pineal cyst and headaches

[p lope]

I have been experiencing severe headaches for the past 6 months. I have small questionable pineal cyst. I think this is why I have been having the headaches. I feel like it is causing pressure in my head. I need to get answers but haven't had any success.
Who should I go to since no one (including the local neurologist who read the MRI report and then wrote in his report that I have this cyst) told me that I have it? I understand these cysts don't cause difficulty in everyone who has one but it is my body and I know when it is telling me that there is something seriously wrong. Please help!

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes. Pineal cysts are a common and often incidental finding on MRI scans.  However, Pineal cysts come in different types (most are benign cysts, but they can also be germinomas, astrocytomas, teratomas, etc.) These different types of pineal "cysts" have different findings on imaging.  Benign cysts have the imaging characteristics of fluid (dark on T1/Flair) images, while tumors of various types found in the pineal region show contrast enhancement, dystrophic calcifications, and/or hemmorhage.  I would recommend that you speak to your neurologist about these particular imaging characteristics and if the cysts has concerning finding, you may need to have the cyst removed.
   In addition to different types of cysts, there are also symptomatic(problems) and non-symptomatic(no-problems) cysts. The most common symptom is headaches, which can be migraine headaches (or migraine varients such as hemicrania continua) or new persistent daily headaches. Other symptoms include, limitation of vertical gaze (Parinauds syndrome) and hydrocephalus (build up of pressure in the brain). If you have signs of hydrocephalus (your neurologist will know) then endoscopic removal of the cyst is the treatment of choice.  With local mass effect (causing eye problems) open surgery may or may not be warrented.  If your only symptom from the cyst is headache, medications to treat the headaches are generally the best first approach.  I would recommend elavil 10mg each night and a course of indocin 75mg twice daily for 3 weeks (ask your neurologist about these medications). I would also recommend that you see an ophthamologist to evaluate your visual fields, any limitation in your up gaze, or swelling behind your eyes. I hope this has been helpful.

[middleburg]

This is a tough one. In my experience, nearly everyone will tell you that pineal cysts are NEVER a problem. This almost certainly includes the doctor who will answer your question.

They can cause problems if they cause an obstruction to the cerebral acueduct (hydrocephalus), disrupt the flow of blood through the area (pressure on the vein of Galen), or compress the tectal plate (visual problems). Speaking to a doctor about any of these problems and expressing a concern that the cyst is causing your problems will likely be met with blank stares and accusations of wasting their time.

In all fairness, it is likely that something else is causing your problems and brain surgery (especially to this area) is not something to do on a whim. Many things can cause headaches, and lots of people (the vast, vast majority) have pineal cysts that are causing absolutely no problems.

However, just dismissing these concerns out of hand can be a real mistake. My spouse had a pineal cyst discovered soon after being diagnosed with a very sudden onset of severe vertigo and constant severe headaches. It was shocking and depressing how much trouble it was to get the problem treated. No one could explain the origin of the problem and no one was willing (or able) to help, until we met with a very good surgeon. A craniotomy was performed to remove the cyst and has solved all symptoms, except for a few related more to the surgery than to the cyst itself.

In answer to your question, I'd seek the opinion of several neurosurgeons. That should give you a better idea if it is actually causing a problem or not. Do not give up after one consult if no one can give you a good answer as to what is going on - it took us several months and entire departments of neurosurgeons before we found someone who could and was willing to help. If the cyst is not the problem though, there are several very good headache clinics throughout the country that could look into your problems and likely help.

[Fionajnz]

I am very interested to read this post.  I have spent the last 8 mths with lots of muscle weakness, fatigue and tremors, plus a variety of other health symptoms incl a cardiomyopathy, respiratory muscle weakness (on lung function testing) and chronic anemia.

I have just been told that I have a pineal tumor, most likely cyst based.  If you go to the UCLA neurology website, you can find good info and my neuro was happy that was the site I had found and brought along with me, he had trained there and felt it was good info.  My tumor is 6mm and has not changed in 6 mths.  

We saw the neuro on this past Tues and were told, its most likely cystic because it is well rounded and has no infiltrating fingers BUT that can change down the road, so they do a watch and wait thing with regular brain MRIs at least annually.  He wants me to do some additional testing when we return from vacation, which incl a repeat EMG and some bloodwork (presumably to try to differentiate malignancy from benign).  The other poster is right, it can cause headaches, hydrocephalus (build up of fluid) and also weakness, fatigue and tremors.  I would suspect sleep probs too (which I suffer from) as that gland regulates the melatonin levels and it can leave you with a jet lag type feeling.

I hope you find someone to listen to you, I feel fortunate that the Drs I am working with have believed my symptoms and kept looking for an answer.  I will look for info when I return from our cruise - its great timing for me, no time to think about possibilities about the neuro probs :-)

GL  Fiona

[LittleOne44]

I too have a pineal cyst/tumor. They are not sure whether its a cyst or a tumor. They cant tell.I just found this out 8 months ago. It is a large one (2.0cm). I have all the symptoms everyone here has, headache,double vision,problems sleeping,forgetfullness. I get dizzy at any given moment. It happened once while driving and I had to pull over and wait for it to pass. I lose my balance alot also.

I have had 3 MRI's in the past 8 months with a little change in the size of the cyst/tumor.(1mm larger).

On my last MRI, two weeks ago, they found another cyst developing. I havent been back to the neurosurgeon yet to talk about the new cyst.

They have told me that my symptoms are not caused by the cyst/tumor. I really find that hard to believe.

I have researched the web and found good information on pineal cysts and tumors, but it sounds like they do not like to do any kind of surgery because of the location.(middle of the brain).

Well I dont know about the rest of you, but am getting really tired of feeling aweful all the time. Its not them going through this everyday.

