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Pineal Cyst (Page 1)

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I have had constant headaches for over 10 years now and was recently diagnosed with a pineal cyst. The size they measured it to be was 1.3 cm by 8mm. I know this is a bit bigger than what they are normally seen at. I have daily headaches...usually worse at night. Trouble falling asleep and staying asleep, usually do to the headaches that I have at night. I get migraine headaches at least once a week and have some visual disturbances. For example, I can place by hand on my forehead at a right angle with my body and when I look up, I can't see it. I have been put on Midrin, Darvocet, Maxalt, Inderal, Fioricet and anti-inflammatory medications and nothing has worked. I have seen a neurologist who says the cyst is nothing and thinks I am having tension headaches. He put me on an anti-depressant (the name of which I can't remember) that is designed for tension headaches and it did nothing. I was wanting to know when a cyst can cause symptoms such as headaches?
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First Helper mslonestar
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replied April 17th, 2008
Extremely eHealthy
Pineal cysts are benign, fluid filled pockets that are on the pineal gland. They may be asymptomatic and then not treated. When they start to cause problems - headaches, visual changes and hydrocephalus, they can be treated with endoscopy or surgery. Visual field cuts like what you are experiencing are common visual disturbances associated with pineal cysts.

Get a second opinion. You could consult with a neurosurgeon and see what a surgeon has to say. See another neurologist and get their opinion.

These cysts can cause problems so do some further looking into this.
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User Profile
replied May 26th, 2011
Pineal Gland and Fluoride
I have recently become concerned about fluoridation of my water supply. There have been studies with gerbils and fluoride where the fluoride was shown to accumulate in the pineal gland. I recently wrote a paper that may be of use to those with pineal problems @ http://www.wikinut.com/avoid-fluoride-prod ucts-to-awaken-kundalini/cltymu42/14_fotdl /, I hope this helps some people avoid these troubles
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replied April 17th, 2008
Thanks!! I have talked to one neurosurgeon who said I would be very hard pressed to find anyone in the world that would perform surgery on it...even if it is what's causing my headaches.

I just wonder what they consider "too big" and what size it has to be to for them to think it could be causing other issues.
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replied August 10th, 2008
Pineal Cyst..please help
I am curious as to why there are so many folks with Pineal Cysts- who have consulted professionals only to be turned away with claims that these cysts do not cause (headache, forgetfulness, sleep disturbance...) symptoms.
This is a very frustrating situation for me. I have had a daily headache for 2+ months. Too many secondary symptoms to mention. I am unable to function normally. Has anyone received help from a Dr. And if yes, which type of practitioner have you seen. I have consulted with 2 highly acclaimed Neurosurgeons in Manhattan who both felt because no hydrocephalus was present that the cyst was not causing my headache. I am to follow up with regular MRI's to monitor size (Currently, 9mm x 1.6mm).
Please inform me of any similar experience and what follow up you have taken!!!
Thanks in Advance!
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replied August 10th, 2008
Pineal Cyst..please help
I am curious as to why there are so many folks with Pineal Cysts- who have consulted professionals only to be turned away with claims that these cysts do not cause (headache, forgetfulness, sleep disturbance...) symptoms.
This is a very frustrating situation for me. I have had a daily headache for 2+ months. Too many secondary symptoms to mention. I am unable to function normally. Has anyone received help from a Dr. And if yes, which type of practitioner have you seen. I have consulted with 2 highly acclaimed Neurosurgeons in Manhattan who both felt because no hydrocephalus was present that the cyst was not causing my headache. I am to follow up with regular MRI's to monitor size (Currently, 9mm x 1.6mm).
Please inform me of any similar experience and what follow up you have taken!!!
Thanks in Advance!
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replied September 18th, 2008
Pineal Cyst
Hey, i'm only 16 years old, and i have had a Cyst in my buttocks crack(not cool at all, i know) for over a year, and i have had headaches, sore, and sometimes bleeding out of my cyst. I have taken draining baths reguarly and have used clothes to stop it. But during school, i have to sit on hard plasic like chairs and they do not allow me to stand during the classes it really hurts in. mine started out about 1/2 inches wide and about an inch tall. I have taken antibotics at a time, but i can not refill them again. Recently, is has been bleeding alot more, and going through two layers of boxers and sometimes my pants. It's really embarrassing to say this anyway too. plz send me info and some type of treatment or helping tips.
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replied July 10th, 2011
Hurry!
That sounds like a staph infection why not go to an emergency room to get the cyst lanced and drained to make sure the infection is not spreading to your bloodstream. I wish you the best.
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replied March 18th, 2010
Regarding the Pineal Cysts
Regarding the pineal cysts; Just because a hospital or specialist is considered to be good, mistakes can and will be made because of multiple factors. Before you see your next neurologist become informed by looking up professional studies, medical related web-sites, medical dictionaries and such. If you start obtaining a concensus of symptoms reported, make paper copies or a page of web references highlighting your findings. Just because a doctor has trained in neurology doesn't make them an expert in pineal cysts. If they are willing to listen to you and rule out disorders with your similiar symptoms then you have a good doctor. Many disorder have similiar symptoms. Doctors have been taught to look for the horses and not the (rare) zebras. That's one of the reasons that zebra's stay rare. The most common statement is usually stress related disorders. Stress can be involved since chronic pain is stressful. Often a doctor will indicate headpain is a migraine. This may or may not be true, but is there reproduceable evidence they can discover with tests which will show that your symptoms are from migraines or are there tests which might rule out this diagnoisis? Headache pain is a soft symptom meaning it is not distinctinct enough to point to a specific diagnoisis. The combined symptoms give more specific clues and lead to a more likely diagnosis. Best regards and good luck in resolving your symptoms.
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replied June 29th, 2010
My daughterhad a pineal cyst with headaches, dizziness numbness could not sleep or at times think straight, I am an operating room nurse and found it frustrating to have doctor after doctor tell us it was not the pineal cyst but none could tell us what caused her symptoms, we had the usual "shes depressed" or "it's hormonal".
After 2 1/2 years when she had lost her job her home and her independence (she had moved home) we went to LA to Dr sheanian who did an endoscopic craniotomy and removed the cyst. My daugher immediatly improved she felt like she came out of a fog.
I feel sorry for all the people out there seeing dr after dr like we did only to be turned away or made feel it is all your imagination.
We did find she has an elveated melatonin level but no one knows much about that.
Surgery was January 2010 and today my daughter has her life back she is completely symptom free, working moved into an apartment and going to the gym.
Do not give up.
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Users who thank puffer60 for this post: Hannahinpain 

