How dangerous are pineal cysts

so there is a difference between cyst and tumor.cause my girlfriend (and i just found out)told me she has a tumor on the pineal gland.so now reading this got me all confused ,but im sure she said that its growing and her doctor said that if provoked it can make metastases and kill her very fast.now dont wont to panic and sound scared but i am a lot.can you share more info on your condition and treatment please.best regards

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I'm. It going to write a long story but I have a pineal cyst that was surgically removed and grew back. After 12 brain operations it is now 17mm and growing. 13th surgery is being scheduled. 

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Hello. What happened to you. How are you feeling. Mine has grown 14mm and now stands at 20mm I'm scared to death what might happen. Single mummy to my best little buddy age 2. I worry so much for her. Need some advice thanks

Where did you get the surgery ?

Hi I know your story was from 2006, but how big was your pineal gland cyst, mine is 2.2cm and I have dozens of debilitating symptoms. I was diagnosed @ 21 with epilepsy, scar on anger part front lobal, but suffered most of my childhood with no treatment, had convulsions at 9 months old, with a very high temperature & multiple double teeth coming through @ the same time. 8 years ago my Tegretol was doubled to 400mg X 2 daily, it was increased due to remembering information & more aggressive outbursts? Then I had one massive migraine with a kidney stone pain attack last March 2015, which led them to give me a MRI which showed the cyst then. They sent me to Psychologist & a Psychiatrist for 5 months which did absolutely nothing, but line their pockets with $$$. It was not taken seriously until April 2016 when they said the symptoms now don't have anything to do with Functional Limb Weakness symptoms, my migraines weren't taken seriously for 3 months until June 2015, even though I'd been hospitalised several times with massive headaches, among other symptoms. I wasn't really given any pain relief good enough to fix them unless I was in hospital. I have been on 75mg Amitriptyline since June2015, it doesn't do anything. Ive on Mersyndol since April, total waste of taking it, does nothing. So I basically had to beg my Dr to give me something stronger to help with the constant migraines. I have had migraines or the top of my head volcanoe headaches 10 weeks out of 12, & still with dozens of symptoms. I have 2 eye tests, a dye MRI then an appt. with a neurosurgeon this month. I can't wait for an answer from the Neurosurgeon this month, I haven't been able to work since March2015. I think my symptoms started 8 years ago , then other symptoms 3 years ago, Dr & I thought they were non related, then in March2015 onwards when I had my first migraine that really hasn't gone away since. Thanks, if you read this. So glad your symptoms disappeared, hopefully mine will to soon.

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Ya, mine has one too and he was relatively asymptomatic until recently. Now he can't fall asleep before midnight and has chronic left eye pain. Why are you saying this cannot become a tumor? Are you a doctor? Whether or not you are, there are doctors who disagree with you. There are such thing as benign tumors and anything pressing on the brain in any area should be watched carefully.

Do you mind if I ask what type of surgery you had to remove the cyst and what your symptoms were? I am new to this and my son has one. It hasn't grown in over a 2.5 year time period it is now presenting symptoms.

It's great if the patient has no symptoms, but it is reckless to assume that since the term is cyst and not tumor, and not cancer therefore, that all is well. Anything growing in the brain is NOT ok. This is why people can have seizures and vision and sleeping issues and never know. It can cause blindness and fluid on the brain. It requires a highly specialized brain surgeon, like Skull Base Institute doctors, or Dr. D. Kim in Houston,Tx. Rare conditions are often misdiagnosed or not diagnosed until much damage is done. A person may go years without proper help. I know.

Sometimes doctors are incompetent and their egos won't allow them to refer you to someone that can handle this rare disorder. You need a super specialist like Mayo Clinic, Skull Base Institute, NIH, UCLA Medical Center, and so forth. Go to N.O.R.D. (Nat'l. Organization for Rare Disorders and N.I.H. (Nat'l. Institutes of Health) as they can give you names of surgeons in your area and for goodness sake get a lawyer who works contingency cases and file with a Social Security lawyer for Disability!

To Guest 5/3/2016: I will respond to you. I am a retired Neurology Team Surgical R.N. Also do your own research! Google " NIH info brain cyst" and "Brain Cyst surgeons in USA". It can cause changes in vision, blindness, pressure on the brain with headaches, changes in memory, inability to sleep normally ( sending a child to school with this symptom is torture). It can cause nausea, and in girls disrupt the normal menstrual cycle. Anything which causes pressure in the brain is a problem.

How big was your cyst

I have one that is 5mm do they progress or what im in a different state than where i was diagnosed and that was in WV those Dr.s were rude, would not listen and were short and blunt not helpful AT ALL. At time of diagnoses i was also told i have a rare disease called Arnold Chiari Malformation Type 1. Needless to say im at a stand still due to not having a Dr. at all and fighting for disability and Medicaid if you are unaware of Arnold Chiari i would google before responding so there is an understanding

Thank you

Pineal cyst are tumors, they are in a class of tumors called cyst. Please look up the definition of a tumor, it's a Forein body. Neoplasm is a different form of a tumor. Do some research yourself.

The definition of a tumor is a Forein body. A cyst is a foreign body. People get the wrong idea when these medical terms are thrown around, most are benign. But you do have a tumor. Look up types of tumors and abracadabra.

Do you have a pineal cyst? What size is the cyst that should not be worried about? Are you a doctor?