i'm not sure where to start, or if it's even appropriate that i post yet, but i'm the sort who likes to get all the basic facts prior to the journey (and also to start staring down reality in advance of facing it), and in 24 hours, this site has already become my primer to a thing i didn't even know existed 48 hours ago. (thank you, everyone who happened to mention dr. schwartz in los angeles, as that will be our first stop.) so i suppose i'll just start. and i can be windy, so this will be long, and thanks in advance if you had the energy to read it, much less offer commentary or guidance.
i am 42, and my 22 year old son was just diagnosed. we got the call at 9:30a on new years eve. we found out quite by accident, and had certain things not aligned in exactly the way they did, we still wouldn't know.
i had my son at 19. by the time he was 18 months old, he was diagnosed with a rare disease called opsoclonus-myoclonus syndrome. i'll leave it to you to research if inclined, but for now, suffice to say, we aren't unfamiliar with rare illnesses, nor with overcoming them, and my son - despite cognitive delays and speech issues and stunted growth (from the disease's treatment) and all the rest, has beaten some pretty serious odds to find himself driving, working, going to school, and spending time with a girlfriend. this isn't to say that he's a 'normal' 22-year-old, but he certainly far exceeded the goals his neurologist had for him way back in the day. relapse has been a constant threat, however, and we've considered ourselves lucky that it hasn't happened.
but i suppose it wasn't enough for him to face just one thing.
he has been receiving ssi as an adult since just before turning 19. they summarily decided, a few months ago, that he wasn't disabled (despite being approved twice - the first time at 3 years old, which my income edged us out of eventually, and again as an adult), and sent us for a 'mental exam' in september. this has ultimately resulted in a denial and an ongoing appeal, which is whole other matter, but the point is, on the way home from said 'mental exam', my son - who has had cognitive delays and speech articulation issues since he started speaking at 4 years old [delay due to the OMS... maybe?] - mentioned that he is tired of what he thinks not coming out the way he intends.
so i mentioned, carefully, because he's sensitive to his disabilities, that perhaps we look into speech therapy. 'i know you had it as a kid, but maybe now that you're an adult and more motivated, it could help.' to my surprise, he agreed, and so i immediately launched into the research. i discovered that our anthem hmo has generous speech therapy coverage, so called his pcp (also my own, with whom i have a good relationship) for a referral. long story short, he gave it to me, and after two weeks the IPA approved it, and off we went.
i was told that as part of their intake process they do a hearing exam. despite the fact that i suspected very very early on (from the time my son was three, and it's in the medical notes) that he had hearing loss, all tests over the years have come back clear, so i assured him it was a formality, and when he indicated it would be a waste of time, i said, 'yeah, but you'll be in and out in 15 minutes and then we can get on with the therapy. they'll say your hearing is fine and that will be that and we can get down to it.'
not the case.
though i long ago stopped going with him to his appointments, i did accompany him to this one, since it was sort of a new thing and the providence center was five minutes from my office, and i started becoming slightly alarmed when the appointment they'd advised would take thirty minutes left me in the waiting room for 90. when the audiologist came out with him, she advised that he had 'significant permanent hearing loss' in his left ear. 70%, to be precise. she showed me the test, which she'd run twice because she was so surprised (hence the delay), and the results were obvious even to a layman. started high to the left, plummeted to the right. (subsequent googling indicates his exam is TEXTBOOK for an, and i plan to send her a thank you note for recognizing it.) she recommended a hearing aid, a referral to an ENT, and mentioned 'possible tumor.' she mentioned that she felt the hearing loss had been a gradual thing over the course of his life.
