How dangerous are pineal cysts

I was diagnosed with Pineal Cyst in 2004, my cyst has grown. From my research GOD doesn't put anything in your body that doesn't serve a purpose first of all. :-D If you check this gland out it is responsible for helping with the process of the hormones in your body. Every organ in your body is regulated by hormones. If this gland is effected some way then it can throw off the hormonal process which sometime can be found by a blood test. There is no test I have found to measure the melaton that the pineal makes. If that is affected then how can messages and hormones get regulated when this could be short circuiting and not be found. o.O I have suffered alot with my process and have had a brain map done to show how this pineal is affecting different parts of my brain. I think people need to take a second look and not just listen to the first Neurosurgeon. I have heard of wanderful results with Doctor in NY with treatments. I feel for some folks it can cause problems but for others it does nothing but DO NOT make the mistake if you are having problems not to get this gland checked out!!!
BLESSINGS XD

Hello all. I was intrigued to find new postings on this site. I am a 30 year old female. I was diagnosed with a 1.4 x 1.4 cm cyst in March of 2007. I had two seizures before the surgery. One in 2000 and one in 2006. My migraines became weekly after my second seizure in November of 2006. The first Neurologist I went to said that seizures were normal and can come with age. The second Neurologist showed me the picture of my pineal gland cyst compared to a normal pineal gland. The difference was signifcant. She said that it was not the cause of my symptoms and put me on Lexapro and Nadolol (beda blocker) at night. These did help the migraines, but did not take them away. I was also having eye trouble, double, and blurred vision when a migraine was present.
I had two opinions from Neurosurgeons as well, one in Washington and one in California.
After being told that you are ok and to ignore the cyst so many times, you have to take your health into your own hands. It is important to continue looking...do not give up...until you find a doctor that is pro active and willing to help!!
My biggest fear was that I would be driving with my son in the car and have another seizure. The doctors said if I had one more seizure that I would be put on seizure medication. Who wants to live there life in fear or in pain?
Thankfully, I found a wonderful institute in L.A., California. It is the Skull Base Institute, Dr. Shahenian was my doctor. My surgery was performed on August 27th, 2007. Last Monday was three weeks and I am feeling so much better! We found out during surgery that it was not only a cyst. It was a cystic tumor. The tumor had grown into my pineal gland. The doctor said it had most likely been in my head for 20 years. It had calcified, meaning it had calcium deposits around it. He said he believes this was the core of my symptoms. Although, in our medical field, even he can not say that 100% for liability reasons. I feel as though it was, I am finally feeling like myself again. It will take some time to get completely back to yourself, in my case this had been on my gland for most of my life time. The doctor said I would not have outgrown the cyst/tumor. It would have had to come out sooner or later. So, I feel very grateful to have had it done now while I'm still young.
I would love to help if you would like to talk, please email me at _[removed]_. Best wishes and take care of you!
PS - The procedure I had done was an endoscopic removal of the cyst/tumor. I only had 7 staples (two inches) at the base of my skull. The recovery time is cut in half with endoscopic procedures, as well as the risk of complications.

I'm sure that you're aware that 'tumor' is Latin for 'swelling' (one of the cardinal signs of inflammation). A swelling (tumor) doesn't necessarily indicate neoplasia. Nowadays, 'tumor' isn't used to describe non-neoplastic lesions, but since you're splitting hairs, a cyst is technically a tumor.

I have had many headaches over the years and have had several CT scans and MRI's last October I had another MRI and this time I was told I had a Pineal Cyst. Why they haven't found it in the past years I am concerned. As I has Post LP the year prior and had many test done at that time and they did not find it. I was told by my doctor I must have hd this since I was little. I do not believe that as I think they would have found it before. It is October 2007 now andI have the worst pain. I have ever felt in my life in the left side of my head it started off feeling like a pinched nerve and now the pressure is unbearable. My doctor will no do ay more test as he feels I have had enough over the years that the radiation is not good. Have any of you ever experienced this type of pain I have had it for a week now and nothing helps I have taken alot of pain killers and nothing seems to work. I feel dizzy and I am always tired. I had to take the week off of work.

Hi

I was just diagnosed with a .4 pineal cyst. Last year I was very dizzy for months and had a lot of pressure on my temporal areas. I went to the EMT and she said I had TMJ? Now I am thinking could the headaches and dizziness be related to the pineal cyst? Or is it too small to effect me? OR is this a progressive thing?

I have alst been diasnosed with a pineal cyst and Chairi malformation. I've seen many many doctors about the cyst, and all seem to say the Pineal glad doesn't do much besides maybe secrete melatonin so the cyst should not be a problem unless it continues to grow. The Chiari however is a very different story. You really need to get it looked at by someone who's had lots of experience with Chiari. I was diagnoed in 2005 with Chiari. I had severs headachs everday, loss of sensation in my arms and hands, neck pain, trouble focusing and consentration, memory loss..etc. They say there are 85 known symptoms in Chiari. I had surgery in early 2006 becuase I kept searching for someone to listen to me and help me out. You really have to be proactive with Chiari because you will get many doctors that don't believe in the surgery. However, if you are this symptomatic it would be very beneficial to look into/have. I was only in the hospital 3 1/2 days for my Chiari surgery. A good website to go to is conquerchiari.com. You can get lots of help and information and read about others stories. But the sooner you get help the better you will recover and less residual side-effects you will have! Good luck!! if you need names of some great doctors you can contact me...


