How big it
was and there was any calcification on your pineal cyst?? Thank you.
Having similar problems. I would like to know if your symptoms were resolved without surgery or if they continue.
What about when they are symptomatic? Headaches, migraine and cluster, vertigo, balance issues, nausea, pressure etc.?
Hello Beth,
I too am 44 and was recently diagnosed with a pineal cyst 5mm. I went to two neurologists who both insisted that this cyst is not causing my problems. I have been having blurry vision in my left eye, constant migraines, pain in the back of my head, dizziness, numbness on the right side of my face and pins and needles and tingling in both legs and arms. All these doctors keep insisting that this cyst is not causing my problems, well I seem to disagree. There are a few national doctors that will perform the surgery at a very high cost. But funny thing is the people that are having the surgery are fine almost immediately after the removal of the cyst. So how is it that it isn't the thing causing the problems? I am about fed up with it. I need to get another MRI with contrast which my insurance company will not cover for the neurosurgeon to even schedule an appointment with me. I am beyond frustrated!.....This is real and I am sick of it!!!
Thanks,
Michelle Florida
Hi I'm very similar to you. I'm 31 been disorganised with a 11mm pineal cyst. Had a ct scan in April 2014 because I was having headaches, and my left eye is slightly protruding (looks swollen) and felt like it was being squeezed (only slightly like if you held a Ping pong ball with you fingers and thumb). Ct scan saw the cyst dr said it was an 'incidental finding' and not related but they will do me a check up in 6months in the meantime she will refer me to opthomology for my eye..... When it got to October 2014 my eye is swollen most of the time worst when I'm tired and my headaches are bad, I had not been seen by anyone so I called my dr, they didn't put me down for my check up at hospital so they sent a request right away and 'aparently' opthomology have taken me off the list (not sure why and dr couldn't answer that). That brings us up to date to last week, had an MRI the repot went into detail on my 11mm pineal cyst. Dr thinks I have cluster headaches and is going to treat me as that. Iv been referd to neurology and I'm still on the wait list for opthomology. Feel a little like no one is taking me seriously I'm worried why my eye is doing this, all the pain is on my left hand side, that's where my headache is, that's where my swollen eye is, I sometimes get server cramping behind the backs of both my knees but it's predominantly the left side. Feel like I'm going insain
I am so sorry about your situation. I also have a pineal cyst. I have severe manic depression and high blood pressure. I never had insurance in my life before and had no options. The doctors should try and help us all instead of ignoring people's needs. It is extremely difficult if not impossible to get proper medical care without insurance. So many folks absolutely cannot afford it and there are no other options. Are you still having the same medical issues as before? I hope the doctors will listen to you and help you. I wish you the very best.
I am near the Rochester area and have been fighting for the last 3 1/2 years for someone to do something about my cyst. how did you make out? I see this was posted several years ago.
I have a 8mm cyst as well. All the same symptoms. I have been fighting for 3 1/2 year with no answers. I have seen numerous dr's and still nothing. I am researching a Dr. in Los Angeles just have to worry about money at this point. Have you had any progress?
Hi, I also have been diagnosed with a pineal cyst, seen various doctors all said not to worry... Seeing a Neurosurgeon tomorrow for the first time. Have headaches all the time, nausea, ringing in ears, can't sleep, always hyper and agitated most of the time. Hungry all the time too.... and cold.... tired - I tried to look for the Pineal Research Group and couldn't find it. How do I become a member. I really need to hear from others. It seems we all have the same symptoms but seldom do doctors take us seriously. I am 41 years old, have always had headaches but now the vertigo which has come and go during the last 4 years is back to stay... and heartburn.... Looking for answers, and pretty scared right now. Thanks for any suggestions. Barbara
Yes. I do. And I'm trying to do more research to see about a correlation.
changedotorg/p/david-cameron-mp-stephen-crabb-mp-jeremy-hunt-mp-we-would-like-britain-to-acknowledge-symptomatic-pineal-cysts-as-in-europe-and-the-usa-so-that-sufferers-get-the-treatment-and-support-they-deserve
Dear Sir,
I would definitely suggest to you to get another Doctor. It is far more dangerous to just
leave it alone than to try to get it out. Also, there are procedures now that are a lot safer than what your doctor has told you. I too have a pineal cyst that is almost as big as yours. If I had enough insurance I would definitely get it operated on. If my financial circumstances change or I can find a clinical trial for this condition then I will go ahead and do it. I feel that I only have one life to live and I don't want a doctor to
tell me that I am going to sleep and never waking up as my only option and neither should you. Get a second opinion and a third and fourth if necesesary.Please, for your own sake don't cut your chances for life short. As for enjoying your life and not thinking about it, it doesn't sound like the excruciating headaches you are now having from not doing anything about it and listening to a doctor who says one day you'll have a headache that you will never wake up from are allowing you to either think about anything or to enjoy your life on any level whatsoever.
I would definitely suggest to you to get another Doctor. It is far more dangerous to just
leave it alone than to try to get it out. Also, there are procedures now that are a lot safer than what your doctor has told you. I too have a pineal cyst that is almost as big as yours. If I had enough insurance I would definitely get it operated on. If my financial circumstances change or I can find a clinical trial for this condition then I will go ahead and do it. I feel that I only have one life to live and I don't want a doctor to
tell me that I am going to sleep and never waking up as my only option and neither should you. Get a second opinion and a third and fourth if necesesary.Please, for your own sake don't cut your chances for life short. As for enjoying your life and not thinking about it, it doesn't sound like the excruciating headaches you are now having from not doing anything about it and listening to a doctor who says one day you'll have a headache that you will never wake up from are allowing you to either think about anything or to enjoy your life on any level whatsoever.
I too have cyst at 11mm . Have your symptoms gotten better or worsened ?
Who performed your surgery?
how can i contact you?