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Pineal Gland Cysts

Updated on October 19, 2011

PIneal Gland Cysts -- Symptoms and Treatment

Despite popular medical literature that claims pineal gland cysts are "incidental" findings on MRIs and generally cause no problems, if you have one that is symptomatic, you have come to the right place.

Pineal gland disorders, in my limited experience, can and do cause symptoms and can wreak havoc on your life. Many people are told by doctors that it's all in their heads and there is nothing they can do.

You are not alone, and you are not going crazy.

In this trio of articles, you can read an overview about cysts here, my thoughts about the standard medical protocol, and a journal of my pineal gland cyst progress with an experimental, possible treatment plan.

The Squatter in My Brain

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This is my brain. The whitish, almost circular blob in the very middle of the image is my pineal gland cyst. This is my squatter, as I tend to think of it. While I thought of giving my squatter a name, I don't want it having that much identity. I want it to go away.

What is a Pineal Gland Cyst?

A pineal gland cyst is a fluid-filled mass or body in the pineal gland. The pineal gland is a small endocrine gland approximately 5-8mm in size in the very center of the brain. It is not technically part of the brain because it sits outside the blood-brain barrier.

Literature states they show up in 21-41% of autopsies. To me that sounds like a large range, and I have not yet been able to find out how that figure has been determined. Historically they showed up in 1-4% of brain images, although one 2007 study found a frequency rate of 23%. Most of these cysts are small, ranging 2-3mm and are asymptomatic.

Large pineal gland cysts are defined by the National Organization of Rare Disorders (NORD) as "rare findings." Large pineal cysts, as defined by the NORD, are over 5mm in diameter. Most neurolgoists will never see one over 1 cm.

What Are the Symptoms of a Pineal Gland Cyst?

Symptoms are fairly wide and varied. A core list of established medical symptoms include:

headache

hydrocephalus

nausea and vomiting

visual problems

light sensitivity

lack of muscle coordination

lethargy

vertigo

sleep problems

coma

In addition to the above, there are also some core anecdotal symptoms derived from forums with people with pineal gland cysts:

fatigue

tremors

migraine

emotional instability

motion sickness

TMJ pain

numbness

food sensitivities

face, neck, and skull pain

seizure activity

cognitive deficits

*There are other symptoms that have only been named by one or two people, so I have left them off this list. If you have other symptoms you believe attributable to your pineal gland cyst, please comment below so I can add them to this list.

Depression and anxiety, which may or may not be a direct result of the cyst, certainly can appear with an increase in symptoms or insufficient attention from doctors.

Treatment for Pineal Gland Cysts

Unfortunately, there really is no treatment. Many people suffering from symptoms are treated flippantly by their doctors, neurologists, and neurosurgeons. If you are reading this, you are probably one of those people.

Most neurologists will state that the cyst is not causing your symptoms and send you away with instructions to get a follow-up MRI in six months or a year. You will also likely receive a prescription for an anti-migraine medication that may or may not help.

There are only a handful of neurosurgeons worldwide who operate on a pineal gland cyst. One reason is that the pineal gland is deep in the center of the brain, and while it is outside the blood-brain barrier, it is not easy to reach. Secondly, these cysts are technically benign.

Here are surgeons I have read about who will operate on a pineal gland cyst:

Dr. Shahinian at the Skull Base Institute in Los Angeles

Dr. Mark Luciano at the Cleveland Clinic (do not know which branch)

Dr. Jeffrey Wisoff, NYU

Dr. Patrick Kelly, NYU

Dr. Charlie Teo, Prince of Wales Hospital, Sydney

Dr. Takanori Fukushima, Raleigh, North Carolina

There is a doctor at the University of Colorado Hospital who apparently will operate on pineal gland cysts.

There is also a doctor in Ohio, but I cannot find the name.

I can now happily add my neurolosurgeon here in Guadalajara, Mexico. I will ask his permission to publish his name.

Operations may be a full craniotomy, although more often they are endoscopic surgery or stereotactic radiosurgery. The last two are far preferable because they are minimally invasive and have a speedier recovery time.

Large cysts are rare enough that many neurologists will never see one in their career. Their rarity is one possible reason neurologists seem not to know what to do.

I encountered the same treatment from my neurologist that most others experience. You are welcome to read my opinion about the standard protocol for pineal gland cysts on this page.

Please consider donating $1 or $5 if this series is helpful to you because I am trying to raise the funds for my operation. I am happy to help anyone else who is suffering with arrangements and accommodations in Mexico for those who are interested in treatment options here. Thank you so much!

