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u/lanelovezyou
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Feb 07 '23
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I successfully had 4 brain tumors removed a few days ago
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u/bootz666
Feb 07 '23
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Congrats! I have a inoperable one and the proton therapy is making my teeth fall out, but I’m too stubborn to die yet! I only have one working eye but I was blessed with two. Keep moving xxoo
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u/mein_liebchen Feb 07 '23
My sibling had a tumor in their lung and around the heart. They had the proton therapy at MD Anderson. The cancer was wiped out and they have been in remission for six years now. Best Wishes.
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u/bootz666 Feb 07 '23
Bless up and peace/love!
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u/oneeighthirish Feb 08 '23
You seem rad. I'm glad you live in a time where such therapies are possible. Whoever your loved ones are, they're lucky to have you.
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u/falonso1987 Feb 08 '23
my kid brother beat cancer and became a pediatric oncology researcher. impossible is nothing. stay up!
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u/BiochemGuitarTurtle Feb 08 '23
I worked at MD Anderson about 4 years, I recommend it to all my family and friends who have been or know someone diagnosed with cancer. Cancer always sucks but MDACC is top notch.
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u/1RedOne Feb 08 '23
I wonder which cancers proton therapy works well for. Do you happen to know if it works for Hodgkins lymphoma in a geriatric patient?
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u/CRM_Ensemble Feb 08 '23
The main advantage is that it is an extremely targeted form of radiation therapy. This makes it very good for treating tumors in delicate areas like the brain or near the spine, where risk of radiation damage to surrounding tissue could be extremely detrimental to the patient. Disclaimer: not a doctor, just someone who has had a brain tumor.
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u/paytonsglove Feb 07 '23
Proton therapy? Sweet. Don't cross the streams. It would be bad.
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u/EddieVW2323 Feb 08 '23
I'm fuzzy on the whole good/bad thing. Whaddya mean bad?
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u/paytonsglove Feb 08 '23
Total protonic reversal. All life as you know it stopping instantaneously and every molecule in your body exploding at the speed of light.
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Feb 08 '23
That's literally how radiation therapy works. They cross all the streams at the point where the cancer is so that one point gets a far higher dose than the rest.
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u/CommitYourself Feb 07 '23
My family member did proton in Jacksonville and had amazing success. I wish you all the best and I hope you have success as well.
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u/Anchovies-and-cheese Feb 08 '23
Dude, way to smile while giving tumors the finger. My son has an optic glioma (fuck nf1) and your positivity gives me hope for some strange reason. Nothing but best wishes from me to you for a successful treatment and recovery.
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u/ChopChopChinaman Feb 07 '23
Keep moving is the best advice! I had an astrocytoma G2 taken out Feb 2022, go to physical therapy and don’t stop moving. I also highly recommend seeing an Integrative doctor to fight the tumor with diet and supplements as well as traditional treatments. You got this bad ass! Stay strong and whatever you do stay the fuck off of Google, keep your questions for your doctors.
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u/havereddit Feb 08 '23
stay the fuck off of Google, keep your questions for your doctors
If only 60% more of the world would do this...
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u/blorbschploble Feb 08 '23
Yeah but that’s after they recommended fighting cancer with diet and supplements, so shrug
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u/Teemoney93 Feb 08 '23
I work in a neuroscience research lab and you'd be amazed how much your diet and metabolism affects the rest of your bodily functions. Vitamins and supplements are in no way the way to treat cancer, but you can definitely aid your body in the process by taking care of it.
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u/sadness_elemental Feb 08 '23
The important part is in addition to medically prescribed treatments not instead of
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u/justherechillinbruh Feb 07 '23
You fucking champion!
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u/buck45osu Feb 07 '23 edited Feb 07 '23
Her = champ
cancer= giant piece of shit
Fuck you cancer. Hell yeah girl. Fuck that horrible disease.
Edit: well I've learned this lady is dealing with something equally ridiculous as cancer. Fuck both of them equally. Both can suck a rear end of a jet engine and hop into a bucket of Kerosene with a blow torch.
