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Brain/Pituitary Tumors Community
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Avatar universal

Need Advice, anyone had similar experiences?

Has anyone had a pineal cyst that caused symptoms to flare up, then settle, before flaring up again? Kind of like a rollercoaster?

I've been suffering with headaches/visual problems and a strange kind of nystagmus that all point towards a pineal cyst for the past 10 years (symptoms can fluctuate or get worse or a bit better, like a rollercoaster which is hard to describe).

I've had an mri in 2006 and an mri this year in 2015 (no contrast agent was used, just a quick 10 minute scan in each instance), which basically didnt explain anything when I received my neuro letters. All they basicaly said was a couple of lines mentioning the scan had been completed and is deemed normal. No indepth analysis just a quick dictated letter. That's it. No explanation of symptoms and doctor's in general don't even seem to know much whenever I have mentioned pineal cysts and even researching this it seems that no one really knows about pineal cysts and they are even classed as incidental.

Am I right in saying that even if I had a pineal cyst, it could have been written in the radiologists report as incidental, or, even more frustratingly, not even recorded at all? And could it have been missed on a regular mri with no contrast agent used?

Another frustration is that pineal cysts aren't really discussed all that much (online and offline) so it seems that people with the symptoms that pineal cyst cause are kind of left by the curb.

Any feedback/experiences welcome.
1 Responses
Avatar universal
COMMUNITY LEADER
Find a pituitary center and get your Pcp to test you melanin. Your imaging is part of the picture but they are ignoring the potential impact.

Get a sleep study as well.

We see them discussed a lot here and I have found papers on them (pubmed) but a neuro going by size will ignore. You need blood tests and sleep tests.
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