that caffeine – it was a harshly early morning for me.
The ENT doctor told me that this is the way it’s gonna be; there’s damage and it will not repair itself compeletely. I will remain SSD, and I will keep having some balance and vertigo issues for the rest of my life. He said even though now I may get them pretty well under control, they may get worse when I get old. I almost felt like giving up and stop fighting to retrieve my full balance and agility and all, I even went to the dance class feeling a bit beaten, but then decided, that that’s not the way to go. The doctor does not define me or what I can do or achieve.
I define me. I strive to be in as good shape as I can. I can even do 3×1,5 chained pirouttes + a touch-step and a kick without stumbling (too much 😉 ), and will damn well learn the dance routine with all it’s pirouettes well enough to go on stage with it again!
May 8th I had my hair re-colored today for the first time since surgery. In the info-sheet it said to wait for 8 weeks before such hair treatments, but I didn’t feel comfortable going to the hair dresser until almost three months post-op, and then I only got my hair dresser’s appointment several weeks away, for today. The only slightly tough part was the washing, with my head hanging over the sink, my neck against the edge. But even that wasn’t too uncomfortable. It’s great having my own looks again 🙂
May 25th I had my last dance class of the season last Monday. I consider it a personal victory, for I finally actually managed to do 4 chained pirouettes in a row without being dizzy and actually maintain my orientation throughout!
I had my goal set for this upcoming Monday to go on stage and perform with our dance group, but my mom died little over a week ago in Las Palmas, so I am flying there, not dancing on stage. Still, the main thing is that I would’ve been ready to rock ‘n’ roll! I learned the routine and didn’t stumble with pirouettes anymore!
June 1st Four flights in five days. I had a layover both ways. I wondered a bit, though was not really worried, how the take-offs and landings would go, since I’ve had some problems with them in my life with ears hurting bad and all. But everything went well. No pains in either ear, no pressure problems inside my head, no nothing. I could even say that I had less problems than usually before my AN operation. My life seems to be pretty well back to what it was, minus(or should I say plus?) the SSD.
Oct 30th Fatigue. Fatigue, fatigue, fatigue. Sometimes I make-believe that I’m fine and function ok and it’s ok to work. But truth be told, I’m tired all the damned time. I go through work days functioning ok, I get my job done, but in the evening I just wait to be able to crash, kick back in bed and close my eyes. It’s not all AN related, I’m sure. I’m under a whole lot of stress, have been for quite some time. Maybe it’ll pass when we have moved to our new home, or at least lft a bit.
I’ve been having some headaches again lately, and some of those strange nerve feelings in my face daily. I was thinking about calling the hospital about them, but have not done that yet. Maybe I won’t, maybe I will, if they keep getting worse. I worry a bit that my tumor has started growing back. I have my next/first post-op MRI in March and I don’t know if there would be any reason to move it up a bit or not. My health is not 100% anymore, this AN has made me 10 years older in half a year. It’s quite sad, and I have a hard time coping with it. I am still young, but I have the energy and memory issues of an old person. It’s all very vague, there’s nothing I can pinpoint, it just is. I’m the same as I have always been, but I’m not.
Feb 22nd, 2015 Headaches, tingling feelings around my left eye, balance off ever so slightly, 3D vision problems. I’m a bit scared. Two weeks to my MRI check-up, and then a week more before I hear my results. I’m scared that the tumor has grown back. I wasn’t scared the first time I had the MRI taken, for I was oblivious of what lay ahead. Of course, I can’t know now either, and I need to hope for the best, but I’m scared. Some older ANers told me that these tinglings may or may not fade away after some years.
Maybe I shouldn’t waste my precious energy by being scared. I can’t fully help it though.
March 21st, 2015 Had my first follow-up MRI a couple weeks ago, and the following doctor’s appointment last Monday. There was more tumor left in my head than my surgeon had anticipated, but nothing indicating that it would’ve grown, at least not significantly. So, basically everything was ok and my worries unnecessary. I’ll have another MRI a year from now.
May 20th, 2015 Lately I have had an increasingly bad problem with ingrown hairs and infected hair follicles along the incision line. Someone suggested seeing the doctor; she had, and the doctor had removed a bunch of ingrown hairs and given some super antibiotic cream. I’ve been pulling out hairs like crazy, I’ve got bald spots here and there now (not that anyone can see them through the thick of my hair). Maybe I’ll try some of my antibiotic cream on them before going to see a doctor about it. My husband suggested getting hair along the scar completely removed by lazer – no one would even notice. But I don’t know… I’m not quite there yet with the problem.
Whether it is or probably isn’t related in any way, I might have found (or rather the dr might have found) a reason for my overwhelming fatigue. After some blood tests he said my thyroid seems to be a bit lazy. I started meds for that a couple days ago. Lets see if my fatigue lifts or not. Should notice the difference in a couple weeks or so.
June 3rd, 2015 Been on that thyroid med for a little over two weeks now, and I feel back to normal! The exhaustion has lifted almost entirely. My usual rhythm of staying up late is back, when I’m not ready to drop at eight in the evening anymore. Mornings are tough, I’m so sleepy when my alarm goes off at seven, but that’s nothing new either 😀 Been that way all my life. Apparently, this thyroid has nothing to do with the AN, or maybe it is part of the way my body reacted to the intruder tumor and surgery, who knows. Anyway, I’m really happy this was found and solved the issue!