I am scared to death that something is going to happen to me, as am sure the rest of you are.

[middleburg]

LittleOne44:

I'd be a bit suspicious too of them telling you your symptoms are not caused by the cyst/tumor. My spouse had the same symptoms, all of which were extremely sudden in onset. All of them were also relieved by the surgery to remove the cyst. In fact, we first decided to investigate the issues when I had to pick up my spouse by the side of the highway after my spouse had a blackout! But of course, all of this is just coincidental in their opinion.

There are several surgical options for dealing with these lesions; you do, however, have to find someone very qualified to do them. My spouse had a right occipital craniotomy (through the back right side of the head and the visual part of the brain). The surgeons had considered an endoscopic approach, which would have been ideal and probably avoided the post-op issues, but they were unable to do so. A craniotomy to this region is pretty tough, both for the surgeon and for the patient; the surgery literally takes all day and it has been several months but my spouse is still having some vision and other troubles (though they are MUCH, MUCH better than pre-surgery).

They can also do a shunt to at least relieve the pressure, though that doesn't seem like a great idea since it wouldn't help the visual issues and shunts don't always work as advertised. Also, they wouldn't know if the lesion is "just" a cyst or is in fact a more malignant tumor unless they go in and get a sample to send to the lab.

I was always amazed at the wait and see approach advocated by many doctors. To me, this seems the height of arrogance; the lesion is causing problems NOW and needs to be dealt with NOW. So what if the lesion grows or not - it's already big enough to be causing problems! I agree that it is not them going through this hellish experience. I find it hard to believe if it was their relative that they would advocate "waiting and watching" it. What, exactly, is the patient to do in the mean time while they are suffering with the most intense pain of his/her entire life?

Good luck to you, Fionajnz, and P lope in having your issues treated. I know how difficult this time is and how frustrating doctor visits can be. Just keep going and you'll eventually find someone who can help. I truly hope that your issues are being caused by something else however, as brain surgery is never a fun experience.

[jcverive]

Although the symptoms and complications of pineal cysts can be very disturbing, the "wait and see" attitude recommended by so many surgeons is born out of many factors, not the least of which is fear.  Surgery to remove pineal cysts is among the most dangerous of all surgeries.  There is tremendous pressure by managed care insurance, as the surgery itself is quite expensive, and the prospect of causing damage is sobering. Post-op care can be extensive, and the doctor fears for the patient and himself/herself, so waiting to see if things take care of themselves can seem to be the best way to minimize risk to all.

[AshG]

I have a 3 year old who has had seizures since she was 11 months old.  Her neurologist did a MRI in 2004 and said it was fine.  They just done another MRI March of this year and said the cyst in her brain near her pineal gland looked the same.  We had no idea she had a cyst.  Her Neurologist said that she and the Radiologist missed the cyst on the MRI from 2004 but it was there in 2004.  She also said the the cyst has nothing to do with her seizures.  My 3 year old takes 14 pills a day for seizures.  They have no explanation of why she has seizures.  She is always complaining that her eyes hurt, she's hot, and she is constantly wanting to fill her self in her private area.   I read somewhere that the pineal gland has something to do with horomone. She was also anemic about a year ago.  I had no complications during pregnancy and when she was born they told us we had a healthy little girl.........It is really hard for me to except that the Neurologist thinks this cyst has nothing to do with her seizures but they have no other explanation.  She is scheduled to have another MRI on August 22nd and the Neurologist said that would be the last one she does.  Maybe I should find another Neurologist that does something other than raise her medicine everytime she has a seizure.

[etaliaa_24]

hi everyone.. I am a 26 year old woman beyond scared out of my mind,im from oakville ontario canada.. i have had the shock of my life. i have found out that i have a pineal gland cyst. i have all the symptoms everyone here does.. headache,double vision,problems sleeping,forgetfullness,and sometimes i find it hard to understand ppl or talking also.i find my self staring off into space.  im really having problems sleeping. i have seen  on other sites that  sleep apnea could be linked to this.. last year i had my tonsils out and was told then that i had sleep apnea.. i wonder if this all ties in?..i have only had a cat scan and went for my first mri 3 days ago.
the tests alone are very frightening. they assume it to be a pineal gland cyst but sent me for the mri to determine exactly what it is. they also found that i am having blockage of the fluids in my brain because of the cyst.
anyone have any advice? i am in the beginning stages of all this..
and my family doesnt help me out to much im very depressed and i dont know what to do im going out of my mind
thank you everyone & any reply would br great thank you!

[pumkin72]

Hi-this is the first time I have ever posted anything on a forum but I couldn't resist when I started reading about all the problems everyone has had with headaches and having a pineal cyst. I also have a pineal cyst that was found about 5 years ago. I have had all the same symptoms as everyone else has talked about. I have not went a minute without a severe headache in the last 5 years. My headaches and such was the reason for doing several MRI's. I like everyone else got the same response that this would not cause any pain it must be something else that our tests are not sensitive enough to find. I was the picture of health until one day I started to feel sick to my stomach and got dizzy and then a severe headache that never went away.  I have seen numerous Dr's in different states and they all say the same thing.  I have been on pain medication for the last 3 years just so that I can have somewhat of a normal life.  I understand that Dr's are reluctant to start digging in my brain, however I wish that they would admit that this cyst could possibly be the problem but that they don't feel comfortable doing surgery. This I could understand but I have been accused of lying and just being depressed and of just wanting pain medication.  I guess my question is are DR's doing research on this area of the brain so that maybe one day they will know something and maybe I will have hope? I have been told this area of the brain is somewhat of a mystery. I realize this is not a really pressing question, but it is something that is always on my mind.Thank You

