Yep, it’s been 9 years since that fucker was removed from my head, mostly. I had my most recent MRI checkup a year ago, and the remnants were stable, the same as they’d been ever since the first MRI after the surgery. It think the dr said we can have the next MRI in 5 years, then even 10 if everything looks good (and no new symptoms appear).
Last year I listed in my FB post (and my Healing Diary page) the things that define my new normal, as in, what it is for me to be an AN warrior, 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.
Let’s visit these in a bit more detail, or put more meat on the bones, as we say in Finnish.
Hearing – SSD
“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.”
There are moments when I hear things my husband doesn’t, because my right ear hears perfectly given the chance (ie. little or no background noise), while my husband has some high frequency hearing loss in both ears. Then there are moments when I try to understand what he means when he says that the weather won’t get freezing again until “up cider”.
Quite often my brain figures out what was said, but it takes a few seconds to register properly. I ask “what” but then reply accordingly even before he has a chance to repeat, but I think that’s more related to my ADHD than SSD. But then there’s the cases where words get jumbled on their way to my ear, due to wind, rain, faucet, dog barking, too much distance, whatever. I hear something totally strange and cannot figure out what was said for real.
Up cider == next Friday 🤦♀️
Things that are impossible for me:
- Making out words spoken (or shouted) from the other room (doors closed in between)
- Making out anything while working in the kitchen for there’s always something: water running, dishwasher running, fan blasting, stuff sizzling in a pan…
- Finding the source of a sound, e.g. where my phone or airpods are when trying to ping-locate them
- Understanding where a person is, when they answer “Here!” to my question of where they are
- Hearing 99% of people talking on my wrong side, ie. left side, because usually people talk VERY quietly around here
- Being able to hold a conversation in a noisy environment with a group of people; I can pick out words or sentences here and there and participate sporadically
- Talking on the phone while dogs are barking
- Using computer audio in meetings – the quality is so poor that I lose syllables
“Tinnitus is a life-long companion, but I’ve learned to live with it.”
There’s the high-pitch A. And a less aubible mid E. And then the low hum. Sometimes I hear music. Sometimes it’s instrumental, sometimes there’s also “vocals”. It’s like hearing lyrics in a foreign language; you know they’re words but they make no sense. Sometimes I think I hear an airplane, but then it doesn’t pass. Sometimes I think a helicopter is hovering above our house, except that there’s no helicopter.
It’s often difficult for me to understand if a sound is in my head or actually outside my head. I try to block my good ear, but then THAT causes a humming noise that further blocks everything else; so not helpful at all.
At home, in relative silence, the tinnitus is ok and I mostly forget about it. In noisy environments it can get so loud it alone causes a sensory overload and I need to flee. If I can’t get away immediately, I try closing my eyes, to block at least the visual input, and block my hearing ear to muffle the sounds, but in the end, I really just need to go. To the toilet, if no other option is available, but preferably outside, away from it all. And ultimately back home to my peaceful refuge.
The only thing that really covers the tinnitus, is blasting music on full volume to my good ear with my airpod. Even my brain can’t compete with that, for some reason.
“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.”
I went out to eat with my youngest kid (a couple months shy of 20yo) the other day. We met at Forum, this shopping mall in the center of Helsinki, and decided to walk a kilometer or so in the slush (remember, it won’t freeze again until up cider, and it’s been raining water and sleet for over a week and the streets were a goddamn mess) to a kebab joint because daughter really wanted a good kebab.
She grabbed my arm as we were walking, telling me she didn’t want me to fall down. I was a bit offended, told her I’m not about to fall down, I can walk perfectly well on my own, thank you very much! She told me that she’s not taking any risks after I allegedly stumbled several times on curbs and kept sidestepping constantly. “It’s a bit difficult in this slush, but I’m fine!” I argued. “You were walking sideways even in Forum, on solid floors,” she retorted and held on. And I let her, if only because it felt nice.