replied May 10th, 2012
pineal cyst
i live in georgia and have aetna; I have a pineal cyst 9.9mmx 7.6 mm x 7.1 mm how does the insurance work if your from another state and what is the out of pocket expense where you out of state
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replied June 22nd, 2012
Help
Can you please tell me what doctor you went to for this. I would love to chat about the surgery. I just got diagnosed with a 10mm x 14mm cyst which I know is very large. Thanks.
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replied August 1st, 2010
8mm pineal nodule
i have seen 3 neurologists,a neurosurgeon,have had shots placed in the nerve behind my left ear through pain management.it has been over a year that i have had a continous headache(from the time i wake until i fall asleep),constant nausea,and occasional vertigo.i am being sent to see another specialist in 3 wks.and am hoping that he might have an answer or treatment for me .i really need some relief from the constant pain.ct and mri show 8mm lesion in pineal region and venous angioma in left cerebellum. some of the replys from you all are very helpful,if anyone has any other helpful responses it would be greatly appreciated!!!
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replied September 16th, 2010
pineal cyst removal
I had a pineal cyst 2.1cm x 1.8cm. I suffered headaches nausea vertigo neurological fogginess. i was told by a couple doctors that my cyst was not causing symptoms.
i went to dr shahinian in LA and 29days ago i had my pineal cyst removed via endoscopic surgery. all of my symptoms are now gone. after 5 very hard years i finally have my life back.
the recovery from the surgery took 2 weeks. i used to take an insane amount of medications to treat the symptoms, and now i take none.
pineal cysts do cause symptoms and it can be removed via endoscopic surgery.
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replied December 7th, 2011
Hi, how is dr. shahinian? i have contacted the skull base institute and am going to call the financial dept. there. does insurance cover this surgery usually? and my cyst is only 5.8mmx 3.9mm. i obviosuly have to do a consultation with him and im worried about the expense of that too. but anyway, how is he as a dr? i wonder why hes the only dr i hear about..why does he just does all these pineal cyst and pineal tumor surgeries. i mean im thankful there is a dr out there doing them of course, but can you see why i question? how many pineal cyst removals has he done? what were the risks and were they high? what is the neurological fogginess you mentioned above? i feel fatigued, not myself, my eyes feel weird, i just feel in another world most of the time... anxious, depressed at this point. its been 6 months of feeling like crap. i get left sided headaches that come on suddenly and last a short time like 20 min or so. they can happen a bunch of times in one day or not for weeks. i get left ear pain sometimes and jaw pain sometimes too. the headaches hurt so bad when they happen and ibuprofen doesnt really help. please write back of you still come on! thank you!
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replied September 24th, 2010
Hoping the best for Dr. Shaninian
I'm in the process of getting my records and a new MRI to send to Dr. Shaninian. I am on disabillity (2 yrs now), but have been a Paralegal for 20. I'm 44, female with a pineal cyst or lesion growing slowly, last was 1cm (their estimate) in 2007. I have daily migraines and once a month they build to a an explosion that lasts for a week. Last week, one continous migrain for 96 hours. It's like a stove, the headache is always there, simmering, then it start's to get hotter, then broil!!! I have had seizures in my sleep since I was 14 and have to take meds, topomax, lamaictal and pheobarbital. I had a total hysterectomy in 2006 thinking that it would take my headaches away. Nope! Then, I was sent to a heart Dr., they found a whole in my heart which did cause a TIA in 2001, and they did a PFO closure which for 80% of some patients it takes their headaches away, Nope, not me. I'm having to believe that my continuing migraines and headpain have to be the damn cyst, even though I have had several Dr.s tell me it's nothing, just keep monitoring it.

