Saturday, August 30, 2014
Friday, October 17, 2008 T, Community Member, asks

Q: Does anyone have a cyst on pineal gland?

I got my second MRI in the past 5 years and suffer from severe migraines on the left side of my head along with eye drooping. I know this can be just a migraine or cluster, but after learning of this cyst, I wonder if this can cause such headaches........does anyone have this also?

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Answers (40)
Teri Robert, Health Guide
10/30/08 1:17pm

T,

 

Migraine is a genetic neurological disease. A pineal cyst cannot be the root cause of the disease, but it is possible that it could trigger some of your Migraine attacks.

 

If your current Migraine treatment isn't working well, a discussion with your doctor is in order. If your doctor feels he or she has run out of suggestions for you, it may well be time to see a Migraine specialist. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

 

Good luck,

Teri

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me, Community Member
2/18/11 2:06pm

Sorry "Expert" you have spoken out of turn...if your cyst is larger than a typical 05cm, it can indeed create a mass effect on the tectal plate or aqueduct, thus causing an irregular flow of cerebral spinal fluid, which inturn creates a pressure = headache

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Teri Robert, Health Guide
2/18/11 2:14pm

I didn't say the cyst couldn't cause a headache or even trigger a Migraine. I said it cannot cause Migraine disease, a statement which is accurate.

 

Teri

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Cherrie, Community Member
5/21/11 3:14pm

Hi- I have a pineal gland cyst that is more than a centimeter in size.  My biggest complaint is vertigo and blurred vision.  Sometimes when the vertigo can get so bothersome that I feel a lot of pressure in my head and even tingling or a crawling around my scalp.  The vertigo is almost every single day.  I get nausea, ataxia, and my eyes are so sensitive to light.  Every time I get in the car to drive the sunlight hits me and I my vertigo starts.   

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Missy25, Community Member
11/25/12 3:49pm
Hey, I've been going through the same exact thing recently! I had a MRI done about 2 years ago and they found a cyst on my pinial gland. I didn't think anything of it until the past year when I started having the symptoms. I'm scheduled to go see a neuroglist in like 2 weeks. The vertigo and blurred vision has been so annoying! Just wondering were you able to get it taken care of? I live in NJ so if anyone knows of a good doctor please let me know! Reply
Jas, Community Member
12/ 2/12 1:12am

I have a pineal cyst too. 8mm-not big but not small either. Headache 24 hours a day- feels like pressure in my head. Of course neurologist says it is not because of my cyst.  Did you get any good info from your neurologist?

 

Also anyone else out there have sleep disturbances? Pineal gland produces melatonin.  has anyone had their melatonin levels tested?  I want to get mine tested but am afraid to even ask my doctor because I'm sure he'll say not to worry about it even though he sent me for a sleep study a few months ago to check for sleep apnea.  I don't exactly have sleep apnea but I wake up 7 times per hour (i'm not conscious of this though).

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amy6884, Community Member
5/29/13 10:46pm
I also have a pineal cyst 1.4 cm. I suffer from head squeezing pressure, dizziness, tinnitus, visual disturbances such as greying out of vision and blurring. Loss of peripheral vision and severe pain in my posterior neck and head like I've been hit with a baseball bat!!! Also I have memory loss and trouble talking. Facial numbness and arm numbness! Insomnia, you guessed it!! Pineal gland, circadian rhythm sleep pattern. news flash!! What is happening here is no doctors know anything about treating these and refuse to see them as problems!! Migraine specialist my butt! Really?! Endoscopic surgery by a qualified neurosurgeon is the ONLY OPTION. You cannot outrun the devastation these cause you. If you do, it's because you are LUCKY and one of the few! It's just finding a well educated experienced surgeon that is the hard part. The doctors that brush these off as incidental findings or asymptomatic are just naive and uneducated. Telling patients "I don't know" or "let me help you find someone that can help" is clearly not in their vocabulary. It's just easier to tell the patient that what they are feeling is not caused by the cyst it must be something else. Then run $25,000+ dollars worth of tests, run them out of money and say," I don't know, you must be depressed" take some antidepressants and go back to your PCP. Really?!? What the hell is wrong with these neurosurgeons?? They didn't go to med school for the enjoyment of helping people. It's all about prestige and money!! Good luck to all you pineal cyst sufferers! Sorry I didn't sugar coat it but if you are in my shoes, you already know, It is what it is!!! Amy Reply
constantheadpain, Community Member
1/30/14 6:44pm

Thank you Amy for your honesty. I agree that I have been given the run around by neurologists and neurosurgeons. Have spend all my savings on trying to get the help i need. On medical leave from work right now for neck surgery but it didnt get rid of the head pressure / pain or any of the other symptoms. I really hope I can find a doctor who will take this seriously and give me the surgery I need. Meaning, removing this cyst. thanks

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amy6884, Community Member
1/30/14 8:21pm

Dear constantheadpain,


I'm sorry you have been getting the run around like I have.  I see I posted this last May. Since then I have had surgery endoscopically in July.  I am now symptom free but still have occasional tiredness.   Dr. Shahinian with the skull base Institute in LA performed my endoscopic removal.   Another surgeon you may want to check out is Dr Dong Kim in Houston. Both of these surgeons are well renowned for their surgeries and recognize pineal cysts as problematic.  I hope I helped.  I know how frustrating it is.  Hang in there.  Amy 

 

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constantheadpain, Community Member
1/30/14 9:19pm

Was your surgery covered by insurance? I am willing to travel to Skull base institute if it would be covered by insurance. thanks.

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krayzchrissy, Community Member
3/16/14 5:42pm

Amyy I read your posts and everything you posted is what im going through I have the pineal cyst and he right side of my brain is enlarged ive also developed seizures mine was found in 09 I was wondering if you ever had yours taking care of and if so or if not we can all support each other hrough this then please feel free to ekail me im terrified and nobody around me knows whats going on or what its like but im at wits end and idk what to do anymore 

 

Moderator's note: For your privacy and security, please do not post personal information such as email addresses and phone numbers. Thank you.

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StevieRat, Community Member
2/11/14 5:04am

You pretty much described my symptoms, and I have found out I have a pineal cyst also in the last week. I have had symptoms for about 6 years now, and getting frustrating. I also can't drink alcohol now for the last 2 years either, as it tends to make things worse. Have you had any treatment yet

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emmy, Community Member
10/25/08 6:04pm

my 15 year old daughter has been having migrain headaches and loss of vision, light headed, pains down the right side of her body. alot of presure in her head.

nausea most of the time. at one point her right eye was inflamed with redness.

Sarah has a cyst in pineal gland. the doctor we were seeing said it had nothing to do with her cyst. I found out that every symtom that my daughter has had seems to have to do with this cyst.

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Jenn, Community Member
10/29/10 6:57pm

I am a 40 year old female with almost the exact symptoms as your daughter.  I have been diagnosed with migraines by two different neurologists.  I have taken several different migraine prophylaxic medications but haven't seen much difference in the headaches/swelling in eye.  I recently had a cat scan that revealed multiple radiopaque areas in the brain, radiologist noted them as pineal gland calcifications.  I have had two seperate head traumas about 14 years apart.  I have been suffering with severe symptoms for over 6 years.  I certainly think there is a connection with the lesions the scan revealed.  I have been researching doctors that specialize in this treatment, located in new york and columbia university.  Hope this helps.

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DEBBIE, Community Member
11/28/10 2:03am

HELLO, I JUST READ YOUR POST. I AM 58, FEMALE AND I HAVE HAD TWO CYSTS IN PINEAL REGION, NEXT TO GLAND. 1992 I HAD CYST REMOVED FOR AT FIRST I HAD BAD HEADACHES AND THEN IT WENT TO A 24 HOUR PRESSURE. AFTER IT WAS REMOVED, NO MORE HEADACHES. DOC'S TOLD ME THAT IT COULDN'T CAUSE HEADACHES BUT I BEG TO DIFFER, THAT'S WHAT MY HEADACHES WERE CAUSED FROM. SECOND CYST CAME BACK OR I FOUND OUT IN 1996 AND HERE WE GO AGAIN. SAME SYMTOMS, HAD IT REMOVED IN 1998. SO YES IT CAUSES HEADACHES, PRESSURE ETC. WHAT A JOURNEY IT HAS BEEN FOR I JUST FOUND OUT NOW I HAXE A THIRD ONE. WOULD BE HAPPY TO HEAR FROM YOU...DEBBIE

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meghan, Community Member
1/28/11 11:38am

Hi Debbie,

I was diagnosed with a 1cm cyst on my pineal gland about 3 weeks ago....I get headaches and pressure almost everyday...but this past weekend, I ended up in the hospital for 3 days because of a severe headache. they said its benign and cant cause headaches this bad, but same as you, I beg to differ. How did you get your dr. to remove it???? Would love to hear from you....

