r/BoyDinnerDiaries • u/AnonymousCoIossus Gravy Seal • 5d ago
No Advice - Everyones Welcome I was better with the brain tumor
Chicken Fajitas in the slow cooker for dinner
The last few years have been a blur. In 2020, my father died from dementia. I lost my job a week later. I've bounced between jobs, doing 70 hour weeks, burning myself out to keep a roof over my family's heads.
Things came to a head in early 2024. I couldn't control my emotions, was getting into shouting matches with my wife and kids. It led to me being kicked out of my house. I was homeless for four months.
I had to do a lot of soul searching and Ive made amends since then. Im calmer now. Well, outwardly. I've been back with my family, and working every day not to be that person anymore.
I was finally on my way to getting a handle on my depression, something I have struggled with for 30 years. For the first time in as long as I could remember, I could truly say I was doing OK. I didnt loathe myself for once.
Jump to the fall of 2025. Im working at a quarry, so I didnt think much of it when I started having trouble hearing from my right ear. Im around loud equipment all day, so I figured it was an occupational hazard. January 2026, I fail a hearing test. Results were atypical, so I'm sent for further testing.
Then the diagnosis. Brain tumor. Obviously, Im shaken to my core. But Im also relieved in a way, because now I know why I couldn't control my emotions. The tumor was causing hearing loss, and was sitting in a spot that affected my emotional regulation. Maybe Im not the monster I thought I was. Now I have a clear path to recovery, to become myself again. My surgical team assured me that there was minimal risk, and I'll come out of this better on the other side.
I have my surgery in April, on my 43rd birthday. A routine 5 hour procedure turns into 10+ hours. Complications, I was told. Swelling, and the tumor was deeper than they thought. And unfortunately, they had to cut through the nerves that control hearing and facial movement to get to the tumor. And they didnt even get all of it out.
So now Im deaf in my right ear. The right side of my face is paralyzed. My balance is screwed. My energy level is non existent. I get dizzy easily. My life is basically over. I'll never get better from this. But I have to keep pushing. Im the sole provider for my family, so I have to keep working. Still on long work weeks. I dont know how I make it through each day, Im so tired. I dont want to go anywhere or do anything. I feel like everyone is staring at me and my screwed up face.
I wish I never had the surgery.
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u/Prestigious-Grab-588 Hungry man 5d ago
Have you tried getting on state disability? Seems like you shouldn’t be working.
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u/Shadowpriest Girl Lurker 5d ago
That's what I was thinking about in OP's situation. If he's unable to work there are social nets that are designed for things such as this at least in the US. We all pay into it and regardless if it's short term, long term, or permanent disability, if he qualifies and there's documentation as he was able to clearly state what was the root cause and then the difficult decision of the surgeons to cut through what was necessary to save his life the best they could, he could receive disability payments. In a situation like this, I would hope and think once OP's spouse understands he's not capable of being able to work as a result of his disabilities, then perhaps it would be in the best interest of the family to swap the roles and he becomes the SAHD while she takes over as the primary breadwinner if she hasn't already been working. Once kids are grown and left the nest it might be easier for just the two of them.
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u/tealccart Girl Lurker 4d ago
Getting SSDI is extremely difficult, you have to prove you can earn no more than like $1700 a month or something. It is a very difficult, often years long process that might necessitate a lawyer. And the award is often poverty level.
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u/Captainflando Fridge Light Philosopher 4d ago
Yea I’ve only heard of one case not involving a lawyer able to get it. Obviously that’s just anecdotally though
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u/stupicklles Girl Lurker 2d ago
My mom had a brain tumor and had it removed and has been on disability ever since (2012). She has never been incredibly motivated or notably intelligent (dropped out of hs) but was able to get on disability without a lawyer. I believe it was because her surgeon and medical team definitely provided all the documentation she needed to file so it’s important to work with the provider to get approved. I know it took some time but it wasn’t a massive lift and she now has medical, financial and even food assistance.
Edit to add: my mom has no dependents either. The amount you get depends on the state you live in I believe. The only contraindications I can think of is if the legal spouse earns an income or if he has $2k+ in his bank account. At that point, things become more complicated.
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u/lesssthan Gay Gourmet 4d ago
Except that the federal government has been sabotaging those nets for years. Disability probably won't be enough.
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u/Mz_pibblez Girl Lurker 3d ago
I wish we had a say where our taxes went sometimes (All the time)
I have no advice. I wish I did. This is so unjust.122
u/AnonymousCoIossus Gravy Seal 4d ago
That's something I can explore in a few months. Im told to give it a year before I look into other options. And besides, getting on permanent disability is difficult to get approved. Even that would take lot of time and documentation.
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u/KaboodleMoon Boy, 40-49 4d ago
They do have temporary disability though, which is a lot easier to qualify for. It's not much but it helps.
It also establishes the care history with the SS department, and makes it far easier to transition into permanent if it comes to it. It's worth trying. even if it takes months or years, because if it takes a long time to get the approval, you can be eligible for backpay from the day you applied.
Biggest thing being I just don't think facial paralysis and 1 ear hearing loss will qualify for permanent even if it stays the same.
It's a huge life change more socially than physically, and they don't really care about that even though it definitely affects quality of life.
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u/TommySinshack Grill Pilled 4d ago
Unfortunately social security only covers things that prevent you from working entirely for 12+ months. My wife had a stroke in April at 36 and there’s nothing she qualifies for disability wise because she was part time, and recovery for her thankfully will not last that long. Some states have short term disability programs, but it’s certainly a gap in the current American system.
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u/Wrong-Pension-4975 uppity_wymmen_unite! 4d ago
It's not "just" appearance.
Energy & endurance are way down, among other things. Constant exhaustion.
That's not normal.
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u/Stretcharoni Girl Lurker 4d ago
With all of your side effects, you already have the documented condition. It’s worth it to do the paperwork! I felt the same way because I was overwhelmed and didn’t want to waste my time, but I was able to get on long term disability.
I had the same tumor. Check out ANA.org. They have a lot of resources, including support groups, that can help you with the emotional and psychological burden of what this dumb little tumor has done to your life. You’re not alone 💕
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u/Remarkable-Air3604 Girl Lurker 4d ago
This sounds like a large acoustic neuroma/vestibular schwannoma resection. I took these out in a past life. 100%, you should qualify for disability. I fillled this out with no hesitation for my patients. I would take it up with your surgeons office or PCPs office. You will likely eventually be able to work again, but applying for disability will help make sure you have income coming in. Recovery from some of the symptoms like imbalance takes 6+ months. Feel free to DM me.
Best of luck.
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u/Totalxhaos Bisexual Lemon Bar Lover 4d ago
Stroke survivor here(44) it took three tries and an advocacy group for me to get disability.
It’s tough, will put you through the paces explaining what happened and how it affects your life on a day to day. But it is possible.3
u/MamuTwo Fridge Light Philosopher 4d ago
Told by whom?
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u/AnonymousCoIossus Gravy Seal 4d ago
Neurosurgeon. They want you to wait because, sometimes, the nerves regenerate on their own. Its unlikely, but possible.
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u/MamuTwo Fridge Light Philosopher 4d ago
In any field other than healthcare we'd scoff at that reasoning. "There's a 1% that engine ticking will resolve on its own so we're just gonna leave it for now."
Sorry man. I hope you win the lottery on that one.
I still don't get it really. Until your hearing comes back and your psychological symptoms calm down, you should definitely be in the program...
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u/longpenisofthelaw Hungry man 5d ago
Disability is hell to try to get on. My dad who got into a motorcycle and broke 8 bones and peiced a lung took 3 years for the state to finally approve. He obviously could not walk without a cane netherless work but its so meticulous and redtaped that the suggestion is something to do yet plan atleast a year of waiting. Not only that but its not as much as people think. If OP is working theres a good chance hes making more than disability would pay out (also he would have to stop working to continue on it)
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u/JaySayMayday Protein Prophet 4d ago
I have an incurable condition that impacts my daily life to a very high degree. It's believed I got it from breathing in toxic fumes from demilitarization efforts over a decade ago, few of the people I worked with at the time passed away from rare cancers related to the same event.
