Pineal cyst and various symptoms

Hi! My name is Diane and I was just diagnost in April with a 13mm pineal cyst. It started with ear pain last year and I thought it was my teeth. After having my wisdom teeth pulled the pain continued and went into bad migraines. I went to a ear, nose and throat doctor and everything came out fine. He sent me for a cat scan of my ears and that's when they saw the cyst. I went to my regular M.D. and she said it was nothing to get a second opinion with another ENT. He said everything was fine except for the cyst and sent me for an MRI and to see a neurologist. She also said my symptoms could not cause the migraines, eye pain, veritgo, ear pain, nausea and sleep disorder. I feel like I'm losing my mind. I saw a neurosurgeon at NYU and he is sending me for another MRI and an optamologist. He said that my cyst wasn't big enough to cause these symptoms. Also he said that pineal cysts are very rare and he has only come across 3 in his career. I'm sure that my eyes will check out fine as did the blood and urine tests. I can't drive that well and my head is killing me everyday. I have to lay down alot because of the dizziness and I can't function even in everyday chores. How am I supposed to live like this! I'm seeing another neurosurgeon today and I'm going to print out this site so he can see that I am not the only one and that these symptoms do exist! I know this condition is rare but you think that there would be a neurologist with better knowledge in this area! Thanks for listening and I wish you all good luck! We all need It!

Hi! My name is Diane and early april i was diagnosted with a 13mm pineal cyst. It started with ear pain and went to migraines and eye problems. I went to 2 ear, nose and throat Drs and nothing was wrong. The last one sent me for an MRI which came out with this thing. I saw a neurologist that sent me to a neurosurgeon. He said that the cyst shouldn't cause all my symptoms and is sending me to a optomologist and another MRI. What I have researched is that a pineal cyst (according to people that have it) can give you migraines, eye problems, dizziness, nausea, and sleep disorders all which I have. It's so bad I can not even function some days. I feel like I can not drive( like I'm drunk ,eye wise) headaches are very bad some days and other days there just there but not screaming like I have today. My vision is messed up every day and some days I can not even get out of bed because of the faint feeling I have. I have a husband, 2 boys and an 80year old father to take care of which I am finding very hard to do every day tasks. I really need help and do not want to feel like this anymore. I feel so weird and out of it and really need to get back to work, which I had to stop and to drive, which I had to stop. I can not live like this and I have an appointment to a second neurosurgeon today. If he tells me my syptoms are not related I think I will flip out on him! I did print some of these messages so I can show him and see what he has to say. Good luck to all and hopefully we can all get some answers.

i can relate to every one of you. my cyst was found back in 03 and foolishly i didnt get a follow up. ive been on hormones (birth control) for many years and recently was forced off of them bc my dr couldnt understand why i continue to have problems. i started my period when i was 10- i have an eye that doesn't move, since the removal of my iud my headache hasn't gone away. i have vertigo all the time. i cant focus- i almost feel im dreaming or like im drunk- its scary. im ALWAYS fatigued and find it difficult to fuction unless im on some type of "happy pill". im scheduled for another mri of my brain ASAP and getting a mri of my back bc the dr feels i could have arth. or something else. if you read the right info on the internet you will read how the pineal gland controls so much of everything else including the CNS. which my reflexes are off as well. i feel like i should be on disability and want to cry all the time bc of the painful headaches. its very hard to focus- even to type this. i constantly feel sick to my stomach and the overall feeling there's something wrong. my mom knows someone who had their cyst removed and from what i hear there's HOPE!!! i hope to have mine removed and finally feel the way im supposed to for the first time in my life. im only 28. ive always been a heavy sleeper and never feeling rested- i had a hard time reading and focusing and it's even worse now where it effects my job. to all of you- keep positive.. im trying :-)

Which doctor at NYU did you use? I too have a pineal cyst 4mm.

Thanks.

I am a 16 year old female with MANY fun medical issues.

