I was dealing with severe headaches for many years, I would always attribute to my job and general stressfull life. On June 19,2007 I went to emergency room for another factors and after a couple of hours at the emergency room, I was informed by chief neurologist at that hospital that unfourtunatenaly I had 2 Pineal Cyst in my brain.....I was sent to the University Of Miami, where there was a Doctor with the experience needed to deal with the removal of these Cyst. After 3 surgery's and 6 months later I left the hospital still baffled as what happend in my life, since everything happend so quickly. I'm now at home not 100%, but thankful that I'm alive to be with my family,mainly my two daughters..
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Hi My Cousins been diagnosed with pineal cyst size (1.4-1.5cm ) , was revealed after a MRI/CT . She was having pretty bad Migraines and was Blacking Out frequently.
we are in the early stages of learning about this disease , can anyone explain what the surgery involves , what the recovery time is like and what or other complications could occur.Thanks
we are in the early stages of learning about this disease , can anyone explain what the surgery involves , what the recovery time is like and what or other complications could occur.Thanks
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I have a friend who told me he has constant headaches and recurring brain cysts. I didn't know what that meant so i di some research. So far im still dumbfounded. A recurring cysts would mean that it was drained or removed and then came beck or filled with fluids again, right? And this friend has a standing appointment, meaning it's once a week. Could this have to do with the brain cysts? And where can a brain cysts be? Anywhere or just the pineal gland? I'm confused and worried. I love my friend and dont wan anything to happen to them. They said they only had a 25% chance to make it to thirty. What does this all mean? SDoes anyone have answers for me?
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First of all, cysts can be found anywhere in the body and within the brain cystic masses can develop on many places. When a cyst appears near the pineal gland it is called a pineal cyst. This is a BENIGN lesion, and follow-ups indicate this further. When discovered, many doctors choose to scan with CT or MRI once more within the following year. If no or little progress, the evaulation is concluded.
This is nothing to be worried about, 5% of all of us carries such a cyst but we don't know since the majority never does a brain scan. So relax!
As to another question: Cysts that becomes large and are drained without applying a shunt within the brain can be punctured. Some cysts grows back, but this doesn't mean that your friend has cysts all over her brain. It does not mean that she will die at all. If they said so to her, maybe she has a very rare kind of cystic growth within her brain. Some tumors (malignant) have cystic components, and this can be it maybe? If so, oncologists are treating the tumor but once in a while need to drain the fluids out since she might be developing hydrocephalus.
So, to conclude:
* Pineal cysts are benign
* Pineal cysts are common
* Pineal cysts are almost always asymptomatic and require neither surgery or close follow-ups
* Pineal cysts are NOT cancer or a brain tumour
This is nothing to be worried about, 5% of all of us carries such a cyst but we don't know since the majority never does a brain scan. So relax!
As to another question: Cysts that becomes large and are drained without applying a shunt within the brain can be punctured. Some cysts grows back, but this doesn't mean that your friend has cysts all over her brain. It does not mean that she will die at all. If they said so to her, maybe she has a very rare kind of cystic growth within her brain. Some tumors (malignant) have cystic components, and this can be it maybe? If so, oncologists are treating the tumor but once in a while need to drain the fluids out since she might be developing hydrocephalus.
So, to conclude:
* Pineal cysts are benign
* Pineal cysts are common
* Pineal cysts are almost always asymptomatic and require neither surgery or close follow-ups
* Pineal cysts are NOT cancer or a brain tumour
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I am a 25 year old woman. I was diagnosed with a pineal gland cyst at 11 years old. I have been tracking them on a not so regular basis. I had a MRI 5 years ago and my most recent last week. My latest MRI has shown that my cyst has grown 4cm by 3cm larger. The doctor has refered me to a neurologist. Hopefully the appointment will be soon. Right now I am in limbo wondering the dangers or what the treatment options are. I have been researching on the internet of pineal cysts and find forums or info written in doctor lingo. If anyone has any information on or has been through this please email me at _[removed]_. Thank you.