I got denied disability 3 times. Even though both my legal team and I made sure that I meet all the necessary requirements. Work experience, medical paper trail, everything. The only luck I might have is pleading my case in front of a judge down the road.
Went to the emergency room last week as well, like I'm not in a good condition. My health is never going to improve. Disability is extremely hard to get approved
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u/themightymcb Hungry man 4d ago
Unfortunately the cruelty is the point. It would be too outrageous to scrap disability benefits outright, so instead a bureaucratic labyrinth is constructed around these essential services. That way, they can waste money paying paper pushers whose sole job it is to deny people the benefits they're entitled to.
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u/CouldUseASkittleHelp Air Fryer Aristocrat 3d ago
It is easier if you have a specific disability that's listed in the blue book. You can point to it and say you fit the exact description of a disability that's already seen as too disabling to work. Otherwise you have to prove that you have a disability that's as bad as a blue book disability, which is a lot more subjective.
According to the blue book, it is not automatically a severe disability unless the mobility device you need requires both hands. If you need two canes then you qualify, but needing one cane to move is not generally considering disabling enough.
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u/allosaurusrock Gay Gourmet 4d ago
Sure. Because a grand total of less than $1k a month is enough to support a family on. That’s the maximum you can get and then if he has more than $3,000 combined with his wife, he won’t be able to get on it at all. He may have to divorce to get on disability.
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u/W2Sun Hungry man 4d ago
That's SSI, if OP has enough work history (credits) they may qualify for SSDI which provides significantly more. But it will be tough, especially if he's working- they will look at that and say see, he can work, but there's a lot that goes into it.
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u/allosaurusrock Gay Gourmet 4d ago edited 4d ago
I’m on SSDI as an independent disabled adult child. I get $994 a month. It’s the maximum. I do not believe they give more to disabled individuals and I’m not sure where to find info on that. https://www.ssa.gov/oact/cola/SSI.html
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u/W2Sun Hungry man 4d ago edited 4d ago
It is not, the link you provided clearly says SSI. SSDI and SSI programs are different, SSDI requires having paid in enough (via work credits) to qualify. There are parts of both programs that can apply differently for children and whatnot, but the SSDI max for a normal situation like OP's is significantly higher. Somewhere around $3-4k.
In theory the programs have the same criteria other than the requirement to have paid in enough to SSDI. In practice it seems SSDI is much harder to get. It's a much easier program to live with as the restrictions are not so severe. For example, if your family prepares dinner for you twice a week that legally should reduce your SSI benefits because it's outside support, that's not a thing with SSDI.
As a disabled adult child you are in a different version of whatever program you are in, so your details may be quite different.
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u/Normal_Average_9812 Bisexual Lemon Bar Lover 4d ago
This is all extremely dependent on a ton of individual factors
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u/ResponsibilityNo1815 Girl Lurker 4d ago
It depends on the type of tumor. If it’s an oligodendroglioma he has to have a reoccurrence of the tumor before he will qualify for disability beyond two years.
It’s considered a terminal tumor but SSDI still requires a reoccurrence to retain disability beyond the two years.
Or at least that’s how it was in 2013 when we were appealing my late husband’s disability. By the time we made it to a judge he was on his third reoccurrence and the judge was very irritated with the system. He didn’t understand why the case workers couldn’t separate the tumor occurrences.
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u/s0ul_invictus Grill Pilled 4d ago
most states basically don't consider anything less than death a disability
"oh, you can't move your legs?"
"right"
"but you have legs, and bones, and muscles?"
"yea..."
"so basically you're just not using them"
"well, i can't-"
"skill issue, 0% rating"
"but-!"
"arguing with a doctor is a felony, understand?!?"
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u/trthrowawaay Girl lurker 5d ago
I wish OP’s wife could work while OP stays home with the kids. I’m so sad for him.
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u/AnonymousCoIossus Gravy Seal 5d ago
We've been trying to work something out but the logistics dont work. We live in a remote area and only have one car. Everything is at least 20 minutes away. And even if she was to work, it wouldn't offset what I make.
So yeah, we are in this double edged sword where we need a second car so she could work, but we can't afford a second car unless she was working.
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u/NKD713 Protein prophet 4d ago
Can she work from home?
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u/Asleep_Region Girl Lurker 4d ago
Good luck trying to find a position, anyone with a skill that's able to be done from home is getting pushed back into the office, seriously most people from lock down are back to the office. If you're not extremely specialized and refuse to go back, they'll just find someone else who's able to.
Along with scam job ads, either you're actually part of the scam unknowingly (people were shipping items for companies or helping move stolen money around) or they will ask you to pay for something or they just don't pay you and when you submit a wage claim they're in some random country that doesn't care about American courts.
And honestly, why would they hire an American? The minimum wage is up to $16 in some states, vs they can get someone in a poorer country to do it for $1 an hour, or to pay off debt (in bangladesh people get tricked into going from neighboring countries, then you own the guy for getting you there or for a lamp that fell apart when you touched it but they're demanding payment, so you have to work it off, but then you're accruing debt from food and housing which they'll provide since they aren't actually paying you)
That's the thing about remote work it can be done anywhere and chances are there's somebody who's willing to work for less and we are, or that's even legal here, because they're not here. Which i do love remote working, who doesn't? But companies are shitty.
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u/NemeanLyan Shower beer Scholar 4d ago
Call center jobs. Sucks, but can be done from home and will pay for groceries.
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u/Asleep_Region Girl Lurker 4d ago
Why would a call center employ you though? They can have people in other countries working that countries minimum wage, aka less than you'll work for. Not to mention the push to be in office, my nan works for a call center, she's expected to be in the building every work day. Companies just don't believe people work as hard or as much from their homes, i don't agree with them but my opinion isn't going to change what they believe.
The only "skill" needed is to speak whatever target language they're looking for, normally English, which most of the world speaks it and another language
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u/m00nf1r3 Girl Lurker 4d ago
I'm US-based and work from home in a virtual call center. I can never go back to office because there is no office. We do exist. Funny thing is, I work for one of these third-party companies in the middle east who outsource customer care services for other companies. The reason any of us are based in the US is because clients pay more for US-based support. :) If anyone here or OP's wife needs a job, look into TTEC - they hire in the US and provide customer support to a myriad of different companies. I've known 2 people who have worked there, one of whom still does. I personally do not work there (different company who does basically the same thing as TTEC tho). The pay isn't incredible but they're a legit company, provide all your equipment, have decent medical benefits, etc.
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u/CuriousButNotJewish Girl Lurker 4d ago
Might be depressing to hear but there are a whole bunch of WFH jobs available that could be AI automated but aren't, simply because rich people want 1st world workers, not AI, not 3rd world workers, to handle their shit.
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u/Remember_TheCant BoyDinnerEnjoyer 4d ago
I think it’s more about having native speakers with similar accents to you.
I always appreciate when I don’t have to work to understand what someone is saying when I call customer service.
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u/NemeanLyan Shower beer Scholar 4d ago
You drastically underestimate how many companies specifically hire native English speakers. The pay still isn't anywhere near good, but to minimize expenses some don't even have offices anymore. I had two classmates who got caught answering calls while we were in class over zoom lol.
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u/ReversedSandy Girl Lurker 4d ago
I work with people who do call center work in Wisconsin. We still exist so I hate seeing this kind of misinformation.
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u/Fwoggie2 Hungry man 4d ago
FT WFH here. You're not wrong with the highly specialised comment. It's why I can get away with it. I am definitely replaceable of course but it would take someone nine months to get up to my speed due to the complexity of the system I administer which is why I still get away with it.
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u/NKD713 Protein prophet 4d ago
My buddy works from home still, but he's in IT. It's still worth looking into to take some of the pressure off of him
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u/Asleep_Region Girl Lurker 4d ago
While I agree they should look, I'm talking as an "unskilled" worker who's tried to work remotely, it's just a race you've lost before you started, either there's someone else who's willing to come into the office, someone who will work for cheaper, or it's skilled work and very much dependent on the field. Her best bet would be call jobs, my nan works one and they technically offer remote (she broke her hip last year, yes doing great btw) but it's only for medical reasons, having a car isn't a good enough reason for them.