Well, I just found Dr. Shaninian's website last week when I was fed up with the 96 hr screaming migraine, and if this Dr. can't help me, I don't know what I'm going to do. I WAN'T MY LIFE BACK!!!!
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replied September 27th, 2010
Pineal Cyst/Dr. Shahinian
I have been reading the above posts for several weeks.

I have a 1.5cm x 0.9cm pineal cyst. I have many of the symptoms commonly seen with pineal cysts. However, the most severe are sleep disturbances that affect my quality of life. Over the last 1.5 years I have heard many of the comments from doctors mentioned above. I have heard everything from it is not symptomatic to maybe I should see a psychiatrist. It is very frustrating to read these message boards and see others having similar symptoms and experiences.

I am currently contemplating sending my records to Dr. Shininian at the Skull Base Institute but I have many concerns. I am concerned about the financial aspect of it and also I have read articles regarding a medical malpractice suit against the doctor on April 09, 2010.

If anyone has any information or experiences to share I would appreciate your input.

Thanks!
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replied April 24th, 2012
There is a reason why he is the only one doing this surgery and you certainly should worry about the financial aspect. Please, note that on the LA Skull Base Institute web site he does not talk about pinal cyst surgery but about pineal tumor surgery. At this point, it is unethical in the neurosurgical field to operate on pineal cyst without evidence of growth or without hydrocephalus. Untyl Dr S publish his results of pineal cyst opration in a peer review neurosurgical journal, this surgery is considered off label.
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replied November 28th, 2010
i'm 5wks post surgery for pineal cyst- headaches, migraines gone
I started having headaches, daily and neck/ear/jaw pain back in May. Went to an ENT, a dentist, a TMJ specialist, back to PCP. In June started getting migraines - about 1-2x a week lasting for hours.
They did MRI in July and found a pineal cyst 1.2x 1.7x1.0. More tests, more meds, doctors telling me I've always had headaches, they were sinus headaches, that the cyst wasn't causing the headaches. Migraines were coming 3-4 times a week - lasting 6 hours or more, I was taking way lots of drugs and not functioning well.

Saw a surgeon at Barrows Neurosurgical in Phoenix (where I live) and she said we should rule out all other possibilities, try different meds. Of course good advice- no one wants a craniotomy right?
My MRI showed no hydrocephalus but mild mass effect on the tectum.

Went back to the ENT, saw endocrinologist, opthalmologist, two neurologists and tried 8 meds. Kept getting worse. September had more MRIs , they showed no growth- so we decided to wait and do another set of MRIs after Christmas and see if we could find meds to control the pain. Was having migrines almost every single day at this point.Also neck, jaw, ear and facial pain, some motion sickness too.

Was taking a ton of pain meds and topomax and imitrex every other day , sinus meds- you name it I took it and nothing was controlling it. Woke with a headache every day, was with me all day, went migraine at night. Was horrible and I'm no wuss when it comes to pain believe me.

I ended up in the ER Oct 18th with a migraine we couldn't stop. I literally cried for hours, two doses of IV meds, stayed in bed a week. Saw the surgeon & she read everything & said all conservative measures failed, she'd do the surgery. So on October 25th I had brain surgery. Posterior fossa craniotomy - so they went in from the back of my skull (which is why I still have my hair) , endoscopic tube up there and pulled out the cyst . And now five weeks later I have no more headaches, migraines, jaw/ear pain. All done. I do have alot of fatigue, some nerve pain which they tell me will go away (sharp stabby pains on the side of my head above and to the side of the incision) but totally worth it. I couldn't function with the headache- was in bed in the dark most nights, couldn't play with my kids, was pretty horrible. But I'm good now.