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I'm a 40yr old male. 10 yrs ago I started having really bad headaches. So bad that my family would tell me I would cry in my sleep from the pain. I went to a neurologist and had a MRI of the brain and they found a pineal cyst the size of a dime in diameter. The first thing they did was throw one drug after another at it. I was so drugged up I was walking into walls and could barely talk since able. I went to several neurosurgeons and they all said the same thing. Treat with drugs surgery is not an option. They said my headaches were not caused by the cyst (don't believe it never did) they told me that I was not making serotonin due to the pressure on the pineal gland and was diagnosed with clinical depression and a aggressive anger disorder. Well I've been on social security disability for 9 yrs now and still have bad headaches everyday. I don't take the drugs they give me because I cannot function on them at all and cant afford them as well. Come on xanax 2 mil 5 to 6 times a day, sleeping pills, zoloft and many others, some that were later taken of the market. Now in the past 8mths to a year my vision has gone to the pits. I guess its time for another MRI ( who has the money for these thing even the co pay wow.)Oh, it seems i have more headaches in the summer then I do in the winter so some checking found the brain swells in heat and contracts in cold. I have also found out that marijuana reduces swelling of the brain to a point, one I found is enough to coup without taking all the drugs the docs give me. One I think is healthier because it is all natural! But it is AGAINST THE LAW !!!!! Just saying what helps me. Here until I die Nuckfut
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Hello. I randomly found this site when looking for info on a cyst in your head. For the past 6 or so months I have been feeling very strange. It seems to be getting worse. I have alot of pressure in my head but only on the right side. On top and in the lower to middle of the back the most. As crazy as it sounds it feels like my brain. I have some numbness in my face and recently my right eye is not working right. Its making me pretty nauscious as well. I had an MRI for something else last December and they found a cyst. They said it was nothing or usually nothing to worry about. HOwever, I know something is wrong with me. (they forgot to inform me I had a cyst until a week ago and said I think I need to see a neurologist because something seems wrong) Anyone have any suggestions, advice? Are these similar symptoms? I am really scared and don't know what to do but it's getting harder to function normally.
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This stuff is really weird! Some people get severe headaches at 2cm size. My cyst is about 28x18x18 mm and I have no symptoms at all. It stopped enlarging ~4 years ago. Some doctors would like to be more combative, others warn it's not quite a playground, so I wait quietly. So far so good.
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I've found a lot of info on pineal cysts since yesterday- when I was diagnosed- by accident, like most people of having one. Apparently they are much more common than we thought and there is one study which suggested that as many as 20% in a study of healthy people had one. Mine is apparently tiny, and I'm not sure regarding symptoms but have had a throbbing pain at the back of my head recently when exercising- this may be the tension in the muscles in my upper neck/lower skull but I'm getting referred to my GP anyway so I can keep an eye on it. The pineal gland is near the optic nerve which can explain why people with larger cysts have problems with eyesight. So if you are getting SYMPTOMS then get it seen to- if not, like me- just keep an eye on it, have a scan every 1-2 years to see if there is any change in size- and remember it is NOT cancer OR a tumour. Take care, Mark
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I seem to be in good company on here, I was dx'd first with a pit. tumor and then by the way about the pineal cyst, My pit tumor is 6x6mm and the cyst is 12x15mm or so I hope it still is, I have had multiple MRIs to check the pit tumor and been told many many times by a jackass neurosurgeon that actually laughed at my question about keeping check on the pineal cyst..like yea right, no worries blah blah blah..I have since then had growth in the pit tumor by 1mm all in all in the past year and I'm super worried about the pineal cyst growing and it seems I should have every reason to worry..I cope most days with massive migraines and on good days with "ice pick" eye migraines. i force myself to ignore most of my daily pains and issues and keep thinking its all part of getting old..I am only 30. I also have the whole thing that goes with prolatinomas with the hypothyriodism along with elevated liver functions for unknown reasons, super high cholestrol and cysts all over, thyroid, kidneys, ovaries and God knows where else..I am feeling really alone and worrying myself to an early grave..i have recently moved from NC to AR and lost my insurance which I had Medicaid, Im a single mother of two young girls..I am my families only income and don't know what to do. I work in the dental field and rely heavily on my vision which seems to be going as well...I hate what these little things can do..Anyone want to talk and help support each other or just vent, please email me at michelerevans at yahoo dot com. Thanks! Best of luck to you all!
