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I’ve recently experienced really horrible headaches on the left side of my head. I also had blurry vision and numbness… I’ve never had such headaches so I went to doctor . I had MRI done and doctor diagnosed Pineal Cyst. He told me that it is NOTHING SERIOUS!!! I’m going to have a second opinion in few days, but I’m interested if anyone else had same problem… Should I worry about this or this is really nothing serious as my dr told me???

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HI. I also had same problem and I was diagnosed with Pineal Cyst too. So far, neurologists are acting as this is not serious problem but somehow I disagree…. Personally, I am very worried… What is even worse, my dr. couldn’t prescribe meds for this problem!!!
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I actually saw a neurologist today for a Pineal Cyst and he told me these cyst can infact be dangerous even in rare cases deadly. Do a google search for Pineal cyst and headache and read over all the posts. The Doctor I saw today said most doctors will tell you its nothing but agreed with my thoughts on this cyst being the cause for all the problems I have had over the last few months. Headaches, blured vision, hard to focus, dizzy and nearly passing out, sleep walking and other strange things, ringing in my ears, stumbling and the list goes on. You need to find someone who is willing to take this seriously if you feel its a problem. From what I have read this can give you the same side effects a tumor would. I am about to go through an IVF procedure in three weeks to carry a child for a couple but he warned that pregnancy can actually cause it to grow. But the surgery to remove it is extreamly dangerous and most neuro surgons would not even concider it. Contact me, it would be nice to have a group of people who are going through the same thing.
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Alicia:

How big is your pineal cyst? Mine is 1.9 cm. I was just diagnosed in an MRI. I am scheduled to see a neurologist in Nov. That was the earliest available appointment. I have all the same symptoms as you. I originally saw an ENT because I had so many issues with my inner ear (dizziness, pressure, pulsating), which caused nausea and the feeling of wanting to pass out. He told me my ear was 100% fine but that I had a prominent Pineal cyst causing compression on my tectal plate. After reading more about pineal cyst -it's all starting to make sense. The discouraging part from my understanding is that neurologist don't take pineal cysts seriously. I'd like to know who your neurologist is, as he/she seems in the minority on taking this issue seriously.

Thanks,
E
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My husband is in the Army so the neurology referal was put in ASAP and I just happen to have a great Doctor here in Ft. Riley Kansas. I am going to be a Surrogate mother so my Dr. Made a point of getting me seen ASAP in order to continue and follow through with my IVF procedure. The Neurologist's name I believe was Dr. Young in Topika Kansas. If you would like to contact me personally I could be of more help and get the paper work out of the car when my husband gets home. Alicia.slater@gmail.com
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I found out 5 days ago that I have an 8mm penial cyst. After reading the other posts I am very confused. I see the neurosurgeon in a week and I want to know if this is causing all my symptons. From what I read most doctors dont think that it does. I know my body and when there is something wrong then I expect someone to do something about it. How do I accomplish this without turning really ugly on someone?! :!:
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BACK IN JULY, AFTER A SECOND MRI, I WAS TOLD I HAVE A 2 CM CYST ON MY PINEAL GLAND. I WENT TO SEE TWO NEUROSURGEONS AND THEY BOTH TOLD ME THAT THE CYST WAS BENIGN AND THAT IT HAS NOTHING TO DO WITH MY HEADACHES, BLURRY VISION, NAUSEA OR DIZZINESS. I GO FOR A THIRD MRI IN DECEMBER TO DETERMINE THE STABILITY OF THE CYST.
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I too have been diagnosed with a pineal cyst for over a year. THe doctor originally ordered a MRI due to migraines and put me on meds for them. That is when she found the cyst. I don't know the size or anything, she never has said. I guess that will be my next question. However, in the past couple of months I have noticed something weird with my eyes, I can't really explain, but I had my vision checked out and it was okay Never once thought it might be the cyst. Then since Christmas, it seems that I have become a total clutz. I have fell when normally I wouldn't. Do you think that is all related? I have more bruised on me, first I fell down steps, then off of a chair trying to get something off of my refrigerator, tripped going up steps. I am afraid to do much of anything. Sleeping isn't a problem, except I want to all the time. Sex is more of a problem, I am only 41 and could care less would cyst have somthing that would control that as well?
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WHEN WAS THE LAST TIME YOU HAD A MRI? I HAD A REPEAT IN DEC AND IT WAS STILL 2 CM, COMPRESSING MILDLY ON THE TECTAL PLATE, BUT NO HYDROCEPHALUS. I WAS TOLD THAT I WOULD NEED TO FOLLOW UP WITH ANOTHER MRI IN A YEAR, THEN IF STABLE EVERY 2 YEARS AFTER. IF YOU ARE NOTICING A CHANGE IN YOUR BALANCE OR BEHAVOIR, I WOULD HAVE IT CHECKED OUT TO ENSURE THERE IS NO CHANGE IN SIZE OF THE CYST OR HYDROCEPHALUS PRESENT. WHAT MEDS DID THE DOCTOR PUT YOU ON FOR YOUR MIGRAINES? YOU MIGHT ALSO BE EXPERIENCING SE FROM THEM. BUT IF YOUR LAST MRI WAS A YEAR AGO, INSIST ON A REPEAT. GOOD LUCK AND KEEP ME POSTED.
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I have been recently diagnosed with a 1.2cm pineal cyst also. I had Cushing's Syndrome, a left adrenal gland tumor that created over a 1000 times more cortisol than my body needed. In 1987 the tumor and gland were removed. Over a year ago I found out that my thyroid was going hypothyroid so I take the thyroid med now. I have a lot of cramping in my neck where the thyroid gland is. My right adrenal gland area feels lots of discomfort. I have skin disorders on face, hand, and foot. I have severe depression, panic attacks, ringing ears, visual problems, lack of sex drive, lack of appetite and all I want to do is sleep now. My joints are so inflamed, the pain is crippling now. The doctors I've seen act like this is no big deal, they just want to watch it. Is it because it is too dangerous to get to? It's very disturbing to think the medical professionals want to watch it grow. I thought there was something to take to shrink cysts. I haven't seen the neurologist yet, I guess they are busy doctors if it takes a long time to get into see one. When the gland went bad from Cushings, the other glands were affected, as they stop working all the time the tumor did what it did to me. It's amazing to hear a doctor tell me life should be back to normal....lol...have to keep a sense of humor here.
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My 9 yr. old son was diagnosed with a Pineal Cyst about 2 yrs. ago and 2 doctors said it was nothing to be concerned with. He was given the MRI because of his unexplained poor vision. Since then my son has been getting occasional headaches, his vision has not improved (the doctors said the cyst has nothing to do with his poor vision) and he has recently been diagnosed with OCD. He now has been hearing people, including myself, calling his name when nobody has called him. He thinks he hears his younger sister calling out for me sometimes as well. I am now wondering if his cyst could have anything to do with these other issues? Is there anybody out there that could inform me one way or another? I have read that there are procedures to treat a pineal cyst but I am not a doctor and have been unable to understand fully what they are and what is involved in the treatment. I find myself worried now and think that maybe the doctors haven't given me all the information I need. Any comments are welcome please! April
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My daughter is prone to headaches, but if she is hungry and she eats or if you give her some Motrin they go away within an hour. Last week for seven days straight she had severe headaches and then vomiting and a high fever. After 2 visits to the doctors office, I finally took her to our hospital that has a Pediatric E.R. They said that her headaches were probably from a flu. But, upon my insistance, they did a CAT scan and found that she had a small cyst on her penial gland. They too, keep telling me not to worry and that it is NOT the reason for her headaches.

