ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: areles on April 30, 2017, 07:21:50 pm
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Hi. This is a third party update, but I thought I'd take a minute to check in and let folks know how my son (24 as of two weeks ago) is doing 14 months post op.
The first six months or so after surgery, he mentioned pretty chronic headaches - sometimes "no big deal" (if I asked for a number, he'd say 3 or 4), sometimes awful (8 or 9), but always present. In addition to the obvious issues with loud environments, his really bad headaches primarily tended to follow along with high stress. He has always managed them with ibuprofen, with varying degrees of success, refusing to take anything stronger because he said it didn't help anyway, and made him nauseous and loopy to boot.
He unfortunately lost his lifeguarding job in September (honestly, he probably had a case there, but he let it go) and has since been focused primarily on school. To be honest, his recovery seemed to noticeably speed up once one of his stressors was removed and he had only to focus on his classes, so we encouraged him to lay low on the working thing. However, six months out of work, he's over it and is actively looking for a new job.
At this point, I can't even think of the last time he has mentioned a headache; it's kind of to the point where last year seems like a dream, something that happened to someone else - it's strange to think that he had brain surgery a year ago. Apart from the SSD, which he has learned to manage quite well, there's little evidence at this point in time of what he went through last February and the subsequent six months. Also, his recognition that his headaches get worse with stress has induced him to better manage his stress levels. Likewise, though he's never really been much of a drinker, now he doesn't really touch alcohol except on rare occasions and in extreme moderation, because he noticed that alcohol also did him no favors when it came to the headaches.
At one time fearful that he'd lose his two great passions as a result of his surgery - music and surfing - neither have turned out to be the case. He's actually really focused on music, and has taken two music classes since his surgery, with piano teed up for summer term. He has started a vlog on youtube, where he talks about whatever (I stay out of it - it's his thing, and cathartic for him).
He started working out again about three months post op, but the headaches were nightmarish so he cooled it; at this point, however, he's back in the gym every day (sometimes twice a day). He's back on his surfboard, surfing several mornings a week. He would've been back out there sooner, but he gained a little weight after surgery / losing his job, so couldn't fit into his wetsuit till he started working out again. ;) But he's back out there now.
There are no balance issues to speak of - not even in the middle of the night. He has had night terrors since he was three or four, but these completely disappeared after surgery. (It's the strangest thing - they completely STOPPED.)
With respect to the issues with SSD, shortly after surgery I purchased a mono earbud (https://www.amazon.com/gp/product/B00PG5ZYKK/ref=oh_aui_search_detailpage?ie=UTF8&psc=1 (http://(https://www.amazon.com/gp/product/B00PG5ZYKK/ref=oh_aui_search_detailpage?ie=UTF8&psc=1)) and a set of mono headphones (https://www.amazon.com/gp/product/B000MUXVYK/ref=oh_aui_search_detailpage?ie=UTF8&psc=1 (https://www.amazon.com/gp/product/B000MUXVYK/ref=oh_aui_search_detailpage?ie=UTF8&psc=1)) for him, which sort of changed his world post-op, when it comes to music. You should've seen his face when he put the earbud in; he was skeptical, and telling me it wouldn't make a difference... and then, grinning ear to ear. He has learned to carry earplugs with him when he's going somewhere with lots of ambient noise, in order to dull the roar and avoid the headaches.
He runs hot and likes to have a fan running, so now that it's getting hot again, I spent a little extra money on a very powerful, but very quiet fan (https://www.amazon.com/gp/product/B00C4QP8N2/ref=oh_aui_detailpage_o00_s01?ie=UTF8&psc=1 (https://www.amazon.com/gp/product/B00C4QP8N2/ref=oh_aui_detailpage_o00_s01?ie=UTF8&psc=1)), which he absolutely loves, as he can have it on high and it doesn't interfere with the sound of his music or television. While for awhile he was very interested in BAHA, he seems to have backed off that quite a bit. He seems to have adapted strangely well to the SSD; you'd think the TV would be blaring, or we'd wake up in the mornings to window-rattling led zeppelin or something, but if anything, he keeps the volume *lower* now than prior to surgery. The only time it really causes him an issue is in loud environments (obviously). Also, the loss of directional hearing took him awhile to get used to -especially when driving (it was very upsetting to him, the first time he realized he couldn't place where an ambulance's sirens were coming from) - but he seems to have found his footing with that, as well.
As a third party, the only time I really notice it is when he calls out for me, and I answer, and he goes looking for me in the opposite direction of where I actually am. :) But for the most part, he has adapted really well to this.
He had his first post op MRI last August, which was clear, and he doesn't have to have another one till this coming August.
So that's pretty much where things are right now; all in all, the only way we could've gotten a better result would be if he hadn't had the acoustic neuroma at all.
(PS - also, haven't heard any significant complaints about dizziness, vertigo, or blurred vision in ages. He isn't the type to complain about these things, though, so he may be experiencing them more than I realize. But I see no evidence that if he IS experiencing them, that they are significant enough to interfere with his daily activities. Same with the headaches - I will say my guess is that he has learned to function at a steady 2 or 3, and only bothers mentioning them to me if and when they shoot up in intensity. But the last time I asked him about any of this, he looked at me like I was high. "No, I'm great, why are you even asking?" Haha.)
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Thanks for the update! Nice to hear that he is living his life!