Where Does That Leave Someone Suffering?

It leaves them in the same position they were to start with, with additional frustrations and feelings of invisibility from the medical community's dismissal of the problem. With several hundred people writing about the same symptoms that coincide with the same rare medical condition, maybe we will eventually find a voice.

Luckily there is evidence that these cysts are beginning to be taken more seriously and research is starting to be done to learn more about them. The pineal gland is still a bit of a mystery as well. The pineal gland was thought to be useless for many years of medical teaching, and it will take a new wave to bring new knowledge to the forefront.

I found myself falling into more depression when my neurologist told me I was just anxious and the cyst wasn't causing any problems. The helplessness prompted anger, which for me was helpful. I read as much as I could and had a chance meeting with a retired nurse who had some advice to give.

I have started a journal documenting the things I'm trying in an effort to feel better. You are welcomed and encouraged to share the journey with me here.

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Thoughts About Pineal Gland Cysts

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    • efriedman profile image

      efriedman 5 years ago

      This information on pineal gland cysts and your experiences with the problem of trying to get medical help is well written and informative. I wish you good luck in dealing with this issue and thank you for making information available to help others.

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      anonymous 5 years ago

      The symptoms sound so very serious. I know about vertigo. I had a very bad case of that at one time and had to go to vistibular therapy. It helped but did not make it go away completely. It is something that really takes time.

      The blurred vision you get with it and the dissiness. You cannot make any sudden head jestures quickly because it really effects the vertigo worse. Terrible to sleep with as well!

    • profile image

      anonymous 5 years ago

      Blessings to you awuid Ange~~~ <3

    • profile image

      anonymous 5 years ago

      I have suffered with a large pineal cyst for 2 years and have just undergone an operation to pop my cyst and for a 3rd ventriculotomy for hydrocephalus that was caused by the cyst. 6 weeks post op I am now experiencing the same headaches again, my tremor has come back with avengence, and have started to feel sick again!! I went back into hospital yesterday and was told the cyst was changing (i.e. growing again!!) I am going to have an MRI in a couple of weeks which is better than the CT scans I have been having for seeing the cyst to monitor what it is doing but I feel completely devastated and angry - i am terrified of going back to a life that I had before because my symptoms interfered with my everyday life and meant i couldn't socialise or work! The internet has been useful to find answers to my symptoms and my neurologist was very quick to tell me the cyst was not causing any of my symptoms!! keep fighting!! x

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      anonymous 5 years ago

      Our 13 year old son was told he had a pineal cyst when he was admitted to hospital for extreme fatigue, loss of appetite and severe weight loss as a result. We were told this was inconsequential. 9 weeks later he is still ill and the doctors are telling us he has a viral infection because they cannot see any abnormalities in his blood work. We are getting nowhere and he is not functioning! We are so discouraged and have no idea how to help find someone to help him heal!

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      anonymous 4 years ago

      @anonymous: I found out about my cyst when I had an MRI because I was having bad headaches nausea dizziness and emotional problems and they found it. They said it was nothing to worry about so I waited 4 months in pain and had another MRI the other day. I'm in a lot of pain and want to be fixed

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      anonymous 4 years ago

      @anonymous: I was recently diagnosed with a pineal cyst, 9mm x 7mm x 2mm, I have an appointment with a neuroligist later this month. I would like to know what i have to look forward to.

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      anonymous 4 years ago

      I randomly had a seizure a few weeks ago that lasted about 10 minutes. It came out of no where and it was DEFINITELY not fainting. I have fainted many times in my life. Not only did this feel different to me, but from the outside, it looked very different.

      My boyfriend called the ambulance and I was rushed to the ER. I stayed there for two days, they performed a CAT scan and a EEG. The CAT scan showed that I had the cyst and the EEG was inconclusive.

      During my follow up appointment I was asked if I was "swooning" and they told me it was vasovagal convulsive syncopy. I was not suffering emotionally or physically, there was nothing that would cause me to "faint".

      I am concerned that my doctors are not taking me seriously. I am concerned that I will suddenly have another seizure while I am driving, or alone. How could they ignore this if there is a risk that I could have another seizure.

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      anonymous 4 years ago

      In a recent effort to cure my migraines my neurologist sent me for an MRI after numerous drugs were not causing any relief. The radiologist found a 1 cm x 1 cm cyst in the pineal gland of my brain. The neurologist said this is rare and like you mentioned wants to do another MRI. I'm now very concerned after not finding much help anywhere. Lately I have been suffering from extreme fatigue. Please if you have anymore advice or information, pass it along.