Yes, I do sidestep all. The. Time. I couldn’t walk a straight line if my life depended on it. Trust me, I’ve tried. Basically every time I walk alone to our front door, down our little walkway built of bricks, I TRY. I try to walk a straight line along the bricks, but every time I fail after a few steps. And walking the dogs I need to wear shoes that allow me to occasionally step into the mossy forest, because it’s impossible for me to stay on a narrow path.
Climbing on ladders while doing renovation stuff at home? Dangerous. At least after a few hours when I’m tired. And I really do tire of anything physical in only a few hours time. Most likely because I need to constantly focus on keeping my balance while working in spaces and places and holding tools still etc.
These actually come and go. I guess a year ago I had a worse headache time going on, which probably was one of the reasons I got my MRI checkup a bit early (I remember asking for it instead of waiting until later in the spring when it was due anyway). Sometimes I have daily headaches for weeks and months on end, sometimes nothing for even longer. Right now I’m quite happily headache free.
“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.”
This seems to be getting worse by and by. And it’s not actually dyslexia but most probably anomic apahasia.
I am verbally talented, I have always been verbally talented, having a vast vocabulary in my two main languages (Finnish and English) since a young age (earning me comments about how I’m so precocious) and picking up new languages easily. Now I can barely speak either of those two languages properly anymore. I’ve long called myself semi-lingual (or, the better version I saw a while ago somewhere: bye-lingual), because I keep forgetting words in BOTH languages equally.
At some point I thought it was due to my home language changing to English and Finnish becoming sort of the secondary language in my life (though, ok, work language and also spoken with my kids), when I moved together with my now husband in 2012. But more probably my lingual decline has to do with the AN and/or the surgery. My husband often files my speech problems away as “English not being my native language” (though I’ve spoken it since I was 5 years old; it was my school language). What he doesn’t see (hear) is that I encounter the same problems in Finnish. So yes, it’s a systemic issue, not related to one language or the other.
It’s difficult for me to really pinpoint when this issue started, so I’m not sure if it was already due to having that tumor bugger in my head or if it was caused by the surgery. Hell, it could even STILL be caused by the tumor remnants in my head, for all I know.
All I know is that the issue is gradually getting worse. Usually aphasia caused by surgery is temporary and subsides within months or a year or so. But sometimes it persists. It’s rare-ish, but that specific type of aphasia called anomic aphasia, and the symptoms fit me like a glove:
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
It’s annoying as it has started to affect my ability to work. 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. My speech comes out haltingly as I struggle to find the correct words and often times I need to figure out alternative constructions instead as the intended word simply does not emerge.
It’s easier when writing because I can stop to fumble around in my mind and if I come up with the word in the wrong language I can google translate it. It’s more difficult when talking, when it should flow and I would need to appear a competent expert and then I can’t even get the simplest words correct on occasion.
“Sensory overload – when it happens it’s instant and nearly causes a panic attack and I just need to get away.”
Sensory overload doesn’t actually require a loud environment like a party or something. It can happen just because too many thing happen at once. Like husband comes through the door, dogs bark and rush to the door, my phone rings (read: buzzes on my wrist) and husband tries to hand me a bag of groceries.
Or we’re out for a walk with the dogs, husband chatters about something, a car goes by, and the dog I’m walking keeps pulling this way and that, requiring my attention.
Or we’re sitting at the table, husband is talking and *something* in my clothes is bothering me. A dog hair that’s weasled its way into my shirt, a sock that is crooked, the remnants of a label I cut out but now has a loose string.
It may actually have more to do with my neurodivergence and HSP (high sensitivity) than AN, but being single sidedly deaf and having defective balance sure don’t make things easier.
As I wrote about noisy environments, even with these smaller cases I really need to get away or reduce at least some of the input. Like get husband to stop talking for a while, fix my clothes, manage the barking, just get to a place with less sensory input. Sometimes it’s close to a panic attack, sometimes I’m simply really irritable and might snap at my husband – can’t you just shut up for a while! Can’t you see my shirt has a little pinprick somewhere causing me constant irritation!
Be as it may, I can’t stay in the situation, it needs resolving one way or the other.