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u/ispunken Feb 07 '23
True, but it's not cancer. She (my wife) likely has a de novo mutation meaning some areas of her brain don't produce a protein that effectively tells cells to stop replicating. Resulting in her having at least 12 (well 8 now) tumours on the lining between her brain and skull.
Although awful, these tumours are usually slow growing, and as they are not inside the brain itself, they can be operated on at a much reduced risk of damaging healthy brain tissue. Although there is still a high risk of damaging nerves or the blood flow as the tumours can invade these.
She somehow was "only" experiencing chronic and very painful headaches with some slight vision changes. Considering the largest of the four they removed was the size of a fist, it's incredible that there were no other symptoms before we managed to do something about it. Everytime she told the Doctors and nurses that she was just experiencing headaches, they were always in slight disbelief.
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u/Lost-My-Mind- Feb 08 '23
Wait......you're telling me as far as tumors in the brain go, she's 4 down, 8 to go???
Jesus! And I thought trying to buy a house was hard! Here she is, with fist sized tumors inside her brain, and she's like "Ah, it's just a headache...."
Your wife is a tough woman. Which is good, because I assume those other 8 will still be a tough road ahead. Show her the comments section, and let her know reddit is pulling for her full zero tumor recovery.
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u/MillanPlease1 Feb 07 '23
nf2?
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u/ispunken Feb 07 '23
They think so, but blood tests didn't show anything and awaiting the tumour pathology.
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u/Sircheeze89 Feb 08 '23
We just found out our son has NF type 1 last month. Brain scan showed nothing at this point. He just has a lot of birth marks on his back.
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u/worthlesscommotion Feb 08 '23
I have NF1, as does my teen. She and I both have complications but are living life with zero restrictions. Feel free to pm me if you ever have any questions or need to talk.
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u/cassodragon Feb 07 '23
What a bad ass. Her brain basically grew an extra fist, chronically punched itself all day long, and she barely flinched.
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u/AlpayY Feb 07 '23
The size of a... fist? Jesus, that must have been awful, I'm amazed she didn't experience worse symptoms than the ones you described (which is still awful of course)
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u/Marchello_E Feb 07 '23
Congratulations...You're smiling so that's a good sign.. (is it?)
Anyway, welcome back in the year 2106. As you might have noticed, Reddit is still here.
(I looked up: https://www.reddit.com/r/migraine/comments/zv95e2/mri_results_multiple_tumors_and_suspected_rare/ )
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u/Upvotespoodles Feb 07 '23 edited Feb 08 '23
I had sudden migraine like her, but they thought my tumor was just a shadow on the mri. The migraine became a permanent one, punctuated by confusional states and focal seizures. A few years later, I got diagnosed with autoimmune. I got referred to get another mri. They realized I had a tumor the entire time, which had grown. Then they did some special tumor mri and a board of tumor specialists told me that the tumor is unrelated to the migraine and now I still have permanent migraine, and I have to get my tumor scanned every 6 mos to make sure it doesn’t grow and cause neurological problems, which I already have. When I get the surgery (once the tumor gets big), I have a good chance of losing part of my vision and getting… migraines.
Sorry, it’s never, ever a relevant story anywhere ever.
ETA: Wow. I assumed this comment would be buried. I’m sorry if I don’t answer everyone. It’s like once I vented I suddenly feel mentally fatigued from thinking about it. I will ask my neurologists about the ideas you guys mentioned.
I appreciate you guys.
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Feb 07 '23
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u/0fficiallyanxious Feb 07 '23
With migraines? Can be a migraine aura, would need to see a neurologist to diagnose though.
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u/Grande_Yarbles Feb 07 '23
Do you get a sort of shining light at the same time as you lose the vision? If so then it could be migraines. You should definitely get checked out anyway.
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u/Opening-Ocelot-7535 Feb 08 '23
There are several visual centers, with in the brain. Some centers see the vertical lines, for example, horizontal vision,too.
There was a fellow who couldn't see anything from the horizontal center-line of his visual field, down. People commonly hallucinate in that empty visual field.
There was a fellow being interviewed who said, basicly, "...yeah, I'm hallucinating now!"