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      anonymous 4 years ago

      I'm 18 years old and for the past 2 years I have been struggling with all kinds of problems after my jaw locked shut from tmj. Very very long story short, I went to see a headache specialist yesterday and she said that I have a small pineal cyst in my brain, but claimed it was nothing to worried about and moved on. I am just wondering if this could be the source of all my problems! I have constant headaches, hours of blurriniess in my eyes, ear pain, high blood pressure, anxiety, depression, and of course tmj. I only get my self to school maybe 2 days a week at the most, and my senior year is being ruined. I've always thought that this all was just side effects of my tmj.... but could it all be from this cyst? Your thought are greatly appreciated!

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      anonymous 4 years ago

      I wrote on here a year ago before I found a brilliant group on facebook that are wonderful for support, information and help for anyone suffering with a pineal cyst of parents of children suffering with Pineal Cysts. A member of the group has started up a Pineal Cyst Foundation and we are in the process of having a large number of our group being cured through surgery. Please come and find the group it is simply called Pineal Cyst. x

    • InquisitiveOne LM profile image
      Author

      InquisitiveOne LM 4 years ago

      @anonymous: Hi and thank you so much for posting this!

    • profile image

      anonymous 4 years ago

      @anonymous: what size is the cyst? Have been told many things for 4 years. Our daughter just had hers removed on Dec 20th.

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      anonymous 4 years ago

      I had head pain with inability to retain water so had an MRI looking for a problem with my pituitary (Diabetes Insipitus) when we found a pineal cyst 1.6 cm. I must drink 90-100 oz/day. hope not 2 problems?

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      anonymous 4 years ago

      @anonymous: Trying to find your support group. Please more info! Thank you!

      Stephanie

      Stephjo101@gmail.com

    • profile image

      anonymous 4 years ago

      @anonymous: flouride in water has been linked to pineal disorder as well. which is how I wound up here. Look into that and try avoiding drinking water with fluoride and try switching to a non fluoride toothpaste. Doing our own research sometimes is better than what the doctors appear to know.

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      anonymous 4 years ago

      For 34 yrs I was told I had sinus headaches, which coincides with the number of years of depression and anxiety. Six yrs ago I was told that they were not sinus headaches but migraines. For the last 2 1/2 yrs my memory and mental health has declined. After 3 attempts to get a referral for an MRI I saw a neurologist who agreed I needed one. When he called me he told me by B-12 was low and he might as well tell me in case my GP told me, I have a 1 cm pineal cyst and I should talk to my Dr. because he may want a neurosurgeon to drain it sometime. He then said good evening and tried to hangup. My appt with the neurosurgeon went just as well. I am supposed to go back at the end of may and have more MRI's and CAT scans, Lets hope I can get the referrals. The kicker is.... my own brother is a diagnostic radiologist and he reacted just as the others did.

