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Thread: Old Colloid Cyst has moved and now a NEW Pineal Cyst?

  1. #1

    Default Old Colloid Cyst has moved and now a NEW Pineal Cyst?

    Hi all,
    I havent' posted in awhile but just got some weird news today and was hoping this wonderful community might have some experience with my issue. I was diagnosised in 2005 with a Colloid Cyst which at the time was very sympotmatic even though only 7mm. I went to Mayo, they told me to chill out and just wait and see...sooo 7 years later many of them headache free mostly....the cyst is still only 8 mm no big deal. I had my yearly follow up in Jan of this year, never heard back from anyone so assumed it was still stable and forgot about it. Well, I started having symptoms again a few onths ago which have intensified and after 2 full weeks of an unrelenting migraine decided to go pick up the report and look at it myself. I was shocked to read that the colloid has recently moved into the left formen of monroe and has caused about 5mm of widening there since the last MRI less than a year earlier. Additionally, and this is kicker...I now have 1cm Pineal cyst too! This pineal cyst was not there AT ALL in Nov of 2010, had the MRI in Jan of this year and ta-da a whole new (and rather larger) cyst. So, I was wondering, does anyone else have a colloid and also a pineal cyst? I feel very special to have 2 cysts but um, come on man, give me a break right?

    The reason I ask, is because I have been having terrible headaches and some vision changes lately. I had a spinal epidural done on my lower back due to horrible back and leg pain and numbness just 3 weeks ago after 6 months of back pain and leg weirdness. And now I have been battling a recurring or nonstop (depends on how you look at it) headache for 2 weeks straight. I've been through a dozen migraine pills, 2 bottles of nausea medicine, and a ton of pain meds. And yet, I feel worse, I can't sleep because the headache are much worse when I lay down (Colloid symptom) are always worse in the morning (Colloid symptom) and always in the back of my head (Collloid symptom). I know these to be colloid symptoms because my surgeon has told me they are, and that specific headaches like these are indicative of symptomatic Colloid cysts, regardless of size. But I know nothing of a pineal cyst, does anyone know if there are any symptoms for these cysts?

    Ugh, who even knows if any of this is related, my wonderful neurosurgeon is out of the country (seriously~ what timing I have!) and I am a little freaked out that I have 2 things growing in my head.

    Any thoughts and expierence greatlty appreciated!!!

  2. #2
    New Community Member
    Join Date
    Feb 2008


    Uh....I would be v-e-r-y closely monitored. If you now have an obstruction in the foramen of monro and you are having all those symptoms......I would have a neurosurgical evaluation ASAP. I don't know anything about pineal cysts, but it stinks that you have that as well. I was almost asymptomatic before I found myself in an emergency room back in 2008. It hit me very suddenly after a fall while playing hockey. Apparently the cyst got jarred into the foramen of monro and my ventricles started inflating immediately. If your MRI shows a blockage I would watch it very carefully.


  3. #3


    If your neurosurgeon is out of the country right now, I would say get to another neurosurgeon who can help you. This does not sound good at all to me, but I am just one who woke up one morning with the cyst blocking vision in my left eye.
    Neurosurgeon sent me directly from his office to ICU to await him rearranging his schedule to perform emergency surgery on me. He later told my husband, I was lucky to be alive with such a large cyst. Please, do not hesitate to seek help if you need it.

    Please keep us posted, and I wish you the Best, Dodi

  4. #4


    I agre with Dodi (hi Dodi) you need to see someone right away and tell then your symptoms. I had surgery with in a week of a positive diagnosis but saw a "quack" a month before who said all my symptoms were "psychological and do not doctor hop". This sounds serious just call and let them make the decision.

  5. #5


    I had a pineal cyst and a colloid cyst.. They were found in 2004 with an MRI. I had surgery in 2009 to remove the pineal because I had a 6 day migraine. I haven't had any MRI since. Now I just started getting short migraines in the lower back part of my head. I'm guessing its my colloid cyst, I forget which one is which.

  6. #6


    Hello, I don't know how old this post is - not use to this type of site. :) I have a colloid and pineal cyst as well. How are you getting on?

  7. #7
    New Community Member
    Join Date
    Jul 2009
    Cambridge UK


    hi there just

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