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I understand Michelle how you feel. I am abnormal by the prior constant quotes of how RARE pineal cysts with hydrocephalus/Symtomatic. Really? I have a 12mm pineal cyst so why am I having severe hydrocephalus measured @45, sleepiness, confusion, vision blurriness and eye pain, personality changes, withdrawn, short tempered, which has NEVER been me, focus better at night, no energy whatsoever, I was a highly energetic professional lady and now I can barely function and no its not the medication I am on. I tried going without, doing my own clinical trials. I have searched high and low for a specialist familiar with treatments that actually work. I am on Diamox, Celexa, Gabapentin. I was taking topamax and fioricet ( stopped those on my own) along with the other meds. The horror stories on shunts scare the livin' tar outta me. I pray GOD help me. My Neouro's so far treat me as though I have a common cold. If ONLY they KNEW what was going on inside my mind. Can't believe it had taken me so long to type this and correct it when I used to type at 70 WPM :(
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I have read through the four or five pages of messages regarding pineal cysts and I am glad to read that I am not alone in my concerns. I have experienced severe migraines, dizziness, blackouts, double and blurry vision which have progressively worsened. On 09-11-08 I had a migraine hit me but I wrote it off to stress because of the approaching hurricane. I took the usual medication, Excedrine Migraine and then Zomig, but to no avail. The migraine got worse. Then finally on 09-15-08 the migraine subsided. However, it came back at 3:00 a.m. and woke me up. I took the medication and tried to go back to sleep. I took the Zomig at 6:00 a.m. and woke up again around 7:30 with numbness on the left side of my face, arm and my leg was going numb. I thought I was having a stroke! I was taken to the ER where they did a CT scan and lab tests. Initial diagnosis was TIA and atypical migraine and pancreatitis. I still had the migraine, nausea and vomiting, blurred/double vision and was admitted. I was given Vicodin, Toradol for the pain and phenergan for nausea. This medication did not touch my migraine. They performed a contrast MRI of the brain and an EMG. They found a pineal cyst. But when I questioned the doctor about it, I was told not to worry about it, everyone has one, it is normal. ??????? I do not know the size or anything else about it. What I do know is my symptoms: constant headaches, severe migraines with blind spots and flashing lights, vision problems, word recoginition and speaking problems, no energy (always tired and cannot get out of bed!!!!), withdrawal from social activities. After reading the comments on this subject I am going to take an aggressive proactive lead on my MRI findings and future medical treatment. I thank everyone for posting for their comments!
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I was wondering -
I have a 12mm pineal cyst with temporal pain and pressure even in my jaw. Is this from such a tiny cyst?
I have a 12mm pineal cyst with temporal pain and pressure even in my jaw. Is this from such a tiny cyst?
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I have a pineal cyst, approx. 1 inch in diameter. 5 years ago when I was diagnosed it was only 1.2 cm -- this from a doctor who swore up and down that they "don't grow".
Symptoms I was having 5 years ago and sometimes have now:
-dull migraines lasting 2-6 weeks
-occasional slurred speech, loss of feeling in my arm/leg, lack of depth perception, and severe vertigo
Now, I have fewer migraines (I usually know when they're coming so I can take preventative measures) BUT I am extremely sensitive to light. It literally hurts to open my eyes when it's sunny or bright out, and florescent lights make me severely nauseous. I also sometimes get this feeling as though parts of my body are not mine, kind of like they're floating and that my brain cannot control them - a disruption of proprioception. Anyone else have these symptoms? Oh, I also get violently ill from taking anything containing melatonin and have had sleep problems for about 6 months.