Was a scary month but have lots to be Thankful for. Great surgeon, great health insurance, supportive friends, family and church. Made it through and can now enjoy Christmas without daily pain. I'm on NO MEDS at all now except my thyroid meds and some melatonin for sleep (pineal gland controls circadian rhythms and sleep/wake cycles and still having sleep issues) and still some neck pain they think probably from scrunching up due to the headaches.

DO not give up. Read on pubmed.com and other published medical journals. http://www.ncbi.nlm.nih.gov/pubmed/1800513 8

Talk to surgeons. Rule out everything else it could possibly be and do not give up. I have complete resolution of symptoms other then the nerve pain which should dissipate with time.

Hope some of this helps
Barb
supersilks @ cox dot net if you want to talk
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replied October 16th, 2011
cyst
I have had headaches for almost 2.5 years now that have grown into migraines. No OTC medicine, ice on my head, or sleep in a dark room will help any longer. I thought I may need glasses so I got my eyes checked but I have 20/20 vision. My Dr. Put me on amitripyline and it didn't work at all it made my head worse. I was recently referred to a neurologist when I had a 76 hr migraine with nausea and vomiting for which I needed two doses of dilaudid just to be able to open my eye and cut the lights on. I had an mri done and it revealed a pineal cyst that the Dr stated is on the larger side that he's normally seen, yet he said the cyst isn't causing my symptoms. He has me on topamax and phenergan both do no good. Along with my migraines (that last from when I wake up to when I fall asleep), I'm always tired my jaw/neck are sore, I get hot flashes, I have a random feeling of euphoria when looking around things just look off., sometimes when walking I feel like I'm going faint and lightheaded, I have constant extreme 10/10 pain and pressure in my head, I feel shaky at times, I have trouble talking times, dizziness, always sick to stomach and vomiting, numbness on right side of face and my migraine get worse at night and wake me up I can never sleep its just getting worse. I have a follow up apt for an mri in Feb but he said noone will do the surgery to remove the cyst. I've read what everyone else has said and I'd love some in put! I am an RN and I cant work like this I am strongly considering finding a Dr that would consider the surgery. I feel as though I'm just getting worse! -v
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replied December 6th, 2011
HI, I too have a pineal cyst. mine's 5.8mm x 3.9mm. ive been trying to find other causes for my symptoms such as anxiety, depression, hormone problems, etc. but im beginning to think it must be my cyst. i suffer from day time fatigue, i have the exact same thing as you where you said when i look around things just seem off...like my eyes arent working properly, especially in bright stores, the hallways at the hospital (im graduating as an RN in 11 days actually!...im terrified of my symptoms effecting my new career and my ability to excel), i get dizzy spells, light headed, left sided headaches..usually come on suddenly and last a short time. can happen once a day, 5x a day, or not for weeks (least frequent symptom now. used to happen alll the time) i also get ear pain and jaw pain. ear pain only on the left. neuro says i have TMJ which i might, but im trying to prioritize here and see the most important drs first. i can only go to so many appts! I have had mri, ct, vng, tcd, tons of bloodwork, only this cyst!! I just got vit d, cmp, and more thyroid blood work done today so we'll see. my thyroid is always fine, but today my gynecologist noticed my thyroid was enlarged while talking to me! So i would love that to be my answer lol. i also got my Mirena IUD out today to see if maybe i was having hormone related side effects. I am afraid it will all lead back to this damn cyst! When i get my tired, weird eye, funky/bizarro feelings it's almost unbareable. it's been happening since july now, so im getting depressed. sometimes its part of the day, other times it has lasted days. once for 3 days straight and i was sick on top of it. it was the worst! I felt like i was on another planet. i was in such an anxious fog. i have a 3 yr old daughter and im terrified of something happening to me. no one seems to care. my drs say it has nothing to do with how i feel. now i havent had a 100% normal feeling day in 6 months! Something is NOT right. i am 23 years old. no history of anything except anxiety. i want my life back. i want to get out of this fog, this depression, this constant thinking about how i feel. the thought of brain surgery is so scary, esp picking a surgeon and money to get there, etc. also the potential complications, but its only been 6 months feeling this way and my life has suffered drastically. i have a horrible left sided headache right now actuualy/ear pain, had jaw pain today and same thing last night. havent had this in a while. its so painful. ibuprofen helped earlier i think. but htey come and go so suddenly that its hard to tell if its the med or just the headache resolving on its own. when these symptoms occur im wondering whats happening in my body...like whats going on the with cyst to trigger symptoms? because while i have some symptoms every day, its not constant and has no pattern...this also leads me away from thinking its hormonal because youd think symtoms would come and go with my cycle, but its not related. my OB/GYN is the only dr who seems interested in this and concerned. it makes me so happy to at least found her to help me. my neuro said see you in march a couple of weeks ago. he doesnt want to even do follow up mris on this! I have a new neurologist on the 21st and a counseling appt. oh and also this cyst was discovered on mri in 2009. i was never told!! got a 2nd mri in july of this summer and got a call that my mri was negative and nothing had changed with my cyst...i was like whatttt cyst??? and she goes oh a pineal gland cyst...it's considered to be a normal variant. and see now by here my headache is gone, but it will be back and painful in like 10 min i bet...its one of those days. ugh!! i think mine tend to happen at night a lot too..ive read many statements like that..im wondering if its like pain related to melatonin secretion...? just a thought...i mean why at night a lot? i also wonder the safety of SSRIs which ive been prescribed with this type of cyst because of the serotonin. I know these are common and i personally know 2 other people that have these cysts, one being the PA who works with my neurologist and says hers in wayy bigger than mine, and they have no symptoms and dont worry at all. but worry wart me cant relax!!! Sorry this is so long. please write back or email me...just put pineal cyst as subject : )
