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Avatar universal

pineal cyst and headaches

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!
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Avatar universal
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.
Helpful - 4
Avatar universal
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.
Helpful - 2
Avatar universal
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.
Helpful - 2
Avatar universal
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
Helpful - 1
Avatar universal
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***@****
Helpful - 1
Avatar universal
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
Helpful - 1
Avatar universal
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!
Helpful - 1
Avatar universal
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.
Helpful - 1
Avatar universal
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.
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Avatar universal
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Avatar universal
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!
Helpful - 0
Avatar universal
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.

Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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
Helpful - 0

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