I have had constant headaches for over 10 years now and was recently diagnosed with a pineal cyst. The size they measured it to be was 1.3 cm by 8mm. I know this is a bit bigger than what they are normally seen at. I have daily headaches...usually worse at night. Trouble falling asleep and staying asleep, usually do to the headaches that I have at night. I get migraine headaches at least once a week and have some visual disturbances. For example, I can place by hand on my forehead at a right angle with my body and when I look up, I can't see it. I have been put on Midrin, Darvocet, Maxalt, Inderal, Fioricet and anti-inflammatory medications and nothing has worked. I have seen a neurologist who says the cyst is nothing and thinks I am having tension headaches. He put me on an anti-depressant (the name of which I can't remember) that is designed for tension headaches and it did nothing. I was wanting to know when a cyst can cause symptoms such as headaches?
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replied April 17th, 2008
Experienced User
Most definately they can cause headaches like this. Why aren't they removing it? You really should look into it because they can cause pressure on your brain and cause other problems especially as large as it is.

I'm sorry you are going through all of this.

Get a second opinion often times these cysts are removed and especially at its size. If you need a good neurologist I am in MI there is one I saw (not for a cyst but from a car accident injury) that was really good in the Ann Arborn/Ypsi area.
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replied April 17th, 2008
I have been told that until it cause life threatening problems I would be very hard pressed to find anyone that would remove it, mainly because of it's location.

I have had an appointment with one neurologist at U of M which was back in November...he sent me to a neuro-opthamologist due to the fact that my vision range looking up is limited....and he also referred me to the Headache Clinic at U of M, I have an appointment there on April 24th. Up until now it just seemed to me that no one really wanted to address it...except for my family doctor who has never seen anyone with one or a symptomatic one at that.

He's even asking me to find out if anyone is doing research on pineal cysts.

I guess I just became a little more curious after realizing my cyst was over twice the size of normal ones....which would lead me to believe that it could definitely be the cause of my symptoms.
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replied April 17th, 2008
Experienced User
Where is it located? Why are they concerned about removing it?

I still would get another neurological surgeon opinion even 2. Here is the thing it is affecting you in a very negative way, while it may not be life threatening at the moment it could grow some and become life threatening further it is likely the cause of all your problems and your quality of life counts for something when determining if you should have a procedure like sugery done. Any doctor who doesn't take that into some consideration isn't worth a grain of salt in my opinion.
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replied April 17th, 2008
It's on my pineal gland which is basically in the very center of my brain. Near a lot of vital tissue. I guess from what I was told it's pretty risky?
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replied April 23rd, 2008
Extremely eHealthy
If the cyst is large and symptomatic they will usually try to remove it. This is difficult surgery but can be done. Ask whoever you see how often they have performed this procedure. If it is not often, move on and find another surgeon. I know several in Chicago that I would go to if I needed to. You need to find a skilled neurosurgeon. U of M should have some good surgeons. Borgess in Kalamazoo has a good reputation too.
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replied April 23rd, 2008
Experienced User
Is the cyst progressively growing? I have a friend that had the same condition - causing migraine headaches and vision problems. It was affecting her peripheral vision as well. In fact, it was her eye doctor who diagnosed her condition. She was very reluctant to the surgery, but it was a huge success!
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replied April 28th, 2017
Hey Fellow cysters,

I'd like get your opinion on whether I should have my pineal cyst removed.
I've become mysteriously tired all the time for a year plus, and have developed a slight tinnitus, sound sensitivity, mood disorders, and hormonal imbalances amongst other symptoms. I have a slight headache, or a feeling of heaviness in my head constanty, but not a throbbing sensation at all.
They found a pineal Cyst of 12mn in my bran after the MRI.
After several blood tests, we haven't really found anything really significant that would warrant a diagnosis, let alone a treatment.
Could the cyst be the culprit ? And is it risky to get it operated regardless ?

Thank you all.
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