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replied September 28th, 2012
Pineal Cyst Sufferer
Hi there, I know I'm finding your post almost a year later but what I've read in your post is almost identical to what I have been experiencing for the last 2 1/2 years as well. My headaches started in March of 2010, after 2 months of a daily nagging headache, I started mentioning it to my family. We then started the process of going to different doctors to rule things out, ie a chiropractor, dentist, eye doctor, pcp and no one could offer me any insight into what was causing my headaches...my headaches have progressively gotten worse and are now accompanied by nausea/vomiting, severe lethargy, terrible neck pain, black-out spells, sleep disturbances, and faint and lightheadedness. The headaches became so severe last year while I was pregnant with our daughter so I asked my OB to send me to a neurologist in a larger city than the one we live in. I had had an MRI in August of 2010 locally and they "found nothing, everything was normal"! The neurologists started treating me as a "new, stressed out Mom, that suffered from anxiety and depression with an occasional migraine" so I was put on those types of medications! So in June of 2011 I started seeing a different neurologist and they ordered another MRI. I had it done and that's when they discovered I had a Pineal Cyst that was 1.3 cm. Even though the cyst was found, every doctor I've talked to is under the same assumption, the cyst is asymptomatic and is not the cause of all of my other symptoms. I've been in the hospital 12 times in the last 2 years and we are basically at the end of our rope! I am 28 and a stay-at-home wife and mommy to a 3 yr old and 1 yr old (as of tomorrow). I'm in pain EVERY day! I'm on Tramadol and Vicodin currently but it doesn't even touch the pain most days...I'm so tired of doctors looking at me as if I'm just a drug seeker and that I'm making all of this up, simply because it's "over their heads" and out of their expertise! I do not want to be on pain meds for the rest of my life, I simply want the CURE to heal me from the root of these symptoms, not just another pill that will inefficiently cover up the symptom for an hour or two! I've been doing some research and have found Dr. Shahinian at the Skull Base Institute in LA and have sent an email today! I've been very encouraged after reading testimonials of patients that have had the endoscopic surgery that Dr. S. performs in this region of the brain who now have a completely NORMAL and healthy life, the complete opposite of what you, I and so many others are living with! I'm wondering if you've had anything done in the last year since you posted this! Please let me know how you're doing and I will also let you know how this goes on my end! I will be praying for you as well, the strength I've received from the Lord is all I have to get me through on my darkest days...~Heather
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replied November 7th, 2011
pineal cyst
I had an MRI in August in my search for a reason for months of dizziness, nausea, shakiness, head pressure. The MRI showed a 14mm pineal cyst. I was a bit concerned about it but I just had an appointment today with an excellent neurosurgeon here in Toronto. He told me that I was probably born with the cyst and that it would not cause me any problems. He said it's just a harmless defect - kind of like having 1 toe bigger than the other. He also said I shouldn't lose 1 minute of sleep over this. I'm taking his advice! BTW, all my previous symptoms went away after about 3 months. Virus? Anxiety? I don't know but I'm sure glad I'm feeling better.
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replied November 7th, 2011
Mine have been going on for a few years I can barely function mine is almost 2cm and I feel worse daily, I don't even want to get out of bed. I get sick daily atleast 3 times and constant migranes, along with everthing I mentioned above. I'm waiting for a neurosurgeon in Norfolk, va to contact me back in hopes of surgery. my Dr has given me loads of medicine and nothing works. a friend of my mothers is a surgeon and recommended me to the neurosurgeon because he agrees it should be removed. Yes its nothing to worry about until you have horrible symptoms when its big enough it effect you're entire life and keeps you from doing anything. It's almost impossible for me to be a nurse and feel this way. You're lucky. I hope to not have symptoms soon, I need something done.
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replied December 19th, 2012
pineal cyst 9.2mm
hi i live in newport news va i wanted to know whats the neurosurgeon name so i can contact them thank you
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replied November 18th, 2013
Hey there,

Your story resembles mine. It has been two months for me. MRI showed an "asymptomatic" pineal cyst "not to be worried about."
My symptoms come and go. I haven't had any symptoms all weekend. My plan is -- if the symptoms persist or worsen, i will contact the Skull Base Institue and see about removing the cyst via endoscopy.

