How dangerous are pineal cysts

I have DXed with Chiari in 2005 and was told not to worry about it. My symptoms got worse so I went in for a follow up MRI a few weeks ago. Last Friday I met with an NS who told me I also have a Pineal Cyst 11 MM. I am going to have surgery for the Chiari but I am of course also worried about the cyst. I would love to meet with a qualified NS to discuss both my cases...

Does anyone know of a good NS in the Kaiser network?? Thanks!

Kim

28 year old female, dx 4mm pineal cyst
by neurologist, after MRI for headaches.

He said it wasnt a big concern and that its common among headache patients, and that I should go and get another MRI, in another year, to see if it grow bigger.

If it gets too big, then ya, then something has to be done about it, but if it stays the same size, small... then nothing, no big deal.

Also, I just started topomax and it has helped my headaches, also , Yaz the birth control pill also has helped my headaches as well, it has a mild diruetic in it so it helps the fuild pressure.

I do feel like there is an increase in pressure, puffiness in my face, jaw pain, head pressure, like there is brain pressure feeling going on when its bad. its like im doing a head stand or hanging upside down, and all the blood has rushed to my head feeling and my head feels like its going to explode,,, feeling, ya know...
also, my ears ring, rarely, but they drain when I rise in the morning for a min. and also after I eat. Just for a moment. Its a slight release of pressure. Dont know where that is comming from... My ENT said it could be shower water, but I dont thing so ... lol.

I am happy for your son but my son has had seizures since he was 4 months and the only dx given was a pineal cyst. He is 5 now on trileptal, MRI's and CT's let me guess not the pineal gland?

My cyst got found during incidental testing to find the cause of headaches,nausea, stroke like symptoms, loss of body control, and a random seizure. My doctor did not tell me about my cyst! I found it when I requested my records to see if I had lupus. the test results stated the growth of the cyst was increasing and the neurologist wrote must see every 6 months in red marker across the page and underlined it 3 times.
My doc kept telling me my problems were all in my head, and now they're all his problem for not telling me..No MD bills will be paid to him :-P What a quack!

Hi, I'm a 57 year ol woman who was just diagnosed yesterday with a 1 cm pineal cyst. 18 years ago I had surgery to remove a giant cell bone tumor from my sphenoid sinus. It is a recurring type tumor which came back a second time the size of a pea. I had radiation for 6 weeks to get rid of it. The radiation caused my pituitary gland to be damaged, so I was told to not get sick because everything would be pronounced. In other words take a long time to heal. The tumor came back a 3rd time and was devinely taken away by God. It had NOT returned since. I have had headaches ever since I had that tumor removal surgery, but nothing that I couldn't handle until recently. I lost my husband 6 months ago and thought it was all due to stress. I started having lightning strikes in my right eye, monstrous headaches, severe dizziness sometimes to the point when I could tell if I was upright or upside down or sideways. It only lasted about 1 minute but boy was it ever unnerving and scary. Some nausea with the headaches, my muscles would grab up all over my body, very painful, my arms went numb all the way to the tips of my fingers, and memory was very bad at times and just plain had no energy. I was referred to a Opthamologist because of the lightning strikes in my right eye, my doctor immediatley thought it was a detached retina. The Opthomologist did a thourough check and said the retina was intact and it all must be due to stress, come back and see him in si months. My regular doctor then sent me to a Neurologist and the Neuro ordered an MRI with and without contrast of the brain and cervical spine. The found some bulging in the cervical but also found a 1 cm cyst in the pineal gland. The Neuro said it was small nothing to worry about. Come back for another MRI in 6 months. What is it with these guys, you go for help and get sluffed off as if there is nothing wrong. There is SOMETHING WRONG, otherwise I wouldn't be here. The thing that concerns me is, Why am I having all this pain and problems with such a small cyst, and the large tumor I had in the Sphenoid Sinus didn't bother me , it actually was found by accident and I had to have it removed or I would die from it. I don't get it. How can something so small cause such a big problem. Can anybody tell me of someone to talk to that can explain all this and at least let me know how to handle it. I know the surgery is dangerous and so was the one I had 18 years ago. I am blessed to be here and be normal, I could've been blind, or a parapalegic or without being able to handle bodily funtions. Right now I am in God's hands, I would just like to know if there is someone that actually got someone to listen and help them to understand the whole thing . My husband used to call me groucho bear because I was grouchy alot I guess. If anyone has any info just write back on this website to grouchobear. Thanks, and God Bless

How big was your cyst???

I'm curious to the anything in common factor. How many of you use any kind of artificial sweeteners, such as aspartame, NutraSweet? There are indications that artificial sweeteners can cause similar symptoms. Even a stick of sugar free gum can cause migraine headaches and some people will drink several diet sodas a day. I would suggest eliminating all artificial sweeteners for a few weeks to see if that helps.