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pineal cyst, Community Member
11/ 8/11 8:56pm

dear debbie hello. i wonder... do you live in canada??? because all surgeons i know about up here do  not do this surgery... im so very very sorry about the recurance of this cyst... have they all been at the same place?? i want to have surgery for mine.... i cannot afford to go to us please respond

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pain in head, Community Member
5/ 8/12 2:03pm

i had an mri with out dye would a cyst show? my migraines are severe life altering i have had my neck surgury c-4567 with titainium due to rubtured discs and i get botox every twelve weeks nothing had worked so im hoping for an easy out this is an awful way to live

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constantheadpain, Community Member
1/30/14 6:27pm

How did you get your doctor to take this seriously? I was diagnosed with a pineal cyst 1.5 years ago but was also told it is incidental even though I have constant pressure in my head with headache. I have lightening bolts at the outside of my vision when i turn my eyes to the side. I have muscle twitches in my face. Already underwent discectomy and fusion at c5 to c7 but it has not touched the pressure / headache pain. How do i found a doctor to take this seriously? Who will remove it?

thanks for your post.

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stepht101803, Community Member
4/ 3/11 1:55pm

I have a friend that just got diagnosed with a pineal cyst in her pineal gland. She has one more neurosurgeon to talk to that I recommended her to, he had removed my AVM, but the rest of the surgeons around here have denied her treatment because of the difficulty..Could you please let me know who the doctors that specialize in this treatment that you found? She just started losing vision and doesnt want to just watch it like they said. I noticed you said NY which is fairly close to us being in RI.

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lori7607, Community Member
4/10/11 11:23am

I was diagnosed with a pineal cyst in 2006, and was told that it was incidental and not causing any of the other symptoms i was having.  My doctor told me that I would have to live to be 180 years old before it would grow to be the size where it would cause problems.  Now, in 2011, i get headaches that are so bad, itfeels like my eyeballs are going to pop out of my head.  I don't even want to bring it up to my doctor again because he made me feel like an idiot for bringing it up 5 years ago.  What other symptoms do you have?  Vision:  focusing from something up close to far away is becoming increasingly difficult....Headaches behind my eyes that hurt so bad i can;'t even explain...inability to concentrate, can't stay focused....The headaches are the worst though.  I have never had this type of headache before.  I am so confused...are these symptoms just me getting older, the results of the changes from having kids....or related to this incidental cyst that was never supposed to cause any problems?

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Teri Robert, Health Guide
4/10/11 11:32am

lori,

 

It's time to get a second opinion. Maybe it's just plain time for a new doctor. If a doctor makes you feel that way, then he shouldn't be your doctor. Please stop and think about it for a moment. You literally put your life in your doctor's hands. You deserve a doctor who listens to your concerns and discusses them with you respectfully. AND, there's never anything wrong with getting a second opinion.

 

Please, see another doctor, and keep me posted on how you're doing?

 

Teri

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Lisa, Community Member
5/23/14 1:31am

Hi I'm Lisa i live in Florence alabama is was just told today at I have a small cyst on my pineal gland . I was told  it was very common,but also told me  he would redo my MRI in 6 monthes if it has gone bigger or starts causing me more trouble that it could be removed .It scared me at first but then I stared reading all these post ,i have most of the saming things everyone else if having I'm so glad that I'm not alone on this,but I'm also so greatful that I have a doctor that is inderstanding and is willing to send me for more help if need be . I pray that we all get the treatment that we need and that it willl help us all . Thank you listerning to what i had to say sisters in the fight for a cyst on the pineal gland

 

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barbinwyoming, Community Member
4/13/11 4:37pm

I have all the same problems.  I am losing my vision rapidly, the pressure and pain in my head is unbearable, I even get unexplainable bruising on the left side.  The main pressure is on the right side of my head.  I can barely see to go anywhere and am very sensitive to light.  It feels like my eyeballs are about to pop out and in pain.  If anyone knows what kind of doctor to see please tell me.  I can't focus, concentrate, remember much.  I did meet with one neurologist and he said even surgery to remove cyst wouldn't help because now the damage is done and it will keep coming back and getting worse until dementia.  How do people relieve the pain.

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Keith, Community Member
1/30/12 3:43pm
Dr Mcdermot at Ucsf is a wonderful surgeon.He removed the majority of my pineal gland tumor which relieved me of constant headaches,dizziness,memory problems.Good luck Keith Reply
49795, Community Member
2/10/12 11:35am

I am 41 year female, never had a headache a day in my life.  On October 30, 2011 I got a headache that knocked the life out of me! For five days, I vomited, saw spots, ringing in the ears, ect.... this continued for two weeks, went to the Dr. my blood pressure was crazy high, they thought this caused the headaches.  I told him it was due to the pain I couldn't controll.  Went to eye doctor, they saw papiledema.  Had MRI, another eye doctor said not papiledema.  MRI report came back with cyst on pineal gland and urged I see neurosurgeon immediately.  I did, he said no problem- cyst not causing headache... earlier this summer I would fall asleep standing, sitting, talking.  Neurosurgeon couldn't care less, was more concerned if I was left or right handed, and if I get car sick...  I find it odd we all have the same symptoms, and yet everyone says there's no cause and effect.... Not sure what to do next. I'm nervous because everything I've read about the pineal gland--- has taught me it's our bodys regulator and when it's out of whack, it throws our other body systems off balance....

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CTucker, Community Member
6/11/12 10:02pm

I am a 54 yr old female that found out about my pineal gland cyst by accident during a MRI for neck pain in 2007.  I also suffer all the same symptoms and can't find anyone to take me serious.  They want to blame other factors.  I figure it's beause most people die with it and it never gets the attention it deserves.  No research, no information, and deny deny deny.  What is it with our medical pros,  If it is not in the news or given media attention, or thousands of people die from it then it must not exist.  Funny how all of us on this site have all the same symptoms, but none of us can get any help.  Maybe we could all sign a petition and send it to Dr. Phil, or The Doctors and get some answers if we all sign and stick together maybe, just maybe some one will listen.  What do you think?  I am tired of the pain and don't know how much more I can actually take without someone really listening.  

 

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Kevin, Community Member
12/12/08 4:38pm

Yes I have the same symptoms with a pineal cyst and a tumor in the cyst I am told from the most recent MRI.  No one can for sure tell me if that is what is causing my continual left side migrane type headaches I have almost on a daily basis now.

I too have been dealing with headaches for years but this year they have been daily.

Surgery is an option but am told it may or may not stop my headaches?!

Now what?

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kimmie43, Community Member
1/11/10 9:28pm

If you are still reading this blog, please let me know if you ever had surgery.  I have an 11mm cyst on my pineal gland and have severe headaches, dizziness and eye pain.  I am looking for a neurologist/neurosurgeon that has experience with this situation.  Thanks.

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Pineal-less, Community Member
1/12/10 9:49am

I posted this same information below, but I will posted it here too.  Dr. Theordore W. Bernstien has years of experience with pineal tumors.  When he treated me years ago he said that for some strange reason the Dayton, Ohio area had a greater incidence of pineal cysts/tumors than other areas of the country.

 

Theodore W. Bernstein, M.D.
Neurosurgery

Neurosurgery, Inc.
3533 Southern Blvd., Suite 5350
Kettering, OH 45429
Phone: 643-9299
Fax: 643-2343


 

Neurosurgery, Inc.
5692 Far Hills Ave. Ste 1
Kettering, OH 45429
Phone: 438-2140

 

   

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kimmie43, Community Member
1/12/10 4:00pm

Thank you so much.  I go on 1/18 for another MRI.  I will contact him after I receive the results of this one and see if he will look at the MRI's I have to see if he can help me.  Thank you so much for your information.

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Tired of PAIN, Community Member
1/26/11 7:38pm

I am a nurse and on Chistmas started feeling bad well two days after Christmas my head felt like it was going to explode and my neck hurt so bad. During dinner I couldn't eat I told my husband he had to take me to urgent care they did lab work and told me I needed to go across the street to the ER. They did a CT scan and a lunbar puncture gave me some meds though the IV and sent me home saying I was just having headaches everything was clear well over a week later I got a certified letter in the mail saying I needed to contact the ER regarding my radiology report. I was told over the phone that I had a pineal cyst. I contacted my PCP the next day. The following day I saw a neurologist and had MRI and was told they were common and that there is no way this is what is causing my continuing pain. I have had a seizure. I am on Topamax for Migraines which is not help. I have so much pressure in my head. I am very confused all the time and need to think really hard to say the right thing. I say the wrong words a lot and I becoming very clumsy I am having most of my pain on the right side. The size of my cyst is 1cmx1cmx1cm. I have seen a Neuroseurogeon and he said he doesn't believe this is causing the problems either. I do not feel like this is all made up in my head. I really have this pain and am at the end of my wits. Does anyone have any idea of any docs that have done surgery on these cysts near VA? PLEASE HELP ME AND MY FAMILY???????