I've had two doctors look at my MRIs and both say that it's nothing to worry about, but that I should continually get MRIs each year -- how is that nothing to worry about? My main neurologist has told me that he won't even consider surgery unless it grows .3 cm, and that he expects it will shrink and "disappear completely" - Bull****
Any input?
Symptoms I was having 5 years ago and sometimes have now:
-dull migraines lasting 2-6 weeks
-occasional slurred speech, loss of feeling in my arm/leg, lack of depth perception, and severe vertigo
Now, I have fewer migraines (I usually know when they're coming so I can take preventative measures) BUT I am extremely sensitive to light. It literally hurts to open my eyes when it's sunny or bright out, and florescent lights make me severely nauseous. I also sometimes get this feeling as though parts of my body are not mine, kind of like they're floating and that my brain cannot control them - a disruption of proprioception. Anyone else have these symptoms? Oh, I also get violently ill from taking anything containing melatonin and have had sleep problems for about 6 months.
I've had two doctors look at my MRIs and both say that it's nothing to worry about, but that I should continually get MRIs each year -- how is that nothing to worry about? My main neurologist has told me that he won't even consider surgery unless it grows .3 cm, and that he expects it will shrink and "disappear completely" - Bull****
Any input?
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Hello to everyone,
I want to start off by saying that I wish everyone the best of luck. I am a 44 year old female that was diagnosed about 6 years ago. I had suffered for years prior to from severe headaches, memory loss, loss of concentration and vision problems. I was finally told after 3 MRI's that I had a pineal cyst that was approx. 6mm in size. I too was told by 2 Neuro's that I had nothing to worry about that my symptoms were not related. I did finally find a Dr that understood but said that surgery wasn't an option but to had MRI's 2x a year to monitor the growth.
I have had multiple MRI's and the cyst is approx. 1.5 cm. My symptoms have become unbearable. The headaches are crazy now, almost daily but I experience a hardcore, knock your socks off period that lasts about a week that I can't hardly handle. These episodes seem to happen about every 3 or 4 weeks.
I live in Florida and the doctors I use don't feel that surgery is an option. I would love to find out if anyone can recommend a good, experienced neuro that I can get another opinion from. If anyone has information (web sites) or can give a doctor's name I would greatly appreciate it. Please feel free to contact me via e-mail @ _[removed]_.
Thank you and hang in there to everyone, our symptoms are real and don't let anyone tell you different.
Thanks,
Beth
I want to start off by saying that I wish everyone the best of luck. I am a 44 year old female that was diagnosed about 6 years ago. I had suffered for years prior to from severe headaches, memory loss, loss of concentration and vision problems. I was finally told after 3 MRI's that I had a pineal cyst that was approx. 6mm in size. I too was told by 2 Neuro's that I had nothing to worry about that my symptoms were not related. I did finally find a Dr that understood but said that surgery wasn't an option but to had MRI's 2x a year to monitor the growth.
I have had multiple MRI's and the cyst is approx. 1.5 cm. My symptoms have become unbearable. The headaches are crazy now, almost daily but I experience a hardcore, knock your socks off period that lasts about a week that I can't hardly handle. These episodes seem to happen about every 3 or 4 weeks.
I live in Florida and the doctors I use don't feel that surgery is an option. I would love to find out if anyone can recommend a good, experienced neuro that I can get another opinion from. If anyone has information (web sites) or can give a doctor's name I would greatly appreciate it. Please feel free to contact me via e-mail @ _[removed]_.
Thank you and hang in there to everyone, our symptoms are real and don't let anyone tell you different.
Thanks,
Beth
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