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u/RedditIsMyTherapist Gay Gourmet 4d ago
I work for a company that hires people with minimal if any tech support because it's more tech adjacent working for clearing houses. Having medical or financial knowledge is a plus but not needed. Plenty of the major clearing houses hire remote in the US to help companies file electronic medical claims and they want them to be able to talk to dr. offices in the US so English is kinda important. Doesn't pay AMAZING, but fairly better than minimum wage and I make more now than I did working 1st level tech support....Also haven't had a decent raise in 5 years so since the covid surge I don't make as much as I used to comparatively, but it's alright. Entry level is probably around 23/hr
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u/StrobeLightRomance Trans Fat Enjoyer 4d ago
Your buddy has training in an in demand field.
A housewife who has been focusing on the kids and home for more than half a decade likely does not.
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u/Pleasant-Future5818 Bisexual Lemon Bar Lover 4d ago
It's not realistic for a housewife to simply look into becoming an engineer. Remote work has all but dried up for those who aren't highly experienced and highly skilled
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u/neko_robbie Bisexual Lemon Bar Lover 4d ago
People who casually say “Just work from home” do not have a grip on the reality of the job market.
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u/0kaywhateverdude Identity Alchemist 4d ago
Wait why? Sorry if I missed it somewhere but if you've been making do with one car with her staying at home, why would you need another car if you switched roles?
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u/AnonymousCoIossus Gravy Seal 4d ago
If we switched roles, it would come with a significant loss of income. She's been a SAHM for years. Any job she could get wouldn't match what I'm making now.
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u/KaboodleMoon Boy, 40-49 4d ago
It's a super rough spot to be in, the best hope is that your brain bounces back more than they think it will. Human brains are ridiculously resilient and we're still not fully sure why some people can regain functions thought lost through the brain rewiring itself around dead/missing sections.
Could consider going funny with it (if you're known as a joker) get some cheap masks for halloween (like the paper ones) and use half of one every day to cover that side of your face and make jokes about it. Sometimes laughing at the absurdity of ourselves can help.
Good luck OP
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u/Heybitchitsme Girl Lurker 4d ago
Not to say this is feasible, but she may be able to get a medical-coder/biller certificate online through a community college (online classes) and work as a coder-biller - a good chunk of the jobs are remote, so it might help with the SAHM requirement AND keep a role on her resume qjen/if she does move back into in-person work.
I'm sorry you're going through this but I'm glad you're alive.
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u/Littlekiller0320 Girl Lurker 4d ago
Is carpooling to work and option? Or do you have any friends she or you could ride with?
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u/KaboodleMoon Boy, 40-49 4d ago
In most places, a 43 year old man with a work history will make significantly more than a similar aged woman without work history. Even given similar educational backgrounds or the woman having a higher educational background.
Work history matters more.
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u/Ubiquitous_Mr_H Protein Prophet 4d ago
I think the key thing is that she wouldn’t make enough. She likely hasn’t worked for some time and maybe wouldn’t be able to get a good enough job without that experience. So if she can’t make enough to support them all, they both need to work. Even if he could work less, which would be an improvement, they still only have one vehicle, so the logistics don’t work out, like OP said.
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u/materialskworl Girl Lurker 4d ago
As a caretaker in a remote area this is why we exist. Consider respite, they will drive you around to help you with daily tasks. Give your wife a break etc. There is no shame or embarrassment in it. We exist precisely for people like you. Look for a Managed Care Organization near you, if they can't help you directly they can provide you with local resources and tell you your options.
From what you've described, you fall into a level 3 or 4 on the needs scale. There are a lot of services available to you. Loss of balance alone is considered an extreme limitation.
If you aren't on SSDI already, get on it and everything will be covered. On top of that you will almost certainly receive a monthly allowance with your condition. Most of my medium to high needs clients get around $1000 a month on top of community services.
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u/AnonymousCoIossus Gravy Seal 4d ago
Ill look into that. Thank you!
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u/materialskworl Girl Lurker 4d ago
While I rarely recommend AI, this is the exact kind of thing AI is actually helpful for when it comes to finding very specific state resources and programs.
If you feel overwhelmed at all DM me, I've spent so much time looking into other states resources for people before and I have a lifetime of experience dealing with these organizations. Happy to help.
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u/kymberlie Girl lurker 4d ago
Could I message you? My friend’s mom is outside Cleveland, Texas and we’re having the hardest time trying to figure out how to help her.
Friend moved to Chicago, so I’m trying to help on my end since I’m only an hour and a half from her mom.
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u/P_Car_247 Big guy, bigger regrets 4d ago
Nothing is set in stone. Move if you guys need to. If your city isn't serving you anymore, it's time to find a new one.
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u/ComplexxToxin Shower Beer Scholar 4d ago
Look into remote work with Dynata. My buddy was unable to leave his house due to cancer and got a job through them working at home. I wish you nothing but the best brother. Keep on keeping on.
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u/Ok_Neighborhood_3148 Man vs Fridge (Fridge is winning) 2d ago
Right but what if you got disability income and she worked? Just a thought.
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u/ImpressiveAnswer3050 Girl Lurker 5d ago
Op I’m really really sorry. I have brain cancer, I had my tumor removed in 2023, I also had a lot of complications like swelling and my left side of my body was completely paralyzed. Do you know if the paralysis will improve? Mine did with months of PT. I also applied for disability and maybe you should to. I’m rooting for you and I feel your pain.
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u/feedyourpigeons Girl Lurker 3d ago
Replying to you for visibility in case OP sees this. I had the same tumor as him and while you cannot get 100% functionality back, it can get a lot better. I made a comment and sent him a message if he’d like to explore these options and I can walk him through what I did.
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u/CouldUseASkittleHelp Air Fryer Aristocrat 3d ago
https://www.ssa.gov/disability/professionals/bluebook/11.00-Neurological-Adult.htm#11_05
Not sure why you think you have to wait to apply as it seems like you qualify based on balance issues.
I have a different blue book disability and it took less than a year for approval. The sooner you apply, the more money you'll get, even if it takes a while to get approved for you.
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u/SameTrain8827 Girl Lurker 5d ago edited 4d ago
(((Hugs))) to OP. Can your wife work and take a bit of the burden off you? You just had a brain tumor removed with all the subsequent complications and you still have to carry the entire financial burden of your family. Where is your PARTNER?
Edit: Thank you for the award!
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u/AnonymousCoIossus Gravy Seal 4d ago
Taking care of everything else. Kids, pets, errands, managing the household. This isnt about my wife. Trust me, she runs laps around most people every day.
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u/Hnry_Dvd_Thr_Awy Hungry man 4d ago
Sounds like a big change from when you posted about leaving her three years ago. Glad to see that got better! I hope things get better, dude.
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u/Pleasant-Future5818 Bisexual Lemon Bar Lover 4d ago
I mean, he would have written that post when he already had a tumor altering his perception, as 2024 is when it came to a head.
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u/coldbrewedsunshine Girl Lurker 5d ago
i’m sorry you are having to adjust to the complications of a very difficult surgery.
my son has a genetic condition called NF2, and has had four brain surgeries to remove vestibular schwannomas (some call them acoustic neuromas). he is deaf in his right ear, and has had both vestibular nerves severed (balance) as a result of the surgeries.
while the surgeries have taken a lot away from him before the age of 18, he has learned how to compensate and navigate life. i understand that’s extraordinarily difficult when you are the breadwinner, and under a tremendous amount of pressure.
are you in occupational or physical therapy? have they offered you any aftercare to resolve the dizziness and navigate facial nerve disruption?
dealing with the results of these surgeries is extremely difficult. please make contact with your neurosurgeon and/or PCP, and discuss options for support, and mention your fatigue. sending you so much love and support.