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me, Community Member
2/18/11 2:13pm

Dr. John Jane at UVA has experience. If your cyst is simply sitting on the gland and not causing obstruction of anything else, chances the migraines are not from the cyst. The pineal gland does not touch the brain, therefore if it is not too large to touch the brain, aqueducts or tectal plate,  physicians feel it is not related to the migraine. Topomax however will make you cognitively incapable.  Most of your difficulty is coming more than likely from the medicine.

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redrose, Community Member
11/ 3/12 12:25am

Sept 18th had a bad migraine with auroras and sharp pain only in the right temple and ear area. Which triggered vertigo, ringing in right ear, and pressure on the right side of my head. I'm still fighting with these symptoms and the vertigo doesn't go away. Oct 3rd had CT Scan and was told it's normal, but when I read the report on Oct 31st it stated there's a 11mm sized cyst in my pineal gland. How is that considered a normal report? Do you know if a CT Scan shows if the cyst is big enough to be touching the brain? Had a similiar episode two years ago (except vertigo went away), and that MRI came up negative.

 

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Jenn, Community Member
10/29/10 7:00pm

Thank you so much for this information.  I am from the Dayton area and felt hopeless with this problem.  Will pass the info on to others seeking a specialist.

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pineal cyst, Community Member
11/ 8/11 9:06pm

hi there!!! great news for you pineal less... wonder if they have any collegues in montreal quebec or canada at all

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sad, Community Member
6/23/12 9:43pm

my 4 yr old daughter has a cyst bigger than 1 cm. we live in akron ohio. i have been researching the effects of flouride on the body. everything i've  read has lead me to believe that too much flouride is added to our drinking water and the primary area of the body that absorbs flouride is the pineal gland. perhaps there is a connection.

 

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joy hanereld, Community Member
9/30/10 12:32pm

hi i was reading your messages on hear i have a pineal cyst on my gland and for the past yr and a have it was a pea size now a dime size i get head pressure from the time i wake up to the time i go to sleep nonstop to mri.s with and without contrast and drs are not sure this is whats causing my pressure and i dont know what to do this is no life i had to stop working because i cant concentrate or stand up for a long period of time i hold on to walls and when taking a shower i get very dizzy and lighted and im not sure of what do to do can someone give me advise please

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redrose, Community Member
11/ 3/12 12:34am

For some reason my vertigo is worse after taking a shower too and I'm not sure why. Thought maybe it's from closing my eyes while washing my face. Haven't worked in a month now from the pressure on the right side of my head and vertigo. Starting physical therapy to help with balance, maybe that's something you can try too. Good luck, hang in there, it sounds discouraging to read posts from those going through this too because of the doctors unwilllingness to listen.

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Kelly, Community Member
12/ 6/10 2:57pm

I just got diagnosed with a cyst on the pineal gland as well last week.  I am going to see a specialst at St. Louis University.  I have no clue what to expect.  I too have severe headaches/migraines, but mine are on the right side of my head.  Keep in touch.

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shelley, Community Member
8/18/11 5:06pm

How was your dr visit at St LOuis University back in 2010 I also was told I have a 6cm cyst and I get severe migraines I have been getting alot of optic migrains and my vision is getting worse very quick I was told not to worry about the cyst for now. Did Slu Care help you

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pineal cyst, Community Member
11/ 8/11 9:02pm

kevin... who told you surgery is an option?? anyone in canada??? need to know anyone.. in canada... i will go

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Liz217, Community Member
12/21/08 5:22pm

I have a pineal cyst as well, and the same chronic headache mostly on the left side. I've done quite a bit of research on them. Unfortunately, no-one really knows what the pineal gland does other than regulate sleep/wake cycles (melatonin at night may help- one theory is your sleep may not be as deep as it should and can contribute to the headache). My cyst is only 6 mm, relatively small- less than 5 mm is considered asymptomatic. BUT, if it enlarges it can be very bad. Encephalopathy (increase in cerebrospinal fluid pressure)is very serious-leading to blackouts and seizures or death. Many doctors are ignorant when it comes to pineal cysts so you kind of have to be your own doctor. When the cyst starts to get in the 1.5 cm size- it needs to be watched very closely or even removed.

 

I usually get 1 or two BAD headaches a month, but daily deal with a moderate headache that never seems to go away.

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david, Community Member
6/24/09 3:01pm

yes  I do and the doctor does not know how long it has been there.  All I know is that I have had migraines since I was a baby.  My mother had to pad my crib, because I would beat my forhead into the coeners until I went to sleep. 

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ashley4806, Community Member
6/26/09 2:46pm

I too deal with "headaches" everyday.  They are constant.  But mine started after my bad car accident and they just found a cyst on my pineal gland.  It is 6mm.  Which my doctor in Rochester says in not the cause of my headaches.  He says they are caused by my accident.  Who knows.  I actually go in today to get another MRI but with contast to see if it is non cancerous. 

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James, Community Member
10/ 9/09 5:28pm

I have been having chronic headaches, 33% hearing loss from my left side and this has been going on for 5 years I have a very enlarged pineal gland caused by a cyst. I had 15 years in Pharmacy before the headahes begain and  now I have to take ms contin, vicodin and topamax just to help cut the pain but the headaches never go away. There is not a lot the doctors can do about the pineal gland because where it is located and it's size. Never.......Never let your doctor do surgery it can be life or death they do not tell you the human body can not live without the pineal gland.

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Maggi315, Community Member
11/17/09 12:08am

My husband had a pineal gland tumor and had the whole gland removed...I couldn't find any references that say you can't live without the gland, do you have references? research? I would be interested in anything you might be able to direct me to...I"m not finding much of anything about people without pineal glands, thanks...

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Pineal-less, Community Member
1/ 5/10 9:36am

I had my pineal gland, which was encased in a cyst/tumor, removed almost 14 years ago, and  I have been living without out it just fine. 

 

I do have a problem with sleeping well at night, but that was a problem for years before I had surgery.

 

Note:  During the 6 years I knew I had a pineal tumor, I never had a migraine or headache.  However, I do have a sister that currently has a pineal tumor, and she has horrible headaches and nausea.

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kimmie43, Community Member
1/11/10 2:28pm

I have an 11mm pineal cyst with severe migraines, dizziness, nausea and vision problems.  Has any been able to find a neurosurgeon willing to discuss the possibility of removing the cyst?  If so, please let me know - your help will be greatly appreciated.

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Pineal-less, Community Member
1/12/10 9:40am

Below is the contact information for the surgeon I had about 14 years ago in the Dayton, Ohio area.  He was reccomended as one of the best.  He did a wonderful job with my surgery.

 

Theodore W. Bernstein, M.D.
Neurosurgery

Neurosurgery, Inc.
3533 Southern Blvd., Suite 5350
Kettering, OH 45429
Phone: 643-9299
Fax: 643-2343


 

Neurosurgery, Inc.
5692 Far Hills Ave. Ste 1
Kettering, OH 45429
Phone: 438-2140

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EmmyBear, Community Member
1/12/10 10:22pm

Dr. Gary Steinberg at Stanford University in Northern California is a wonderful neurosurgeon who does remove pineal cysts.  

 

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joy hanereld, Community Member
9/30/10 12:46pm

i have a pineal cyst on the gland it was detected a yr ago it was a pea size and now a dime size went for several mri,s cts and the presure and dizzy spills lighted ness are getting worse i had to stop working cuz it hurts so bad and my dr is not sur its it coming from the cyst or not i need some help i cant concenate sometimes im afraid to drives im not feeling right and sleeping i cant get comfortable they also said i had calcium buildup are the cyst what do i do ...

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Sarah, Community Member
12/29/09 5:06pm

I am 20 years old. I was diagnosed with a pineal gland cyst just a couple weeks ago. I have been experiencing constant headaches every day, blurred vision, Dizziness, concentration problems, fatigue during the day, and i am unable to sleep at night. It's been getting worse for the past year. I finally had a CT done, which led to an MRI. I just met with the neurosurgeon and they want to do the surgery as soon as possible.

I am extremely nervous about this. Just thinking about "brain surgery" scares me.

I hope it goes well and that the surgery helps. I hate living like this.

I hope everyone going through the same thing gets the help and answers they need.

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Pineal-less, Community Member
1/ 5/10 9:57am

Sarah~  I hope your surgery and recovery go very well.  Try to focus on the positives (no more symptoms!) instead of the surgery.  It is amazing what surgeons can do, and how fast a body can heal.  Best wishes!!!

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jamie c, Community Member
1/ 5/10 11:20am

I have had a pineal gland cyst for all my life they say.  Found out about it 2.0 years ago.  Had bad headaches, fade out episodes during the day, difficulty sleeping, nauseau, abnormal weight gain and tiredness all day.  Sometimes I will sleep for 14 hours be up for  a bit then take a 3 hour nap.

 

Been tested for Epileptic seizures, did a sleep test.  Never was really happy with diagnosis of a sleep disorder and hypersomnia.  I take medicine that is often used for Narcolepsy to keep me awake and stop fade outs during the day.

