Pineal cyst and various symptoms

There's a group on fb called pineal cyst by a lindsay, you should look it up.. A bunch of us there for support!
I have constant headaches, dizziness, balance issues, and more...dr's (and trust me, I've been to a LOT of them) all say the same thing. They seem to only be concerned that the cyst is benign, not cancerous. Unless it's causing hydrocephalus, they won't admit it could be causing problems. Haven't found one dr that will even CONSIDER the thought of the cyst being the issue. They have however wanted to send me for psych evals and such.. Look up our group on fb, lots of people, lots of support :) & user name at the Y if you can't find us

HELLO MY NAME IS MIRIAM, AND MY DOC SENT ME TO DO AN MRI. THE IMPRESSION WAS STABLE INCIDENTAL PINEAL GLAND CYST AND PARTIALLY EMPTY SELLA, I HAVE HEADACHE, PROBLEMS SLEEPING AND FATIGUE

Find a medical institute equipped with Cyberknife and show your pineal cyst MRI scans and literature to the doctor in charge of Cyberknife operation.

CyberKnife may be the best way for pineal cyst treatment.

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I to have a pineal cyst , my symtoms started just like urs, but i became much worse varrious problems with the rest of my body. Its been 3 years now since the onset i am unable to work of do any of things i did before. i have seen nurmerous doctors and am told every time that the cyst wont do that , even thought my illnesses r very real with no exslpaination. if u have gotton someone to teke u sereously please let me now

    

I have an 8mm cyst on my pineal gland. I suffer from the exact same symptoms, and I just had my gallbladder removed june 28,2012. I'm still suffering from severe headaches. There are times that I can't even get out of bed because of the pain.

Hi, my friend has been dealing with similar symptoms for the past 6 mos-1 yr. She has lost A LOT of weight. She seems to be melting right in front of my eyes. She's lost about 35 lbs in the last year...and that's with forcing herself to eat as much as possible and as many calories as possible. She has frequent headaches...sometimes crippling pain that shoots through the back of her head. She's missed a lot of work because she's been unable to get out of bed due to extreme fatigue and muscle weakness. She also has really bad nausea. She was diagnosed with a pineal cyst over a year ago. After reading all of these posts, I find it very hard to believe it's a coincidence.

HI, Im 18 an was dianosed with a 8 mm cyst last january. I have been healthy all my life except a few haert troubles. My nurse told me to watch for certain symptoms and should they arise to come back to the dr. quickly. I have been having so many symptoms since about june, and they get worse weekly, I cant hardly walk or do anything I feel so weak. and thats just not me, I mess with horses an stuff all the time. I cant lately. I am curious about how the surgery went for you, because if it can make me better, I want it done. -Red

I'm so glad there are others talking about this.  My MRI showed a 7-9 mm pineal cyst.  It was found when I went for an MRI for something strange happening to my left eye. The nueorogolist and neuor surgeon both tell me it has nothing to do with my eye but I think it's too much of a coincidence.  It all started 4 months ago with bad left shoulderblade pain which grew into my pinky and ring finger twitching and elbow pain.  I was diagnoised with cubital tunnel syndrome (not carpal).  Then my left eye started to just dialate (to the size of my iris) and the whole eyeball and eyelid would just enlarge.  This only happened when I would get the tingling in my left arm from the cubital tunnel.  I would stand up and walk it off (I only get the tingling when I'm say at a desk typing or if my elbows are on the table) and my eye would go back to normal after 30 seconds to a minute.  It really freaks people out, LOL.  Looks like I have one eye just bugged out.  Anyhow, my doctor of course said that isn't normal and sent me to the opthomologist who said my vision is fine and his guess is I have something called silent migraines.  He recommended a neurologist who send me for an mri and mra of my head and left eye.  That's when they found the cyst. Of course I questioned the connection but after reading about pineal cysts how can they completely rule it out?  They said the optic nerve and ulner nerve are not connected (ulner nerve is your funny bone basically, that's what you hit when it hurts, that's the nerve that causes cubital tunnel).  They did say in a round about way they may be both connected to your neck.  Meaning the MRI of my neck that showed a slight protrusion of disc c4 and c5 could be causing the silent migraines which are affecting my eye and could be putting pressure on the ulner nerve causing my arm tingles.  But this cyst now has me wondering.  Maybe even though it's not as big as some other peoples it can be putting pressure on something.  I just am so confused and don't know who to talk to or what to ask anymore.  I hope you are all feeling well now since I'm seeing your posts are old. 

Hello Kim , I have a 9mm pineal cyst and it is causeing many symtoms . i have been to numerous doctors all telling me my cyst had nothing to do with all my symtoms , but no other answer on what was . i finally found the only place in the us that takes these sereously , and r knowledgeable. 

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Hi Jessica, I go see a neurosurgeon tomorrow & I fear he will say like all of these other post have stated their doctors have said. "nothing to worry about" & that my "symptoms aren't related to my cyst". Although they are the exact same symptoms listed by so many on this site. Your post was "edited by a moderator" & they took off the "private phone number" you noted. Would you please email me with this information. I am my son's only responsible & capable parent. His dad is a worthless addict & I fear something will happen to me, & he will be stuck being raised by that animal. Please help! Thanks so much for your post & Good luck & God Bless!!! My 

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your symptoms and mine match so I'm glad to hear that I am not crazy or just lazy. The fatigue is horrible. also want you to know that I had what the docs think may have been a TIA. but now that I know about my pineal cyst, and the sympotoms this ca cause I believe it is the cyst that caused my "TIA" learning more every day. Please post update from endocrinologist. thanks

I was just today diagnosed with this pineal cyst. I have horrible headaches, hot & cold spells and within a year my vission has gotten bad. I also have chronic fatigue. I've been told I have lyme disease, spinal degeneration, ra & fibro milasia sorry for my spelling. I am wondering if these things could all be linked to the lyme in some way

My cyst  ayear ago was 1cm I am awaiting the results on my second scan. I can the dull, dizzy, hungover type feeling all thetime with fatigue but what concerns me the most is my speech. I randomly say things in sentences that I'm fully aware of which is so frustrating. It's like I know what I want say but I ll slur it or notget my words out right. Does anyone else not get this? The rest of my brain has come back normal 

Hi there:

 

I am a pineal cyst patient (10mm x 9mm x6mm) with the following symptoms: headaches, somewhat lose balance, difficult to walk while wake up,  head numbness sometimes, eye pain while looking upward (it is gone after taking steroid), and shaky body.

Did anyone of you experience "positional headache".  The headaches is smoothed about 20 minutes after lying down but it will come back within a few minutes after standing up.   If you have such symptoms, please reply to me. Thanks

 

Kennyjou2003

I was searching about pineal cyst and able to hear your stories, just recently had MRI yesterday I have a constant left side headache for more than a month, this is the result** FINDINGS **:No definite intracranial hemorrhage. No mass effect or midlineshift. Ventricles are normal in size. Gray-white matterdifferentiation is intact. No acute infarction. Incidental note is made of a pineal gland cyst measuring 6 mm. Fluid scattered inbilateral ethmoid sinuses. Mild mucosal thickening in frontal,ethmoid, sphenoid, and maxillary sinuses. Bilateral mastoids areaerated. Mild motion is present.** IMPRESSION **:1. Grossly normal brain.2. Paranasal sinusitis.

My doctor will treat me for antibiotic for the sinusitis might relieve the headache, but not concern about the 6 mm pineal gland cyst, she said, A pineal gland cyst is a benign cyst in the pineal gland, which is a small endocrine gland in the brain.

would love to hear if anyone been treated for it ... I'm a guest, you can call me Aki

Thanks