Have your symptoms returned or remained entirely absent?
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replied November 17th, 2011
WOW, I am in tears reading all of this, I have a 8.0mm cyst that was discovered last week "all of a sudden" I have had 3 CT scan in 2 years and 2 of them in the ER wit "nothing" on them. I have headaches almost everyday, the vision, vertigo issues, the immitrex scared me so bad on Saturday I refuse to take it again. They kept telling me oh you suffer from migraines... Lord help us all.
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replied November 22nd, 2011
well i was diagnosed 3 years ago with a pineal cyst measuring 2.6 cm which is quite large, i have constant headaches,forgetfulness,fatigue and the double vision,i had a vision field test done which was poor and im borderline glaucoma and im only 32,i can now feel the right side of my skull behind my ear swelling and i cannot lie on that side, i have a terrible doctor who doesnt ever want to send you to a specialist but i cannot bear these severe headaches that are constantly there so i am going to have to brave the evil doctor to get in again to see the specialist . wish you all luck its very annoying when these docs say this is nothing.
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replied November 22nd, 2011
well i was diagnosed 3 years ago with a pineal cyst measuring 2.6 cm which is quite large, i have constant headaches,forgetfulness,fatigue and the double vision,i had a vision field test done which was poor and im borderline glaucoma and im only 32,i can now feel the right side of my skull behind my ear swelling and i cannot lie on that side, i have a terrible doctor who doesnt ever want to send you to a specialist but i cannot bear these severe headaches that are constantly there so i am going to have to brave the evil doctor to get in again to see the specialist . wish you all luck its very annoying when these docs say this is nothing.
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replied November 23rd, 2011
Wow Hunnie, I pray that you get some help soon!!!! I too am 32 years old and it seems crazy to have these health issues being so young. I also have tohave a bipsy done on my uterus because it is enlarged.... Just feel so overwhelmed right now.But I have faith that all will be okay. I just joined a group on FB called Pineal Cysts and it seems to be a great support system. My prayers go out to you as well!!!
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replied December 6th, 2011
Wow I hope you get the help you need soon! that behind the ear swelling sounds serious. you def need to forget that dr. and find a/a few new ones. I too have a pineal cyst. mine's 5.8mm x 3.9mm. mines much smaller than yours, but i still have symtoms that could be from the cyst. ive been trying to find other causes for my symptoms such as anxiety, depression, hormone problems, etc. but im beginning to think it must be my cyst. i suffer from day time fatigue, when i look around things just seem off...like my eyes arent working properly, especially in bright stores, the hallways at the hospital (im graduating as an RN in 11 days actually!...im terrified of my symptoms effecting my new career and my ability to excel), i get dizzy spells, light headed, left sided headaches..usually come on suddenly and last a short time. can happen once a day, 5x a day, or not for weeks (least frequent symptom now. used to happen alll the time) i also get ear pain and jaw pain. ear pain only on the left. neuro says i have TMJ which i might, but im trying to prioritize here and see the most important drs first. i can only go to so many appts! I have had mri, ct, vng, tcd, eeg, tons of bloodwork, all fine...only this cyst!! I just got vit.d, cmp, and more thyroid blood work done today so we'll see. my thyroid is always fine, but today my gynecologist noticed my thyroid was enlarged while talking to me! So i would love that to be my answer lol. i also got my Mirena IUD out today to see if maybe i was having hormone related side effects. I am afraid it will all lead back to this damn cyst! When i get my tired, weird eye, funky/bizarro feelings it's almost unbareable. it's been happening since july now, so im getting depressed. sometimes its part of the day, other times it has lasted days. once for 3 days straight and i was sick on top of it. it was the worst! I felt like i was on another planet. i was in such an anxious fog. i have a 3 yr old daughter and im terrified of something happening to me. no one seems to care. my drs say it has nothing to do with how i feel. now i havent had a 100% normal feeling day in 6 months! Something is NOT right. i am 23 years old. no history of anything except anxiety. i want my life back. i want to get out of this fog, this depression, this constant thinking about how i feel. the thought of brain surgery is so scary, esp picking a surgeon and money to get there, etc. also the potential complications, but its only been 6 months feeling this way and my life has suffered drastically. i have a horrible left sided headache right now actuualy/ear pain, had jaw pain today and same thing last night. havent had this in a while. its so painful. ibuprofen helped earlier i think. but htey come and go so suddenly that its hard to tell if its the med or just the headache resolving on its own. when these symptoms occur im wondering whats happening in my body...like whats going on the with cyst to trigger symptoms? because while i have some symptoms every day, its not constant and has no pattern...this also leads me away from thinking its hormonal