Diagnosed with pineal gland cyst

[coachlinda]

What symptoms can this cyst cause? My daughter has had muscle tension and aches from her neck to her legs for a while now. I have read that the cyst may cause such problems. She also has headaches sometimes on the side of her head. Does the cyst enlarge with time?

The cyst was discovered with an MRI her neurologist ordered.


This discussion is related to Pineal Gland Cyst.

[buffbarb]

I started having headaches, daily and neck/ear/jaw pain back in May 2010 - sudden onset. . Went to an ENT, a dentist, a TMJ specialist, back to PCP. In June started getting migraines - about 1-2x a week lasting for hours.
They did MRI in July and found a pineal cyst 1.2x 1.7x1.0. More tests, more meds, doctors telling me I've always had headaches, they were sinus headaches, that the cyst wasn't causing the headaches. Migraines were coming 3-4 times a week - lasting 6 hours or more, I was taking way lots of drugs and not functioning well.

Saw a surgeon at Barrows Neurosurgical in Phoenix (where I live) and she said we should rule out all other possibilities, try different meds. Of course good advice- no one wants a craniotomy right?
My MRI showed no hydrocephalus but mild mass effect on the tectum.

Went back to the ENT, saw endocrinologist, opthalmologist, two neurologists and tried 8 meds. Kept getting worse. September had more MRIs , they showed no growth- so we decided to wait and do another set of MRIs after Christmas and see if we could find meds to control the pain. Was having migrines almost every single day at this point.Also neck, jaw, ear and facial pain, some motion sickness too.

Was taking a ton of pain meds and topomax and imitrex every other day , sinus meds- you name it I took it and nothing was controlling it. Woke with a headache every day, was with me all day, went migraine at night. Was horrible and I'm no wuss when it comes to pain believe me.

I ended up in the ER Oct 18th with a migraine we couldn't stop. I literally cried for hours, two doses of IV meds, stayed in bed a week. Saw the surgeon & she read everything & said all conservative measures failed, she'd do the surgery. So on October 25th I had brain surgery. Posterior fossa craniotomy - so they went in from the back of my skull (which is why I still have my hair) , endoscopic tube up there and pulled out the cyst . And now five weeks later I have no more headaches, migraines, jaw/ear pain. All done. I do have alot of fatigue, some nerve pain which they tell me will go away (sharp stabby pains on the side of my head above and to the side of the incision) but totally worth it. I couldn't function with the headache- was in bed in the dark most nights, couldn't play with my kids, was pretty horrible. But I'm good now.

Was a scary month but have lots to be Thankful for. Great surgeon, great health insurance, supportive friends, family and church. Made it through and can now enjoy Christmas without daily pain. I'm on NO MEDS at all now except my thyroid meds and some melatonin for sleep (pineal gland controls circadian rhythms and sleep/wake cycles and still having sleep issues) and still some neck pain they think probably from scrunching up due to the headaches.

DO not give up. Read on pubmed.com and other published medical journals. http://www.ncbi.nlm.nih.gov/pubmed/18005138

Talk to surgeons. Rule out everything else it could possibly be and do not give up. I have complete resolution of symptoms other then the nerve pain which should dissipate with time.

Hope some of this helps
Barb
supersilks @ cox dot net  

[Jules77733]

I know exactly how you feel, except I can't even find a neurosurgeon in the area willing to give me 5 minutes of their time--just neurologists who are incredibly quick to dismiss any mention of a "pineal cyst". Like you, I never used to go to doctors unless I absolutely had to--and even then it was for things like sinus infections or a particularly nasty virus. I didn't start seeing specialists until my GP was confused about what was going on with me.

The best advice I could give you is not to give up, cliche as that might be. Are you seeing a neurologist regularly? I'd recommend finding one you can trust and like, and ask that they monitor your pineal cyst every 6 months - 1 year to ensure that it is not growing. In general, it's considered acceptable to live with the symptoms a symptomatic pineal cyst causes so long as they aren't life-threatening, rather than operating on it given its proximity to vital structures in your head.

At least your neurosurgeon recognizes that it's symptomatic! I've had just about every doctor I've seen tell me right off the bat that my pineal cyst is "not the problem" even though I've read plenty of journal articles that describe people having pineal cysts and my symptoms (indicating the possibility that my pineal cyst and symptoms are linked).

Your GP shouldn't be making the decisions about your pineal cyst; ideally, a neurologist should be. But if you aren't able to see a neurologist or find one you like, have your GP understand that the cyst IS symptomatic and must be monitored for growth at least yearly. You may also want to experiment with more migraine medication if you haven't covered the full spectrum. It took me some time before I found a preventative medication that works to cut back on my daily headaches (Propranolol) as well as the correct dose. I also recently began taking a medication for when I have an actual migraine (to stop the migraine while it's ongoing)...even though my neurologist has known about my migraines for two years now. This medication seems to be doing an ok job, but I might see if there is another one out there that would work better for me when I have an attack.

Hang in there and keep me posted on how things go for you. Just know that you're definitely not alone and we're all struggling with a similar battle that's not likely to ease up anytime soon. =(

[doureallycare2]

also just have to say that Im feeling pretty hopeless and am sure I will end up losing my job over this.

[doureallycare2]

I met with the neurosurgeon and here is the scoop, I have a 1.4 ct. symptomatic Pineal Cyst.   There is no blockage of fluids and he does not believe it to be life threatening. He very kindly gave me 5 min of his time, no test or even questions.  When he went to dismiss me after 2 min,  I told him of my inability to look up, the spots in front of my eyes all the time, my falling down and tripping because of dizziness and he said it can all be caused by high blood pressure (which I have never had). I have to have an MRI every 6 months to make sure it hasn't grown or isn't blocking any fluids.  For now they are going to try and treat the symptoms and hope at some point it becomes asymptomatic, the only medication that helps a little is the muscle relaxer to help me sleep at night.  Pain medication does not help and migraine medication does not help.  I’m making to many errors at work and have almost life anymore.  I guess like others on here I’m left in no mans land.  I have no idea what to do... I’m not the type of person to bug my general Dr since it took a lot for me to go there in the first place.  I’m meeting with her in a month to discuss it all but what will she do if a neurosurgeon wont do anything?

[Jules77733]

I'm glad to hear you had doctors willing to take care of your pineal cyst immediately--you had a quite large one, too! I don't have answers for most of your questions, but I do know that pineal cysts can, indeed, return...but probably not during a time span of 12 weeks. Usually, they return if they were merely drained...but it sounds like you had the entirety of yours removed, right?

Hopefully, it didn't return. With your headaches, however, you might want to request a follow-up MRI sometime during the next few weeks to be sure there weren't any surgical complications or new problems. It's also possible that you have headaches from allergies, or from your body healing. Or maybe you suffer from migraines for some reason.

Let us know what happens, and I hope you feel better soon!

[Frances123]

i had headaches that 3 motrin wouldnt kick anymore, headaches that were like tension headaches that got worse when i changed positions?  Then one day my R leg didnt move forward in a walking motion?  Freaked out called my primary doctor .... MRI 2.6cm pineal cyst with hydrocephalus had surgery in 1 week, stealth craniotomy inicision is above my R eye in my hair line, unfortunately 3 days later needed a ventricular peritoneal shunt.  Dont understand why when the cyst was removed that the CSF didnt drain correctly on its own?  Been 12 weeks later headaches are returning?  Tired of foggy head feelings and ready for follow up appt in June with another MRI.  Do these things return?  How long will the shunt work? Wish anyone who has to have the surgery the best of luck!!  Go gators!