Pineal cyst and various symptoms

Abbygirl, I was just diagnosed with a 2.1 cm pineal gland cyst. I have been struggling with headaches, fatigue, hand numbness, dizziness and periodic nausea. I feel like I am floating sometimes and driving seems like an out of body experience. Dr. has referred me to a neurologist and scheduled me for a follow-up MRI in 3-6 months. Can you tell me the size of your cyst and the Dr. you used in NY. Can you tell me more about the surgery and the road to recovery and any side effects of your surgery?

Earl had his 2cm x 1 cm pineal cyst removed in Jan 2013. Neurologist @ Dr. Tang's office visited TOSH 5 days post op and discontinued steroid which is given to control brain swelling and prevent meningitis. Earl contracted meningitis and then was diagnosed with hydrocephalus and then had a shunt placed and then started having tonic clonic seizures. Earl cannot walk, can barely talk only saying yes or no, cannot feed himself, sit up alone, roll over in bed, etc.

Go to see Dr Shahinian at the Skull Base Institute in LA. He can remove it endoscopically

Dr. Dong Kim. A neurosurgeon in the Texas Medical Center. Very, very nice man and an awesome surgeon.

How big wass your cyst?

So can you tell us if you have had any thing done about the Pineal cyst? yet please let us know

None of you are crazy.  Pineal cysts DO cause issues but good luck getting someone in the medical profession to help or acknowledge it.  Dr. Dong Kim, a neurosurgeon in Houston, TX believes us and operates.  People get better.  I'm checking into surgery now. Good luck everyone.

As well does Dr. Shahinian at the Skull Base Institute in Los Angeles, CA.

Who was the neurosurgeon?

Hi there! Im Paige, I live in Myrtle Beach, South Carolina. I was diagnosed with a 6mm pineal cyst on my pituitary gland in the 7th grade. It was found by mistake because the doctor noticed one of my pupils were larger than the other and conisdering I was there becasue of fainting smells it concerned her. They rushed me off to MRI's for what seemed like ages.. 45minutes with and without contrast.. blah blah. The cyst eventually grew to 8mm in 2004 and the walls of the thing had "thickened".

Not long after this report it was all stopped? Cant even remember why now. Anyways, I have been having MAJOR issues trying to live a normal life. I stay hot all the time, I get extremely super tired, my body aches constantly, my head will hurt to the point of nausea, I have developed this random severe case of anxiety, and my hands and feet go numb for no apparent reason.

The doctor has just ordered me back to the neurologist and it wasnt until she informed me that I connected all these dots to my "thing in my brain" as I call it :) but I am just praying to the fullest extent that this thing has not become very large, but mostly that they can make these terrible symptoms go away. I never realized there were so many others like myself, however.. These doctors can not dare to say after ALL OF THESE EXACT symptoms from so many complete strangers that these "cysts" do not cause symptoms. Its BS, and Im not standing for it this time just becasue they do not feel it necessary to waste time treating.

This is Kim who wrote earlier about the cyst and my cubital tunnel.  My neuro surgeon said that in 6 months he wanted me to have another MRI to see if the cyst is growing or if maybe it was something I was born with.  Cigna denied another MRI and said I had to wait a year.  well last October was one year.  It hasn't changed. It's still 9mm.  Here is the funny thing.  My eye stopped doing that wierd thing of enlarging and dialating the same time my fingers stopped twitching.  Now I know that the optic nerve a the nerve that affects my cubital tunnel aren't connected but you can't tell me that it's just a coincidence that they both started and stopped the same time.  I went to a new neuro surgeon to have my MRI read and he said not to worry about the cyst but he was very curious about my eye and arm thing and agreed that that seems like a strange coindcidence.  He said to come to him if it happens again.  I almost wish it would so I can figure this out.  

I would love to hear an update! I am having all very similar issues~my pineal cyst is 1.4x1.6cm. Thank yoU!

neurodotmemorialhermanndotorg/conditions-treatments/advanced-treatment-of-pineal-cysts/

Did you have surgery at the Mayo?

You pretty much just told my story. Everybody says "pineal cysts are benign, they don't cause these symptoms." it's very very frustrating. mine is 1.8cm and was found almost 2 years ago. I've seen every kind of doctor money can buy. I cannot wait for these MDs to get a freakin clue!