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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!
49 Responses
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.
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.
Avatar universal
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
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.
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.
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.
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