Anyone with Pineal Cyst Experience? (MRI, cysts, pain, blurriness)

[dmarie123]

I had an MRI after some weird visual event that I had.

A cyst was found on my Pineal gland.

There is not a lot of information available about this type of issue, and the Neurologist just told me to do nothing, wait to see if it grows, and that it didn't cause my symptoms.

Well, the Pineal gland regulates melatonine, and I've previously been to many doctors about unexplainable exhaustion... like having to pull over at 4PM while driving, after a full night of sleep, because I'm falling asleep at the wheel (on a 20 minute drive). I was told that the two aren't related... but I don't know if I buy that.

[pitt_transplant]

Are you on any other medications? OTC or otherwise?
Did you go to another doctor for a second opinion?

[dmarie123]

Not yet, just found out this week.

I'm on some supplements, multivitamin, B6 Complex, but nothing unusual.

I'm in the military, it makes second opinions a really hard thing to obtain. There's not a lot of choice about providers and such. They will let another doctor look if I insist, who is buddies with the doctor who gave me my opinion.

I'm going to look into the procedure for forcing their hand at letting me be seen at another hospital.

Pick your battles, right? Maybe this is one of those.

[Kendallson]

dmarie, I am also in the military and had a weird visual event. Can you describe yours? Mine was 45 minutes of increasingly diminishing vision until I could only see a small circle of clarity surrounded by blurriness. The CT scan showed a probablt pineal cyst about 1 cm. I have an MRI scheduled to confirm that's what it is. Do you have other symptoms? Any other info you can provide is greatly appreciated as I am currently restricted from flying status. Thanks.

[dmarie123]

Thankfully I'm not on flying status, so no worries for me. I don't really know how to explain it. The neurologist told me I had something called a visual migraine, or optical migraine. He told me it was totally unrelated to the cyst.

I first lost just my peripheral vision on one side. It looked like the heat waves you see on blacktop, but these were vertical. They eventually moved to center of my field of vision. I never lost my sight completely, just looked like waves of heat everywhere. I read a lot about visual/optical migraines, and I believe that sounds like what I had.

I don't necessarily believe my case is related to the cyst. I also read it was pretty much impossible to get any symptoms from a cyst less than 1cm. That's the size of a marble growing in my brain! I don't know if I believe that. I also did read that there is no way to tell the difference from cancer without a biopsy... I'm still waiting for another doc appointment so he can explain how he can magically tell the difference.

Let me know what happens with you or if you get more info. There seems to be no info out there...

[ABlank26]

I don't know if either of you military members still get on here and read this, but I am so happy to have found this!

I am also a military member recently diagnosed with pineal gland cyst, I completely understand the frustration and difficulty with treatment, second opinion, etc.

I keep feeling very dismissed by my neurologist. Mine all started after a random visual disturbance on my computer one day.

If you still get on here I'd love to talk, please feel free to contact me

[jbny2076]

I had a bad vertigo episode in 2008 and had an MRI done to rule out stroke, etc. They found a 1cm pineal cyst. I freaked out of course. My Neurotologist and my Neurologist said not to worry about it. Fortunately, i have a world renowned Neurosurgeon in my area. I paid the $300 bucks and had him look at my MRI. He wasn't concerned and stated it did not cause my symptoms. Though if they do grow they can cause issues, (headaches, exhaustion,etc). The only way to monitor, per him, was to get an MRI every couple of years. He stated i most likely had it all my life and it has grown as i have grown. He is one of the few people, i feel, told me to not be too concerned and i felt like he was right. He is one of the few folks to have actually removed these. Definitely get a second opinion if you can. Just for peace of mind.

[ABlank26]

Thank you, as reassuring as it is, I still have to deal with symptoms day to day, fatigue, visual issues, random onset headaches, etc. Mine also told me it was nothing to be concerned about however I don't want to live with these symptoms. My neurologist told me to come back in 6 months to see if it's grown...and thats all...

[DClark1389]

Oh My Gosh!
I have stumbled onto this site and now I have found pineal gland cyst buddies!! I have had to do this thing all by myself up until now! I hope someone on here is still active and would like to talk about these things in our heads. I was diagnosed in 1996. Had to have brain surgery to place a shunt because my cyst was blocking the fourth ventricle and caused Hydrocephalus. I have had no problems with my shunt since then. I get my cyst checked every couple of years, but it has not went down and my ventricles are still large. Talk about visual issues....when it was really bad before surgery, I would see cars in front of me at an angle, I could see their left sides!! I have lots of stories and lots of experience...so ask away!! For instance, when I was diagnosed, pineal gland cysts were one half of one percent of all the brain tumors diagnosed in the USA, but twelve percent of all the brain tumors diagnosed in Japan!! So, not much is known about our type of tumor/cyst in America. The best advice I could give you is to have it checked regularly to make sure it is not growing, and take a Melatonin supplement to see if it helps with your sleep ( as suggested to me by a famous brain doctor), and report new symptoms to your doctor. Hydrocephalus was no fun. My shunt works well to keep that from happening again. Please let me know how everyone is doing. I wish you all the best in this journey.
Darleen

[Auntderder]

i was diagnosied sept 14 2010 with a pineal cytoma......i also was diagnoaied nov 11 2010 with chiari...my son also has chiari!! im in pain 24/7 my head my hands .my legs my eyes,,,,,numbness all the tim ein one place or another.....y hands will shake my eyes shake!!! i just pray something can be done bout atleast one o my issues !! but good luck to all