MRI revealed pineal cyst/mass - anyone else?

Discussion in 'General Parenting' started by WNC Gal, Jul 18, 2007.

  1. WNC Gal

    WNC Gal New Member

    At first we were VERY alarmed to hear that our 14 year old daughter (who had a very rapid onset to her psychiatric issues starting 11 months ago), had a cyst/nodule on her pineal gland in the brain - revealed by an MRI. They are having her follow-up with a neurologist in a few weeks. But the research I have encountered stated that usually these are benign, and may occur in up to 40% of the population. While the pineal gland is primarily related to melantonin production and sleep cycles, if it grows in size, it will cause severe headaches, visual problems and will require treatment.

    So- this doesn't appear to be the cause of her unexplained onset of serious mood issues..... we STILL don't really have a diagnosis. Except that after 11 months on an assortment of medications, she is no better (and has some unpleasant side effects to contend with).

    Has anyone been on medications for nearly a year with NO improvement, but then had a medication change for better which resulted in dramatic improvement? We can only hope....
  2. Marguerite

    Marguerite Active Member

    "Benign" only means it's not cancerous, not likely to spread and grow in other places in nasty ways. A benign growth can still cause problems and need to be reduced or removed, though. It can still be putting out higher hormone levels, or blocking hormone output.

    All sorts of weird possibilities, which COULD still explain her symptoms. I remember when I was being checked out for enlarged pituitary (days before MRI) because I was producing too many of one type of hormone. If the pituitary HAD been enlarged that would have been considered the explanation.

    Fingers crossed!

  3. Sheila

    Sheila Moderator

    Definately understand why it would at first be alarming news!

    I can't answer your question, and have no personal experience with pineal cysts.

    I found "Unexpected findings on brain and spine imagining in children" at .

    I like to get information from more than one source though -- I've never found one site to give all information. lol Anyway, I'd google pineal cysts and do some research.
  4. Fran

    Fran Former desparate mom

    <span style='font-size: 11pt'>SMZdiver, I can't speak to no results in symptoms from medications after a year but I can share our experience with brains and cysts.
    My easy child developed anxiety. He was always a cautious kid but he suddenly was really phobic about planes. He started feeling little "shocks" in his system. He went into a major nosedive with his weight. Lost close to 60lbs in about 6months. I didn't think it was anorexia since he didn't really have anorexic behavior. He always felt nauseated. Of course, if you say that then I'm in denial so we were in the midst of a work up.
    When he had an MRI they found a fairly large size hole in his brain with a large double cyst filling it up. No one thought the "penny worth of seizure disorder" or the nausea were related.
    He had a grand mal seizure, surgery to open the cyst and relieve the pressure on his ventricles. When he got to his room after the surgery he said he was hungry for a hamburger and fries. He has never lost a pound since and we don't really know about the seizures since he is on medication. He has been seizure free for 2 yrs. No one knows everything there is to know about brains and how they affect other things.
    Surgery through microscope is a godsend for brain issues. He was home in less than 72hrs and has been on the mend ever since. by the way, he flies like a pro now. It could all be coincidence but I'm betting there was some correlation.</span>
  5. Steely

    Steely Active Member

    I am not sure I would be quick to dismiss this cyst as not being related to your daughter's psyche issues. Has a Dr told you it was nothing to worry about?

    I am not a Dr, but the brain is very complicated. Even a small blip within the brain, depending on where it is sitting, can cause problems. The Pineal Gland sits next to the Pituitary Gland, and therefore the cyst's pressure on the Pituitary could be stimulating some sort of excess in hormones, or not enough - or because the Pineal Gland helps set the Circadian Rhythm, it could be inducing S.A.D.....I mean, really, the list is endless.

    My Dad has a brain tumor - and although it sits in the left frontal lobe - there is absolutely no way for the doctors to know what functions he will lose. There is also a very high risk of serious depression with brain tumors - and it is the tumor that causes them, not whether they are benign or not. No matter what, a foreign body in the brain, can cause havoc with the whole body.
  6. TerryJ2

    TerryJ2 Well-Known Member

    You've gotten some great advice here. Way To Go!
  7. Pamp81

    Pamp81 New Member

    I am new to this forum and just saw your note. My son has a pineal cyst also, and has had a rapid onset to new psychiatric symptoms also. He is 18. Although most of the "official" info I read about these cysts say that they are not symptomatic, I am reading from way too many others who acutally have the cyst and have the exact same physical and some of the mental symptoms of my son. I firmly believe the cyst is causing many of his problems. Have you found any help? We are desperately searching for help with this, as my son has gotten much worse recently. He has chronic headaches, nausea, fatigue, among other things, including worsening Obsessive Compulsive Disorder (OCD).
    Thank you!