He was asked how he knew, he said "I've assuming you don't have cartoon characters sitting on your lap?!"
No kidding!
Edit: I was vague in a couple places. I wanted to correct it.
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u/Marchello_E Feb 07 '23
Relevant to you, and somewhat related to this I guess. I hope that by the time this uninvited guest needs special attention they can zap it away without additional consequences. I don't know how bad it may become, bu it reminds us all that vision is a huge part of our daily lives. To name a two that shouldn't be related yet suddenly are: 1. better think of installing text-to-speech for Reddit, 2. better think of a dedicated spot for all your socks and underwear.
Good luck, hope it turns out ok.
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u/monkey_trumpets Feb 08 '23
Have you ever heard of chiari malformation? https://www.mayoclinic.org/diseases-conditions/chiari-malformation/symptoms-causes/syc-20354010
If your doctors haven't checked for it, it might be worth looking into.
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u/katkatkat2 Feb 08 '23
I understand. Treat all the stuff and still get migraines and have some chronic, issues, permanent brain damage and pain . And I got so freaking lucky to be walking, talking and not blind.
Hugs because some days the crap is too hard to deal with./ I get to use the not a tumor joke and the crush your head jokes
// Interracial hyper tension - seriously thought I was going to die from the pain and stroke like symptoms for a while. /// I was told it was ' stress and anxiety' for 40 fucking years...
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u/smashspete Feb 07 '23
Well for whatever its worth I’m sorry you’re dealing with this and wish you the best in whatever is to come. Some days will be better some day will be worse but remember to always take it one day at a time
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u/jam3s2001 Feb 07 '23
As a chronic migraine/cluster headache sufferer - and hopefully former sinus headache sufferer (just had some dental work done to hopefully fix that), I really hope you find some relief one day. I spent all of last week trying to escape a particularly gnarly one. I'm rooting for you.
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u/qqruu Feb 07 '23
I'm sorry you're going through that. Having gone through sudden, unprovoked changes in my health as well, I feel like I can at least somewhat relate. Our bodies can sucj big time sometimes, but really they are all we have.
How are you dealing with it? Do trees help?
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u/sknnbones Feb 08 '23 edited Feb 08 '23
I've had migraines every few months for... gosh over a decade.
Recently I've been having bouts of lightheadness and dizziness, with neck stiffness/soreness and sore eyes (if I look all the way up/down/left/right or any combination of thoses, the base of my eyes feel very sore)
In and out of ER, Urgent Care, ENT specialists, Ophthalmologists, seen my primary care doctor a few times now, not one has been able to figure out the actual cause... Now I'm wondering if I have some sort of tumor or such. The last time I went to see my primary for it I got sent to Urgent Care because they thought maybe it was a blood clot, but turned out negative for that, and just put me on z-pak (the only thing they found was a mild case of bacterial bronchitis from a chest CT) I have an appointment to see a neurologist but the soonest they could see me is in May so I've just been working like nothing has changed. Its been about 9 weeks now... but the symptoms showed up a year ago for about 3 months before going away suddenly. The ENT specialist thought it was some sort of sinus infection but wouldn't inspect my sinus or throat because of covid restrictions. He also put me on antibiotics which didn't improve anything.
So far I've paid a few thousand dollars out of pocket, and just used up the last of my time off when my primary sent me to urgent care, actually got a warning from work even though I was supposed to take 5 days rest, I only took 4 because I ran out of time off, ended up still missing a few hours AND my insurance is at stake now.
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u/ReadingFromTheShittr Feb 07 '23
Apparently 9 is the record. You gave it a good try, but I'm glad you didn't break it. Hope you're feeling better!
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u/lanelovezyou Feb 07 '23
Well I still have about 9 tumors left in my skull but we’re just gonna watch and wait on them moving forward!
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u/ThoughtGeneral Feb 07 '23
Hoping the scanxiety doesn’t get too hard on you; for now I’m celebrating with you on this amazing success!!!!! All the best to you!
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u/solidshakego Feb 07 '23
Seems like a good idea, if they all move forward might be easier to remover them all through just the forehead.