[etaliaa_24]

hey i just got in from seeing the neurosurgeon.. and well he
he saw on my mri that there is blockage of the fluids to my brain.
he then asked me what my symptoms are i told him i cant sleep i cant bend over it hurts to move in general. im in pain 24-7 it doesnt stop i tried telling him this. he was mean and ignorant to me. he told me that my headaches cannot be becuase of the cyst and that its prolly cause im stressed out or becuz of tension and then very coldly told me i should lose weight.
i am shocked and disturbed by this it hurts all the time and he thinks im making it up.
im in pain and i dont know what to do over the counter pain killers dont work what am i supposed to do now?
i asked him for pain killers and he told me i had to take that up with my doctor
im so sad and i dont know what to do.. if anyone wants to talk as we all have the same problem feel free to email me or add me to msn
etaliaa_24***@****

[demobird]

I am very glad that I found this site.  I have all the same conditions that everyone else seems to have.  I think that it is strange that the Neurologist and the Cardiologist does not relate this to the Pineal cyst that was found.   I have gone through sooooooooo many tests and still no answers.  I do know that I do not have seizures (I already knew that).  I have had migranes since I was 16 I am now 41.  April of this year I blacked out and ran into a semi at 70 mph, the cyst was found by an MRI but considered an incidental finding.  So I have spent months with no driving, no stairs, no showering by myself, no life, and still more tests.  I am meeting with a Neurosurgeon sometime, you know how it is the make the appointment and then call you and tell you where and when to be.  I was finally let go by the cardiologist and told to take up Yoga.  I told him I have practiced Yoga for 2 years and also some other things.  I did not leave on very good terms with him.  I am so tired of no one getting down to the problem of the cyst.  The Neurologist just wants to monitor is every 6 months to see if there is a change.  I told him last Friday that I had enough something had to be done and he gave me the wait and see also.  I know that if he was blacking out and hitting his face on the floor that he would find an answer real fast.  I have noticed that when I am tired (I only sleep 3-4 hours a night) that my vision is double.  I also can not bend over to pick something up because that means I will go down.  I wish that someone would have answers and soon.

[middleburg]

etaliaa_24 - So your neurosurgeon actually saw a blockage on your scans AND told you that this cannot be the cause of your problems? I'd say you need to see a new surgeon ASAP. Not to be inflammatory, but a blockage of the cerebral aqueduct can cause very severe problems, not just a headache. It is imperative that someone competent be monitoring your condition and it sounds like your current surgeon might not be.

The treatment (or lack thereof) of symptomatic pineal cysts really is a mystery to me. People have very real problems and symptoms, like aqueductal stenosis (occlusion) and hydrocephalus, and still nothing is done. My spouse was seen to have a total blockage of the cerebral aqueduct with resultant hydrocephalus, and still a wait and see approach was advocated at several hospitals. My spouse's life had come to a screeching halt and her life was in danger, yet no one was willing to do anything to help.

A bit of honesty on the part of the surgeons, as suggested by pumkin72, would be greatly appreciated. This problem is not well understood and the proper course of treatment is still in question. But a neurosurgeon will NEVER admit to this and, instead of being told that surgery to this region of the brain is very dangerous, requires talented hands and they are simply not comfortable doing it, we are told that the symptoms are psych at best or simply made up.

The wait and see approach is incredibly frustrating. To jcverive, this approach usually appears to patients as the surgeon not believing you and wanting to be rid of you and your problems that he/she is incapable of explaining or helping. It is incredibly arrogant for a surgeon to tell you that you are making up symptoms and to take some anti-depressants while they schedule a follow-up visit in a year. A tumor in the pineal region would be expected to have symptoms similar to what people report with pineal cysts and would be treated very seriously and with some urgency.

Fortunately, it does appear that research is being done on pineal cysts and it is increasingly being recognized as a potential problem in the literature. Combined with relatively recent advances in neuroendoscopic and stereotactic procedures, more people should receive treatment for these problems in the future.

This, however, does nothing for those who are suffering now. People are suffering severely with these cysts; the mass affect and hydrocephalus felt by people with supposedly benign pineal cysts are the same as felt by people with more malignant tumors. Several examples of deaths attributed to untreated pineal cysts, while exceedingly rare, are noted in the literature.

Good luck to everyone in having their cysts treated - surgery for pineal cysts can be pretty rough, but it definitely beats the alternative of living in constant pain and fear. My spouse spent months lying in bed in the dark and on narcotics to try to control the pain. The surgery alleviated the symptoms and has allowed my spouse to return to a relatively normal life.

[etaliaa_24]

hey middleburg..thanks for the kind words.. i agree 10000% with what u are saying.. i am insulted and scared.. i dont know what to do with my life im only 26 im so depressed all i do is eat i cant sleep at all, i feel so hopeless..  hes told me that i have to come back in 6-8 weeks for another cat scan to see if it is getting bigger
i dont have to much confidence in this man as he looked at my cat scan and mri films he held them up towards the light in the window.. he didnt even have one of thoses light in his office to put them up against like they have for xrays not to be rude or anything but he was also staring at my chest often..
i think its rididculous that he says with one breath he tells me that he acknowledges that theres a build up of fluids that cause pressure that cause headaches..then says that there is no way that the cyst can be causing my pain..then tells me he is concerned that wen i bend over it causes it to worsen and that that is a sign of pressure back up. like please can someone tell me what the hell is going on im furious. its my life not his he doesnt understand what im going thru if he did he would never say the things he did to me.. he was truly a big jerk i wish i could have him fired cuz he isnt all there.. hopefully the neurologist will have more answers for me. and be a littly sympathetic towards me rather then being cold.

[middleburg]

Hello etaliaa_24, I know how you feel... We had the joy of going through this experience when we were 26 and 24 and newly married. It kinda ruins your whole year.

