This is how I feel about my mid-90's chemo. It totally kicked my ass, but between it and a 9.5 hour surgery I no longer have a brain tumor. Worth every minute of hell to still be here.
Man, I needed this today. Last night in the ER I was diagnosed with a rare neurological condition in which I have too much fluid in my skull and it’s pressing against my brain and optic nerves.
The meds they’re putting me on are known to have brutal side events and I’m grieving tonight being able to eat and taste things normally. But, if I don’t treat this, my optic nerves could literally die and make me go blind.
So yes - I believe it will be every minute of hell to see my loved ones’ faces every day ❤️
Hey! I just want to say that IIH is not a rare neurological condition. It’s much more common than you’d think and likely quite underreported. It’s really easy to treat with acetazolamide (fun fact: same medication used to manage altitude sickness) and most people respond to that medication really well. The only side effect I had was fizzy drinks tasted weird/kind of flat. Otherwise, just scans every 6-12 months and ophthalmologist review. It’s honestly a very easy condition to live with, I promise!
Aww thanks for the reassurance! Everyone at the ER kinda spooked me a bit (especially the opthamologist… I just left a comment about my experience including him somewhere on the IIH sub lol) but this is very reassuring.
God that’s awful. They should not have done that. I’m also a healthcare provider and worked in ophthalmology at the time I was diagnosed (lol) which was crazy, and all my colleagues were absolutely not phased by this and neither was I. I had every single test done recommended, including CT and lumbar puncture, USS of eyeball to check for tumour, but in the end I just took the acetazolamide, tapered down after a few months, stayed on it for a few years, totally fine. You will be fine too. I don’t know why the google searches always say it’s rare, I’ve seen it many times and continue to see it. My vision was never affected and the most annoying thing was taking a tablet every day haha.
My very young nephew is currently in hospital undergoing tests because of this - second attempt at a lumbar puncture today. Thank you so much for sharing your experience, this is a scary time and I appreciate the reassurance that hopefully he will be ok
So scary when it’s a young child isn’t it! I’m sorry you’re going through that! Your nephew will be fine I’m sure. The medication is great as long as he’s prescribed the same as what I had, it’s actually an incredibly boring condition lol. Just follow up eye test and scans and taking medication each day. I hope he does have IIH because it’s so benign it’s such a good diagnosis to have!
Hey stranger! My tumor was pressing against my optic nerve. I was extremely lucky because mine was foind early, before I started to lose vision. You've got this!
Yep, me too! It all started when my optometrist noticed a swollen optic nerve when I was just trying to get more contacts. She compared it to my last scans and sent me to the ER when I said it accompanied horrible migraines, whoosing in my ears, and fuzzy vision when I sit and stand. I’ve been ignoring all that for months because I just assumed I don’t drink enough water and I’m reaping what I sow… except on the days I DID drink enough water and saw no difference.
Fortunately they confirmed in the ER my visual field is totally normal, so hopefully it’s only up from here :)
IIH by chance? I also have it. If you have any questions, feel free to DM me. It’s a scary thing to jump into but it’s always good to have some support from someone who understands!
I've only seen it twice from when I did 11.5 years of working at an Opticians doing the Eye Scans and Photographs. The Optometrists would have a busy day when those two occurred and I had more supplementary tests to do for the patient.
But the fact those can be caught by FUNDUS photographs and OCT Scans really drums home how important routine eye tests are.
Some hopefully good news: Our treatment of cancer via chemo and other medication since the 90s has gotten INSANELY good. Much better side effects, comparitively. It will still probably suck and be hard, but hopefully less hard than someone even 20 years ago.
Damn. My mom has secondary brain lesions and she had an epileptic episode. She’s been having medications and WBRT. Now she’s on chemo and the worst thing she said to me is that she has no taste and no sensations in her mouth.
They did a spinal tap to diagnose the pressure of my CSF. The problem is spinal taps will only relieve so much pressure before the fluid builds up again. The meds will slow down the production of CSF in the short term, and in the long term I am to lose 10% of my body weight. If no improvements after both, we will reassess.
I can’t even imagine what 9.5 hours of surgery and chemo must’ve put you through. That kind of hell is hard to wrap my head around, but I completely understand the “worth every minute” part. I’d take the scars and the rough days too if it meant getting more time here. Really glad you’re still here.
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u/heathere3 10h ago
This is how I feel about my mid-90's chemo. It totally kicked my ass, but between it and a 9.5 hour surgery I no longer have a brain tumor. Worth every minute of hell to still be here.