Good luck on your recovery. I've lost 3 to tumors in my lifetime.
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u/Jankyandcranky Feb 07 '23
Do you know what’s causing them? My best friend dealt with brain tumors his whole life and found out too late it was Wilson’s disease.
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u/notsobold_boulderer Feb 08 '23
How did you even know you had tumors? Honestly it’s something I’m terrified of but I don’t even know how people find them
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u/SlimHazel Feb 07 '23
I had a massive brain tumor removed last May. I, unfortunately, was unable to move my left leg after the surgery as the tumor was wrapped around vessels for my leg. However, after a month on in patient PT and 6 weeks outpatient, I am walking like nothing happened! Just have some stubble where my hair is growing back lol
I wish all the best to you and your road to recovery! Stay strong and use the brain surgery excuse for everything ;)
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u/cookie0228 Feb 07 '23
Im sorry you had to go through that. Can you share how you learned you have tumors? Any obvious signs or symptoms?
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u/ispunken
Feb 07 '23
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Hey! That's my wife! She is doing very well recovering at home. Has a gnarly 7 inch incision covered in staples though. Fortunately, she has had little to no neuro side effects so far and is just dealing with the pain and pressure from the swelling.
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u/lanelovezyou Feb 07 '23
Hello hun 😘
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u/analogkid01 Feb 07 '23
No no no you're doing it all wrong, you're supposed to not remember who he is, push him away, and then fall in love with him all over again after you see all the cutesy shit he does to win you back!
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u/tsukisan Feb 08 '23
If you like piña coladas…
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u/qisope Feb 08 '23
And tumors in your brain...
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u/HobbyWanKenobi Feb 08 '23
If you like getting cut with laser knives
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u/swheels125 Feb 07 '23
This is an adorable interaction during a scary time in your lives. Best wishes to you both and a speedy recovery to OP!
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u/Shoegazer75 Feb 07 '23
Congrats! BTW, you look like Winona Ryder in Lucas in your pic.
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u/k_elo Feb 08 '23
Right ? She looks beautiful post op / lying in bed and probably on some strong meds. I looked like I was half in the coffin after my spine surgery. Granted I barely passed being a Homo sapien so by that she must be stunning after she recovers.
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u/Laiko_Kairen Feb 07 '23
This is a fantastic image of loving your partner "in sickness and in health"
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u/katiecharm Feb 07 '23
Local single guy keeps tabs on upcoming brain tumor surgeries at his local hospital.
Picks out one he fancies.
Shows up in the recovery room.
“Honey!” He exclaims with joy. “You’re finally awake”
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u/disgruntled_pie Feb 08 '23
“You were trying to cross the border? Walked right into that imperial ambush,like us and that thief over there.”
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u/MyOpicVoid Feb 07 '23
Awesome. Take care of her. There isn't another one.
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u/winged_owl Feb 08 '23
Me and the rest of the cloning labs would like a word with you.
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u/DohRayMe Feb 07 '23
She's going to feel like shit. Every moment around her, ie bed, body etc may cause her head her hurt, this will go after a couple of weeks. Quite possibly she may have a fluid bump appear on the wound site, this is common, by all means have it checked out but don't worry. My best wishes to you both.
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u/RGBfoxie Feb 07 '23
Thank you for taking care of her. I heard of a husband that left his wife after she got MS. She's fully functional and working and all, the guy just didn't want to deal with the potential issues.
But really, good on you for being there for her.
May you two have a good, long future together.
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u/zdvet Feb 07 '23
I'm always curious - how were they found/diagnosed? Did you have a lot of symptoms that led you to the doctor?
Good luck on the recovery!
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u/lanelovezyou Feb 07 '23
I started getting migraines out of the blue about a year ago - they started getting worse and I kept complaining to my doctors so they finally ordered an MRI just to rule out any other causes last month.
Well, turns out I had at least 12 tumors, mostly meningiomas, and they suspect I have a rare genetic mutation called Neurofibromatosis Type 2. It’s actually a bit of a miracle that I had no other symptoms outside of headaches. Most people with NF2 have lost their hearing, have vision issues, and seizures by my age.