I really hope that you can find a new surgeon soon. If he doesn’t even have access to a tool that is relatively important to the day to day operation of his practice (a light box!), how well does he know his stuff and how well equipped do you think his operating room is? And do you really want this man to be operating on you if it gets that far? There are resources for sending your records and scans to hospitals across the country, and you might explore doing so if there are no other options where you live. We didn’t have to go that far so I don’t know much about this, but when I looked into doing so Massachusetts General (Harvard) and a couple other centers will review records shipped to them and let you know if you should make an appointment.

He very well could be right though that something else might be causing the hydro, though it sounds like he hasn’t found anything else yet. Has he even considered a shunt to relieve the hydro while he is looking for the cause? You don’t need to suffer from hydrocephalus - surgery to place a shunt is usually easier than removing the cyst and I am very surprised he hasn’t suggested it is a possibility.

We too cannot cannot believe the attitude some surgeons have. We felt incredibly insulted after so many appointments. During my personal favorite appointment we waited in a Dr.’s office for over 1.5 hours before a resident came in and took shoddy notes for 10 minutes, ignoring half of what we told him while he smirked. The surgeon finally got around to seeing us about an hour after the resident left and immediately proclaimed that the my spouse did not have a problem, without so much as speaking to us! When we told him that my spouse had had a headache for two straight months, he looked at us condescendingly and told us that she didn’t! But the real kicker was when he told us to see a neurologist, not a neurosurgeon... when if he had bothered to read any of the documentation that his office demanded before they would schedule the appointment to begin with, he would have noticed that we were referred to him by one!

Good luck with your neurologist. We had a great one and he was the only reason we were able to make it through that period. He never gave up trying to find a solution and referring us to different surgeons in our area. He was the one who made the initial diagnosis and he, amazingly, never wavered.

[mariposalatina]

I was just diagnosed yesterday with this Pineal Gland Cyst. Size is 3cmx8cmx10cm...I still have no idea if that really is big or small concidering the brain. I am still trying to understand what T1 and T2 are from the MRI reports..of course I am worried because I have been experiencing severe migranes, head pressure..speach slurring (I think from the Elavil the have me on). My Dr. said it wasn't causing the migraines...but funny how I haven't had a problem up till fairly recently..Can someone help me understand this a little more? Do I need to have surgery?

[parmi2008]

hello "middleburg" i need your help brother. i have a 5 mm pineal lesion/cyst that is causing me to have severe head pressure and severe vertigo. it has ruined my life. for the past 5 years i have suffered and only this year did i find out about the pineal cyst through an MRI. i have seen dr hayr shahinian of the cedar senai medical center in Los Angeles and he is 99% sure the pineal cyst is the cause of my problem. but he wont operate. he wants me to wait another year and see if it grows before going in. I am only 25 and this has ruined my life help me!!!

please please please give me the doctors information who operated on your wife. email me ***@****

i will be thankful to you. just give me the doctors name and tele # please!!!!! thank you "middleburg"

[nancy911]

I have also been diagnosed with a pineal cyst, also an "incidental finding" on my MRI done because of severe headaches.  I was given medication for the migraines which has helped slightly. I still experience extreme pressure in my head, I have gone from 8-10 hours of sleep a night to only 3-5 hours a night and I often feel nauseated.  Of course my neurologist had her assistant tell me the cyst had nothing to do with any of thses symptoms.  I will see my neurosurgeon this week to get his opinion.  I  am hoping it is at the very least more than "too bad, so sad, let's wait and see if it grows any larger than the 1.3 cm it already is"  Does any one know how much space surrounds the pineal gland area before a cyst in that area starts blocking and inpingeing on vital functioning parts of the brain? I realize it is diffrent for everyone , but on average what would be considered a large pineal cyst?

[asj]

My pineal cyst is 2.2 x 2.1 x 1.8, if I remember correctly.  I was told this is a large cyst.  It was obstructive, causing hydrocephalus and thus warranting surgery.  During the surgery, the surgeon had hoped to take a biopsy, but could not do so safely and upon examining it visually, all indications were that it was a benign cystic mass.  My surgeon was wonderful - Dr. Mark Luciano at the Cleveland Clinic...the hospital is rated in the top four for overall care in the nation.  Dr. Luciano has an excellent bedside manner and is very attentive to patients.  We traveled from out of state, so I am now seeing a local neurologist for continuing headaches, but highly recommend Dr. Luciano - he does specialize in hydrocephalus and neuroendoscopy.  Because there was not a board certified surgeon in my home state, my GP helped us to appeal and gain insurance approval for out of network coverage. We sent films and reports before making the decision to go for surgery...hope this helps anyone looking for a surgeon.

[SKH]

I recently saw my family Doctor for headaches/not feeling good after trying glasses,otc meds,etc...he did bloodwork which came back positive for Lupus.Upon further Lupus panel, it was negative. I continued to hold to the idea that it was my head "pains" that were causing me to not feel good and asked for MRI. A Pineal Cyst of 12 mm was found and of course Neurologist said not the cause of my headaches, blurred vision, occasional dizziness, numbness in left arm, stiffness in neck,etc... I continue to complain of pressure sensation in my head seperate from the pains & headaches. It feels as if someone with large hand is squeezing my head or I have on tight cap. I also have horrible ringing in my ears, a high pitch squelch. And my forehead sometimes feels like it's waking up from novacain!Spinal Tap showed "slight" increase in spinal fluid...PA said normal was 18-20 and mine was 22. My Neuro put me on Acetazolamid for a few days which made me even worse. He said that neither the increased fluid nor the cyst were the cause of my symptons. He prescribed me Topomax (topamax), a preventative medicine for migrains and made me an appt. for Nov.! I am awaiting a second opinion with another Neuro in October. I would rather go see a Doctor who has already dealt with and acknowledges Pineal Cysts and their symptoms. PLEASE email me this information ASAP and my heartfelt thanks in advance! ***@****

[AshG]

We saw another Neurologist last week that also said the cyst near the Pineal Gland has absolutely nothing to do with my 3 years olds seizures.  He also suggested have a PET Scan done and to take all her medicines away so that she will have seizures and do another EEG while seizing so that they can see in her brain where it is fireing to make her seize.  Anyone ever had or have any info about the PET Scan?

