Pineal Cyst

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???

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!!!

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.

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

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

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?! [/b]

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.

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?

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.

[quote="nancy123"]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.

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.