as my son has had significant issues already, and since he had tubes put in his ears just before the symptoms of his OMS started at 18 months of age, and since i'd long suspected hearing issues, i was actually relieved, or at least, i felt vindicated. 'FINALLY SOMEONE IS SEEING WHAT I'VE BEEN SEEING. i guess i wasn't crazy after all. maybe we'll finally get an answer!' my son, for his part, was devastated to learn of the hearing loss that was obviously longstanding, ongoing, and which he had managed to compensate for with his perfect right ear. but i talked him off the ledge, assuring him that a) yeah, the loss sucks, but today is no different than yesterday, it's just that now we know, and b) "believe me, you don't have a tumor. how could you have had a tumor in your head for up to twenty years without us knowing? don't worry about it. we'll follow up and we'll find out what's going on, and honestly, i suspect it's the result of that tube surgery." 'you don't think i have a tumor?' 'of course not! there's no way you have a tumor!'
and i didn't. i didn't think he did.
after a few weeks, we saw the ENT, who seemed unimpressed by my son's hearing loss ('plenty of people live nearly deaf in one ear') and likewise didn't seem to trust the audiologist's report in the first place. he wanted to run their own test, but i told him, 'she ran it twice, and she was confident, so i trust it. i don't think we need to waste time with another test.' he just made noises like 'whatever' (he's highly regarded, so i kind of took some hope from this), but i insisted on an MRI 'just to be safe' and he went ahead and ordered it, making it clear he didn't expect it to turn up with anything. i don't mean to make him sound like he didn't care - it's just, he clearly didn't think my son had a serious issue, and based on the sorts of patients he sees, and their ages (based on our counterparts in the waiting room), i can kind of understand why he wasn't overly concerned by my son's loss of hearing, especially since my son told him how the headphones were bothering him during the test, and that he thought he was just 'distracted' during said.
anyway, so we had the MRI on the 28th, which i felt might come up with something, but didn't know what and wasn't necessarily alarmed by the possibilities. i don't know what i expected, but it wasn't a *brain tumor*, to be sure. i just thought it would be something, though i guess, what could it have been, other than this? anyway, the point is, it was just 'hey, we're here for this test. it'll be all right.' but then the doc called yesterday with the results, sounding surprised. "so, they found something on the MRI."
that was the first i heard of 'acoustic neuroma.' after he explained what it was and where they're normally found and the possible treatments (watch and wait, radiation, surgery, as you all know), he told me that my son's was 'deep in the canal,' and that he didn't feel he'd be a good candidate for surgery. we talked more, and agreed to speak more in depth at my son's followup visit on the 14th. before we hung up, i asked, 'by the way, how large is it?' his response was, 'it's rather large. about an inch in diameter.' not sure why he dumbed that down for me, but subsequent research led me to discover that at 22 years old, my son has an approximately 2.5 cm tumor in his head.
so that was that, and then i started doing research, and that led me to here.
beyond that, there's not much to say at this point. i already requested copies of the scan, and (thanks to this forum) will be sending it to kek and house as soon as i get it. no idea how to pay for it, since it appears that no one is going to take my anthem HMO, but i suppose i can empty my son's college fund and our savings, which won't cover much, but which will help. also, i know i need to reserve judgment and decisions until after the followup - just trying to get familiar, so that i ask the right questions, and know where to go if i'm not confident in the recommendations.
it's terrifying, and i'm heartbroken that my son has to deal with this on top of everything else, since even treatment could eliminate what little quality of life he's managed to carve out for himself in spite of his FIRST diagnosis. still, i know something needs to be done.
it's funny how now his reports of dizziness and headache over the past few months (the former which made me fear OMS relapse and the latter i chalked up to people's usual random headaches) now seem so sinister, and point me in the direction of thinking that 'watch and wait' will not be the recommendation of anyone we consult. as my son says, 'this is real now.' and it seems indeed to be real now.
but he has a sense of humor. earlier today, through his tears when i was telling him the risks of surgery, he told me he named his tumor 'bill'. because - and apologies if this offends anyone, but i think it's good my son has a wry sense of humor, because that's how he copes and i know it will serve him well through this - 'it's a rapist of my brain.'
anyway, this is hard. and i'm glad you're all here, because i can't even imagine how insane i'd feel if i hadn't found this site and its wealth of information within hours of diagnosis yesterday. so thank you.