[dacia121]

Wow, I'm so glad to finally see more people who share this problem.    Well, I'm not glad the problem exists, but I'm glad people are able to discuss it here!

I apologize in advance that this post is so long, i just can't tell you how excited I am that I've finally found a forum for this stuff.  I only post my story because I hope that what I share below can help someone gain more insight and information into this debilitating issue.  I only wish this forum had been around when we were on what seemed like an endless quest for answers.

My husband has had a lesion in the pineal region of his brain since he was a little boy.  The first time it was seen by a doctor was when he was 15 (he's 31 now).  At the time he seemingly had no symptoms, however, looking back, he was having frequent blackouts, horrible anger management issues, and probably some headaches.

About 3 years ago he started complaining of a number of symptoms including excrutiating headaches, tremors, shakiness, vision problems, nausea, dizziness, anxiety, depression, nervousness, loss of balance, memory loss, fatigue, restlessness, insomnia, etc.  I was initially concerned that he was dealing with some psych related issues and thought that they would eventually work themselves out with prayer and time.  Well, they didn't.  Things got way worse.  He was the picture of perfect health even having better than 20/20 vision and excellent dexterity and now he was losing his balance, having major vision issues, couldn't sleep, couldn't remember things, passing out at work, couldn't use his hands to perform skilled work as a mechanic, and experiencing long lasting (sometimes weeks and even months) painful headaches.

So, fortunately he had decent insurance at the time and we began seeking out doctors who could help us figure out what was happening.  I did not know about the pineal lesion yet and he had apparently forgotten about the original diagnosis from his adolescent years.  Much like many other posters here have mentioned, some of the doctors just looked at us with blank stares and assumed my husband was either lying or crazy.  One doctor whom I really trusted before all of this began assumed it was all psych related, that my husband was simply depressed, and that he needed to see a psychiatrist.  Ha!  Let me just save you lots of time and money - DON'T EVER SEE A PSYCHIATRIST unless you intent to be heavily and unnecessarily medicated!

Over the course of the next 2 years or so my husband had 2 MRI's which revealed the pineal lesion (I want to say it was nearly round and about 1.3cm in diameter if I am not mistaken) and that it had not grown at all since his initial diagnosis.  They told us that it was most likely a congenital lipoma (fatty growth which has been around since birth) or possibly nothing more than a cyst.  Of course we were given the whole 'wait and see' runaround as well.  Our fears were calmed when numerous doctors (2 radiologists, 1 neurologist, 1 neurosurgeon, and 1 neuroradiologist) confirmed that the lesion was not cancerous and was ABSOLUTELY NOT the cause of his symptoms.

My husband went on and off about 10 different anti-depression,  anti-psychotic, and migraine inhibiting drugs (3 of which have since been recalled by the manufacturer and/or FDA) during this time period and nothing seemed to help.  About the only thing that would help is heavy doses of strong pain medicines like demoral and lortab or, oddly enough, anxiety meds like xanax.

Anyhow, unfortunately the end of the story concludes with my husbands headaches getting a little better and most of the other symptoms subsiding, at least for now.  But we still don't have any answers because every doctor we've seen has said the same stupid things!  Currently my husband is not covered by any health insurance plan so we will just have to wait until he is and start our quest again.  However, this time I will be armed with statistics, info from forums like this one, and anything else I can find between now and then.

Thanks for validating the fact that my husband is not crazy!

[ryky]

My 7 year old son was recently diagnosed with a pineal gland cyst.The reason this was found was because he complained of daily headaches,squeezing in his head,and occasionally he would feel dizzy. After trying to rule everything out his pediatrician ordered a catscan where this cyst was found. After seeing a neurologist he ordered an MRI to make sure it was just a cyst nothing more, thankfully it is just a cyst. After following up with the neurosurgeon he decided to do a repeat MRI in 3 months to make sure it has not changed, this is okay. I guess my question is what do you do in the mean time, he still has a headache daily,thankfully motrin tends to take the edge off. Just like a lot of you the doctors say his headaches may not even be related to this, I have to disagree this never would have been found if he was not having headaches... I guess we will see what happens in December when he has his next MRI. Good luck to you all hopefully some day someone will have some sort of answers to our questions and concerns.

ryky

[Kandicoolwhip20]

Hello....My name is Kandra and I am 20 years old.  I was told a week ago, after over a year of blinding headaches, sleeplessness, and blurry vision, that I have a 1.3 cm pineal cyst.  The cyst is causing me to have hydrocephalus and is significantly blocking my cerebospinal fluid from draining out of my brain properly. I have been referred to a neuroligist who is supposedly the best in the state.  I see him this upcoming Tuesday.  His name is Dr. Guthakanda and he is located in Detroit, Michigan.  I will let everyone know what he has to say.

I will admit, after reading some of these posts, I don't feel so alone. Only a month ago, I was told I am unable to conceive children, which broke my heart and I haven't been dealing with that well. Now, on top of that, I get this news.  I will admit that I am scared out of my mind.  I've read things about different types of surgeries to take out the cyst and that not everyone requires surgery. I've also read that the darn thing can rupture.  I don't think that things rupturing in the brain is a good thing. :/  I am already having problems sleeping and now, this is all I can think about.  It is now 2:45 in the morning and I find myself sitting at my computer crying and praying that I will be ok.  I'm scared out of my mind to have surgery and since the pineal gland is basically in the middle of the brain, there is so much that could go wrong.  I can't stop thinking of the enevitable.  

