Pineal Gland cyst

[sistam]

Does anyone know how often pineal gland cysts should be rechecked to check for growth?  Also what size do they have to be before causing symptoms?  What does septation mean in a pineal gland cyst and is it normal? I hope someone can answer my questions. I have not been givin the chance to ask a doctor yet. Please any info would be great!

[Initike]

Hi!
I was just wondering: Those you have met, who have had their cyst removed, how was the operation performed? I have a pineal cyst, and was just in to see a neurosurgeon about removing it, and I was shocked to hear that he want to perform a major surgery, going in from the back of the brain. Have you heard of other methods to perform this kind of surgery?

[lilithue]

lol - just diagnosed with a pineal cyst. I've had migraines my entire life and in recent years have been getting nausea and numb arms as well as jaw, neck tension  and shoulder tension. There is a constant dull ache behind my eye and now at least I know the cause. My story fits so well with every one else here that we all can't be wrong .........I'm still to find out what the next step in the process is but figure it will involve a neuroligist. oh well could be worse.

[shuntman]

Thanks for the story. I have had sudden onset of symptoms starting in June of 2010 and after complaining of headaches, and blurred vision I went to the eye doctor, who referred me to a retinal specialist, who set up my MRI (Feb 2011). After getting the phone call from the retinal specialist and scaring me to death, I was then referred to a Neurosurgeon. The Neurosurgeon told me it was no big deal, although my cyst measures 18mm x 12mm. I have since sought a second opinion from a neurologist whose opinion is that this is more than "no big deal" and is referring me to another neurosurgeon. What scares me the most is why I suddenly started having problems. I have not had a second MRI yet, but with its size on my 1st MRI, if there is any growth, I will most likely have to have surgery. My second MRI is scheduled for May 2011.

[buffbarb]

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.

Hope some of this helps
Barb

[Jules77733]

There aren't any remedies that I know of...but I wanted to comment that I also have headaches while sleeping and I'm happy to hear that I'm not the only one. More often than not, I wake up in the morning clutching my head; it's rather odd. I usually having dull headaches in the morning, too, in addition to many of the symptoms you've mentioned. I just wish there was an easier way--aside from brain surgery--to fix this problem!

[dazedndizzified111]

I am so glad to have found this website.  I was becoming so paranoid that I was the only one in the world with these strange symptoms.  I have the dizzy spells,headaches daily (even headaches while sleeping), lightheadedness, strange "hang-over" feeling, color changes in my vision, fatigue, etc...  I began having problems 7 years ago and had a couple MRI's each showing a pineal gland cyst, and optic neuritis.  Back then the cyst was said to be 3-4 mm.  I have suffered over the years but recently had a terrible dizzy spell lasting 2 days.  I work for a neurlogist and I decided to see him as a patient.  He ordered another MRI ro R/O MS.  It showed the pineal cyst now measuring approximatly a cm.  So,obviously its growing,  Everything else looked normal.  
I think my husband feels like I'm a hyperchondriac.  But most days I do mot feel good.  It's definitly affecting all aspects of my life.  I'm  tired of never feeling really good.  
If anyone has any NEW information,please share.  I take Treximet as needed, Ibuprofin constantly, and my Dr. just prescribed me Diamox??  (I haven't taken it yet because one of the side effects is DIZZINESS!)  I have also been taking Melatonin (20mg) which does seem to help me with my sleep.        
If anyone has any remedies that seem to help,please share.  :)