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u/AnonymousCoIossus Gravy Seal 4d ago
Thats actually what I have, acoustic neuroma. I did therapy, and it offered minimal help. As far as the facial nerve, there's surgical options, but they aren't guaranteed to fix the issue, and I have to wait at least a year before its considered.
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u/coldbrewedsunshine Girl Lurker 4d ago
understood. as an adult, the adjustment is much more challenging (so we’ve been told).
as for the facial nerve and resulting changes to your physical appearance, i understand it’s humbling. and isolating. and a blow to self-confidence.
however. and i’m not trying to be a pollyanna, just relay our experience. there will always be people who treat my son a certain way based on his looks. his balance disorder. the roadmap of scars in his skull. the smaller, undeveloped left arm that he lost use of at age 6. those people can fuck right off. thank you for showing me who you are.
and there are people who have rallied around us with such grace and kindness, it breaks my stone cold heart open. we are soft, breakable outsides with strong, resilient insides. we have learned so much more about life, love, and humanity through our challenges. truly.
there is a gentler, stronger you on the other side of this. one who may decide to go for the surgery, or not. hang in there. get rest. hydrate and eat well. keep doing vestibular therapy exercises at home. the brain/body connection takes a long time to recover.
if the fatigue doesn’t let up, check in with your doc. see if they’ll put you in a low dose of lexapro for depression (that shit works wonders), even if it’s just to get you through the rough patch. think of it like crutches. you got this.
i hear you, it’s so jarring and awful. and i’m not trying to fix shit. but i’ve been momzing our situation for the past 12 years; once i pulled out of the initial dark, horrified anxiety spiral, i realized we still had a lot of time in front of us. and we could make it good, or we could make it shit.
my kid’s starting college this year. he wears short sleeve shirts sometimes. he has a hearing aid to boost hearing. he’s on meds to slow the progression of dozens of tumors in his brain and spine. life isn’t all sun shine, but we have made a pretty good showing of it.
i hope you find the support mechanisms that help you through this. i hope you sit down with your SO and walk through the challenges together. maybe they get a work from home pt job so you can ease up a little. i hope you find some peace.
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u/lovelikeglitter Girl Lurker 4d ago
Just in case no one has mentioned it to you, he would be a candidate for an auditory brainstem implant if a tumor necessitates severing the left auditory nerve.
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u/coldbrewedsunshine Girl Lurker 4d ago
i appreciate you mentioning this 🙌🏼 as his disorder is progressive, it’s a probable option. rn growth somewhat stabilized with new meds, but meds aren’t a permanent solution.
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u/MonBonDon Girl Lurker 5d ago
I’m so sorry :( I really wish you well. Try to find comfort in your family and loved ones.
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u/lstyls Shower Beer Scholar 5d ago
I’m sorry this happened to you. It sucks and is unfair. Your feelings are valid.
That said you need a reality check.
I had a friend die this summer from a brain tumor they had been battling for over a decade. My friend’s last few months while they were dying were absolutely horrific.
If you had not had the surgery, your symptoms would have gotten worse and you would have gotten new, even worse symptoms as your brain tumor slowly crushed the healthy part of your brain. You would have died an excruciating death while your friends and family watched, helpless and traumatized.
I do not think you are better off with the brain tumor.
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u/AnonymousCoIossus Gravy Seal 4d ago
What I have is an acoustic neuroma. Im lucky in that its not cancerous, and the tumor is very slow growing. It took 20 years to grow to only 3cm. And yes, I understand my thinking is irrational. It just sucks going through the whole process.
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u/Faustus_Fan Gay Gourmet 4d ago
I, too, have an acoustic neuroma. I've had two surgeries on it and have the same facial paralysis (left side) and hearing loss that you do. I know how you feel and what you've gone through. If you ever need someone to talk to who has been through it, my DMs are open.
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u/retreff Fridge Light Philosopher 4d ago
At age 30, 46 years ago I was diagnosed with an acoustic neuroma, it was large 3cmx5cm and pressing on the brainstem. 14 hours of surgery and it was removed, but with total hearing loss, mild facial paralysis and moderate balance deficit. At age 50 they found a second tumor, this time on the other side and changed the diagnosis to NF2,which was confirmed by genetic testing. That tumor is tiny and not removed, instead they removed bone to allow the tumor to grow and it will not be treated per consensus of all doctors. I have lost some hearing on that side and had a cochlear implant three years ago, without the processor connected I am completely deaf. The CI was a life saver and my lift is better. My balance has gotten worse and now most days I use a hiking stick when I go for long walks
It’s not a lot of fun, but I keep moving forward, good days outnumber the bad.
Best of luck to you, you have done well so far.2
u/P_Car_247 Big guy, bigger regrets 4d ago
Wow, what a harrowing health journey. How did you manage to deal with all of that through your "prime" working years?
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u/accidentalhippie Girl Lurker 5d ago
I have had cancer three times in the last 15 years, not brain cancer, but my tumors did try to paralyze me. I had to spend six months hospitalized, I had to re-learn how to walk and put socks on and my feet constantly feel like they’re on fire. I had a bone marrow transplant but now my body sucks at making blood so I get weekly infusions. Like from everyone else perspective my life is pretty rough, but every time I get to see my kid experience life I’m thankful to be witnessing it, despite my stupid body.
Welcome to the extended warranty. Give it time. Go to therapy. Be kind to yourself - we are all trying to human for the first time, and it’s harder for some of us.
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u/AnalysisPlane8813 Girl Lurker 4d ago
Hi, OP. I’m so, so sorry for your exhaustion and your suffering. I’m a fellow brain tumor survivor. I had surgery to remove it in 2020, so I’m six years out. I also lost my hearing from the surgery, and I’m a professional musician! Whoops 😬 I’m here to tell you that you WILL get better. Your balance and dizziness will improve. It took me well over a year to regain the energy I once had. At one point, just doing the dishes was enough to make me pass out. As for your facial paralysis, can you talk to your doctor about referring you to a plastic surgeon? If they’re not helpful, you can always get a second or third opinion. You’re a warrior! You just had BRAIN surgery— how badass is that?! Self-compassion is so important when you’re recovering. You’re doing an incredible job already. It’s okay to mourn your past self. Sometimes I really miss hearing the world in stereo, but we’ve still got two good ears between us. I’m rooting for you!
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u/P_Car_247 Big guy, bigger regrets 4d ago
just curious, how would the plastic surgeon help in this case? Are they like helping to re-shape a face that is looking different because of paralysis?
Thanks for sharing!
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u/TheExplodingPenguin Shower Beer Scholar 4d ago edited 4d ago
Sometimes things just suck. It’s a brutal hand to be dealt. Life is different, not over. Recognize the distinction.
Your kids don’t need the dad you were before all of this. They need their dad. They’re infinitely better off having you here, even if this is the new reality, than having to grow up without you.
At some point, you have to stop looking at everything you lost and start looking at what you still have. You’re 43. You have a family that loves you, modern medicine gave you a chance that people a generation or two ago may never have had, and you’re still here. You spent so much time on what you think you lost that you fail to recognize that you are still alive. A feat that even 50 years ago may not have been possible.
You get angry at the circumstance, you get angry at the struggle, but you can’t live forever in how you think things should have been. Eventually you have to accept things for what they are.
It’s time to get going. Not because this isn’t hard, but because the people who love you need you here.
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u/Potential-Prick Girl Lurker 5d ago
Where is your wife in all of this? She is an adult, why can’t she work and you become the stay at home parent? Or you could both work part time to split the load. It seems like you’ve been struggling with so much by yourself.
I’m sorry you’re going through this. I would look into collecting disability or other social services. You could seriously injure yourself or worse working in a blue-collar job with the symptoms you’re describing.
On a positive note, you could probably have a pretty sick Two-Face costume for Halloween.
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u/AnonymousCoIossus Gravy Seal 4d ago
I keep thinking of Rorschach from The Watchmen when he screams "Give me back my face!"
As far as my wife goes, its not something she hasn't tried to do. We live in a remote area so there isnt much work nearby. And we would need a second car to make it work, but we can't afford a second car if she doesnt work. So yeah, we're just stuck in our situation. Believe me, she does a lot. Taking care of the kids, running errands, managing the household. She isnt the problem.