From what everyone else on here is saying, I will be walking into Dr. Guthakanda's office prepared.  I swear if he tries to tell me to just wait and see, i'll go nuts.  If i wanted to wait and see, i woulda never had an MRI done to find the problem. Hopefully he has answers for me and is willing to help.  You just got to find that 1 doctor that goes out on a limb and doesn't follow everyone else.  There is obviously too many people experiencing the same symptoms and we all have a pineal cyst.  What does that tell you?  It is supposed to be a coincidence that we just all have pineal cysts, cuz I don't think so.  

I hope everyone else is doing well and wish you the best of luck. You are all in my prayers.  Good night.

[carrie521]

I just wanted to tell you that 11 years ago I was 20 and diagnosed with the EXACT same thing. If I am correct and you do have fluid on the brain you will have a shunt inserted to drain the fluid. It is just a small tube that starts at the top of your head and runs down behind your ear then into your belly so the fluid is drained naturally. I know it sounds very scary and I will not lie to you it was very very scary for me. BUT did you know that it is very common to have a pineal cyst/tumor? I think people like you and I are rare in that we have/had the hydrocephalus. But you will be okay. After the shunt is in I am sure they will discuss removing the cyst. And this is yes an operation and you will loose your hair ;-( something I cried over for days. Sounds so trivial now that I look back but as a girl it is just a horrible feeling. My surgery was around 7 hours and that simply is because it is in the middle of your brain and there are many many things surrounding that area.
If you do have the surgery then one good thing is if you talk to your doctor about it you may not have to keep that shunt in the rest of your life. They took mine out after a year. I just couldn't take it. Mine was not happy and it would get irritated and create a huge red sore area where the scare is on my chest. It would hurt so bad I wouldn't be able to move my upper body.
If you want a second opinion I would say to you (I mean if you still are not satisfied about what he says of if he listens to your concerns.) Ask for your MRI scan to be placed on a CD and mail it to Oregon Health Sciences University. My doctor's name was Edward Neuwelt. And he is a pioneer in this field. Very smart man.
Feel free to email me with any concerns. I know how scary this is.
carrieann_russell***@****.
Also not to put a downer on things but I just took my 13 year old daughter in for her yearly physical and you'll never guess what they told me? Yep she has a pineal cyst. There is no fluid on the brain but I am freaking out. All my memories are flooding back and nothing is worse then thinking your child may endure something that was a complete nightmare. You are in my thoughts and my prayers.
Carrie

[nancy911]

I would like to hear from the medical community on this issue.  I hear very similar stories from all of us that have pineal gland cysts with symptoms of headaches, no sleep, etc with seemingly no where to turn and yet almost 100% of the time the docs are saying no way could the cyst be causing these problems.  I say, Why is this the case?  How can they be so sure the cyst is not the problem when they do not know what the problem is?  My family physician told me it is good that the cyst is not the problem .  I said at least it would be a reason for the headaches.  We can't deny something just because we don't want to accept it as the reason. Or because we don't have as much knowledge about it as we could.  I really don't know how I am going to make it through any given day with the amount of headaches I have and the lack of sleep.  I also have been told I might have sleep apnea.  It's interesting how all these other diagnoses are so readily available but with a pineal cyst staring at you in the face, you can so easily say that's not it amazes me and confuses me.

[carrie521]

If I were you this is what I would do. Go online get all the side effects that pineal cysts/tumors have. Take it in with you and let her/him read them. It is all over the net!!!! That is why I do not even listen to what my PC tells me when it comes to my brain. DEMAND that they give you a referral to a neuro. As a woman who has had the surgery for removal of a pineal cyst I would strongly suggest a second or third opinion until you are satisfied with the results. AND THEY CAN AND DO cause all the symptoms we have all talked about on these message boards. I know for a fact. I had the BEST neuro in the country 10 years ago and all my symptoms were related to it. I don't care what a darn PC says.
Carrie

[sunshine253]

Carrie521 where did you have your surgery. please e-mail me info if you can. ***@****. thanks! Just getting frustrated like everyone else and want to find someone who has answers.

[Kandicoolwhip20]

Carrie, thanks so much for your insight....I really do appreciate it....It's about 12:16 in the morning here and I go in the morning to see the Doc.  Hopefully i'll hear good things and I'm definately prepared on what to say if he tries to brush it off.  I've found a link to the doc's webpage, which is pasted below....I will definately let everyone know what he has to say, and maybe he can help someone else. But if you'd like, take a look.

Also, Carrie, when they shaved your head, was it all of your hair, or just like the bottom layer like at the base of your head?  Also I heard that during some brain surgeries they like to do local anestitic SP? so that your awake and can respond to prevent brain damage.  What did they do for you?  Also, when they did the shunt, did they have to cut you open from ur head to your stomach?  I am deathly afraid of surgery/hospitals, when i had to have knee surgury, they had to strap me down, so you can only imagine how flustered I am right now and I don't even know what they are going to do.  Also.....sorry i have so many questions.....but how long were you "out" for the shunt surgery and then the cyst surgery?  I have just recovered from my 3 knee operations and have not worked in 9 months......my fiance and I are definately struggling, and just as I get cleared to work, i find this out....I'm worried about my brain, but more so about money.   Thanks so much for listening and you've already made me feel a little better.  Knowing something, good or bad, is better than knowing nothing at all......