 

I understand your fear of surgery. I know someone who had it because her cyst ruptured and caused a seizure and she fell and hit her head.

 

Mine is kinda big.  1.4 cm by 1.2 ...according to last MRI last OCtober almost 1.5 years ago.

 

Where do you live and who is your Dr. might I ask?

 

I am becoming sympotmatic lately and I am kind of worried.   

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Lynn Jensen, Community Member
11/15/11 9:43pm

Hi I just found out today that I have a pinal gland cyst.  I have had migrane headaches since I was a child and was diagnoised with Chronic Fatigue and went to the sleep clinic and I was given medication for Narcolepsy which worked for a while.  I had headaches 50% of the time.  I could sleep anywhere or anytime and I was treated like I didn't have a problem... In a way I'm not surprised.  What I would like to know is what causes them and what brings them on? They tell you it does not affect you but everyone here sounds like me pretty weird don't you think?

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Sharon, Community Member
1/26/10 8:04pm

Sarah

My name is Sharon. I was just diagnosed with a penial cyst. I have horrible headaches, fall alot, I am loosing my vision, and up almost every night getting sick. I saw your story. I am 39 years old and scared to death. Did you have the surgery? I don't know what to do. When you can, will you please offer me any advice. Thankyou, and you are in my thoughts and prayers.  Sharon

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ShannonD, Community Member
2/ 1/10 10:30pm

Sarah - how big is your cyst?  My husband has been having migraine type headaches every day for about 3 weeks now.  They found a 1 cm pineal cyst.  We are meeting with the neurosurgeon on Friday but would like to know how big yours is that they decided they need to do surgery.  Prayers and best wishes for a speedy recovery!

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KarenW, Community Member
2/15/10 11:26am

Are they doing surgery on your husband? My daughter just found out that she has a Pineal cyst that is 1.5 cinemeters.She has severe migranes, double vision and several other symptoms.She is waiting to hear back for an appt. with the neurosurgeon.Thanks, Karen

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ShannonD, Community Member
2/15/10 9:33pm

Not yet.   Supposedly the pineal gland cyst operation is very tricky and they try to avoid it at all costs because the risks sometime outweight the benefits.  The neurosurgeon now thinks that he has some swelling in his brain that is causing his headaches.  He has been through a cisternogram (ruled out that the pineal gland mass was causing a blockage that would have caused the swelling) and tomorrow will have a trans-cranial dopplar test to see if there is blockage in the arteries in his brain.  My best to your daughter in finding an answer to her pain.

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clontaro2, Community Member
2/18/10 9:00pm

I am a 45 year old female. Mine is 1.9 cm now, and I am symptomatic. Pretty much all the symptoms I have seen in these posts, I have. I have done my internet research as well, and have seen some case studies where these fluid filled cysts have hemorraged and caused sudden death. I will see my neurologist for the 3rd time, in a few days. He did a balance test a couple weeks ago, because I failed the Romberg Test initially, and I will find out the results of that test. My biggest concern is, if I have even the SLIGHTEST chance of having this thing hemorrage or burst and cause sudden death, then please someone take it out!

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concerned mother, Community Member
5/22/12 10:21pm

my son has a pineal gland cyst 1.3cm we just found out when he had a head ct for something else, headached stoo, I am a trauma nurse, how did it go with the Neurosurgeon? we found a surgeon at the skull base  institute in Los Angeles Calif that is specialized in the surgery, Ann

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kennyjou2003, Community Member
5/26/12 2:49am

To concerned mother:

 

Suffering for headache, balance problem and vision disturbance, I was found a 10 x 6 mm cyst in my gland and I am thinking to send my files to skullbase institute, LA.  Please reply your progress because your information/progress would be very helpful to me.

 

many thanks

 

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Bailey W., Community Member
2/25/10 12:50am

Hello Sarah,

 

I was diagnosed with a 1.2cm (12mm) Pineal Cyst back in September of 2009. I have always been a very athletic person- training and teaching Martial Arts nearly all of my life and obtaining 2 blackbelts.  Unlike the average teenager, I love school and have a passion for learning new things. (I have worked very hard to maintain a 4.0 G.P.A throughout my entire school career.) I am currently 15 years old and a sophomore in highschool with hopes of becoming a Pediatric Neurologist someday, inspired by a lifetime battle with Tourette's Syndrome.  Despite so many years of Martial Arts training, I have never in my life encountered an opponent as fierce and as merciless as the Pineal Cyst. 

 

As of late September of 2009, I have been out of school through an Independent Study program.  This has devastated me.  The endless wrath of my Pineal Cyst has even made attempting a single Independent Study lesson nearly impossible.  Even typing this response has become a very arduous feat...

 

My primary care physician originally referred me to a neurosurgeon at Stanford University.  This neurosurgeon then required me to see an Endocrinologist, Opthamologist, and Neurologist before seeing me to make sure the symptoms were not being caused by endocrine abnormalities, visual deficits, or other neurological problems.  All of the countless exams, blood tests, CT scans and MRI scans returned the same result; they were not the cause of my symptoms. 

 

The symptoms I have been experiencing are: Lack of sleep (I don't sleep at all at night.  I begin to feel slightly sleepy around 8 AM.  I maybe get a 2 hour nap during the day if I'm lucky, even while taking Ambien!  They have tried Ambien, Lunesta, and Melatonin but to no avail.), Debilitating daily Migraines, poor balance (which is very unusual due to the fact that I have trained in Martial Arts all of my life), 25lb weight gain in a period of 1 month (again very unusual for me because I live a very healthy lifestyle.  I eat a very nutritious diet and exercise vigorously. I wrestled on my school's Varsity Wrestling team at 130lbs during my Freshman year.  My self esteem has been severely affected due to the unexplained weight gain.), tremors in my hands- especially the right hand, infrequent urination, severe nausea, lethargy, difficulty regulating body temperature, difficulty focusing, pain when looking upwards (feels like my eyes are on rubber bands, snapping them back down.), etc. 

 

My family and I again made the 5 hour drive from my hometown of Hanford, CA up to Palo Alto, CA to Stanford University.  We were then told that this was not an "emergent" situation due to the fact that my cyst had not grown.  They did not believe that surgical intervention was necessary.  They also said that they did not feel that the Pineal Cyst was the cause of my symptoms.  We asked them if they were 100% sure and their answer was "No."  We also asked them if they were 100% sure based on imaging alone that my cyst is not cancerous (There is a high occurance of cancer in my family; my grandfather passed away 11 years ago from brain cancer) and their answer, again, was "No."  The neurosurgeon said, in these words, "Well, since the cyst has not grown, I will not touch it."  My parents asked him if they could be 100% sure that it hadn't grown dramatically before the discovery of the cyst?  His answer, yet again, was "No."  The neurosurgeon told us that if it grows, he may consider surgery.  They want to monitor the cyst via MRI scans every 6 months.  I pulled him aside and asked him what we should do in the meantime.  He regurgitated the same response, as if he was a broken record, that he will not "touch it" and it is not "emergent" and he "might consider" surgery upon growth.

 

My family and I left extremely frustrated and decided to contact a neurosurgeon at UCLA; my dad's alma mater.  The neurosurgeon at UCLA required me to repeat the MRI scan and send him my medical file before he would even talk to us about my cyst.  He said that he would review everything and make a decision on whether or not to accept me as a patient. After sending the new neurosurgeon all of my records, copies of my scans, doctor's reports, and numerous test results, he decided not to accept me as a patient.  We were told, quote, "The cyst remains the same.  No neurosurgical intervention is required at this time.  He will not accept the patient but the pediatric neurosurgeon might, the doctor will be forwarding the patient's information to the pediatric neurosurgeon." 

 

I am so happy that you have found a neurosurgeon who is actually willing to perform the surgery!  It seems as if it is like pulling teeth just to be "accepted as a patient" if one is a minor.  I don't think doctors believe that minors have legitimate pain or can vocalize the extent of it. My primary care physician will not consider prescribing pain medication due to the fact that I am a minor and pain medication "can be addictive", and my neurologist told me to go take an Alieve.

 

My family and I are wondering who your neurosurgeon is, and where their practice is located? (We live in Central California.)  

 

This malady has completely derailed me.  I feel as if my life has come to a screeching halt.  Although I am only 15 years old, I can truly say that my Pineal Cyst has been by far the toughest thing my family and I have faced. We are actively seeking a neurosurgeon who fully believes that pain does not discriminate regardless of gender or age, and are open to any suggestions or referrals you may have. 

 

Thank you for your time, and good luck with your surgery!

 

Bailey Womack

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mom, Community Member
11/ 8/11 10:01am

Hi Bailey!

Thank you so much for sharing your story.

I'm so impressed with how well you told it!

My 16 year old daughter also was diagnosed with a 1.2cm (12mm) Pineal Cyst last week, also a very athletic person, also a AAA student.

I am wondering, how are you doing now?