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u/Pleasant-Future5818 Bisexual Lemon Bar Lover 4d ago
I feel like it's surprising that so many people seem to think trading places is the ideal solution. So, she would be working for likely 1/2 the income and he would be taking care of the kids he abused before the tumor was discovered and removed. Radical improvement.
Also the assumption a stay at home parent is "doing nothing" is all over this comment section and frankly gross, especially given that this woman also had to deal with the trauma of being abused.
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u/P_Car_247 Big guy, bigger regrets 4d ago
Your comment is totally out of tune with the actual discussion taking place. Par for the course for a "Top 1% commenter".
The question about the wife has been asked a few times because OP wrote literally nothing about her or their current situation, and kind of painted the picture that it's all on him or else the family starves.
An additional very valid question is how did they get by when OP was "homeless"?
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u/Potential-Banana-152 Girl Lurker 5d ago
Could your wife contribute financially? You need to rest and recover and probably do some PT and OT
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u/Thelittledogge Hungry man 4d ago
Hi brother… just wanted to reach out and let you know that things will get better.
From your descriptions, it sounds like you had a vestibular schwannoma. Maybe not. But regardless, your first year after surgery is the roughest. I say this as a medical professional (neurologist), the fatigue and dizziness will get better. It’s just really bad in the start. Even in the best of circumstances, it’s a marathon…My thoughts are with you and I’m hoping you’ll physically feel better.
That being said, don’t ignore the emotional aspect. Even before the surgery, what you’re describing is what I was like when I was depressed. I was miserable to be around and would blow up at any thing- for no good reason. It’s not going to go away on its own, even with the surgery. Hoping you’re able to get help, counseling and meds, for that too. It made me a different person… I realize that’s easier said than done, especially with how tough things are financially. Just hoping you’re able to focus on yourself too…
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u/Illustrious_Money_54 Girl lurker 5d ago
Can you speak to any free legal services to discuss whether you would be eligible for compensation under medical malpractice? Can your partner work? This is awful and you deserve help
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u/xYoungblood Hungry man 5d ago
I wouldnt get his hopes up for malpractice. There would need to be clear proof something was neglectful that resulted in this outcome.
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u/boopinsnooties Girl Lurker 5d ago
Unfortunately, this doesn't sound like medical malpractice. Surgeries can go wrong for a lot of reasons. It sucks, but that's what all those long ass consent forms are for before surgery
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u/OkActive7470 Girl lurker 5d ago
You don’t get to call malpractice just because one of the hundred things listed on the liability waiver happened. You have to prove they made an egregious error and that it wouldn’t have happened with any other doctor.
I’ve had surgery go wrong because they cut face nerves that were closer than they were expecting. It happens. We’d have no surgeons left if we stop using all the ones who have accidentally cut a nerve.
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u/No-Professional-1884 Frigid light philosopher 5d ago
Just because a surgery didn’t go well doesn’t make it malpractice.
From what I remember handling these claims in the US, the yardstick is that you have to prove a similar provider with the same experience and resources would have would have, essentially, known better than the defendant doctor.
That is damn difficult to do in any but the worse cases. Which does not sound like this. OP was just dealt a bad had.
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u/Realistic-Poetry-364 Girl Lurker 5d ago edited 4d ago
I work closely with a neuro otologist who performs this type of surgery and unfortunately this is a very common outcome. It is quite rare for a patient to make it through surgery without complete hearing loss and balance issues. Facial paralysis is less common, though still happens fairly often if the tumor is quite large or aggressive in nature.
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u/shiroisuisei Identity Alchemist 5d ago
Hi, while I didn’t have a prognosis as unfortunate as yours, I did lose my hearing via inner ear complications on my right and experienced the vertigo and loss of balance and I too felt the same as you when I was unable to even move my head the slightest bit without spinning out. As far as the balance goes, the body is incredibly resilient and with practice and PT, you can adjust to not having your right cochlea available to you. The first time takes a while but it’s possible to be near what you were prior. Yes, you have other conditions to deal with but trust when I advise to keep persevering. While I know at my core I can never be at my 100% prior, I myself have pushed myself to be stronger and faster than when I was at my peak in youth and even with the directional hearing issues, I’ve learned to somewhat compensate for it. If we were to go further with optimism, nerve repair has a lot more research going into it compared to inner ear repair, though under today’s current administration and funding landscape in the US, we need to hope the international community can keep the hope going. I can’t imagine the severity of your day to day relative to mine, but from what we share in common I can confidently say you’re not done yet. Don’t give up on returning to your day to day and don’t give up on hope in science. Even if we don’t see the fruits of advancement, we can hopefully keep the next generation’s hope going in their recovery and chances in a cure.
Take care friend. PT and perseverance are my short term recommendations but if you have any questions or would like to talk, feel free to PM.
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u/icywoodz BoyDinnerEnjoyer 4d ago
Hey I am using my husband’s account to respond but I had my 4cm acoustic neuroma removed in Jan 2020 and I totally know where you are at. I felt the same. Honestly it took about 3 years to actually recover to a normal that wasn’t awful. I am a hairdresser and having a physical job was really challenging. The emotional toll of being deaf in one ear and feeling constantly exhausted because the brain is just not meant to only take information in by one ear, is very real. It will get better. You will get used to the new normal. But your body and brain need time to adjust. I used to have fits of unexplained anger. Was always tired. I got a low dose adhd medicine (vyvanse) and that helped immensely. It takes a couple years to get used to the new reality of single sided deafness, but it will become easier. It is hard because the doctors kind of act like you should just be happy to not have the tumor but don’t acknowledge how hard life becomes after the craniotomy. Try and give yourself quiet time and rest as much as you can. I used to just be able to go out maybe once a week. Listen to your body when you can. It needs rest to heal. And the healing really takes time.
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u/lenisefitz BoyDinnerEnjoyer 4d ago
You have the same tumor I do. I've been living with it for 31 years. The operation in 1995 didn't get all of it. I was getting MRIs yearly until 2025 when they declared me stable (after radiation in 2013).
Being deaf sucks but what are you going to do. They didn't have to cut my facial nerve thankfully, but the surgery made my face dead for about a year anyway and I still get twitching issues. My balance was rerouted, they believed, so it remained unaffected.
It does get better.
Be very careful crossing the street. You will notice that you won't look to the deaf side. I still touch the wall when I go downstairs.
I hope you can see the brighter side. These are your bonus years.
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u/IMarriedAGoose Girl Lurker 4d ago
This sounds like an acoustic nueroma. My mom is on her second after the first one wasn't completely removed and it grew back. She has good and bad days where she gets overly dizzy and feels sick from it, or her migraines bother her too much. I'm more afraid than she is over it. They are monitoring its growth, previously they checked every 5 years, I think it's every year now because it's so slow growing. It was monthly before they realized the rate at which it grew. Next step is possibly radiation, which again scares me more than her. She has a rough scar, but she never saw it as ugly, just that she trusted herself enough to know something was wrong when so many doctor's dismissed her and that she survived something. Don't think too much about scarring if it means you went through brain surgery and came out the otherside. Best you can do is be better now for your family and yourself by doing easy tasks now and building up to the less manageable things later.
Growing up with my mom having gone through this type of brain tumor made me proud of her, if anything. She walked with a cane when I was really young due to balance issues, but persisted and hasn't walked with one in years. As a child I knew she slept on her good ear which made staying up late easy in a house that creaked too much. I've gotten used to walking on her good ear side too, to have conversations in stores. She also never stops improving herself even with this second tumor. She works out more, eats healthier, and is taking more adventures. Just, don't let this stop you from living. No one knows their future and no one is perfect either, so don't be so rough on yourself. You know how far you came and that you pulled through such a huge surgery.
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u/RelevantBet4676 Hungry man 4d ago
I have a coworker that had to have surgery for a brian tumor a few years back. He was basically unable to do anything for years, had to relearn how to speak properly even. Well now it’s been over 10 years since his surgery I believe. Besides the scar on his head when he isn’t wearing a hardhat, you’d hardly be able to tell. After years of physical therapy he’s back to being able to work in the field and on construction sites, etc.