[Kandicoolwhip20]

Ok, so forgetfull me forgot to put the link I said I would, so here it is.......sorry

http://www.med.wayne.edu/neurosurgery/department/guthikonda.htm

[carrie521]

Good Afternoon everybody ;-)

Okay Kandi here are the answers to your questions. You can email me at carrieann_russell***@**** if you ever need to.
Anyway here it goes

Yes they shaved my head. They left me a little bit to cover the shaved part BUT I had to fight for it. So FIGHT FOR YOUR RIGHT TO KEEP THE TOP HALF OF YOUR HAIR! If it is long enough it will cover what they shave.
And I was put completely out. I believe that is best. My doctor was the best he pioneered the surgery for pineal cyst/tumors.
I am not sure what you mean by what they did for me. But I will tell you that they listened and took very good care of me. I formed such a bond with my nurses.
NO! They dont cut you from your head to your tummy. If you are speaking of a shunt they only cut a small part on your tummy and that is just to make sure the shunt is placed right. You will be out of it before they even take you down for surgery. You won't know or remember any of it. ASK for something to calm you down and that helps so much. The shunt was only like a 45 to an hour thing. The surgery itself was almost 8 hours.
Did you know that if you were to EVER have anything in your brain this is the most cureable there is? And that you CAN'T die from it? I know you have days where you feel like you might TRUST me!!!!!
Do you have insurance? If you live in a small community go to the churches for help. Yes I know it is hard but hard times need help. And if you aren't married to this man you are with can you get state insurance?
I hope your appointment went okay. I will be thinking of you.
On the lighter side your name makes me smile because I watch Three and a half men and one of the guys girlfriends name is Kandi and she is so bubbly and funny. All will be okay. You have to be positive.
Carrie

[mazalin]

Hello, I am a 35yr old mother of three.  My headaches started after the births of my children. I also have balance issues and lack of sleep. I have had a number of falls one fractured my spine, one gave me a severe concussion. I was actually accused of falling to recieve more pain meds by the doctor covering for my pc who is on maternity leave. I saw that doctor the day i got the concussion she sent me home with another sleep aide and told me i had a couple of bad bruises and to go home and rest. At home I started to throw-up my mom took me to the emergency room were they did a ct.  A few weeks later they sent me a certified letter telling me i had a mass in the mid brain and to get an mri. did that and it said there is a 1.5x1.8x2cm nonenhancing cyst expanding the ventral and left aspect of the quadrigeminal plane cistern which is slightly hyperintense to CSF on T1 and FLAIR images, there is right displacement of the pineal region and so on....I went to a nerologist and she said that this could not be the cause of my symtoms. PLEASE ANY SUGGESTION!!!!!!!!!!!!!!!!! Right now i am taking pain meds to help with pain to no avail, sleep meds to help me sleep with no help and antidepressents. I NEED HELP! I NEED SLEEP! I NEED PAIN RELIEF!!!!!!!!!! I NEED A DOCTOR TO LISTEN TO ME!!!!!

[carrie521]

GET A SECOND OPINION!!!!!!!!!! Take your films to whoever will listen to you. Where are you located? Are there other doctors close to you? I drove 4 hours to find my doctor. I can't believe they sent you a letter. I am so sorry. I think they are like that because they see so many people with so many different problems and if yours isn't one that is life threatening they don't take the extra care it needs to talk to you. Know what I mean? They forget it is something that is SCARY for us and it is REAL for us! When I found out there was something wrong with me I was at home with my daughter it was morning and I was in the bathroom. The neuro here called and said there is a cyst/tumor in your brain and it needs to be removed. I was alone and I remember looking at jordan and just falling to the floor. I called my husband at his work and of course he rushed home but just the fact that I was told over the phone was unprofessional in my opinion.
Carrie

[mazalin]

Hello, Thanks for the reply, the second opinion thing just never works for me they make me feel like a drug addict searching for drugs. After the many falls I had(not linking them to anything in my head because no one thought to check there)I went from doctor to doctor trying to get sleep,releive from all of my aches and pains and my pc really thought it was for the drugs. Although she was the one who prescribed them to me in the first place, of which now i am being weened off them when i need them the most.  When i take my pill in the morning i aleast get some releive so i can get my 3,5,7yr old children ready for school. Then noon comes and all I want to do is cry like i am now. I just wish my pc wasnt on maternity leave so i could talk to her. Execpt for the whole drug issue she really listens to me. She just doesnt want me to be an addict i guess.  I have literally and i mean literally tried every sleep aide she could think of ambien diazapam, lorzapam, kolonopin, and some i cant even remember I am just so confused and dont know what to do.  My problems go on I have a mild case of nerofibromatosis (they think) this causes me to have tumors all over my body for instance i have 4 on my tongue alone. I am afraid to go to a doctor because of how they will treat me. So any comments on this, love to hear them!!!!!!!

[mazalin]

Hello, One more problem there was no findings on the mri to be concerned about they just said i needed to have another one in 4-6 months to see if it had grown.  My neurologist thinks that i was born with it but that is just impossible because of the nerofibromatosis i had been getting ct scans since i was 10yrs old. So this IS somthing new. I told her this and because my last scan was before my babies 7yrs ago that the technologies might hav changed. Before having children I went to a genetic specalist to make sure I couldnt pass this disease to my children I stopped having them because one genetic specialist told me that it could not be nerofibromatosis. Now after having 3 children the nerologists tends to think i have a mild case. Every time I go to a doctor I get the run around. I just pray every night that my children do not get nf. Any comment on wether or not a ct 10yrs ago specifically looking for a tumor in the brain would not pick it up? My symtoms have only started a year and a half ago. Sorry so long and dragged out it just feels so good to have someone actually listen to me and understand my frustrations. Thank you so much!!!!!