I don't know if anyone is still reading these, but i have only today found this site. I just about cried, i don't know if it's because now i know that the symptoms i have been having might actually be related to the cyst in my brain.

my pineal cyst is 9x7x6 mm i don't know if that is big or medium, i've read about those with one's 2cm! but i just don't know.

my symptoms:
weak spells, sometimes just overall weakness,
fatigue spells, when these occure i HAVE to sleep
with both of these my arms and legs go a sort of numb, the only way i can think of to say it is my hands don't feel real, i can sorta feel if they are touched, but they DON'T FEEL REAL! (has this happened to anyone else??)
the back of my head will start to throb/pulse, i drop down saying only "ow ow ow ow ow!" going with my pulsating it goes away not TOO long after it starts
my vision blurs, i have bad eyesight as it is, -5.0, but even with my contacts in it will happen, or i sometimes can't focus my eyes, they will just shake and twitch, OR (most times) if i get up too fast sometimes my vision will go totaly dark, i CONSTANTLY see black sparkling specks( so much so i don't notice unless im asked)
CONSTANT! spine pain
will usually have a MINOR head ache.
occasionally get gag like.

HAS ANYONE HEARD OF THIS ONE....
i sometimes, not often, and it causes me NO issues, but it's strange and no dr. has heard of it....
I will hear and feel i guess this egg frying in the BACK of my brain, not head, brain. no heat, but it feels really weird......ANY IDEAS??????

Some side info is that i have what is known as Type 2 collagen, or RUBBER MAN SYNDROME. (ideas on that too would bee nice.)

Thank you to all who read this, and especially reply. I am kinda scared, but that's probably just meaningless paranoia. (or it's that i have SO many undiagnosed medical problems.......)

I too have a pineal cyst its 1.7cm and had 2 opinions. I'm scared to pieces and my nerves are getting worse. I have been diagnosied 1 month ago by having a MRI. I go again in a month for another MRI and was told they are just watching it to see if it is growing and just gonna continue to watch for growth. Its very little they will tell me about them. I'm having bad headaches and visual problems one of my doctors put me on meds,thank goodness and also on anti-depressions (without them I couldn't function) :-( It just seems like its not getting any better. Each doctor is telling me they don't believe the visual problems that I am having and headaches are not related... are ya'll having the same things fed to you about you symptoms not being related to the cysts???? If you have any information to share with me plz do, I would love to read up more on this and to have friends in the same situation as I am. I'm making so many mistakes in my work which I am a book keeper for my husband that he now has to go behind me and we've come to the conclusion to hire someone else to help me out. Its really bringing me down. I wish each of you the best of luck and God Bless each of you. Prayers be with you.

This is from the OHSU site this may help everyone suffering feel a little better and maybe you can enlighten your Drs about pineal gland cysts. pineal region tumors Many different tumors can arise near the pineal gland, a gland that helps control sleep and wake cycles. Gliomas are common in this region, as are pineal blastomas. In addition, germ cell tumors, another form of malignant tumor, can be found in this area. Tumors in this region are more common in children than adults, and make up 3 to 8 percent of pediatric brain tumors. Benign pineal gland cysts are also seen in this location, which makes the diagnosis difficult between what is malignant and what is benign. Biopsy or removal of the tumor is frequently necessary to tell the different types of tumors apart. Persons with tumors in this region frequently experience headaches or symptoms of increased intracranial pressure. Treatment depends on the tumor type and size.

One place that I found helpful was the website savemissy.com she had a "pineal gland cyst" I hope that Drs are reading these and keeping tabs on how many people have these cysts and how many people have the SAME symptoms and put two and two together....Good luck all....also look into the skull base institute in LA or go to research hospital sites and search for pineal gland cysts to find more info on them.

hi,
i just had an mri of the brain. two weeks ago, i suffered some vision problems and since then i have a horrible headache that will not go away. the past few months i have suffered from fainting spells. the mri showed a pineal cyst, i'm not sure of the size. the dr told me its nothing to worry about, but i can't believe that. i also suffer from joint, muscle pain and severe fatigue. i was diagnosed with fibromyalgia, but i am wondering if it can be from the cyst. having any type of cyst on any part of your brain is scary. it seems that drs. don't know alot about it. i live in new york. if anyone knows a good dr that can provide real answers, please let me know. good luck to everybode

Hi all!

