I have just been diagnosed with what they think is a pineal gland cyst. It is about 1.8 cm. I have a lot of the symptoms discussed on earlier postings - severe headaches, nausea, vomiting, dizziness etc. I am also worried that they are not 100% sure that it is a cyst and not pineocytoma. How do you get a difinitive diagnosis on this? What can be done about the cyst? Also, it has been there since 2004 and grown from 5mm to 1.8 cm.
I had the surgery five weeks ago - no more cyst. no more symptoms. Go figure.
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.
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