    • profile image

      anonymous 4 years ago

      My daughter is 12 yrs old, in early 2012 she started complaining of headaches a lot, so I took her to the eye doc, had an exam done, and her eyes were fine, then i took her to our family doc, and they said that it could be allergies, but to make sure they wanted to do an mri with contrast, at that time the mri came back ok, nothing was found, so he said to just give her benadryl, so I did, headaches did decrease for a little while but started complaining again of headaches, in Jan of 2013 she started complaining of getting really dizzy a lot, and on Jan 11 2013 she was sitting at the kitchen table, and I was in my bedroom and I heard a loud noise like something had fell, I ran in the kitchen and saw my daughter laying face down, and was just lifeless, she wasn't responding, I rolled her over to her back, and called 911, she was so confused when she came too, wanted to know why she was laying in the floor, the last thing she remembers is logging out of youtube...the ambulance came and rushed her to the ER...the ER ran a ct scan and xrays at that time they found a small cyst(about the size of a dime) in the pineal gland region, and told us that she needed to be seen by her doctor so he could refer her to a neurosurgeon, so we did just that, she had an eeg, and mri and mra with contrast..the egg came back and showed sluggish brain activity, and the mri and mra came back and showed mild swelling on the brain, and this cyst...On Feb 5th we go to Monroe Carell Jr. Childrens Hospital and saw a Dr Tulipan, he was very rude, never not one time did he even look at or speak to my daughter, I handed him all the copies of all the test and he never even took the time to actually examine those either, then looks at me and says" she has a pineal cyst, its like a birthmark its just there" and sent us out the door...since then she has gone to see another doc as well and he says the same thing its nothing to worry about, he said she has what's called "convulsive syncope" with headaches....she has these headaches almost every single day and was put on a preventive medicine for those(which doesn't work) and I have to take her bp first thing in the morning laying down, and then standing, and then again the same way at bedtime, he has also put her on a bp medicine, I don't understand that one either because her bp is already low.....on Thursday morning April 11th at 6:30 am I went into her room to wake her up to get ready for school and took her bp and she was fine, then I had her stand so I could take it, and she had been standing several mins then suddenly she says im getting dizzy...I put my arms under hers and as soon as i did she passed out...(luckly I was able to catch her this time) her lips turned blue, eyes rolled in the back of her head, she was making a horrible sound as if she was choking, all color had left her body and she was having a seizure, so once again I called 911, and the ambulance came and got her and took her to the ER...before they arrived she had came back to and was confused once again not knowing what had happened...when we got to the hospital, the doc ordered a blood test and a urine test and that is it!! he came back in the room and said urine and blood test came back normal( he had checked her for a UTI) ....when he told me that I lost my cool and said lots of choice words! I called her neurologist and took her to his office, he said what she had was a convulsion...Now I know what I saw, and it was a seizure..Every doctor that she has seen says this cyst is not causing these problems, but yet they can't seem to tell me what is causing it....I live in KY, and haven't been able to find anyone that can help us and make sense of all this, I just want my daughter better, If anyone has any suggestions please let me know..you can email me directly at candym7278@gmail.com, you can also find me on facebook (Mandy Gail May) please feel free to message me with any suggestions you might have, I am so glad I have found this site!

    • profile image

      anonymous 4 years ago

      Wehave acreage support group on Facebook. If you look up pineal cyst there is a research site you can access first. It is.my life save dealing with my frustrations over cyst.

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      anonymous 3 years ago

      Hi, I have been reading all these comments. I have been going through the same thing with my daughter for almost a year. A month ago we found out that it was pineal cyst. There are some Doctors out there that need a good smack. Because it does cause symptoms. My hardly ever had headaches in her 17 year old life. Now it's a constant one unless she takes her pain medicine. (which her Dr. doesn't want her on for long) only thing that works after trying 22 different medicines. I am taking her to see the Doctor in Raleigh, NC for a second opinion on July 22nd. I will comment back with what he tells us. I have started looking into holistic medicine, but so far the only thing I have been told is that to much phlegm in the body might cause cysts. Who knows, I will keep looking. If I come across anything, I will post it.

    • profile image

      anonymous 3 years ago

      @anonymous: I have a 1.8x1.5 cyst found on MRI about 6 years ago. Headaches, inattention, memory difficulty, fatigue and anxiety are my symptoms. I'm very interested in hearing how your daughter is doing post surgery.

    • profile image

      tammy-l-gonzalez1 3 years ago

      I had my son seen by a pediatric endocrinologist for precocious puberty. In checking his pituitary and hypothalamus they also considered this an incidental find.

      This is my son's report from his MRI:

      In the region of the pineal gland, there is a cystic lesion which demonstrates some thin peripheral

      enhancement and a small amount of solid nodular tissue at its posterior aspect. This lesion measures

      1.5 cm in AP dimension x 1.0 in TV dimension x 0.8 cm in CC dimension, and exerts mild mass on the

      tectum.

      My son has suffered his entire life with learning disabilities... could this be the culprit?

      Thanks for your article.

    • InquisitiveOne LM profile image
      Author

      InquisitiveOne LM 3 years ago

      @tammy-l-gonzalez1: Hi Tammy. I'm sorry your son has the mass you described. I'm not a doctor, just someone who went through a horrible time with my pineal gland cyst. I think anything is possible, and while they are still considered "incidental" by much of the medical establishment, there are doctors who understand the havoc they can wreak. Mine made me an emotional, cognitively-incapable mess. I'd recommend you search for a doctor who takes these cysts seriously and get an opinion from an expert. I believe as time goes on, the medical establishment will have to listen more closely to all the anecdotal evidence offered by people who have had them versus staying entrenched in outdated teaching. Best of luck to you and your son.

