Just curious, anyone else have a pineal cyst?

[4happygnomes]

My MRI of the brain report  did say that a small pineal cyst was found but was considered a normal finding.  What the report says though is that "An 11 mm pineal cyst is present. This is unchanged in size from the earlier examination. However, T1 signal within the lesion has increased suggesting some increase in proteinaceous fluid content or internal blood degradation products."

" The National Organization for Rare Disorders says that pineal cysts larger than 5.0 mm are "rare findings" and are possibly symptomatic. If narrowing of the cerebral aqueduct occurs, many neurological symptoms may exist, including headaches, vertigo, nausea, muscle fasciculations, eye sensitivity, and ataxia"  I have at least 3 of those symptoms.


I was looking at my last MRI's and the one from 5/14 (w/o contrast) said it was 12mm, the one from 5/19 (w/contrast) said it was 4mm, and now this one says it is 11mm (w/contrast) with some composition change...so something is going on there...or not??!!   So much discrepancy in the reports alone!

I seriously hate playing detective with my health, but feel like I don't have any other choice!

Karen

[suspiciouscombo]

How very interesting. Agreed Karen...... Many of us often have to become symptom detectives in this morass of a journey ;)

[Smackenzie]

Yes - I had one removed on Sep. 23, 2015. Im 19 years old and started having symptoms at the age of 14. I was told nothing was wrong by several doctors. Finally, after almost 4 years of arguing with doctors I got in contact with a specialist who removes pineal cysts in South Carolina. (Dr. Patel) This was a big step because I lived on the other side of the country and went down there twice. It turned out my pineal cyst was a pinealcytoma. A non cancerous brain tumor that had grown. I had constant head pressure and headaches and soon later joined a support group for other people with pineal cysts. Turns out a lot of others people have "pineal cysts with no symptoms" that turn out to be pinealcytomas. Been exactly 2 months since my surgery. Constant head pressure? GONE as soon as I came to. Migraines? GONE. Just waiting for my vision to be restored.

[Azlemed]

i have a pineal cyst too, can't remember its size though.

[aspen2]

I also have a pineal cyst -- was also told it was a normal finding.  I went through a phase also of wondering if that was my issue ... I think it's part of wanting an/any answer or explanation.  Mine was only 5.3 mm though, so it's not likely an issue.  Interesting though because I do get fasciculations, and supposedly that's not an ms thing ... ?!

I hear you on report discrepencies ... my second MRI report said I'd met the McDonald Criteria for ms (DIT and DIS).  Yet here I still sit ... :P.