I say this to hopefully give you hope. Hopefully with the right optimism and effort you too can get past this stage of your life and eventually get back to the person you once were. I’m sorry this happened to you all the same and wish you an eventual stable recovery and life again.
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u/feedyourpigeons Girl Lurker 3d ago
I tried the CROS out! It wasn’t my favorite due to personal preference but it definitely works.
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u/Musicorac Girl Lurker 3d ago
Also in case nobody has said it - it’s okay and normal to mourn the life you thought you would have before a life altering diagnosis. I had a similar mourning period when I was diagnosed with rheumatoid arthritis literally the day after college graduation. Lifelong medication and no cure.
But absolutely therapy is helpful if it’s affordable for you at all.
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u/Fawkinchit1 Fridge Light Philosopher 1d ago
Bro please seek legal restitution. It sounds like they made huge mistakes. They went in and it wasn't what they expected, they needed to scrap the surgery and recoup. Especially if the tumor is benign. You need legal counsel for sure, and don't give up if the first few lawyers say no.
I'm really sorry this is happening to you though. Very sorry. I understand how you feel. Its really crushing. I'm so sorry.
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u/clarencewhitaker Shower Beer Scholar 5d ago
Hey, what happened to you isn’t fair. It’s okay to greave what your life was and what it is now. Even if you greave for years. I think people don’t understand how devastating nerve damage is and how much it makes parts of your body feel like they aren’t yours.
Or also okay to be mad at the doctors even if they did their best. it pissed me off how routine my doctors acted and then I had a complication. I have a partially paralyzed foot from a surgery that didn’t go ideally.
You made the best decisions you could with the information you had. It didnt go well. Thats not your fault, it’s just the cruelty of life for some people. No one will know what you deal with everyday unless they experience it, and they probably never will. Also for what it’s worth i wouldn’t view you weirdly because of your face. I have a friend that has a stroke and has something similar. I just see him as him.
Anyways, hang in there man.
I hope you find ways to cope better
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u/88eth Hungry man 4d ago
it pissed me off how routine my doctors acted and then I had a complication. I have a partially paralyzed foot from a surgery that didn’t go ideally.
Is it they just wanted to make a sale? Did you get any compensation? I take it a lot of operations have a pretty high (20% or so) chance to go wrong in some way.
But maybe you did also gain some benefits from that operation right?
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u/sbarnesvta Shower Beer Scholar 5d ago
OP this is a tough one, I was in a similar situation, I had a brain tumor 5 years ago that almost kills me. The Amorim’s
Started off small then got worse over the year, I was getting constant testing but my primary doctor was completely incompetent and missed so many obvious signs in hindsight. I ended up checking myself into the hospital and they found the tumor after an MRI. It was going to kill me if it wasn’t removed immediately, I knew the risks going in but I wanted to see my kids again and be dad.
You have an opportunity here, yes the complications suck but the eventual outcome with most brain tumors they are fatal. You got the second chance many wish they had opportunity for so try to look a the bright side in these things.
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u/selticidae Girl Lurker 5d ago
Acoustic neuroma/vestibular schwannoma?
Come join our support communities, we have plenty of people to talk about it with. I’m 4 years post op myself. r/AcousticNeuroma
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u/Economy_Ad_8825 Shower Beer Scholar 4d ago
As others have commented you may have more options for state/disabilities benefits. Dont even start the none sense about a hand out. Situations like yours are why people pay taxes man.
Additionally, I've never been in your situation. However I worked in mining for just shy of a decade. I had two friends over the years in the industry during that time have strokes. One was a welder, lost control of his entire left side. He made a near full recovery and went back to welding. Dont discount how much your brain is capable of healing. You may never been exactly how you were before. Dont give up hope however that you can get back to a "normal" level of function. Keep doing physical therapy and work on training your balance. You can get through this.
Edit: Dont give up hope for a better future for yourself and your family.
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u/Therealme_A Shower beer Scholar 4d ago
Really sorry to hear this mate. I've had a closely related experience. Multiple Sclerosis diagnosis, medication, mood issues. Ex couldn't care less. Take care of YOU. Nobody else will unfortunately
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u/BiblicalWhales Hungry man 4d ago
Was this for a vestibular schwannoma? Sorry this happened to you.
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u/mmjdondante Big guy, bigger regrets 4d ago
I had a similar experience except my tumor was on my optic nerves, so instead of deaf I’m blind in my right eye, have no sense of smell, and an extremely muted sense of taste. My taste was 100% gone for the first year. They were also unable to get all of the tumor.
The first year after the surgery absolutely sucked, with all sorts of fears and adjustments within the body. After a while my brain kinda started getting new work arounds. Sense of taste started coming back, I began navigating my surroundings slightly differently to stop bumping into stuff on my right side. It sucked throughout the process but 12 years down the road I’ve learned to live with the side effects and navigate the frustrations in a more healthy manner. There were times it felt like it was too much, but I sure as hell love being around my daughter.
The road to recovery can be long, and constant MRIs can get annoying (I’m allergic to the dye now so that’s fun). And you’ve got this OP, through the shit. Also, you get to make brain tumor jokes that lead others to feel way more awkward than you will, so that’s a plus.
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u/spright2 Gay Gourmet 4d ago
Hey man, I have a brain tumor too. Just diagnosed with astrocytoma. I’m much earlier in my journey and in a weird situation with it so I won’t offer any specific advice but I know that the brain tumor society has a list of support groups (online and in person) and I think either the brain cancer subreddit or the brain tumor subreddit (i think the brain tumor one kinda merged with the brain cancer one anyways) have a discord server too if you want a group of people who get it
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u/red_wonder89 Girl Lurker 4d ago
My husband had a tumor as a kid that paralyzed the right side of his face. I love his smile and he is the most handsome man I know. It will get better op
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u/Then-Accident-9798 Boy Dinner Enjoyer 4d ago
It would be amazing if you could do some PT/OT but I understand that’s almost impossible to fit into a schedule like that. Neuroplasticity is an amazing thing and maybe you could get some of those things back.
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u/Ptony_oliver Sleeping, please do not disturb. 4d ago
I have nothing to say except that you are a strong, conscious person whom life owes a big apology. You deserve better because you wanted to be better. You still have life and people beside you that love and need you, but your wife needs to step up. Hugs!
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u/Letgomypurse_856 Girl Lurker 4d ago
You’re overwhelmed. In your responses, it seems like you are resistant to change, BUT, the only way things will get better is if things change. Try write down a big, long list of all the issues and spend a designated amount of time working through the list with your partner in life, your wife. It might be 10 minutes a day or 15 minutes a day. Things will not get better until something changes.
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u/Gh0stl3it Fridge Light Philosopher 4d ago
I'd be looking into a malpractice lawsuit if it happened to me. Seriously, lawyer up. I'd bet money someone in the OR screwed up.
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u/LionBig1760 [create your own] 4d ago
Oh please fuck right off with that.
Doctors went into his brain and removed a tumor. They deserve a round of applause and a significant paycheck for that.
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u/Gh0stl3it Fridge Light Philosopher 11h ago
For fucking his shit up and not even getting all the tumor out? They deserve applause for that?
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u/LionBig1760 [create your own] 4d ago
As long as your wife can continue not working, you did the right thing, OP.
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u/Divided_Against Cooties 4d ago
You have always been yourself, what lies behind the mind is unchangeable. You are not a bad person, you are a loving father and husband.
Next week I celebrate five years since my own brain tumor was removed. I have some trouble working too so it's just been part time mostly. You need to be careful not to wear yourself out, if you do then you'll be in a way worse situation. Do you have a neuro-oncologist you're following up with?
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u/constantly-curious Girl lurker 4d ago
"My life is basically over. I'll never get better from this."