**edited by moderator**

I am a 35 year old female, choir director at a Middle School jazz singer, wife and mom. My headace came on 10-18 and literally has not gone away since. Vertigo came a week later. The pain and dizzienss is so severe, I can barely function. (Typing right now is taking all mycnacentartaion.) In addtion to the pain, (I had a week long identical paing in the summer that went undiagnosed), I am weak, and have even had a complete black out for 36 hours. (I remember gettting home from school with severev stgomach pain/nausa and then the following night waking up in the ER, thinkin g I had school the next day because my Friday had disappeared.) Not knowing how you will be from day to day is the worst. (Not including the constant pain and dizziness.) I was just diagnosed today with a pineal cyst, but have no specific details --- I get to wait 2 weeks to hear all of that from the neurosurgeon I have been sent to. I am in Tidewater, VA and my neurologist does believe the cyst and symptoms are related (I have read other posts on other sites and the stories some people have been through make me realize I am lucky to have a sympathetic DR.) The Dr. told me today I cannot work for now, due to symptoms and the meds I am on (Depocote, prednezone, fiorocet, and xanax). I don't sleep and am never truly pain free. I would have the surgery tomorrow if I could. I can't imagine having this for much longer. FYI: Vicodin and Percocet did NOTHING to help! It was like taking water. Depocote hasn;t helped either, but today was my 1st day doing the whole cocktail. We will see if they help things soon. I also don't know if I have hydrocephalus. He said the gland was "swoolen" and that I had a xyst, so I don;t know if these are seperete or conncected. I guess I will see in 2 weeks....
PS -- Sorry for spelling. I can't spell check, and being a teacher, I don't want you to think I can't spell. But concentrating enough to reread and make changes is too much right now... Hopefully you will relate and not think this a cop out!

Are you a neurosurgeon? Or are you just finding your information out online like most people? Do you have a pineal cust or tumor? If not why are you putting your two sense in this forum? I have a pineal cystic tumor also that measures 1.9x1.8x1.7 cm the reason the Dr uses the word cystic tumor is because it may have some fluid but it is not only a fluid filled sac it does have some cells in the middle that are nodule or atypical. Like mine are. There is no way to really tell from an MRI the difference between a Pineocytoma and a pineal cyst. So yes there is such a thing as a pineal cystic tumor if you don't think so you have many NEUROSURGEONS to educate then>>>

I too have a pineal cyst measuring at 2.1cm with small nodules inside of it. What are they doing about yours. Do you experience any symptoms such as frequent headaches, dizziness, etc.. I was told that it is benign and they were not going to remove the cyst unless it was to get larger or I deveolp hydrocephalus. I been to 2 neurosurgeons and they both told me not to worry about it. I have to have a follow up MRI this month to check on its growth. I'm just curious on what you have been told since your cyst is around the size of mine. Please let me know. Thanks

KMS

I am 41 years old and was diagnosed with a pineal cyst 2 years ago measuring 2.3 cm. I was told not to worry about it. 2 years later I ended up with severe headaches, dizzness, nausea and ended up passing out at work. I was rushed to the hospital where they found that the cyst had grown to 2.5 cm and had collapsed the ventricul for drain of my csf. I ended up with Hydrocephalus and my brian ended up looking like a football. I under went surgery where they placed a shunt and a tube running through my body to drain the CSF (Ceribal Spinal Fluid). The shunt will be there for the rest of my life. The Neurosurgeon said that in less than a week I would of been dead. My advise is if you are having severe headaches, dizziness, fade-outs or a feeling of extreme pressure behind your eyes, as if a sinus infection, see your doctor immediately. These cyst are generally asymptomic, but when sysptmoms appear can be extremely dangerous.

please email me ****
or go to kelsy.pledgepage.org

I had surgery 14 days ago at The skull Base institute Dr. Shahinian is wonderful!!!! please write and I will help answer questions or concerns....

**edited by moderator**

:-D XD A PINEAL CYST ISA MASS AND ANY MASS CAN KILL YOU EVEN IF IT IS BENIGN....YOUR DR.'S ARE LIARS AND WORK FOR THE VARIOUS INSURANCE COMPANIES....NOT THE PATIENT.....DUH o.O

MY DAUGHTER JUST TURNED 18 AND HAS HAD SEVERE HEADACHES AND VERYTIRED SINCE SEPT.2007 THE DR. KEPT TELLING HER IT WAS STRESS. WE SWITCHED DR.S AND THEY IMMEDIATLY SENT HER FOR A CAT AND CALLED THE SAME DAY AND SAID IT SHOWS AS A PINEAL CYST SURROUNDED BY FLUID. SHE IS NOW SCHEDULED FOR MRI THIS WEEK ???? CAN ANY ONE RECCOMEND A GOOD NEUROSURGEON AT MASS GENERAL THAT HANDLES THIS.

My daughter Paige DeSarro died from an Arachnoid Cyst which burst in June 2007. She was only 17. She was taking Topamax which is an anti seizure medicine that she was taking for migraines. We believe that the Topamax caused a seizure which caused the cyst to burst. For more information log onto her memorial website and light a candle. www.paige-desarro.memory-of.com

I have had this since I was 14. I have never felt pain in my head like this in a long time. If when you get older the more you hurt is what this cyst causes then I need to find one of your doctors soon. Where I live in this town doctors do not belive in pineal cyst or don't care. If you have any advice for a man who can't find any.