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Arachnoid Cyst

Spine Health | Last Active: Mar 7 9:22pm | Replies (234)

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@beewl

Hi Brian & everyone on here,
I’ve a large 10x3x4 arachnoid cyst and a 1.5x1cm pineal. I’ve severe headaches and clusters of severe migraines, visual disturbances, balance issues, nausea, numb limbs when I do sleep, plus more, the nhs (UK) neurologist said treat with propranolol, no further treatment ‘required’! Meds causing reactions and can’t live like this. The neurologist is ignoring my suggestion of surgery as I can’t live like this anymore. My memory and mental health is awful and getting worse. I see so many on here suffering too and just can’t understand why we are not taken seriously. I’ve read research stating surgery for removal is relatively safe these days so why don’t they just remove them & let us all get a quality of life back. I’m fatigued and exhausted, disabled with degenerative back disease and this on top is just horrendous and I’ve occasionally thought what’s the point as I’ve no life but all the above 24/7!
Has anyone had a treatment that works???
Bee

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Replies to "Hi Brian & everyone on here, I’ve a large 10x3x4 arachnoid cyst and a 1.5x1cm pineal...."

I had a crano surgery in 2023. 7.6cm. I've faught 7 years for help since discovery at 2cm. The pressure was too much and the doctor had to close up. Surgery not only failed but made worse. I'm worse now than before. Last scan showed 8cm. 2 month post op already growing. I can feel the hole still from the surgery. I've been placed on hospice now and do feel my time is near this time. Not my first time doctor giving timeliness of expectations. My body gave it to it accepted it. Spend most if days staring at ceiling from my hospital bed. Hospice about comfort and I'm truly blessed have them they are good to me. Reality is no such thing as pain free or anxiety free it's accepting what's tolerable. Other than sedation not ready for that even tho life is hard. Mine is mostly right side but recently has grown to the left. Strange how I can actually feel it. Especially like bending which I know is a no no but I want some independents hard ask for help every single time. My wish is that doctors take these cyst more seriously and act sooner than later. Stop the gaslighting and blame game of something anything but the cyst kinda problem when you know without that cyst you wouldn't have issues. Best of luck to you and all us cysters