The good news is I likely have a “mosaic” form of the condition, meaning the mutation is only in some of my cells and not all of them. It essentially means I have a “milder” presentation of it. Even though I have a lot of tumors, they’re actually all on the left side of my brain only and I currently don’t have any spinal tumors. I will likely go deaf in my left ear in the next 10-15 years, and will probably need more brain surgeries over the course of my life but other than that I should be able to live relatively healthily and normally
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u/MikeyN0 Feb 07 '23
Hey, thanks for your story. I also have NF2, brain surgery to remove an acoustic neuroma about 15 years ago. Lost hearing and feeling on left side of my face. Have a tumour in my spinal cord that I will operate in 2 months, and about 7 more tumours in my brain that will be revisited later this year. Watch out for Trigeminal Neuralgia which can happen after some brain surgeries. It is the worst. Welcome to the NF2 club :)
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u/6ravo2ulu Feb 08 '23
My wife has NF2. She's got mosaicism, as well. Two brain surgeries down plus 35 radiation appoints. Spinal cord tumor removal is next. From one NF2 family to another, we're rooting for you and wishing you all the best!
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u/MikeyN0 Feb 08 '23
Mate, thank you. Your wife's condition sounds much worse than mine and knowing how hard it is to have NF2 she is a very strong and brave woman: I wish you and your family the best. You or her might find value in the r/neurofibromatosis subreddit.
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u/PotatoWriter Feb 08 '23
Bro how does this happen, genetics scares the shit outta me. You mean to tell me even if you live healthy lives this can happen to you? ffffffffffff
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u/MikeyN0 Feb 08 '23
Yeah man. It's the roll of the dice of life. I lived a good life; studied hard, worked hard, didn't get into trouble (too much) but none of it matters for genetics. 0 family history of it as well. But it's a curse that can be used as a weapon: to motivate you to do better, enjoy life more and to help others more.
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u/MamaDragon Feb 07 '23
So I should probably get my sudden major increase in migraines checked out. Is that what you're saying?
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u/Lost-My-Mind- Feb 08 '23
Neurofibromatosis Type 2
Jesus! The word wasn't long enough, they had to have multiple types of it??? I'm sitting over here like a kindergartener, when your teacher says "Sound it out", but before she gets upset, calls you an idiot in front of the whole class, and takes up drinking.
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u/tawtaw6 Feb 07 '23
It took me a month to learn to speak again, after I had my one removed. Hope all is good with you going forward.
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u/lanelovezyou Feb 07 '23
I came out chatting it up with the nurses and all my neuro signs healthy so hoping that’s a good sigh moving forward! Hope your healing has gone well 💜
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u/Nedgeh Feb 07 '23 edited Feb 07 '23
Might be time for some self exploration. Maybe you suddenly don't hate sauerkraut anymore? Maybe you're really into ska now? World's your oyster OP. Unless you don't like oysters now, I mean.
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u/Currix Feb 07 '23
Was it a lack of coordination caused by the surgery, or more of a "I literally can't remember how to words"?
Either way I'm glad you could get over that hurdle, and I hope the rest of your recovery went over smoothly!
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u/ispunken Feb 07 '23
They said this could happen to my wife too as the largest tumour that was causing issues was right on her language centre. It is likely due to the brain moving back into the space the tumour was taking up and causing that area to not work completely until it has recovered.
I wasn't sure what to expect but she was talking with relative ease as soon as I saw her in the ICU, which was a very pleasant surprise.
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u/djdeforte Feb 07 '23
Congrats. Don’t freak out about the sound of water sloshing around your head. It goes away in a week or so.
Source: Had a big ass tumor removed, and the sound totally freaked me out. All good now.
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u/1RedOne Feb 08 '23
I feel like we need to know what the water sound is all about
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u/djdeforte Feb 08 '23
So your brain is surrounded by spinal fluid. When they remove a portion of your brain there is an empty void. Sometimes depending on how much was removed it will, over time, fill with spinal fluid as your body replenishes it. In the mean time, depending on where the removal occurred you can hear liquid squashing around.
