Arachnoid Cyst

my husband has it on the brain and neck if he turns his head to quick there is times he will fall or feel like he gonna pass out we found out he had these back in july because he was having so much pain it was from the middle of his head and it would go to his eye then the er dr said it was muscle spasms he didnt even want to do anything other than give him muscle relaxers and pain pills we went to the dr the following tue and she said there was some kind of spots so they did an mri and found those cyst they are only 2x 3.5x2.5 undulating cyst mass following csf it in theleft middle crainal fossa . he has so many systoms that it isnt funny

good luck trying to get into Barnes they kept giving us the go around we never got into them

Hi I have the same thing a brain cyst arachnoid was having numbness and tingling lots pain fatigue feel sick daily ears ringing and visual disturbances. But dr not worried about it. I am worried about it. I am only feeling worse but seems like they dont wamt to do anything. I am afraid it will either grow or burst or I'll get more. How are you managing? I wish there was more information and help for arachnoid brain cysts and I wish we could get help and answers

Welcome @snuggles45 and @nestlechocolatebar, I can't begin to imagine how difficult it must be to deal with all of the symptoms and worry about the future when you have an arachnoid cyst. There is some information you might find helpful on the National Organization on Rare Disorders (NORD) site here: https://rarediseases.org/rare-diseases/arachnoid-cysts/.

@jeep and @kyoto may have some experience or thoughts they can share on managing or treatment options for arachnoid cysts.

@snuggles45 - You mentioned not being able to get into Barnes in St. Louis, MO. Have you thought about seeking help at a Mayo Clinic Care Network member that might be close to you? Here is a map with locations of members - https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members.

@nestlechocolatebar - Have you thought about getting a second opinion or seeking help at a teaching hospital or major health facility like Mayo Clinic?

@snuggles45 - You mentioned not being able to get into Barnes in St. Louis, MO. Have you thought about seeking help at a Mayo Clinic Care Network member that might be close to you? Here is a map with locations of members - https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members.

@nestlechocolatebar - Have you thought about getting a second opinion or seeking help at a teaching hospital or major health facility like Mayo Clinic?

I would be glad to share my experiences. In my case, the arachnoid cyst (of the velum interpositum) came to light six years ago. It was due to the dramatic effect the presence of the cyst was having on my memory function. This has remained an issue even after my successful surgery. Now this is managed by medication. If this is close to your experience, I would be glad to share it with you.

Thank you for the article link. Unfortunately I dont live in the United states so wouldnt be able to go to the mayo clinic but I do want to ask to see a neurologist and perhaps get another mri. Its hard as doctor not worried, which is good news however the Articles I've read said arcanoid cyst in the brain can grow in size and can cause rupture or bleed and I also read an article that said there's a possibility of brain damage I'm having so many terrible neurological symptoms numbness and tingling pain brain fog difficulty learning information difficulty retaining information weakness and many more my doctor feels that this has nothing to do with the brain cyst I am not a doctor I trust and value the doctor's opinion but I have multiple concerns and I hope that it can get investigated further because maybe the symptoms I'm having are from the brain cyst I don't like when things are ruled out without investigation I appreciate so much you taking the time to send me the article link it's nice to know that there are others perhaps going through the same thing but I wish that wasn't the case I'm hoping anybody here that has a brain cyst gets the help that they need and please keep me updated

I have a cyst too. No help if it’s Causing my issue

what your describing I was diagnosed years ago when finally getting imaging for ESS, miasma fault and cysts, took me nine months to get them to understand my dehydration issues weren't in my mind, but in my head, along with other issues, pulsatory tinnitus, foot cramps and nerve pains wake me every 1.5 hrs, trying to get other issues under diagnostic accuracy but need to focus more on this, bone pains in shin bones and forearms feels like a toothache and mech manipulation does nothing, and nerve pains pinching twisting sensations in various parts of legs arms and chest, am on 2400mg neurontin and been on it for years, tried tapering off a few of years ago and this really started up, Dr said n/muscler so I hit the local hills 5 days in a row, sent her pics each day of the hills I climbed, only decision was back on the neurontin, but now the last couple years , especially after C19 Vacc and booster 1, moderna, refused booster 2, went nuts on me also after shingles booster for 2 days, just had c19 omicron and nothing worse than feeling like a cold, but vision, hearing, sensation in fingertips, vibrations and electricity feelings in hands and feet, side pain left just under rip cage, smell locks in certain odors, especially petrochemical, 1st time lasted 3+ months, sucked on black licorice taffy to offset the phantom odors, and on and on and on, should post this to general malaise comments I guess, lol D.mg still smiling still Praying up to my Maker, Deacon Mitch,

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

Hi are you in the UK?