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Just diagnosed Pineal Gland Cyst/Chiari Malformation
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Just diagnosed Pineal Gland Cyst/Chiari Malformation

I am a 37 yr old female and have suffered from chronic severe headaches since I was 15. These headaches are debilitating and a major disruption in my daily life. However, as bad as they have been in the past I really never thought they could get any worse, but they have. It has come to the point where I can't get away from them and am in pain nearly every day.  On a trip to the ER about a year and a half ago I had a CT scan, but the ER doctor said it was clear. A week and a half ago, my family doctor ordered an MRI and found that I have a 1.7 mm cyst on my pineal gland and an insignificant chiari malformation. I have seen a neurologist who said that neither of these conditions is contributing to my headaches which are becoming progressively worse. I have been trying to find out as much as I can about what is going on in my head because I have not been able to work or take care of my family like I should and I need to find out how to fix this.  The doctor's answer is to medicate, medicate, medicate...I feel like a pharmacy. I am on 100 mg of Topamax 2x/day, 100 mg of Amitriptyline/day, Percocet every 6 hours for pain, zomig, imitrex...and the list goes on. I have read many discussion boards where other people seem to have the same symptoms with the same diagnosis. Is it possible that my headaches are as a result of the cyst? Or am I just going to have to live in pain and be drugged for the rest of my life?
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539750_tn?1226525277
Hi CG, I have Chiari 9MM herniation and did a follow up MRI to my DX four years ago and I was told I have a Pineal Cyst.  I am not sure what size the cyst is.  Today the Nuerosurgeon I saw said I could have surgery for the Chiari if I wanted.  Right now I don't know if my symptoms are bad enough, but today was a good day.  Maybe if I went in ona  bad day I would have agreed to have the surgery.  My symptoms range from: headaches/migraines, memory problems, blurred vision, frequent urination, dizziness, nausea, right arm pain, difficulty swallowing, stomach pains, GERD, Chronic Diharrea, and scoliosis.

All to which the doctor said might not even be realted to the Chairi and the Chiari and Pineal Cyst are not related...

I am too looking for answers and I wanted to say that I understand and I hope you get the help you need.
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Avatar_m_tn
I too have a Chiari I malformation that was diagnosed when I was 15, with a "slightly complicated cystic collection associated with the pineal gland".  I have memory problems, nausea, back pain, and debilitating headaches that vary in intensity at different periods of my life (I am 21 now and I remember having headaches as far back as 9 years old).  The pediatric neurologist I saw at the time told me my symptoms were unrelated and that I was just overstressed.  This "unrelated issue" response seems to be common among the Chiari community from what I've read.  I am still on the lookout for a neurologist who will take me and my pain seriously.  If you find one, or the answers you're looking for, then I'd love to hear your news.
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620923_tn?1393294254

  HI I hope u join u sin the Chiari forum-
http://www.medhelp.org/forums/Chiari-Malformation/show/257?controller=forums&action=show&id=257&camp=msc

I am ot sure which condition u r seeking help with the cyst or chiari, either way we r here to help offer our experiences and support : )
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Avatar_m_tn
I just read your post while searching for other medical info...I am 44yrs old, have Chiari I and "had the brain decompression" surgery in 2007.  I lived with insane headaches (ice pick like) for more years than I can remember. I too was told to medicate and accept the migraines.I found out in 1997 through an MRI that Chiari was a possibility but if I didn't have all the symptoms, don't worry about it?The headaches controlled my day for years. In 2007 i woke up with numbness on the left side of my head and face, blurred vision and ringing in my ears. I thought I was getting ready for a stroke.My head felt like I slept on an ice pack all night.The symptoms continued intermittently for weeks along with nausea, reflux, verdigo and severe memory loss (i got lost on a college campus that I knew like the back of my hand). I went to Johns Hopkins to see a specialist (Jon Weingart) who did a spinal fluid flow test.I had zero spinal fluid flowing to the back side of my brain and very little to the front.  I needed the surgery! Today, I do not have headaches unless I have a sinus issue or something meaningless, no numbness, the memory loss was semi permanent but I can live with that...I felt like a new person immediately after surgery! The hospital stay was 4days then home by myself with a c-collar for support for a couple weeks.I couldn't drive for a few weeks but felt great! I live an extremely active lifestyle and have 0 limitations.Every physician I saw before Dr. Weingardt said " so you have migraines, who doesn't?" and dismissed my concern. You know your body best, be your own advocate and don't stop searching for help!
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