Thank you everyone else for sharing your stories too.

Do the symptoms ever go away?

Please answer, as I am desperate!

Thank you!

Vicky

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Teri LeDantec, Community Member
3/23/12 9:54pm

Bailey, Please let us know how you are doing...what has transpired since your Post and how you have dealt with your challenges along the way.

 

Teri LeDantec-Boswell

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kathy, Community Member
5/11/10 2:50pm

I haven the same problem but can't find a sergeon that will do it. Did you have it removed and what was the outcome

 

thanks kathy

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joy hanereld, Community Member
9/30/10 12:56pm

hello i am 44 yr old and i am going through the same as you they noticed my cyst a yr ago it was a pea now a dime size and the same symptoms as you and my nerosurgeron is telling me its not from that and i dont know what to do can you give me some advice

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constantheadpain, Community Member
1/30/14 6:38pm

Where is your doctor/ surgeon? I have a pineal cyst and have constant pressure/ head pain with eye pain and lightning bolts in my vision when i turn my eyes. 

I am desperate for relief. Need a neurosurgeon who will take this seriously.

thanks for any info.

 

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rg in alabama, Community Member
2/20/10 9:48pm

yes,I also was diagnosed with apineal cyst about five years ago. Mine started with severe headaches at the back of my head,like someone had put a vise on my head too tight,also my neck would stay so tight,and then I would vomit at times ,clear liquid for no reason and vertigo also was a onset problem off and on,the headaches were so bad,I honestly thought my head was gonna bust,but every doctor says the cyst has nothing to do with it,sometimes the back of my head feels sore to the touch,I also feel my left temple swells,since all of this I cannot hold on to a job and am so depressed and my nerves are shot,I never feel like doing anything because I never feel good,I don't know what a day without a headace feel like and yes it tend to hurt more to the left side,but does anybody elses hurt at the back of their head? thanks for your time rg in alabama.

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Lu, Community Member
6/ 2/13 8:11am

hey 

Yes i also have a pineal cyst and i would describe my headaches to sourcing from the back of the head area.. any new updates with your situation? best of luck :)

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arley653, Community Member
4/ 1/10 6:42am

Yes I have a pineal gland cyst.Just found out that I have 2 . I suffer from left sided headaches burning sensation in center of head sleeping problems and my vision got really bad . The doctors say its not from the pineal cyst but I disagree with them 

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kimmie43, Community Member
4/ 5/10 12:20pm

I do and my cyst is 10.08mm - all the local neurologist and neurosurgeons say it's not related but I have an appointment Wednesday with a Dr. Keith Black in Los Angeles who is willing to look at the MRI's.  Google him and you may want to contact him also.  I will be glad to update you after my appointment Wednesday.  

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clontaro2, Community Member
4/11/10 9:36am

The National organization for rare disorder says that pineal cysts larger than .50 cm are "rare findings" and are possibly symptomatic. If narrowing of the aqueduct of sylvius occurs, many neurological symptoms may exist, including headaches, vertigo, nausea, eye sensitivity, and ataxia. Continued monitoring of the cyst might be recommended to monitor its growth, and endoscopic surgery may be recommended.

I've seen 2 neurosurgeons, called the Gamma Knife people, and posted a question for the Dr on the CyberKnife site. They all said just deal with it, forget about it, take pills for the headaches and the vertigo, and sleeping issues...All of them said that vertigo was not a symtpom, but the above article says different. I'm thinking alot of Doctors just are not well informed of the Pineal cysts. Mine is 2 Cm now.

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Janet, Community Member
3/19/12 4:26pm
Hi~ I read all of the posts here, and also the same info by Internet search. I was told in the past week that I have to have a cervical fusion, to repair the damage that 4 car accidents caused to my neck. I was also diagnosed w/ ABI, from concussions. These accidents were all within 3 years of each other, the last one in december , 2008. The original MRI of head did not show any abnormalities except to the frontal lobe. Now, I have learnt that I have a 1.9 cm growth. My question is: do severe whiplash/ injuries cause abnormalities to show up? I am really struggling w/ the complexity of situation. My neurosurgeon is fast-pathing the fusion, as without it, there is potential of paralysis..yet, what comes of this? Any input would be greatly appreciated! I live alone, and am searching currently for a psw.. Thank you, Jan Reply
agirl, Community Member
4/12/10 6:40pm

I do.  It was discovered in the summer of 2008.  I have since been diagnosed with a Encephalopathy caused by a virus.  I started having hemorages behind my eyes in the last two weeks, and went back to my neurologist, who ordered another MRI.  I've been having dull pressure headaches since Thursday.

 

They just called today to recommend a neuro-surgeon, because my pineal gland cyst has grown.  In 2008 and 2009 it was at 1 cm.  I was so scared when they called, I forgot to ask the size of it now.

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Phoenix, Community Member
6/28/10 3:19am

I am 34 years old. My migraines became severe within the last 4 years. My PCP finally sent me for MRA, MRI with and without contrast and incidentally found a 6mm Pineal cyst. According to the Neurologist  that saw me, the pineal cyst is nothing but a collection of fluid. But, what I've read from the web looks worst. I was also inform by my Neuro that I do have Migraines, but not related to the cyst. Plan was to follow up on the cyst with another MRI in about a year to check for increase in size. In the meantime, I've restarted on Propranolol for "hopefully" prophylaxis for Migraines. So far, this is the first week, and not doing well adjusting to the med. Can't sleep, hands and legs feels weird, and really tired and lightheaded. Can't win.

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robin johnson, Community Member
7/26/10 10:57pm

I have a rather large cyst on my oineal gland as well  The difference in my situation is that I have always had severe migraines and a very pronounced droopy eye. After numerous gruesome tests it was determined that I had myasthenia gravis. It can cause some of the same symtioms as a p/c, and all of them are miserable. Just a word of advice, if you also notice you have trouble swallowing, speaking or have tremendous fatigue, please ask your Doc to do an ANA to look for auto-immune myasthenia gravis. You may have both. I do.  Good luck and God bless   :)

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Ex-psychic, Community Member
11/14/10 2:34pm

The pinneal gland is the main center of your brain. It regulates sleep,balance, and most importantly it is your third chakra. It is what you see when you meditate. Your connection to your higher power. Without it,there is a dis-connection to your spirituality. I was psychically linked all of my life,49 years,and after a radiation accident,I lost my pinneal gland.I don't sleep but for maybe 15 minutes at a time with major narcotics that don't even cut through the blinding back of the head pain and pressure. Anyone tells you that pinneal gland is unimportant is lying to you or was never educated on the subject. All the symptoms do is help you to cope with your loss. Good luck to all who have this impending doom,we will 'see' our higher power in the next life. Try to maintain the pain otherwise.Peace.

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marie acosta, Community Member
11/16/10 1:19pm

I have just been diagnosed with a 5mm cyst on my brain that is causing migraines, severe cluster migraines and even seizures... the seizures started almost a year ago... stress has a lot to do with them but I am not sure if they have to remove the cyst or not... and to top it off i might have several cysts all over the place.... I have chiari malformation II, spine abifada, and cluster migraines.... they all stink, but you have my prayers that we will get relief, answers, and cured from these ailments.... Take care... Please reply if you want to keep in touch.

 

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gerri necastro, Community Member
2/23/11 8:57am

I have been having severe head aches so bad that they are making me now have all these bad symptoms. I had pineal cyst show up on a mri yrs ago so now i am having another mri done. My head aches now are every day and i am getting confused, vision problems, nauseated numbness and tingling in my arms and having dizzy and so tired to where that is all i want to do is sleep. it is just terrible.

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Lisa, Community Member
3/ 7/11 9:16pm

I do and yes they can cause headaches and other problems, I have vision problems aslo. 

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barbinwyoming, Community Member
4/13/11 4:30pm

Yes I have the same problem!  Oh my God, thank you!  The pain never stops, all day and night.  What kind of doctor do you see?  What can I do?  Please help me... I'm crying reading this.

Sincerely,

Barbara

 

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Louielp, Community Member
4/18/11 9:37am

I am a 57 year old male and last year was discoverd to have a 2cm pineal cyst, whilst have an MRI on my head and neck for a spinal problem (06/10), this has been resolved with a fusion of C5-6 and C6-7. I have seen a Neurologist, and he had another MRI done (01/11), not heard back from him yet, so not sure what is to be done. But I have many of the same symptoms, as the others, severe headaches etc. Hope this helps.

 

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TMIY, Community Member
5/13/11 4:09pm

I have a cyst in my pineal gland too and the Dr said its a rare finding. My cyst is bigger than a regular size....I went to the ER last month because one side of my body was weak. Some mornings I wake up and I would drop to the floor cause my legs would weaken. I have been dealing with weird and painful migraines for the last 8 years +!!!! My vision is always a blur and my right eye gets very watery at time. Weird. The Dr. cant really do anything but surgery...I'm scared! I had two MRI's done so far. The Cyst can cause pressure to your vision and many more, which creates migraines and the migraines as for (me) causes wakness in my body and blury vision.

