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Users comments and reviews on article Pineal Brain Tumor: Patient's Perspective by Debbie Strange

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Debbie, I am so sorry to hear that you were diagnosed with this tumor, but what a wonderful way for you to deal with the situation! I think that research has probably helped you deal with it but more importantly it looks like you have put yourself in the position of having done something very altruistic for other people. Thank you so much for this because it is very informative. I am really pulling for you! Keep us posted on how you're doing, okay?
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I too have been diagnosed with a pineal gland tumor. Fortunately, it does not seem to be growing so I am ok for now, except for the usual symptoms of headaches. I don't know how long I have had this. but I suffer in my right ear severe tinnitus, and my left is fine. Sometimes it wakes me up at night. I was on Social Security for a while and applied for a disability retirement from my civil service job, which is pending still after nine years. The shock of learning this did not hit me right away---I found out from a doctor report mailed to me. I do have benefits with the VA, and they treated me for everything and now live a more normal life. I cannot do some of the work I used to, being that I was a radio technician. I cannot be expected to wake up at night to go fix radio problems after I have taken anti-depressants and sleeping meds. I am treated for sleep apnea, and depression as well. I can work in a more limited capacity now with some accomodations.
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I was just diagnosed with a cyst in my pineal gland which is 1.5 x 1.5 x .9 cm well-marginated no identifiable calcifications. The Doc said it has probably been there for a long time.A follow up MRI w/ & w/o contrast is recommended in 3-6 months. It was actually discovered during a period of chronic sinus infections and the doc started w/ a CT scan then noticed it. My neurosurgeon said they are very difficult to biopsy and would send me to an academic institution that specializes in these if it gets bigger for a biopsy. I am a 55 year old woman in generally good health. My doc said they only become concerned when they are 1cm or larger. Should I be worried?
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Thank you for this well thought out article which mostly speaks for so many of us. I was informed I have a 12 mm pineal brain cyst and I also have hydrocephalus. I find out 12mm= 1.2CM haha My opening pressure was very high on spinal tap. I am frustrated and running in circles thrown a few medicines and yet SO CONCERNED that symptomatic pineal cyst though rare if left untreated, can bring coma, seizures, etc whew! I'm too tired to go on and with nobody to help me. (5 neuros, 1 opthoneuro,1 endo,3 regularDr's!) My energy level is zapped. It will take a miracle of God for devine interventional some how. God bless you all. Lisa
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