    • profile image

      itsatumor 2 years ago

      Does anyone get hot and cold sensations in their skin? I know, odd question, but it is a symptom that I continue to get and have been getting for quite some time. I have a 14mm Pineal Gland Tumour (not cancerous) but they are sure it is a tumour because of fluids built up around it. I get dizzy spells that knock me off my feet and stroke like symptoms......yet the nuerosurgeon says i only have to worry about double vision........Anyone got something for me? I'm supposed to go for MRI's every 3 months, but to be quite honest, I don't see the point of them watching this thing when there is no intention to do anything with it, so in other words.....not going. But seeing how I've had every test done, and have come up perfectly healthy, with the exception of a tumour ( a "common" tumour) I'd much rather see if someone else shares this odd and uncomfortable symptom than ask a doctor who looks at me like a dog does when theres a high pitched noise.

      Its sad that so many people have the same experiences with their doctors, I have to say, it is a huge relief not to go through this alone. My symptoms started at 15, no tests done, given antidepressants.....Symptoms worsened over the years, they finally check.... and what do you know....a brain tumour....surprise surprise. Yet the migraines, tunnel vision, fainting, constant dizziness, among a hundred other odd symptoms could not possibly be a side effect!

      Annoyed

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      yvonna 23 months ago

      The one at the Cleveland clinic is at the branch here in ohio. And is at the Cleveland branch because cleveland clinic is also all over ohio too! I see he excepts my insurance so I'm going to make an appointment with him. I had a MRI because of headaches and migraines and a year and a half ago and got a letter from the Dr that the MRI came back fine but then a year in a half later you get online to look for results from another MRI and find that the brain MRI u had done a year ago shows that u have a 9 mm pineal cyst? ( I went to the Dr's office had them to print me off the letter they sent saying it was normal and a copy of the radiology report saying that I have a 9 mm pineal cyst. Then confronted him. He said the Dr that ordered it made a mistake! I said a mistake!!! That's a huge mistake!!! And he said I can assure u he's a good dr and I said yeah and that's why I almost lost my toe too huh because he operated on an ingrown with an infection and it spread. I had another MRI done in may and it showed it is the same size and my Dr said that the reason the letter was sent negative was because they usually aren't nothing to worry about.)I researched them and they are something to worry about when you got neurological problems Dr's can't explain and even himself reffered me to a neurologist along with my pain dr, neurosurgeon and eye dr cuz we don't know where my headsches, blurred vision, double vision, dizziness, leg weakness and etc... is coming from. But a neurologist don't know nothing about them. It's a Neuro Oncologist that does. I called today and told them I wanted a referral to cleveland clinic and the Drsaid he ccan'tdo that because II'mnot having no symptoms!!! Hello!?!

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      MrDana 21 months ago

      I have a 1cm cyst have had for years. Reading these post makes me feel sad for those people suffering. I, too, suffer but not those ways. I have two symptoms. My eyes don't track in sync causing double vision on any item closer than two feet. Secondly, I have hallucinations mostly during the night and twilight times. These hallucinations are the worst as they scare me to the point of jumping out of bed to kill them. That scares my wife.

      I've been told that it's not worth trying to remove this cyst. I'll keep reading and learning and certainly hoping for relief for all that have this problem.

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      Wondering 21 months ago

      I was just diagnosed with a small cyst. I've been having horrible headaches, earache and face pain only on the left side. I was reading some other articles about pineal gland cyst and a few of them said that syncope is a symptom. A few years ago I was diagnosed with that. I can't help but wonder if it's because of the cyst.

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      lori 15 months ago

      i have read, several times, that these "incidental findings" occur when imaging of the brain is done for some other reason. Everyone with a pineal cyst had an MRI of the brain in an attempt to find a cause for symptoms. No one had an mri because the treating physician was anticipating that a pineal cyst was the culprit. I am not a trained scientist, but it only seems to make sense that these cysts do have something to do with wide range of symptoms that people experience. I can't seem to find a single clinical trial or ongoing investigational research about this. why isn't someone at least looking into the symptoms that exist, exact location of the cyst, and the structures of the brain in the surrounding areas that may be affected from the crowding of a 2 cm foreign object being in there?

      My mri was ordered because at 39 years old, i keep falling for no reason and have constant muscle twitching. i was certain that they were going to confirm MS with the mri that i had, since it is the only thing that would explain the crazy symptoms that i have had. so, i don't have MS, do have a large pineal cyst, but don't have an explanation because the finding was incidental. i must just be crazy.

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      Dawn Scheck 9 months ago

      I havd what was thought tobe a stroke in April,so farhave been disregarded by 3 drs.I have only medicare and hopetofind helpsomewhere.IaminMobut camefromColo.please letmeknow if you have any helpful info..thank You

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