My scalp started to agravate the shit out of me, so I did go to see a doctor about it. He put me on antibiotics, just pills, for a good ten days and that issue seems to be solved too. On with life 🙂
Dec 28th, 2015 Hair follicles just keep getting inflammated constantly so I’m resigned to using cortisone liniment almost daily to keep the agravation at bay.
I took an SSD-mute tattoo in September. Behind the deaf ear. My husband tells me that one of these days the doctors will be able to restore my hearing but I’m not so sure about that… I also had a Phoenix inked on my leg to symbolize my journey from the operation room back to life again.
There will be another MRI sometime in the spring. Sometimes I almost wish the darned thing would just grow back enought for them to need to operate it again, in hopes that then it would be gone for good. But then again, not really. I just hope it never will grow back.
March 11th, 2016 Had my annual check-up here recently. MRI and doctor’s appointment. I’m happy to announce that there was no growth in the remainders of my tumor o/ I’ll have my next MRI again a year from now, and if there still is no growth, they’ll make the MRI’s biennial.
Sept 9th, 2016 Yesterday I lost my phone in a store after I had set it down on a shelf for like 10 seconds to measure a picture frame. I panicked badly and when I noticed these two guys walking away from the area, I ran to them demanding to know if they had taken my phone. They were genuinely puzzled and the other one offered his phone to me so I could call mine. I did and we heard the ringtone, but I could not place the sound, so I started pleading the others there (of course, I had already gathered a crowd there with the scene) to help me find the phone since I had no idea where the ringing was coming from (one of the side effects of SSD that bother me most!) while I was just whilring around and panicking. The one guy found my phone, and I thanked and apologized and left the store in a hurry for my heart was racing and knees were weak and I just had to get out of there.
It’s at times like these when I feel somehow impaired and not in control of my life or being like I used to be before the surgery and SSD. Other than this (location by sound) I feel pretty much “normal”. I’m mostly not even bothered anymore when I can’t hear everything in social situations and I have accepted the need for subtitles when watching tv, but this is a tough one.
Jan 15th, 2017 3y ANniversary. Leading a rather normal life 🙂
April 2017 Annual check-up. No growth. Next time MRI in two years 🙂
October 2018 A lot of the time I forget my AN and even SSD completely. Can’t believe it’s been almost five years already– while at the same time can’t believe it’s been only few months shy of five years. But then there’s those times when I’m really tired and my balance falters, and the times I just stumble in the middle of nothing, and the times when I simply cannot hear or everything becomes an incomprehensible jumble in my ears. Annoys me ever so slightly, but it’s my new normal.
Jan 15th, 2022, 8y ANniversary Facebook post:
8 year ANniversary today (date of tumor removal Jan 15 2014). On Monday I’ll hear the verdict of my latest MRI; I still have a bit of the tumor left in my head. So far last time it hadn’t grown, hoping for similar good news Monday too. My life as a survivor in a nutshell:
- My right ear compensates the deafness of the left one rather nicely, but I still don’t usually have any clue as to the origin or direction of sounds.
- Tinnitus is a life-long companion, but I’ve learned to live with it.
- Balance is sort of ok, but I do side-step A LOT.- I get tired easily, especially if I need to concentrate on balance or hearing.
- Headaches, check.
- Fuzzy brain symptoms, mainly some amount of dyslexia, forgetting simple words, being confoozled at times, all the while having the sharp problem solving mind I’ve always had. Sort of a conundrum.
- Sensory overload – when it happens it’s instant and nearly causes a panic attack and I just need to get away.
But I’m doing ok. Living with what we AN survivors call the new normal, and mine is not even that drastically different from the old as some have it. I consider myself lucky.
Jan 17th, 2022 Had my doctor appointment for MRI results. No growth, the tumor may even be a tiny bit smaller. I’ll have one more scheduled MRI two years from now and if there’s still no change, there will be no more checkups and MRIs unless I get some new symptoms.
Jan 15th, 2023, 9y ANniversary. I have recently been more and more aware of my problems with speech and finding words. I work with customers a lot and sometimes, especially when I get tired after a tirade of meetings, my ability to form sentences and say what I’m trying to say gets real bad, and I feel a bit embarrassed about it. I started researching aphasia and found that anomic aphasia is something that fits my symptoms exactly and can be a longterm issue caused by brain tumors and brain surgery.
Anomic aphasia is a mild form of aphasia in which the individual has difficulty with word-finding, or naming items.
In anomic aphasia, speech is typically fluent and produced with seeming ease. However, the individual might have trouble retrieving specific words, especially nouns and verbs.
A person with anomic aphasia will typically speak in complete, grammatically correct sentences. However, they might use vague words like “thing” or describe an item that they cannot name. For instance, someone who cannot think of the word “apple” might say, “I ate a red, round fruit for lunch.” Speech therapists can work with people with anomic aphasia on tasks to improve their naming and word-finding
CHARACTERISTICS OF ANOMIC APHASIA
People with anomic aphasia usually have good comprehension; they can understand spoken messages
They usually are able to read
They might have the same difficulty with word retrieval when writing as they do when speaking
People with anomic aphasia are often able to successfully communicate using strategies to work around their word-finding difficulties
People with anomic aphasia are sometimes able to produce the word when given a cue, like the first letter of the word
So, I guess I’m adding this to my new normal life as an AN survivor list. Quite upsetting for a person who relies on words in their work.