because youd think symtoms would come and go with my cycle, but its not related. my OB/GYN is the only dr who seems interested in this and concerned. it makes me so happy to at least found her to help me. my neuro said see you in march a couple of weeks ago. he doesnt want to even do follow up mris on this! I have a new neurologist on the 21st and a counseling appt. oh and also this cyst was discovered on mri in 2009. i was never told!! got a 2nd mri in july of this summer and got a call that my mri was negative and nothing had changed with my cyst...i was like whatttt cyst??? and she goes oh a pineal gland cyst...it's considered to be a normal variant. and see now by here my headache is gone, but it will be back and painful in like 10 min i bet...its one of those days. ugh!! i think mine tend to happen at night a lot too..ive read many statements like that..im wondering if its like pain related to melatonin secretion...? just a thought...i mean why at night a lot? i also wonder the safety of SSRIs which ive been prescribed with this type of cyst because of the serotonin. I know these are common and i personally know 2 other people that have these cysts, one being the PA who works with my neurologist and says hers in wayy bigger than mine, and they have no symptoms and dont worry at all. but worry wart me cant relax!!!
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replied December 5th, 2011
I had surgery for my pineal cyst 9/08/11...will be happy to answer questions about my experience.
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replied December 6th, 2011
pineal cyst
Where did you get your surgery done? what size was your cyst? and what were your symptoms? Thanks!
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replied December 7th, 2011
My surgery was done at Memorial Hermann in The Woodlands, TX. The cyst was 2cm x 1.8cm x 1.6cm. My main symptom was a 24x7 headache that nothing helped. The headache was similar to a sinus headache. Felt it in my temples, forhead and behind my eyes. Tired all the time, some weakness.
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replied December 7th, 2011
Thanks for replying! My cyst is only 5.8mm x 3.9mm. i just feel so crappy, definitely depressed. i scarred myself with reading about the sudden deaths that have occurred from them. i had symptoms before reading about that but now theyre more frequent and scare me more. i just feel weird and crappy every day. occasionally i get a painful left sided headache that comes on suddenly and lasts a short time this can happen a few times a day or not for weeks and sometimes an ear ache on that side too. my jaw hurts on occasion too. I also get so fatigued, sometimes so tired i feel confused, im not i know everything but i just feel so wrapped up in how i feel that i cant think clear i guess is how i would describe it., my eyes feel funny when looking around. esp happens when i drive or go to a bright store. i always wear sunglasses. i literally just dotn feel like myself anymore. my life feels depressing. i have mixed emotions and feelings towards things and people and when i get my "attacks" i am sooo irritable. i dont know if this is in any way associated with the cyst. but i think im going to have to try an antidepressant. i am worried about working as an RN because I graduate in 10 days and cant even picture myself excelling as a professional. im only 23 and my life has drastically changed over the past 6 months. the cyst has been here for 2 years and has not changed in size. im going to call my dr and ask about its exact location and if that has changed. i am scarred of surgery and every dr i talk to says theres no way this is the cause they says its anxiety and depression. maybe. but maybe the cyst is causing the anxiety and depression...the serotonin...i need to talk with a dr who has experience and has done research on these cysts. maybe rare cases of the cyst doing this to people. how did your dr feel about the cysts?
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replied December 7th, 2011
At first, my doctor said it should not be the cause of my symptoms BUT he said he would check it again in 6 months. Sure enough, after 6 months, the MRI showed it grew and was close to causing hydrocephalus. 1 week later....surgery.
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replied December 9th, 2011
with your fatigue did you ever feel detached or bizarre/foggy? its hard to explain. just so tired soemtimes. sometimes my eyes feel funny like not working right, sometimes strained, sometimes just so anxious and irritable. im sure this could be anxiety/depression. but i feel fine nerve wise and thought wise most of the time, but i have def been dwelling on this cyst and its potential complications and since reading it has caused sudden death. so i guess obsessing over death for a few months could make anyone feel extra crappy. i have been having these symptoms however much longer than knowing anything about the cyst. i have had the anxiety prior as well, so maybe its just a symptom of being worn out. but i call them my "funks" like i geet trapped in this feeling and can do nothing to stop it. i have no control when it starts or stops. i am really wondering if its something with the melatonin or serotonin from the cyst affecting my pineal gland. not sure but 6 mo. for me is Jan and my dr said he will do no more follow ups cause it hasnt grown at all in 2 years (thats when they found it but i wasnt informed until this summer that it was there!) im going to a new neurologist soon though because i want follow up mris. so did your fatigue eevr make you feel this way?