[carrie521]

My CT was taken 10 years ago and it picked up my pineal cyst/tumor so I can't imagine yours wouldn't have picked up something. I am sorry you feel that they give you the run around. Not having answers is hard to deal with. I have been waiting 2 weeks now on what the doctor's think about my doctor. And I too was worried about passing it to my daughter but they told me no way. And now look she is 13 and there it is on her MRI!!!!!!!!! So I do not think they know everything that is for sure. I wish I had more good news to give you. When they told me two weeks ago jordan had it in her head i cried and sobbed and then it hit me OMG I have a little boy too. What on gods green earth did I do to have to go through this?

Carrie

[mazalin]

I am so sorry about your children, I hope everything works out.I cant imagine being 13 and having to go thru this it really stinkks. I have 3 kids and now I have two diseases I could have pass to them. And the good news keeps coming today I was diagnosed with fibromyalgia lets just hope this isnt herditary too. well I have to go to soccer now check back later. again I am sorry about Jordan.

[cab2000]

Hello, this is my first post. I found this while researching Pineal gland cysts.
I have an upcomming surgury to cervical disc fusion that had been put off because they found another issue during my H&P. They encouraged me to put off the cervical surgury for a year. For 18 months prior to that, I had been suffering from headaches, nausea, extreme fatigue, times of just feeling woozy, and vision problems.  My PC diagnosed diabetes type II and Fibromyalgia. These two things could explain everything, right?
Just before last years surgury I had a horrible headache that I went to my small local hospital for pain relief.  The ER docotr ordered a CT scan.  He came back in and told me all looked good except the cervical discs, which I already knew, treated me and sent me home.  Well guess what.
Now my PC is getting me lined up for this cervical surgury and I was running around getting all related test results and reports for the surgeon. ON this CT scan report it states: incidently, there is a 2cm cyst on the pineal gland, may or may not be symptomatic. They never passed this on to my PC (different city, even though they were given that information).  I happened to look at the reports and saw this.
So for the last year as I complained aobut these symptoms which now include 2-4 hour nights, and high anxiety which is totally opposite from my usual personality, and even more eye problems, my PC has become very patronizing and disbelieving.
So now what steps do I take? All of you people that post seem to be understanding and compasionate. I apreciate any help.
Cab2000

[mazalin]

Hello, I wish I had some answers for you but I know nothing all I get from doctors is the complete run around I have been to so many doctors and this is the first one who gave me the diagnosis of fibromyalgia.  She also stated that my symtoms are not caused by the pineal cyst.  I hope you have better luck than me. Now I am trying meds after meds trying to control the pain and sleep issues I would like to know what your doctors are doing for you?  What did they put you on? I am currently taking Oxycontin which i have been on for over a year but am being weened off of unfortunetly because this seems to give me the best relive, also cymbalta, trazadone, kolonopin. I take alot of aleave and stuff like that all day to help me with the pains in my head and body.  I hope you have more luck than me.

[ryky]

I was just curious if any of you tend to get worse headaches/symptoms if you find yourselves extremely busy with not enough rest.

My son had really seemed to be doing better, just small headaches for a few weeks, and this past weekend they have been a lot worse again. He did have a really busy weekend, not enough rest but I didn't know if this is what is causing the headaches to be worse.

Just wondering if anyone with a cyst could tell me if you do tend to feel worse, the busier and tireder you are .

Hope you are all doing okay and thanks for your input.

[michaa82]

Hi Everyone,

I was diagnosed with a 1.1cm pineal cyst in April of this year. It was weird because it all started after a severe migraine that had me in bed for the weekend. When I went back to work Monday, my ear started ringing and making noises. I then had 2 months straight of naseau that interfered with work and life, which was horrible. I was going to see a specialist for my stomach, but all of a sudden it went away. 2 weeks later the headaches started and all of the other pain and dizziness. When I could no longer work because of the pain and dizziness, I went to a community care clinic, where they issued an MRI and found this cyst. Because the doctor's in my area (Idaho) did not know much about it, so I went to the Mayo Clinic in Minnesota to talk to their neurosurgeons/neuro-oncologists. They are "mostly" sure that it's a cyst, and didn't see any "obvious" hydrocephalus. Neither of those comments sounded real reassuring, but anyway.

They told me that my cyst did not relate to my problems, of course. My symptoms include severe headaches, dizziness, fatigue, muscle weakness, stiff neck, pain all over, naseau, ear pain, ringing in my ears, hearing loss, sleeping problems, eye issues... the list goes on really. It has interfered with work and my life in general.

I have tried 3 different medications for headaches including Topamax and Amilvil, because my local neurologist thought it was migraine related... nothing worked. I was also on an antidepressant for a while (from my MD); which I think was misdiagnosis - wouldn't your body feel depressed too if it was in constant pain!! I went to a ENT because the Mayo also thought it could be my ear (like Menieres). After many tests, my inner ear came back normal despite my obvious ear issues.

I had a ton of tests at the Mayo for blood work. They tested Lupus, Lyme disease, Celiac disease... who knows what else. Basically all I found out was what I DON'T have. The only thing that comes back as having problems is this cyst, some hearing loss, and low iron. All of those things I've read on this forum as being related in other people's cases.

I need to know NAMES of doctors who are willing to listen and at least be open to helping. Any clinics that have also been helpful would be nice too.

I've tried EVERYTHING and am tired of wasting time and money. 6 months wearing an applicance in my mouth to "re-align" my jaw, 3 months at the chiropractor to re-align my neck, months of natural therapy through naturpaths and a Meridian Stress test, many misdiagnosis and blank stares... Nothing was right! None of these therapies helped and even the specialists I was working with looked at me like I had 2 heads and said, "We don't understand... you should be responding to this treatment," "From a physical standpoint you've improved, but the level of pain hasn't changed; that's odd." In the end they just all admitted they had done all they could and all they knew how to do, to help me. So where do I turn?? I know everyone else has been through all this, but if anyone has ideas, I could use the help.
Thanks!

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