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StephanieG from KY, Community Member
6/11/11 2:23am

Hi,

My name is Stephanie.  I have a cyst on the pineal gland as well.  My cyst is 1.5 cm according to the MRI scan I had 2 months ago.  My doctor says that it is benign and nothing to worry about.  The problems I have experiencing though make me skeptical about that.  I have horrific headaches that last for days at a time.   The medicine that they gave me to try, Frova, did work, except for the fact that I can't afford it because 30 of them are $900.00 USD.  I have also been having speech problems, seizure like episodes, inability to sleep at night, sight problems and have even blacked out 3 or 4 times before I ever found out about the cyst (these blackouts were a year ago and the doctors couldn't explain that).  

 

I have done research on this thing, but I just don't know what to believe or do about it.  Are there any doctors on here that answer anyone's questions about these things?  Or, has anyone with the same symptoms gone to a doctor that actually considered these symptoms to be problems associated with the cyst? 

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mthompkins, Community Member
8/23/11 9:37pm

Yes, I feel the same way, but I have gone with this awful feeling since 2005  and have been feeling worse.  Now I feel like no one can help me, i have gone to too many doctors, neurologists, and emergency care as well as a variety of medications and feel like it don't do much for me anymore.  I feel like just giving up.

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Michelle, Community Member
10/10/11 10:17pm

Hello....

 

I would be happy to provide any information I can about my experience.  I am currently 4 weeks and 4 days post op.  I had a enlarged pineal cyst causing headaches daily.  I also went through the time before surgery trying to research this and had very little luck.  There should be more information.

 

Michelle

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gerry, Community Member
11/ 6/11 4:03pm

Hello,

 

 I have had a 24 hr a day , 7 days a week headache for over 13 years that has affected every area of my life. When they first started I went to my doctor who sent me to ear nose  and throat specialists, physical therapy, chiropractors, eye doctors, sleep studys but never an mri. my syptoms have grown to blurred vision in my right eye and the pressure behind both my eyes is extremely worse i am sick to my stomach alot, I cant think right, and it causes me great anxiety, but the worst affect besides the constant pain is the memory loss. I am an electrician and i am having severe memory loss. I am only 39 and i am scared to death. I have no concept of time and what i did two weeks ago because of the massive pressure in the base of my scull. I am to the point where this is affecting every aspect of my life. my new wife asked me if my doctor had ever sent me to a nuerologist and i said no so she had me goto one and he gave me an mri. I too have a cyst in my penial gland and he too said it has nothing to do with my symtems. It is where all my pain started over 13 years ago and where most of my pain radiates from today. I need to find a good nuerosurgeon that will remove it before its too late. My wife just switched jobs and time is short we will be without insurance for like 3 months and i am worried it will be concidered a preexisting condition if i dont get it done now. im about to loose my job and i cant funtion right please help........ gerry

 

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Michelle, Community Member
11/ 6/11 9:29pm

Do you have the mri report?  What size is the cyst?

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gerry, Community Member
11/ 8/11 1:40pm

i  dont have the report in hand and i cant remember if the nuerologist told me the size or not. He was pretty rude about it and really wouldnt explain much about it and wouldnt really answer any of my questions. Everytime i would ask a question he would stare at me with a look of discontent and repeat this does not have anything to do with your symptoms. I can get the information though. I am sent home for 3 days of saposed work while my boss and co-worker are working. Noone understands the effects this is having on my life, if feel helpless and am worried about how I am going to support my family.  I have always had a job but my symtoms just keep getting worse and for the first time in over 13 years i see a possible solution. my first doctor from when this all started told me i was just gonna have to live with it and i have but it has drastically ruined my life slowly and painfully .

 

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gerry, Community Member
11/ 8/11 1:42pm

what where your symtoms before surgery and did surgery affect those syptoms?

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Michelle, Community Member
11/15/11 8:54pm

My symptoms were what felt like a sinus headache without the "sinus".  More pressure than pain behind my eyes and in my temples.  There wasn't much relief with medication. 

Surgery has definitely resolved the symptoms.  I do have headaches still (2 months post op) but they are from the surgery site.  Big difference.

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mom, Community Member
11/15/11 9:07pm

Hi Michelle!

What size cyst did you have?

Who operated you?  Where?

For how long did you suffer from the symptoms?

Thank you!

Vicky

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Michelle, Community Member
11/18/11 10:43pm

Hi Vicky,

 

My cyst was 2cm x 1.6 x 1.8.  My doctor was Dr. Ortega, he is a neurosurgeon in The Woodlands, TX.  I had symptoms for almost 2 years.

 

Michelle

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mom, Community Member
11/19/11 10:10am

Thank you so much for your response, Michelle!

My daughter has one that is 1.2cm x 0.9 x 0.9, and the doctors she has seen don't want to do anything about it yet. She can't stand the idea of having these horrible symptoms indefinitely (headaches, vision abnormalities (foggy / blurred vision, seeing blotches), vertigo, fatigue, ataxia, problems concentrating, etc.)  Do you know why did they decide to operate you?  Was it growing?  I don't know what else to do!

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Michelle, Community Member
11/30/11 11:21pm

They operated because it was growing and dangerously close to causing hydrocephalus.

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April9717, Community Member
7/23/13 8:25pm
Michelle, I see its been a couple of years since your last reply. My son is 15 and has an 8mm pineal cyst. He has had headaches his whole life and they are much worse with stress. I noticed you mentioned yours feeling like "sinus without sinus". He says the same thing. So far we have been told to just wait and rescan. However, I am looking for a third opinion :) We live only 5 minutes from The Woodlands, TX. I would love it if you could please tell me how you are doing now? I've read a lot of stories where patients mentioned symptoms returning after surgery. Also, the doctor you mentioned being in The Woodlands is that where you also had surgery? How long and painful was the recovery? He has a ton if other symptoms besides the headaches. So far we were advised not to tell him about the cyst because he does suffer a great deal if pain when his stress level is high. Thanks in advance. Reply
Michelle, Community Member
7/23/13 10:56pm

Well I am doing better. Unfortunately my cyst filled back up, it was drained instead of removed. I sstill get headaches, but not as bad as before. What made me do the surgery was a constant headache that never went away.  The original doctor that did the surgery moved out of state after. I went to another doctor in the Woodlands in January and he said he could help but I didn't like the options he offered so I decided to do nothing at this point. I wouldn't say the recovery was painful but it was slow. Felt like I could barely move at first. Was back at work at 4 weeks. 

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gerry, Community Member
11/ 8/11 3:40pm

http://www.youtube.com/watch?v=W-skQCtec8E

 

 

 

 

unbeleivable!!!  a must watch!!! 

 

 

http://www.skullbaseinstitute.com/index.htm?gclid=CJOsqMnyp6wCFQRYhwodxhSvAA

 

and here is the surgeon that did all the surgerys ....

 

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kennyjou2003, Community Member
5/26/12 3:19am

Hi, Gerry:

 

From the youtube film you referred, it costs 200,000USD to do pineal cyst removal.

 

Does anyone have any idea how much would the medical expences for the cyst removal surgery in addtioin to the one shown above?

 

I am a foreigner and I can not afford 200,000 for an operation.

 

 

 

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Linds512, Community Member
10/22/11 1:03am

I got diagnosed with a pineal cyst july 11th of this year through an mri w/o contrast. the said it was a "normal variant." AND she called me and said there were no changes on your mri from 2009 with your cyst..I was like ummm what cyst?? I wasnt even told the first time i had an mri done! It freaks me out to have something growiing my head. THey tol dme as well nothign to worry about, very common, cause no problems and told me i was most likely born with it. However since july 2nd i have been having left sided headaches that come on suddenly usually and can go away in 20 min (like a cluster headache) or last hours. THey can be very dull, persistant and annoying lasting hours or all day or very painful, throbbing and end shortly after. also i have had spells of extreme fatigue or just odd feeling. I will be fatigued, but not necessarily able to sleep...It also seems like i cant focus my eyes right. I have been to an eye dr though and everything is fine. they had also recommended the mri i had though. So anyway this fatigue os not constant i have had probably 25 days of it though in the last 4 months. it used to make me very nervous when i felt that way, but now i kind of just accept it, but lately i have becoming depressed about it. I feel dumb when its happening, however no loss of memory, confusion, just liek overwhelmed about having to think through the foggy, tired feeling i have. Sometimes it is followed by a headache. other times it just goes away. the onlyi find that helps is laying down, taking my glasses off (i feel liek my eyes arent straining as much or trying to focus as much and by focus i dnt mean anything is blurry, its hard to explain I just feel like they are maybe bulging or not connecting right w my brain i dunno). but yeah if i lay down and relax and rest i usally feel better. i have battled anxiety for years and it came back this january so ive had symptom after symptom due to being a hypocondriac, but usually when i have a symptom it goes away in liker a month or after having a test. its awful  know, but this fatigue and headaches have been having for 4 months and i do have a pineal cyst, nto sure of the size or where its located on the gland, biut i feel like i want it checked out more. how do they know its not cancerous? and i heard it can rupture? causing csf leak leading to swelling of the brain and i saw a post above about hemmorhage?? is that true? im not even sure i want the answer, but if it is true why arent my drs caring?? i go to the best neurologists around, so im concerned they arent doing anything. sorry this is like a book! but i am sick of feeling so tired in the day. oh and some days i feel 100% fine. wndeirng if it is a hormone problem sometimes, related to menstrual cycle, unrelated to the cyst, an autoimmune disorder, anxiety/stress?? i dunno im a young mother and a full time student, and work and have my own apartment, so im stressed...maybe htats what causes my "fuzzy head" please get back to me thank you everyone