The tumor was in my occipital lobe so when I laid down it sounded like someone would pour liquid out of a bottle. But like only I could hear it.
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u/notsofxt Feb 08 '23
I... have never heard it sloshing in my head then again I was in an ICU bed for a week after my surgery but I'm also deaf (tumor wrapped around the nerve that does hearing and right side facial control) on the side that had the tumor, and was pretty hopped up on morphine as much as I could that week.
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u/dragsterburn Feb 07 '23 edited Feb 08 '23
Hi young Winona Ryder! Congratulations on the successful operation
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u/lanelovezyou Feb 07 '23
Lol literally my entire life I’ve been told that (and now on Reddit!)
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u/bodhi-r Feb 07 '23
Hell ya! My beau is in the hospital right now recovering in neurology, seeing your smile while hearing what you went through gave me some strength and positivity for my boyfriend's healing process. Sending positive vibes right back at you!
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u/heyimjason Feb 07 '23
Looks like you’ll need to find something else to collect from now on. Glad you’re ok!
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u/Tandgnissle Feb 07 '23
So technically you've lost at least four brain cells!
On a more serious note I'm happy the surgery went well and I hope for a long life with it in remission.
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u/Gigantic_Robot Feb 07 '23
Congrats! I hope the healing process is quick and you can get back to being awesome!
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u/Daisytru Feb 07 '23
I wish you the best of health! FYI, my brother had a glioblastoma nearly 30 years ago. It returned 2 years later. He had two surgeries, chemo and radiation. He is living a beautiful life with his wonderful family. I wish the same for you! ❤️
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u/lanelovezyou Feb 07 '23
That’s amazing for a glioblastoma! Luckily almost all my tumors are meningiomas so they line my brain and aren’t IN my brain.
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u/Byzantine-alchemist Feb 07 '23
Holy shit this is so incredible to read. My SIL had a glioblastoma removed in December and all of the information out there is so fucking bleak. Thank you for sharing this.
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u/binkinc Feb 08 '23
Glioblastoma can be so very cruel, I hope she kicks its ass!!
I was beside my fiance for 3 1/2 years while he fought it. If you have any questions or wanna vent feel free to reach out!
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u/julbull73 Feb 07 '23
They are all roughly the size of grape...
OH THANK GOD....
No, no you didn't let me finish....I was going to say grapefruit.
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u/ispunken Feb 07 '23
Lol, the largest one was about the size of a grapefruit. The others an orange, silver dollar and a quarter.
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u/Fun4-5One Feb 07 '23
Did not shave your head...why?
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u/lanelovezyou Feb 07 '23
They didn’t need to! I had the chief neurosurgeon on the job - I cut my hair off on my own accord for easier management post op
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u/djdeforte Feb 08 '23
When I went in My brothers shaved my head into a mowhawk pre surgery. The surgeon afterwords was like… Uh… Did we do that?.
Was so funny.
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u/PhillyNickel1970 Feb 07 '23
I myself have had 3 craniotomies. I'm so happy that you've come out of this with a smile. There's a lot of pain ahead as your head heals. Don't writhe, it never really helps. You will look back on this time of recovery and know that you're strong enough to endure anything. Good luck!
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u/iMakeEstusFlasks4Fun Feb 07 '23
Getting 4 brain tumors out and still managing to look beautiful, goddamn sister, that's some badass shit right there
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u/K19081985 Feb 08 '23
Suppose that’s better than the alternative, which is to leave them there. Congrats! Keep on kicking ass and cheers to a full and speedy recovery!
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u/JohnOliverismysexgod Feb 08 '23
That's such good news!! Congratulations and speedy recovery to you.
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u/Adudenamedchippyc Feb 08 '23
Good for you, I wish they had the technology today 10 years ago, took out my 33 year old cousin who was a great guy. He will never hear my statement because he is dead :(
I say this because the pain lingers on
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u/kyotejones Feb 08 '23
Ask the doctor to keep them Stick them on pikes throught out the house to remind Cancer what happens when it messes with you.
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u/snap_wilson Feb 07 '23 •
I bet that's a load off your mind. Congrats.