Calcified pineal gland

I just found out that I have a clear pineal gland mass, about 1 cm, which is causing some compression.
I’d be so incredibly grateful if anyone who has gone through something similar could reach out and share their experience with me.

Steven Reyes32 said:I just found out that I have a clear pineal gland mass, about 1 cm, which is causing some compression.
I’d be so incredibly grateful if anyone who has gone through something similar could reach out and share their experience with me.

Well, clearly we are the only ones here...
Mine is about 4mm. I found out during my fourth month, and I am sincerely hoping it just disappears on its own. Really hoping! 😢

Steven Reyes32 said:I just found out that I have a clear pineal gland mass, about 1 cm, which is causing some compression.
I’d be so incredibly grateful if anyone who has gone through something similar could reach out and share their experience with me.

A 1 cm cyst with compression??

Look, that needs to come out. My daughter actually had a pineal cyst too—even bigger than yours—and it was compressing things just like yours is.
I don't know what your symptoms are like, but she was dealing with constant headaches, sleep issues, and her condition just kept getting worse by the day.

Bottom line: you need to see a neurosurgeon. I highly recommend Dr. Josip Paladin. Don't worry, he'll get you in as soon as he sees what you're dealing with.

...mine is 1.5 cm and it's compressing the upper vertebrae

Mine grew from an average of 5 mm to about 6x7x5 mm over the last year. Honestly, though, the MRI report doesn't mention anything about any compressive effects at all. I managed to book an appointment with Dr. Vukić over at Mayo Clinic for December 22nd, but until then, ☕ my head is absolutely killing me. It happens every other day when the pressure shifts, and pretty much every single day after that. It’s just this kind of pain where I can't even function—I have to just retreat into a dark room and bury my head under a pillow. Does anyone else deal with that? Also, I've noticed over this past year that my night vision isn't great. I almost caused a fender bender recently because I totally missed a turn into a side street, so now I don't even drive once the sun goes down!

I’m currently under Dr. Melada’s care, and I've been getting an MRI at the Neuron clinic with Dr. Radoš every three months. On my first scan, the size was 12mm. Three months later, it grew to 15mm, and after a full year, it's still holding steady at 15mm. I'm taking a low dose of Trileptal—an anti-epileptic—to manage orbicularis oculi spasms and blepharospasm. These usually kick in during intense headaches due to facial nerve damage from childhood facial paralysis. Right now, the headaches are much more manageable, and I've stopped winking uncontrollably at everyone around me 🙂...Trileptal helps, but when those killer headaches strike, I either crush them with Maxalt or end up parked in a hospital for a day on a dexamethasone IV drip. My field of vision is narrowed by about 30%, and I'm dealing with double vision and blurriness. My ophthalmologist mentioned there's a chance things could improve after surgery, provided they don't get worse in the meantime—like developing Parinaud Syndrome or hydrocephalus if the cyst blocks the CSF flow...The current plan is to hold off on surgery. The neurosurgeon recommended that as long as I can control the other symptoms and disturbances with medication, we shouldn't touch anything; we just keep waiting and monitoring...By the way, the MRI also showed a hypertrophic cortical vein in the right temporal region, which is likely a vascular malformation they typically leave alone, along with some enlarged perivascular spaces...

Hey there.
I’ve been living with an MS diagnosis since 2008. It started as a random finding on a brain MRI—a pineal gland cyst measuring 8mm. A year later, a follow-up scan showed it had grown to 10mm. By 2010, the MRI showed it hit 12mm and was pressing against the superior colliculi.
My neurologist tells me not to sweat it, claiming this is a totally normal occurrence in plenty of people. I don't buy it. It doesn't feel "normal" to me, and honestly, looking at my symptoms, I can't tell if they're coming from the MS or the pineal cyst...

Let's get this thread moving again.🙂

I just got my brain MRI results back today...

Among other things, it mentions:
a cystically changed pineal gland measuring 12x10 mm...
then there's a retention cyst in the right maxillary sinus at 13x7 mm, along with mucosal edema in the left nasal passages...

Has anyone here dealt with similar diagnoses?
For years, I’ve been struggling with headaches that just won't quit. Usually, my only option is heading to the ER for injections. It seems to be getting worse every single year, and this was actually the first MRI I've ever had done...

Does anyone know more about what this means?

Thanks...

Nothing, nobody??

I've got a neurology appointment lined up, but it's two months out...
I've read a bit about this, but honestly, everyone seems to have a different opinion....

I’m bringing this topic back up because I’d love to hear from anyone who has gone through surgery for a clear pineal gland. If you've had this done, what was the actual procedure like and how long did it take you to feel like yourself again?
Has anyone here dealt with this?
What kind of symptoms were you experiencing beforehand?
It feels like there is such a massive shortage of reliable info online about this specific issue, and since there are so few patient stories out there, I'm just hoping everything turns out okay.
Thanks so much!

I ended up having surgery to remove a pure pineal gland tumor... under the care of Dr. Josip Paladin... As soon as he took one look at my MRI, he told me the thing had to come out immediately. I got the initial MRI results about five months ago, and by June 24th, I was already in the operating room. I was only 18 at the time—had a craniotomy performed. I spent a total of 10 days in the hospital... I was on Tegretol for about a month afterward, but nothing else since then.
Everything went incredibly smoothly, and honestly, I haven't dealt with any lasting side effects.

slytinker18 said:I ended up having surgery to remove a pure pineal gland tumor... under the care of Dr. Josip Paladin... As soon as he took one look at my MRI, he told me the thing had to come out immediately. I got the initial MRI results about five months ago, and by June 24th, I was already in the operating room. I was only 18 at the time—had a craniotomy performed. I spent a total of 10 days in the hospital... I was on Tegretol for about a month afterward, but nothing else since then.
Everything went incredibly smoothly, and honestly, I haven't dealt with any lasting side effects.

Hey there, do you happen to remember how large the cyst actually was, or any specific details from those scans? Did you experience any particular symptoms or issues beforehand? How did you even find out the cyst was there in the first place?
After years of battling constant, debilitating headaches, I finally went through a full neurological workup back in 2015, and it turned out I have a cyst on my pineal gland. The thing is, three different neurologists have looked at it and basically told me the same thing: it’s too small to matter. According to the MRI, it isn't putting any pressure on anything and shouldn't be causing issues. They think there's no reason to check it more than once a year—just keep an eye on it and move on. But honestly, I feel terrible. My ears are constantly ringing, I'm dealing with dizziness and instability almost every single day, I have this heavy pressure at the base of my skull, and the headaches still hit me from time to time. Now, I do have neck issues, so maybe that's what it is, but I'm really curious to know what led your doctor to say you needed urgent surgery. Thanks! 🙂