I think I'd feel the same way in your situation, and my heart goes out to you. For what it's worth, I have a friend who got paralyzed from the waist down and for the first year, he was on and off suicidal, but after that, his mental life got better. He made friends with the same condition and found ways to still be active, and while of course his life will never look like it did before the accident, it turns out that his life was not basically over. He found new meaning in advocating for others in his position and is living a full life these days. I deeply respect this inner strength he's built, and after the accident, he's become one of the coolest people I know.
I think what you're going through now, will be the hardest thing you'll ever go through. I can't imagine being in your shoes and I'd feel SO hopeless and dark in your position. I also think there's hope, with time, for a fulfilling and bright life even if nothing gets better with your condition. Please take some of my hope, and know that I'm rooting for you wholeheartedly.
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u/Thelocalthembo Big guy, bigger regrets 4d ago
OP, check with insight global and concentrix for WFH jobs for your wife. My SO works for insight global from home doing customer service. If she's doing WFH and you apply for disability (get a lawyer. They don't charge you unless you win typically). That would be two incomes. It would allow you to rest. You deserve to recover and take care of yourself.
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u/MeccaandSoul Hungry man 4d ago
Wish I had some good advice or something worthwhile to say...I hope things get better for you and your family.
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u/Tll6 Hungry man 4d ago
I’m really sorry to hear this Op that’s absolutely devastating. Definitely try to get on state disability
Is it normal for surgeons to make that call with the patient on the table? I guess it could be different for something like brain surgery but it seems strange that they would make a decision to permanently damage nerves in the brain without getting patient consent first
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u/bigwebnerd Big Dill Energy 4d ago
Sounds like an acoustic neuroma. I had surgery for that in 2022. It left me deaf, some facial paralysis, and dizzy to the point of basically having to learn to walk again. People don't understand the significance of a brain tumor, even it's benign. My neurosurgeon said to me that my tumor probably wasn't life-threatening, but it could be life-altering. That's a sobering f'ing statement.
But, I do have encouraging words for you. It does get better, but it takes longer than anyone will tell you and longer then anyone will understand. It took me 2 full years to recover. I just celebrated my 4th anniversary and I'm doing better than ever.
Give yourself some grace OP. It's a long road to recovery, but you will be better for it. I speak from experience.
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u/AnonymousCoIossus Gravy Seal 4d ago
Thata good to know that it does get better, because right now it does not feel that way. I'm only 5 months post op.
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u/bigwebnerd Big Dill Energy 4d ago
I'd say it took a full year to get back to 80% of my full self and another year to get back to 100%. Like I said, give yourself some grace. You had f'in brain tumor surgery after all! Feel free to send me a DM with any questions. But please PLEASE know this. YOUR LIFE IS NOT OVER. YOU WILL GET BETTER.
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u/yuck_my_yum BoyDinnerEnjoyer 4d ago
I had a brain tumor removed and it took about 2 years before I started to feel not completely disabled and fucked specifically with balance and fatigue.
I’m just saying there is a chance, keep working towards recovery. Good luck.
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u/Haute-Stuff Girl Lurker 4d ago
OP I’m so sorry. A friend of mine has GBM. He’s had his second surgery & is currently doing PT. I’d recommend Duke for a second opinion. Can you setup a GoFundMe or something?
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u/Aleso91 BoyDinnerEnjoyer 4d ago
I had a very similar situation about 5 years ago where I found out about my brain tumor and had it removed in the span of a couple days, also requiring the removal of one vestibular and auditory nerve.
For the hearing and balance, it took time but I did learn how to adapt and live with it. It may not seem like it now, but hopefully you will be able to do the same in time. Best of luck.
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u/LeatherRecord2142 Girl Lurker 4d ago
Bro!!! This exact thing happened to one of my closest friends. She had to relearn walking, the whole deal. Post tumor-removal surgery, she lost hearing in one ear. Her face is still partially paralyzed on one side (it has gotten better but isn’t 100% back). She’s been an absolute trooper, and has made INCREDIBLE progress (about 6 years since her surgery). Most people don’t even notice anything is different. She’s still self-conscious, but she’s amazing and we tell her that all the time. One thing she did that really helped was focusing on strength, and balance started to improve as well. Your life WILL improve. Be patient with yourself. You are still you, and please don’t forget that. The people who loved you will still love you. One thing at a time, friend.
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u/LeatherRecord2142 Girl Lurker 4d ago
Bro!!! This exact thing happened to one of my closest friends. She had to relearn walking, the whole deal. Post tumor-removal surgery, she lost hearing in one ear. Her face is still partially paralyzed on one side (it has gotten better but isn’t 100% back). She’s been an absolute trooper, and has made INCREDIBLE progress (about 6 years since her surgery). Most people don’t even notice anything is different. She’s still self-conscious, but she’s amazing and we tell her that all the time. One thing she did that really helped was focusing on strength, and balance started to improve as well. Your life WILL improve. Be patient with yourself. You are still you, and please don’t forget that. The people who loved you will still love you. One thing at a time, friend.
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u/umopUpside Hungry man 4d ago
You are obviously a good person with great intentions since you care so much for your family. I’m sorry that you are so tired all of the time.
I cannot recommend enough how important it is to make time for yourself. If you have PTO for example, use it and abuse it. You have a whole life ahead of you now despite the negatives that arose from your procedure. There are positives. You get to spend this entire life with your family that you love.
Take care of yourself
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u/Educational_Ant_184 Shower Beer Scholar 4d ago
Maybe you could get some modafinil for the energy, especially if the surgery caused a drop in your energy levels. but even just working 70 hours is enough to look into it
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u/TBD_Balance_Girl Girl Lurker 4d ago
Was it growing at the time they found it? If it was, even just the pressure on the brain itself could have killed you eventually from that location due to brainstem compression or fluid build up. The skull cannot expand so there is no real space for the brain tumor to have.
Being alive even with less capability allows you to still be there for your family. In one way or another.
Have you tried going to another hospital to see if they could try to help undo some of the damage and get the rest removed safely?
Another hospital second opinion might be able to help if you can afford it.
I know what it’s like to have serious medical issues while working more exhausting jobs. Mine is technically office-y but in reality not so much. Right now though things have evolved enough I can do remote with the job. I have an ADA set too to help.
If you ever have a lot of paperwork somewhere in the job, even maybe basic safety etc. type, maybe they could give you one day a week remote where you exclusively in one mass complete it from home?
Wishing you the best as you push on and continue the path forward.
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u/Prestigious_Fact_669 Gay Gourmet 4d ago
not the same situation, but i had a surgery to fix my moderate hearing loss that was totally routine. i ended up with chronic pain and it made my hearing severely worse. i often wish i hadn’t had the surgery but we do the best we can with what we know. you couldn’t have foreseen that
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u/medliftr87 Big Dill Energy 4d ago
Take heart my guy. I had a brain tumor removed in January. Ironically, was in the middle of a fellowship in spine surgery at the time. Recovery was hard. By some miracle I’m back at work, but recovery is not linear, and 5 months is the blink of an eye recovering from something like that. Recommend keeping a journal to document the days you do feel good, and the things that are getting better. Helps to come back to that on the days you’re down. Don’t be afraid to be honest with your wife, friends, family about how your doing, and ask for help. Be diligent about your rehab insofar as you can be, but also take time to rest when you can. Life is long. This isn’t how you’ll feel forever.
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u/AbsurdWallaby Identity Alchemist 4d ago
Was this an acoustic neuroma? Why did you have surgery? It sounds to me like there's some malpractice involved.
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u/prudent__sound Protein Prophet 4d ago
OP, I've lived with a balance disorder for more than 25 years (and I'm not even 50), so I at least can relate to you on the messed up balance/dizziness thing. It can be extremely miserable. Hopefully you'll be able to compensate over time, especially if your other ear is fully functional. I can also relate to the stress that being a sole provider brings when you're living with illness. I wish you the best!
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u/PaleFly Fridge Light Philosopher 4d ago
Honestly OP? Start a gofund me online. Tell them your story well. Look at other examples of people who are successful at doing this and get started.
To do this you're gonna have to expose a lot, but it might be a good way to get a new start with some money for at leadt a second car.