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Mary, Community Member
1/27/12 12:28pm

I also got diagnosed with a cyst in July of 2011. My doctor also told me that i have had since 2009. I got mad and concerned right away, she told me nothing to worry about. I do worry I have three children, I get headaches all the time, I get fuzzy headed, confused, my memory slips on me at times, sensitive towards light sometimes i just don't feel right and I even suffer from seizures. I'm only 30 yrs old my cyst is 3mm. I looked online and a pineal gland is 5mm-8mm in humans. It makes me really wonder if this is the reason why my headaches come at times they get so bad I go to the hospital. My doctor isn't worried should I be?????I just don't know what to do.

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Linds512, Community Member
10/22/11 1:48am

oh also i have occassional dizzy spells on and off for 3 years. the most recent one was about 2 weeks ago and i was dizzy for 2 days..dr said not emergency situation unless its vertigo (I called the answering service). The dizziness kinda feels like motion sickness. just gross dizziness like riding in the backseat of a car. i also have gained 20 lbs in 16 months. i did quit working out but i never was a hard core exerciser. so i guess it could be im getting older and this is my new metabolism (Im only 23 though) but i know its not gonna be the same as when i was 16 eating whatever i wanted and not going to the gym..i just wonder if the wt gain is from stress and lack of exercise or maybe it could be a part of all of this. Also i have had constipation for 18 months, maybe that could cause wt gain. GI dr diagnosed me with constipation predominant irritable bowel syndrome. had a colonoscopy..came back fine. i only go to the bathroom (significantly) once every 10 days...i used to go once a day, no problem...now its "rabbit" like except for that once evry 10 days...i also have a new onset of almond intolerance. stabbing pain in back, stomach, and throat if i eat them, which now i obviously dont..dont think its an allergy (def not anaphylactic), jsut think i cant digest them. sooo yeah im done finally lol. really i dont care about any of these problems if i was just back to my normal awake, quick thinking, happy, positive self. i just feel sad and irritable and not my self for 4 months plus.

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turtlemom, Community Member
11/20/11 7:05pm

I've been feeling "fuzzy" headed, and started noticing vision changes 7 years ago. The past 2 years or so, I have a headache about 70% of the time.  If I excercise, I get a pounding, excruciating headache.  I have a neck injury and go to PT for this, have an ENT history and have had surgery for this, gotten allergy shots for the past 7 years to alleviate allergy symptoms, and I recently started taking a low dose of estrogen to eleviate the effects of my hormaone fluctuations ever month. I still have the headaches, and fuzzy head.  I don't sleep well.  I have a pineal cyst over a cm cubed.  My neurosurgeon also says to wait and see...  Does anyone know a good neurosurgeon in the Denver area?

 

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Linds512, Community Member
11/25/11 3:47pm

hi i cant answer your question about the denver area..i have heard of a dr at skull base institute Dr. Sh.. something. Can I just ask though when were you diagnosed with your cyst and at what size was it found? And have you always had symptoms from it? Does your dr believe it is causing the fuzzy head feeling? And can you describe your fuzzy head to me. Youve had that feeling for 7 years!? and what are your vision changes? sorry for so many questions but i have a pineal cyst too and have what i call a fuzzy head but everyone seems to describe it differently and my eyes feel weird but not necessarily vision changes..like no blurred or double vision. my eyes just feel weird when i get my fuzzy/tired "attacks"

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mom, Community Member
11/25/11 8:04pm

Has anyone noticed that most of the people diagnosed with cyst on pineal gland are females?

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Linds512, Community Member
11/28/11 9:41am

Yeah it says that when you read about pineal cysts...more frequent in women and esp. 40's but i feel like its mostly younger people than that

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mom, Community Member
11/25/11 8:01pm

Hi turtlemom!

Thanks for your statement.

My daughter has extremelly irregular and  heavy periods.

Is that what you call "hormaone fluctuations"?

And she also says that she is in her "own world".  Probably this is the same as "fuzzy headed"?

 

Has anyone noticed that most of the people diagnosed with cyst on pineal gland are females?

Thanks, and good luck for all of us!

Vicky

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Linds512, Community Member
11/28/11 9:49am

yeah can you descrbe more about her "own world" cuz when i feel that way.my foggy fuzzy spaced out anxious way i could call it my own world. wouldnt wish the strange feelling on any one except my dr. so he can know im not bullshitting him..but anyway, can you just ask her to try to describe it. i know its hard to find the right words for this feeling,but im wondering if its similar. and is it constant or just sometimes? worse near ovulation or menstruation? and i dont know about the periods i know there are some theories about the pineal cysts and early puberty and stuff and ive heard another about the growth of them during puberty or pregnancy because of hormonal changes...also the pineal gland controls melatonin and there is a link between melatonin and sex hormones...try readng about that

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mom, Community Member
11/29/11 8:42pm

Hi

I just tried asking my daughter again, but she does not want to talk about this anymore.

However, I found a website that has been quite useful: http://rarediseases.info.nih.gov/GARD/Condition/10723/QnA/26006/Pineal_cyst.aspx#3249

Thanks,

Vicky

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Pattijohn, Community Member
12/25/11 1:45pm

Wow so glad I came across this page, found out I had a pineal cyst two yrs ago (7mm). I've been having  migraines and tightness in the back of my head and neck also having trouble sleeping at night and sometimes in the day I fall asleep for no reason, I have only had one MRI because I don't have ins. and can't afford them. Thanks everyone for posting on here you have made me see that I need to go and have another MRI done no matter the cost.

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fedup, Community Member
1/ 9/12 7:10pm

I'm 42 and have a 1.5 cm pineal cyst that has some mass effect on tectal plate.upon seeing neurologists they said they didn't feel it was having any effect(they aren't the ones having symptoms),when i spoke with a neurosurgeon ,he said even though i may be having symptoms,the risk of surgery is far worse therefore being inoperable..Has anyone heard of any other treatments for this type of cyst???  By the way,same symptoms as many of you-massive headaches,pain in back of eyes,instability,light-sensitive,always light-headed. would appreciate any feedback with any ideas.

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Michelle, Community Member
1/25/12 11:44pm

Find a different doctor.  It is operable, I had it done in September.

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ccarey, Community Member
1/19/12 3:30pm

hello, yes i have suffered with migrains for yrs. if i stand to quick or turn my head to fast i have sever pain that reduces me to tears im seconds and stops just as fast . just had mri few days ago again it has grown and clearly states due changes shown in t1 and t2 it is noy a normal cyst 

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ccarey, Community Member
1/19/12 4:38pm

hello, yes i have suffered with migrains for yrs. if i stand to quick or turn my head to fast i have sever pain that reduces me to tears im seconds and stops just as fast . just had mri few days ago again it has grown and clearly states due changes shown in t1 and t2 it is noy a normal cyst 

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JO, Community Member
3/26/12 1:10am

I am 20 years old and recently been diagnosed with epilepsy. They found a 1.6 by 2.8 cm cyst on the pineal gland. I have seen numerous specialists and all have stated that the location of the cyst will not cause seizures or headaches. I hope this is true, but I just wanted to state that this is scary and you all are not alone. There must be something with the cyst that is causing this to many people...

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kennyjou2003, Community Member
8/ 8/12 1:25am

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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Ashley, Community Member
1/24/13 11:45pm

I've read many of the posts on here. And your stories all sound so familiar. If you haven't aleady, you may want to check out a couple of pages on Facebook called "Pineal Cyst" and "Pineal Cyst Research". The "Pineal Cyst"  page is a support group, we share knowledge, our stories, and offer words of encourgment as we all try to find answers and solutions. "Pineal Cyst Research" is a page where we share research information. If your struggling with this, don't do it alone.