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replied December 9th, 2011
Hmmmm....I felt worn out mostly because I had headaches everyday with no relief. Just plain tired. For me, there was no ups or downs, it was the same everyday. I would definitely see a different doctor if the current one isn't addressing your concerns. You need to push for an answer to why you feel the way you do. I wouldn't obsess on the cyst though, even though you have one, doesn't mean it is your problem. The size you gave is normal. The one I had was quite large. From the research I have done, it would take a very large cyst to cause death. Usually from hydrocephalus. I know how it feels to try and figure out what is going on when you can't get answers. Keep trying until you find a doctor willing to listen and help figure this out.
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replied December 10th, 2011
Thanks! Yeah i know the hydrocephalus is what causes death usually or sudden intracystic hemorrhage which makes the cyst rapidly expand causing acute hydrocephalus or bleeding into the brain. that thought just scares me because you could just be feeling good then have this happen to you out of no where! It def has increased my anxiety level. I need a new dr to do the follow ups yes so i can be relaxed on the size. Im trying to forget about the cyst and realize i should treat depression and do extensive counseling first. i feel terrible every day lately. I have read that these cysts have been linked to mental/emotional problems, suicide, and schizophrenia but not enough info to directly relate them. Im wondering if that is the case though if thats why my anxiety and depression have gotten worse..and the living in a fog feeling is a direct anxiety symptom..i think they call is bewilderment or dissociation. i just feel so tired and so detached most of the time. You know when you have a cold and you get that spacey feeling? well thats how i feel, but without the cold. it was very intermittent throughout the summer but has been pretty constant now since october. i just am not the same person anymore. i have no fun, i am always worried about why i feel this way, i become obsessed with the fear of dying from this feeling or the cyst, ive got a lot going on right now and i just cant seem to leave the cyst out of this equation. and yes its so frutrating because drs see you for 20 min at a visit, can schedule a test a week later, and so on...i feel like crap until im sleeping...a week is soo long to wait for a test a result and then nothign is ever wrong. i need to feel better now! i wnt to be fun again! and laugh and have a good day! thanks for writing back. I just want this damn cyst gone lol im not the best person to have one cuz im such a worry wart if you couldnt tell : )
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replied February 2nd, 2012
My pineal cyst was discovered in December 2010 and removed in January 2011. The cyst was obstructing an aqueduct causing hydrocephalus. My symptoms included vision problems, loss of coordination and fatigue. Dr. Youseff performed the surgery at Tampa General Hospital. My symptoms were immediately relieved, but it took months for me to recover from the surgery. I was 45 at the time of the surgery and had been very active with daily exercise. I am thankful that chapter of my life is over. I never want to go through that again!
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replied April 2nd, 2012
Please everyone that has/had a pineal cyst go to the facebook page i made!! It is so much easier to message/chat back and forth about our symptoms and any luck we're having with out doctors!! Just type "Pineal cyst" in where you search for people on facebook and like the page! the picture is a mostly blue brain. it's a new page and i really want it to be successful!! we all need to help each other since no one else is helping us!! ~Lindsay
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replied December 7th, 2011
My surgery was done at Memorial Hermann in The Woodlands, TX. The cyst was 2cm x 1.8cm x 1.6cm. My main symptom was a 24x7 headache that nothing helped. The headache was similar to a sinus headache. Felt it in my temples, forhead and behind my eyes. Tired all the time, some weakness.
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replied June 28th, 2012
Could you give me any information regarding the surgery as I had an Mri on Monday and my pineal cyst has increased in size from the last mri done in November and my doc is now referring me to a neurologist who will hopefully say that he will do an operation but I would like to get some information regarding the procedure and the receovery period for same. Could you reply to me Thanks
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replied May 10th, 2013
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replied December 6th, 2011
Where did you get your surgery done? what size was your cyst? and what were your symptoms? Thanks!
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replied February 10th, 2012
Pineal Gland problem or for that matter any illness
Think anyone whom has any Pineal Gland problem or for that matter any illness should do some research on Aluminum and Fluoride poisoning and calcification buildup on the Pineal Gland and what effects it has on our body,

It changed my life, all I did was cut out Fluoride and Aluminum usage and use natural chelation with food consumption. Cost me nothing and others I've recommended, it's changed their lives.
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