We are still early in the process and she is scheduled for an M.R.I. tomorrow, which they said will tell us more about the cyst. Since I live in a suburb of Chicago her doctor gave me the names of three pediatric neuro-surgeons, two of which are at Children's Memorial Hospital, which is said to be one of the best in the area. So, after she gets the MRI I will make an appointment with one of them, if not two and am interested in knowing how they treat this cyst if it begins to grow. I read on line that with other types of brain cysts they can put a shunt in to let it drain but they didn't say much about this type of condition.

Through this process, however, I too have been very frustrated at how the doctors treat this as though it is nothing. Something very minor and while I am hoping they are right, as a mom I am still hesitant to believe them.

BriCo
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My 9 year old daughter is prone to headaches, but if she is hungry and she eats or if you give her Motrin they go away within and hour. Last week for seven days she had a severe headache that wouldn't go away. She also started vomiting and had a high fever. After 2 visits to the doctors office, I finally took her to our hospital that has a Pediatric E.R. They said that her headaches were probably from a flu. But, upon my insistance, they did a CAT scan and found that she had a small cyst on her penial gland. They too, keep telling me not to worry and that it is NOT the reason for her headaches.

We are still early in the process and she is scheduled for an M.R.I. tomorrow, which they said will tell us more about the cyst. Since I live in a suburb of Chicago her doctor gave me the names of three pediatric neuro-surgeons, two of which are at Children's Memorial Hospital, which is said to be one of the best in the area. So, after she gets the MRI I will make an appointment with one of them, if not two and am interested in knowing how they treat this cyst if it begins to grow. I read on line that with other types of brain cysts they can put a shunt into the head to let the cyst drain but they didn't say much about this type of cyst and how it is treated.

Through this process, however, I too have been very frustrated at how the doctors treat this as though it is nothing. To them it is something very minor and while I am hoping they are right, as a mom I am still hesitant to believe them.

BriCo
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Thank you for your reply. I have another MRI scheduled in about 10 days from now and I have contacted 2 doctors at Children's Hospital in Los Angeles. One is a neuro-surgeon. As soon as I get the information from the MRI and the doctors I will post again. Again, thank you for the reply. April
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I have had headaches, severe, and vision problems.
have an mri scheduled for this TUESDAY. I had an eye exam today and found my eye pressure is up.
not sure what is next, i cant take care of my family and work in field sales with my head, vision, and focus like this.
How do they remove the cyst? WHAT IS NEXT?
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