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Lu, Community Member
6/ 2/13 10:34am

hello everyone, id also like to share my story with you..


i am a 23 years old male and one day around 3.5 months ago i got a severe headache from the left side temple, i could tell that its a really weird headache from the first instant. anyway after a week i decided to see a doctor and he would recommend some myogesic for muscle relaxation as he said i had stress and it probably is a muscle spasm in my neck. took the medication did not help, so after a week i went to see another doctor who ordered a ct scan for the head, results were fine and conclusion was i just had stress and it was causing all the problems, so i decided to relax a little bit more and not do any stressfull activities..same pain and headache, after two months and now i would also suffer from pressure behind the forehead ,eyes, nose and from all around my head and feel like my head is going to explode basically. Luckily my dad is a doctor and he could arrange me these meetings quickly with the doctors who he knew, So i go to see a neurosurgeon and he gets me to see an eye doctor and to do an MRI, eye check was ok. MRI returned with a pineal cyst of 12.5 x 8 x 8.6 mm and doctor would say its not applying pressure or anything so it cant be the cause of the headaches and it probably has been there since birth and we'll have a check up in 6 months to monitor whether it grows or not, (apparently all neurosurgeons have the same knowledge of this issue and all have advised us with the same, they dont seem to have alot of experience on this issue and how it can be the source of the symptoms we suffer).. So i would take his words and move on.. now that i read all of your experiences i can say for sure that it is the cause of all the symptoms that i have..im going to elaborate more on my symptoms to give you more of an idea, ok so i can actually feel the pressure sourcing from the location of the pineal gland which i would describe as the center of the head more to the lower back region of the head a little bit, it is not pain as much as it is discomfort and pressure i can feel in my forehead, back of eyes&nose , ears all around the head, i feel tension in my neck, no blurred vision as some of you guys have mentioned, sometimes nausea and two cases of vertigo, headaches become worse while travelling by car, sometimes i would have no problem sleeping after 4 hours of waking up which is weird, and i can sense a little bit of weight gain. I have also had(before the headache started) some problems with my stomach and my solid waste has changed in look and still is not normal to me as before.

Finally im going to see a neurosurgeon in a week and tell him about the whole story and will tell him the necessity of the operation to get the cyst removed, im going to take your experiences for him to read because they do have significant indications, thank you of course for sharing all your experiences and i wish all of you the best in solving this problem. Hopefully i will get back to you and share with you what happens with me further on..

But i have a question to those who have done surgery lie michelle, how do you feel after the operation? and how did the recovery process go?

Love lu

 

 

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Jfudge87, Community Member
7/15/13 4:14pm
I also had a pineal cyst. Only difference between some of you and myself is that I have had mine removed. I started having severe migraines in the summer of 2010. I could not get out of bed, eat, talk...anything. I went to the ER after 3 days of it and they did blood work and found out my red blood cell count, white blood cell count and my platlete count were all extremely low and the thought I might have cancer. So off to cancer hospital I went for more blood work. They determined I did not. Thank goodness. A few days after I started to feel better. So figured my blood count was just the problem. About 6 months went by and the headaches returned, along with nausea, blurred vision, memory loss, light and sound sensitivity. I lost about 20 pounds and looked deathly sick. My dr called in for an MRI and found "something" (literally what they said) so they ordered a CTscan and told me I had a pineal cyst. Therefore I had to then see a neurosurgeon. I had tons of blood work done as well as a spinal tap to make sure the cyst was affecting my spinal fluid. The meds they gave me didn't work while going through all of this so they finally decided surgery to remove this may help but couldn't promise anything. I got it removed in March of 2011 and I have felt a lot better since then. Although I am taking meds to prevent migraines. It's now July 2013 and my symptoms are slowly starting to return. My meds are no longer working after 2 1/2years. The recovery process was really easy and wasnt really sore. I am going back to see my neurologist in a couple weeks to see what is going on now. I really suggest everyone go see another dr. There are drs who will remove them. Of course you have up look at the pros and cons of the brain surgery as it can be fatal. Hope everyone gets to feeling some relief soon! J Reply
Lu, Community Member
7/16/13 8:37am

Hey J,

Could you please provide us with the dimensions of the cyst you had??
And please do update us after your visit so we know how your going.

Cheers Lu 

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Jfudge87, Community Member
7/16/13 8:53am
They did not ever tell me the actual size of my cyst. But when they were removing it they noticed it was wrapped around a vein and they had to cut vein in half and singe it off. Therefore, They cyst came out in pieces. Dr told me if he were to estimate it would have been about the size of a quarter or a little bigger. J Reply
Prestin, Community Member
8/18/13 12:15am

hello. i'm 16 and i've had a pineal gland cyst since I was very young (not sure around what age - but i was younger than 5 for sure... also not sure of the size of my cyst). I used to spends more days in the hospital than at my house due to severe headaches. I would wake up at 2-3am screaming and crying of really bad headaches and my mom would call the EMS and i'd get to the hospital and they would blame my cyst. everything i've read on here says that doctors told them these cysts dont cause headaches.. thats a bunch of bull! my doctor has asked me if he could remove the cyst, but i have refused due to the fact of how dangerous it is. Also, in july of 2012, we discovered my sister had a 3cm X 3cm pineal brain tumor and on August 14th she had a 10 hour surgery. we were told it was successful but the next morning the doctor did an MRI and he had hardly gotten any of the tumor. The tumor was still roughly 2.8cm X 2.6cm. We then were told it was cancer. Since then, I've had more MRI's to make sure nothing has happened to my cyst, and thankfully, after 11+ years, my cyst still has not grown. i wish everyone who is suffering from this luck and hope you live a pain free life.

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mjpapd, Community Member
1/ 4/14 11:54pm

I too have a cyst but I have been blessed with drs who are very willing to help. I don't know where all of you are located but drs here in Austin that have not only diagnosed but found ways to treat in in less than 3 months. By the end of the month I will have had surgery to have it removed. I started with dr who is a optimologist he works at Walmart eye center, he told me to go to my PCP and gave me referrals for  a rental specialist who did all the required tests and then sent me to a neuro surgeon. He saw the MRI results he spoke with a senior partner and they both agreed at our first meeting that this needed to be removed as soon as possible. He said had I been in worse shape he would have said that it needed to be done that day but because I didn't seem to have any major issues other than the headaches he would wait and let me get things in order first and in case things do get worse all I have to do is go into the er and they will get it done ASAP. The other thing he said is most surgeons don't like to do this surgery because they don't see it as a big enough risk to go into someone's brain, he said most dr would maybe do 10 in their intire careers.  Good luck and God bless y'all, I hope things work out!

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Rustle, Community Member
2/ 6/14 7:35pm

What is the name of your Neurosurgeon and where does he work?

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constantheadpain, Community Member
1/30/14 6:55pm

does anyone know of a neurosurgeon in the Portland, Oregon area that can/ will do this surgery? I am so tired of being in pain and unable to think or function. Changes in elevation cause an increase in pressure and I am just sick and tired of being in pain.

Thanks

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Rustle, Community Member
2/ 6/14 1:40pm

I live in Portland, OR

 

My wife just found out she has a pineal cyst after being diagnosed with hydrocephalus 5 years ago.  She has already had 9 neuro surgies for that.

 

The folks at OHSU don't think it's the cause of her problems.

 

I'd love to talk with you about this.

 

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constantheadpain, Community Member
2/ 6/14 5:46pm

It is incredible to me that doctors do not acknowledge these cysts as causes of pain when a patient complains of pain and no other source of pain can be found.

I was referred to Dr. Aclan Dogan at OHSU regarding mine. My MRI report says there is no hydrocephalus yet any change in elevation increases the pain in my head.

Traveling in a car increases the pressure and pain probably because living in our area, Portland, OR there are so many hills and on / off ramps to freeways. 

I am so sorry your wife has struggled with this. I completely relate.

What is so frustrating is that doctors do not acknowledge how disabling/ debilitating this condition is. For heavens sake, it is our brain ! The thing we have to use to do everything. 

 

Have you / she applied for disability through Social Security? I am in the process of that now. Plus, asked my primary care doctor if she would put me on long term disability through my job while we continue to search for a solution to the pain. 

 

I wish you both luck in finding a doctor who will take your wifes condition seriously. It is the worst thing in the world to have these doctors continue to dismiss / minimize the problem. 

Thanks for writing.

Norma

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Rustle, Community Member
2/ 6/14 7:13pm

Stephanie is being treated at OHSU also.  Her Neurologist is Dr. Dillinger and her two neurosurgeons are Dr. Ragle and Dr. Raslan.  We are currently looking into disability.  

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constantheadpain, Community Member
2/ 6/14 11:43pm

I wish you very good luck. I hope it comes through for you both quickly. This really should be listed as a disability because it certainly interferes with every aspect of a persons life. 

 

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mia, Community Member
6/ 5/14 10:52am

Yes, I have a pineal grand cyst on my brain.

0.8-1cm size cyst on 2010 mri image.

I have a daily base headache, nausea, vamiting (some day), vertigo, muscle problem, back pain, migrane, weakness of body, memory lost, eye problem.

I am coping with daily prayer and reading the Bible to comfort my self.

I am going to see my neurology docter next week.

hope I have some more answer about pineal gland cyst.

 

 

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By T, Community Member— Last Modified: 06/18/14, First Published: 10/17/08