I am 54 yrs old and was diagnosed with a pineal gland tumor like cyst in 2001, it grew to over 2 cm and I had a craniotomy in 2003. But three months later it came back the same size but a little shorter in height. My neuro surgeon said he wouldn't touch it again becajse it is too dangerous.I have bad headaches which lately have been more frequent but there is nothing they can do so I just deal with it. I haven't had a MRI in over 3 yrs. but have thought about it because I have had some other symptoms such as a burning type of feeling that is kind of like the one I have on the right side of the top of my head, but this is on my right leg but has the same feeling as it does on my head, It is kind of like a burning ,and kind of feels like my hair is being pulled in a certain area of my head. I know that we are not promised tommorrow so I try to live like this is my last day becuse you never know.After finding about the pineal cyst and its return I look at life better and appreciate life more. Good luck with yours .Thanks for the info.

o.O My Name is D.J. and on May 1st 2009 my 40th birthday I went to the ER thinking I had a STROKE. After many tests it turned out that I have a PINEAL CYST. The Diagnosis that went with the cyst was CEPHALGIA PARESTHESIA. In other words I am partially paralyzed on my left side. I have to go to a NEUROSURGEON for help. what I am trying to say is do not take what everyone else says to heart. You are the only one that knows your body and what is wrong. If you don't get the answer you are looking for look harder. Every body is different so do what is right for you. Because I ignored the symptoms for so long I may not recover and never be able to walk normal or use my left arm again. PLEASE find the help you need !!!!!! Yes it may be nothing or you could end up like me. God bless all of you and I wish You the best.

Hi, my son was recently diagnosed by MRI with a 17mm pineal cyst, on the MRI it stated that it was 2 mm larger than a pineal cyst should be. He has a repeat MRI in 6 months...I take him back to the neurologist in June...He has had bad headaches for several months and seem to get worse, this is why they decided on a XRAY and CT in which was abnormal then the MRI and they found it...His grades in math have went way down this 9 weeks...His teacher is wondering if it is the cyst, no one will answer...but, I guess if your headache is so bad anyone can have trouble concentrating...They are doing an eeg next week, due to the fact the his 15 year old sister has had epilepsy seizure disorder since age 8 years and she had bad headaches to start....My son says it feels like a hammer hitting him on the brain and sometimes he complains that it is thumping and his temporal area is hurting

I am 32 and just recently diagnosed with P. cyst. I have been having symptoms for 1yr. My dr. didn't even act concerned. He told me about the cyst and then says I don't think this is the cause of your problems but am not sure end of conversation. I am stuck at home in bed most of the time, but feel guilty for being there. I have a son who is 5 and he dosen't really have a mom anymore. i neeed help and can't get it, i shake all the time and can only backspace so many times so sorry for any mispelling. I try to keep fighting but with no help it is difficult. this site has made me think that there might be help if i could only get the right dr. if anyone knows one in north carolina please let me know. thanks

I'm doing research on this Pineal cyst that was found when I went to the ER and they did a CT scan to check for a stroke.
Does anyone have constant ear ringing? I've noticed its gotten worse the past 2 years, it was only noticeable at night, now it's 24hrs/day. Also have really bad or weird vivid dreams, like watching a movie. I wake up with panic attacks. I've had problems staying asleep, I wake up 3 or 4 times a night.
I haven't had a MRI yet, this was recommended in 2006 but my dr said the cyst is probably nothing to worry about, but still recommended the MRI, my husband also told me not to worry since i didnt have a stroke and everything else was fine. It's May 2009 and I'm having more physical problems, especially on my left side, my eye sight is worse in my left eye, sometimes i can feel pressure behind my eyes.
I'm not sure what to do at this point. I'm worried that its grown bigger the last 3 years.

Seek-out a couple of specialist, and ask your doctor if you can share your contact numbers with some of his pineal cyst patients… who would be willing to talk with you. That is what I did after I was diagnosed with a pineal cyst & a meningioma in 1999. They were discovered after my doctor tried many different treatments for my worsening “migraines”… they seemed to have changed, to the point I could not exercise or lay my head down… etc. Before the meningioma was removed completely in 2000, I successfully practiced biofeedback (after I received training from a specialist) to deal with the pain, because I have never been able to function well with pain meds. A bi-annual MRI is done to check for re-occurrences… at this point no re-growth has occurred. J It was recommended that I do nothing for my pineal cyst, since no problems have occurred. Since 2000, I have been able to continue my fulltime career, raise my children with my husband, continue my education and hobbies, but it was discovered that many other little physical conditions were the result of the newly discovered polycystic kidney disease… which may cause a variety of cysts to occur through-out the body.
Ringing in the ears... could be a symptom of lots of things... I started to notice it before I had the surgey & I still have it, but I just turn on music or a fan or something to get distracted from that high pitch... I have learned to ignore it... but now I need hearing aids, according to my audiologists.
Anyway… try your best to enjoy life!

Thanks to all who have posted a message on this site. It has made me feel better to know that other people have had this condition and many of you have beat it.

Regarding symptoms, I have had many of the same ones you all have expressed. Someone recently mentioned ringing ears...yes! I have that too.

I have a meeting with a neurosurgeon today, so I hope to have a plan of action soon. God bless you all.

I am 43 yrs old. I have had problems with my eye site in last yr. I am going through change of life and having problems with memery and cant go to sleep til it is daylight, thren i get my best sleep. but then i dont even want to get up. I can sleep for 18 hours. I went to the doctors several times because i thought i was having heart attact 2 times in last 2 years and have had problems with bload pressure and mood changes.....i found out i have a penial cyst 1 cnn. My doctor says it is not cousing my head aches...then what is going on. Every thing i have found out so far makes me say ohh my goodness thats what is causing this.......is it? my doctor says NO...I have no insurence...they wont do nothing or send me no where