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Brain & Nervous System Disorders Message Board


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I was also diagnosed with a pineal cyst. Last year I had a head injury and during the cranial mri they found that I have a 5mm by 9mm pineal cyst. I also have headaches but my docs are saying its caused by the herniated disc in my neck from the injury. Also my eyesight is getting worse. Before the accident I had 20/30 left eye and 20/40 right eye. Then within 6 months it went to 20/50 left 20/70 right. I went to get contacts a couple months later and i now have 20/75 in both eyes. I know its not the worse eyesight but obviously something is going on and I dont believe its from the injury. I also have tremors and shaking in my arms and legs and once again its not from the partial complex seizures (that i now have from the injury) my neuro thinks its anxiety related yet my psychiatrist doesnt agree. I am going to have another mri done in june...exactly one year since the first mri, to see if its grown or not. Neuro says if it hasnt grown to just forget about it and if it has grown we will deal with it then. Im sorry but im freaked out myself. There is no room in the skull to deal with anything but the brain and with a cyst growing i believe its pushing and that could be whats causing the headaches. Also from what ive been told they cyst is a sac filled with spinal fluid....so cant that cause problems with the spine and therefor motor control? Yet most doctors think these cysts are nothing to worry about..i tend to disagree. I dont obsess about it but it does bother me. It should not be there to begin with. My doc tends to not relate any of my symptoms that i have to the cyst but to my head injury. Examples: short term memory loss, headaches, neck pain, back pain, shoulder pain, tremors, seizures, bouts of anger (they relate that to severe depression and panic and anxiety attacks) I am so confused that i dont know what to believe and am beginning to think that i should just get off all my meds and deal with it. I think doctors need to learn more about these types of cysts because from what ive read with others having them.....there are alot of the same symptoms and problems. Yet we are told to "not worry about it" Well in my oppinion let them have it in THEIR head and then be told to not worry about it. Ahhh there goes my "unrelated" bouts of anger. Hang in there and I hope that you find a doctor who will take this seriously. But by all means dont let it effect everything in your life. It took me awhile after I found out about mine to put it "in the back of my mind". Take care and I wish you the best.
I too have a pineal cyst. Mine is 1cm. I have done all the meds, and by the way, DHE is very dangerous stuff. I have been suffering for 2 years now with no relief. My docs say the same thing. No narcotics for the pain, etc. I have had hand tremors, staring spells, loss of coordination, loss of balance, and of corse, the ever present headache. The last neruologist I saw (I have seen 8) seems to think my cyst is putting pressure on a blood vessel in my brain. She explained while the brain can't feel pain, the blood vessels in my brain can. She wants me to explore a surgical option. I can't find a surgon willing to operate. I would do anything to have my life back. I explain to people what it is like by telling them,"if it was your dog, you would put him to sleep because he was in constant pain." Does anyone seem to know if they have done any studies on the pineal region cysts? It seems to me alot of us have the same symptoms, but the docs all say that the cyst is an incidental finding on the MRI. Also, Does anyone know any neurosurgons who will operate? I refuse to go on methadone (the pain clenics suggestion to my headaces) as I have very young children, and don't want to be a junky for the rest of my life.
:angel: HELLO TO ALL THAT HAVE A PINEAL CYST/TUMOR. I DISCOVERED MY IN APRIL OF 2004. I HAVE BEEN BLESSED TO FIND OUT ALOT. FIRST OF ALL,
ALL DOCTORS ARE TAUGHT IN SCHOOL THAT THE PINEAL GLAND IS USELESS. THIS IS NOT TRUE IT CONTROLS YOUR MELATONIN THAT SENDS BODY PARTS MESSAGES FROM THE BRAIN TO FUNCTION. IF THIS GETS AFFECTED THEN CERTAIN PARTS DON'T WORK RIGHT AND TESTING THAT BODY PART WON'T SHOW THIS. ALSO IT IS RESPONSIBLE FOR YOUR FUNCTION OF YOUR KIDNEYS. IF YOU HAVE A BIG ENOUGH CYST/TUMOR THEN IT WILL EFFECT YOUR BODY. LIKE I KEPT GETTING LOW, VERY LOW HEART RATES AND I NEED OXGEN BUT SHOWED I WAS FINE EXCEPT LOW HEART RATES, IT STABLED MY HEART RATE!!!