So I went to the Skull Base Institute and had the pineal cyctic tumor removed 14 days ago. All went well and I am recovering well. I met Kelly tonight and it was so neat to meet someone who has been through the same things as you surgery and all it was so empowering. I hope everyone is doing ok and I am really going to try and educate doctors and radiologists about these cysts and tumors and their symptoms considering I know what they are I had one. If anyone here needs help or has questions please visit my website at kelsy.pledgepage.org or email me at **** I am here to help! Kelsy

**edited by moderator**

Hi! I am new here and wanting to find out about your symptoms? I have been diagnosed with a benign appearing pineal cyst with septation. I was told this had nothing to do with my symptoms, and will recheck again to see if there is any change. My symptoms are headaches, less sensation to entire right side of body, have had weird visions,dizziness. Also have alot of muscle twitching and cramping and pain, mostly on right side. also my right hand and foot are colder than left.
Have had brain MRI and lumbar puncture, the only thing that has shown is the pineal cyst. Right now I'm also going through gallbladder attacks. Waiting for test to come back for that.
I'm wondering if anyone else has had these symptoms with a pineal cyst?? I am going to check out Kelsy's website. Please reply anyone..
thank you
Tammy

Hello everyone- I too was diagnosed with a 8mm pineal cyst about 2 years ago, and my doctor told me that it was nothing to worry about at the time. But I too have had similar symptoms with severe fatigue, headaches, muscle and joint pain with left side weakness. I always want to sleep and can't get enough energy to exercise or just be my self. I have trouble concentrating and a horrible memory! All this and I am only 25yrs. I have also had cervical cancer, endometreosis, and newly diagnosed interstital cystitis. ugh! so i feel your pain. does anyone know a good doctor in the louisville area of Kentucky?

I have been told that i have a pineal cust it is somewhat large about 2.4cm i cant sleep and have been told i have fibromyalgia and im 17 year old male i have no idea how that could be, although it does run in my family, but i have had a constate headache for almost 6 months and i cant fell my legs at all, the docs have even put needles in them and moved them around i feel nothing. After reading what is on this web site that i should push for the surgery.

I waited until surgery was complete to make a post here. I hope I can share some useful information with anyone that is seeking it. I had no idea what was going on with me, but in september 07, I noticed a vision problem at my yearly eye appointment. It just seemed that I could not focus well. Within a month, I was starting to get pressure in my head. It would happen after sitting for a while and would get up to walk down the hall at work. The pressure would just come on and work its way through my head. I thought it might just be stress, as I had a lot going on at that time. I could stop and let the pressure pass, and then all would be fine. At te time I was concerned about blood pressure causing the symtem. In Jan of 08 I had an incident after working out at the gym. I felt extremely sick to my stomach, I set in the car a let it pass and then headed home. As I pulled out of the gym everything went bright white and I immeadiatly pulled over and rested until it passed. That was what made me decide a trip to the doctor was needed.

Some blood work was done and they sent me in for a CT scan and followed up with an MRI due to the discovery of a Pineal Cyst in the CT scan. The cyst was 1.8 x 2.1 x 1.8cm, so it was pretty good sized. The doctor in Cheyenne, WY, where we live refered me to A Dr. in Denver, who in turn refered me to a pedeatrics neurologist from childrens hospital. The reason being as this doctor had much more experience with Pineal Cyst. It took sometime, but I had surgery on friday to have the cyst drained and an extra drain hole added for the spinal fluid cavities. The cyst was big enough to block the flow of the spinal fluid, and the spinal fluid is what was causing the pressure in the brain.

After surgery I could already feel a difference of the state of my brain. I am at home now and still in recovery. The Doctors could tell a big difference from the after sugery MRI. They acted a little surprised at how much pressure they thought was there.

I know this is a little rough, keep in mind I am recovering from a form of brain surgery. The only real side effect so far is a little vision issue from blood pools in my vision. I can tell that is clearing and it has been worth it. Hopefully, if anyone has questions, I can help. Please feel free to ask and I will try to get back to you.

HOW BAD WAS THE SURGERY AND DID THEY GO FROM THE BACK TO GET AT THE CYST? DOES ANYONE NOW WHAT THE SUCESS REATE OF THIS SURGERY IS? AND HOW DO YOU FIND OUT WHO THE BEST IN THEIR FIELD FOR THIS PARTICULAR SURGERY?