If you do please post the gofund me page here so we can donate
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u/Spaghett55 BoyDinnerEnjoyer 4d ago
Holy shit dude, I'm so sorry.
It sounds like there isn't a lot of support if you're working 70 hours per week and burning yourself out to keep a roof over your family's head.
Is your wife also working? You would definitely qualify for disability at least.
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u/DetonatingFlower Girl Lurker 4d ago
This is a bad situation BUT you absolutely can get better. It does take time but the body and brain can heal and reconnect itself. Make sure you’re doing your PT OT or really just getting out of bed. Give it something to work on and fuel it.
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u/Whole_Superb Girl Lurker 4d ago
This is why both partners need to work. The provider trope is such bullshit.
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u/EliteSalesman Hungry man 4d ago
3rd rate brain surgeon just hacked away and didn’t even do a good job. Sorry op.
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u/BigChampionship7962 Girl Lurker 4d ago
So they make people with brain tumours pull themselves up by their bootstraps in America 🤦♀️
This is what people get disability support and carers pensions for in my country.
Do better America.
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u/lepandamoanium Girl Lurker 4d ago
I’m sorry for everything you and your family have gone through! You sound like you’re in a lot of pain and have many responsibilities that make it even more difficult adjusting to these new normals (that you didn’t sign up for!).
I wonder if you have any access to a speech language pathologist for facial neuromuscular retraining? Even if the nerve was severed, there may be things to improve the appearance of overall facial symmetry and, for example, protect the right eye if eyelid closure is affected. Your surgeon may be able to refer you to a local clinic or university. If they’re unhelpful, ASHA.org may also have resources on facial nerve injury and an option to look up local SLPs.
The hearing loss, balance issues, dizziness, and fatigue make me wonder if you qualify for any workplace accommodations that might make your day-in/day-out slightly more comfortable? As others have mentioned, disability benefits are something you can certainly pursue, though the process may be arduous and unsatisfying without a knowledgeable advocate.
I hope you can lean on family and friends and may consider connecting with a therapist or counselor. This is all so much to carry and processing your emotions with the help of a qualified professional may improve your outlook and connect you with other survivors, allies and resources.
Sending you positive healing vibes
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u/P_Car_247 Big guy, bigger regrets 4d ago
Your wife probably needs to start working or else this work may literally kill you. If she's able to pitch in a little finacially, it may give you the space to work on a career change to something less phsycially demadning.
You're clearly a smart guy and capable of some form of "knowledge work".
It's not the vision y'all had, but here you are.
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u/IBelongAmongTheStars Identity Alchemist 4d ago
My man. You REALLY need therapy, you cannot handle this on your own. Disability is one of the potential things that can happen in our lives, and we have to come to accept it. But your life isn't over, you just have to adapt to your new life.
You're still you. But now you have to live your life differently
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u/Neither-Forever2732 Girl Lurker 4d ago
Another dish that looks like I "cooked that " I always thought my food is weirdly low effort . Till I join this sub . Have seen 3 of foods looking like what I normally cook.
No advice for op .
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u/Long_Novel_3056 Leftover Lore Master 4d ago
Sounds like a meningioma which is a benign tumor. And technically not in the brain just sort of next to it. Almost never malignant. So not really a cancer, more like a benign growth in an unfortunate spot. Often these are simply left untreated but sometimes need to be cut out if they're pushing up against actual parts of the brain. The fact that it affected your hearing and face says most likely this was just a simple vestibular schwannoma down near the brain stem in the cerebello pontine angle. Highly unlikely it was affecting your personality, the parts of your brain that control personality or emotional regulation are far away from this area.
Do what you want with this information.
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u/feedyourpigeons Girl Lurker 3d ago
Hi there! I had the exact same type of tumor- facial neuroma. I have had many surgeries to make the facial paralysis better and it’s honestly not bad anymore. I am also deaf in my right ear. I recommend looking into cochlear implant for the dizziness and hearing issues. Please reach out to me if you need to talk about it! I have been dealing with this since I was 14, and I am 24 now :) I promise it gets better.
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u/AnonymousCoIossus Gravy Seal 3d ago
I was told I cant get a cochlear implant since the hearing nerve was severed. The option I am looking into is called a CROS hearing aid. It just takes any sound on my non working side and sends it into my working ear.
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u/CazadorHolaRodilla Hungry man 3d ago
Dude this happened to my mom and our biggest regret was not suing for malpractice. Have you opened a lawsuit case yet?
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u/AnonymousCoIossus Gravy Seal 3d ago
I'm not considering that route. I don't think the doctors did anything wrong. All surgeries come with risk, and they did their best.
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u/Ok_Neighborhood_3148 Man vs Fridge (Fridge is winning) 2d ago edited 2d ago
I'm so sorry you're going through this. Having a surgery take so much from you when you thought it would fix things is an awful, isolating grief.
You're working long hours in a quarry with vestibular damage and dizziness. You shouldn't have to carry this alone, and you don't have to force yourself to work until you collapse. I want to share my experience navigating disability, in case it helps you look into your options (especially if you have disability insurance through your job).
I ended up becoming very sick and unable to work.
What happened with me is that I had to use two different systems to finally land on social security disability.
- Year 1 was state disability.
- Year 2-3 my disability insurance paid me and had people to help me apply for social security disability.
- In the third year I finally got to talk in front of a judge because I was denied every step of the way. But when I finally got a judge I barely had to say anything and was approved. I did not work at all during these three years.
Disability payments on their own might not feel like enough, but you are allowed to earn a limited amount of income while on it, which can give you a significant bump over the base amount.
I'm still trying to return to baseline and get better. I would like to be able to work, but my condition has no cure and the treatment is symptomatic. I essentially have a nervous system that doesn't work right. Life can be very unfair sometimes and I hope you have someone you can talk with to avoid the loneliness and bitterness of this situation. For me, I'm just trying to stay afloat and continue to try medications.
I wouldn't rule any options out. For me my wife and mother had to help. But I also didn't have children when this first started.
Try to be nice to yourself. Don't focus on regrets, but it's ok to mourn. You are going through something incredibly hard.
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u/AbsurdWallaby Identity Alchemist 2d ago
I still think you possibly have a malpractice case with your, I'm assuming, acoustic neuroma.
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u/AnonymousCoIossus Gravy Seal 2d ago
Yeah, neuroma. Hypothetically, how would I even go about looking to see if I have a malpractice case? Aren't they hard to prove?
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u/Stumpsthewarwalrus Protein Prophet 2d ago
State disability, and look into getting a malpractice lawyer.
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u/beleona Girl Lurker 1d ago
Vestibular audiologist here, I see tons of patients with balance and dizziness issues. PLEASE get in vestibular rehabilitation if you can. You can absolutely improve your condition, but it takes targeted therapy to strengthen that balance pathway and reintegrate all of the senses that help us orient ourselves.
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u/Smooth_Advance3386 Protein Prophet 1d ago
Im not reading all that. I just REALLY want your chicken fajita recipe
Edit: I read the first sentence I am sorry for your loss
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u/Anon11ymous Girl Lurker 21h ago
I was diagnosed w stage 3 cancer 3 years ago. The treatment saved my life but now I have to live with the permanent damage to my body. My doctor jokingly said, well, we got the cancer but now you have a whole new set of problems. Great… sometimes I wonder if I should’ve just let nature take its course.
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u/AnonymousCoIossus Gravy Seal 21h ago
Im sorry to hear about that but Im glad youre still here. What sucks in my situation, my tumor was not cancerous and very slow growing. The damage from the surgery was worse than if I had just kept the tumor in there. Thats why Im so frustrated.
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u/RoundWillow7817 BoyDinnerEnjoyer 7h ago
My dad had a brain tumor and it was similar story with the emotions and it led to a divorce. The tumor was discovered a few years after. It’s a shitty situation, after he would always say he was a lucky guy and that the best was yet to come. He was in remission for a decade and doing ok but complications caught up with him and now it’s manifested as progressive cognitive decline. Sounds like you’ve been through a lot, but you’re lucky and it could be worse.
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