I ALSO WAS TOLD THAT A NEUROLGIST IS NOT PUTTING HIS LISCENSE ON LINE MEANING HE NOT GOING TO OPERATE ON YOU JUST TREAT SYSTOMS NOT HELP TOO MUCH IF ALL POSSIBLE TRY TO GO TO A NEUOR-SURGEON. I HAVE FOUND SOME RESEARCH THAT HELP EXPLAINS ALOT OF THE SAME PROBLEMS YOU ALL HAVE. SOME OF THIS DOESN'T PERTAIN TO US BUT VERY GOOD INFORMATION WWW.flurideaction.org/pesticides/pineal.2003.abstracts.htm THIS IS INFORMATION COLLECTED ALL AROUND THE WORLD. I ALSO HAD THE SAME PROBLEM WITH DR. NOT BELIEVING ME. I STUDY SOME INFORMATION FROM A BOOK CALLED "WHAT YOUR DOCTOR DOESN'T KNOW ABOUT NUTRITIONAL MEDICINE MAY BE KILLING YOU" BY DR. RAY STRAN. THIS HELP ME FIGURE OUT THAT I HAD A AUTOIMMUNED DISORDER AND LEAKY GUT SYDROME. MOST DOCTORS DON'T BELIEVE IN IT. I CONTINUED TO EDUCATE MYSELF AND FOUND DR. AND CLINICS THAT HELP OUR CONDITION. I WENT TO DR. KALIDAS 407-355-9246 WHO IS A WORLD FAMOUS DR. WITH MD AND NATURE DOCTOR DEGREE AND I HAVE KNOWN HIM MANY YEARS. DR. K HELPED SHOW ME HOW THIS IS CONNECTED TO OTHER DISORDERS I HAVE BEEN TOLD I HAVE AND WHY THE THINGS ARE GOING ON THAT ARE GOING ON WITH MY BODY AND WHY I GET DIZZY AND ALL THE OTHER STUFF THAT COMES WITH THIS PINEAL CYST/TUMOR AND I HAVE THE WEBSITE TO A CLINIC THAT DOES SURGERY. I HAVE REFUSED HOSPITAL STAYS AND A SHUNT BECAUSE MY BRAIN SWELLLS AND MY HEAD IS SORE ON ONE SIDE AND ALL THAT GOOD STUFF. I HAVE BEEN GIVEN A TREATMENT THAT HELPS CYSTS/TUMORS CALLED A TRANSDERMAL. IT HAS DONE WANDERS FOR ME!!!!!!! I WILL SEE SOON IF MY HAS SHRINK OR NOT. THIS TREATMENT HAS HELPED MANY CONDITION. I AM DOING RESEARCH AND TRYING TO COME UP SOMETHING TO HELP PEOPLE WHO ARE IN OUR SITUATION. I KNOW HOW UPSETTING IT IS WHEN NO ONE WILL LISTEN TO YOU OR TELLS YOU THAT IT IS NOT CONNECTED TO YOUR PINEAL . YES, IT IS AND THERE IS RESEARCH PROVING IT. IF YOU DON'T GET HELP DON'T GIVE UP!!! AS YOU SEE YOU ARE NOT THE ONLY ONE THAT GOES THUR WHAT YOU GO THUR. I HAVE MY DAYS BUT I AM WANTING TO SHARE MY INFORMATION WITH YOU. i HOPE THIS HAS GAVE MANY OF YOU HOPE. I KNOW IT CAN GET VERY UPSETTING ALWAYS BEING TOLD THE THINGS THAT YOU ARE. REMEMBER DOCTORS ARE PEOPLE AND DO NOT KNOW EVERYTHING THEY LEARN ABOUT NEW STUFF TO. ITS IF THEY ARE WILLING TO LEARN AND NOT ACT AS THOUGH THEY ARE GOD!! I WILL CONTINUE TO DO MY RESEARCH AND GO ON AND HOPEFULLY WE CAN START LETTING DR. KNOW THAT THE PINEAL DOES SERVE A PURPOSE CAUSE GOD DOESN'T PUT ANYTHING IN YOUR BODY THAT DOESN'T HAVE A PURPOSE!!!!!!!!! OH, GLUTATHIONE IS IN MY TREATMENT YOU CAN GO TO GLUTATHIONE.COM ALOT OF DR. MAY NOT HAVE HEARD OF IT. IT IS IN THIER PHYS. REFFENCE BOOK, SO IT IS COVERED UNDER INSURANCES!!! JUST TRY TO GO TO A DR. WHO IS EDUCATED IN THIS. DR. KALIDAS DOES PHONE CONSULTS AND DOES KNOW THE USUAGE OF THIS WANDERFUL ALL NATURAL PRODUCT. SEE YOUR BODY MAKES GLUTATHIONE AND IT IS USED TO HELP WITH MANY CONDITIONS!!! JUST HANG IN THERE I KNOW IT GETS HARD.
GOOD LUCK AND GOD BLESS, :angel:
KIM
Hi everyone,

I just found this forum today and was so pleased to find it. I thought I'd introduce myself. I was diagnosed with having a pineal cyst in October '03 after having a 3 year battle with blinding headaches, facial pain and jaw pain. The neurologists weren't looking for tumors/cysts, they were trying to confirm their diagnosis of Trigeminal Neuralgia, when they saw the cyst. Needless to say, hearing them tell me that I had the cyst in my pineal gland was the scariest thing anyone had ever told me before. I thought it was my death sentence. I basically came home and just sat in shock for a couple days then decided to get on the net to find any information that I could locate, since I felt like the neurologists weren't very informing. They told me that I'd need a follow up MRI every 6 months to make sure it wasn't growing, and in the event of it increasing in size we'd have to consider other things to do.
I was left confused and frankly, I still am confused today.
I have all these things going on with my head and body, such as my hearing and my eyesight, loss of coordination, brain fog, fatigue and the list goes on...
I've always been quite active but as of late, I'm just a totally different person that I used to be.
This entire year, I've been trying to push the thoughts of this pineal cyst out of my head...I kind of thought, "Ok...if I don't talk about it or think about it, maybe it really doesn't exist" Lately, I can't help thinking of it because of all the changes I am seeing.
[QUOTE=akmartin]I do not know if anyone is still reading this thread, but I have a very similar story of the others, with one exception. The only way I knew I had a pineal cystic lesion was because I asked for a copy of my MRI report. I had only been told by my doctor that I had a sinus infection and nothing else. My MRI report also states, "An area of isointensity of CSF is present in the posterior aspect of the posterior fossa most compatible with a mega cisterna magna. The differential would include a retrocerebellar arachnoid cyst." I have similar symptoms: headaches, vision problems (for a patter lack of works floating dark and white spots of different size), sleep problems, tingling and buzzing in head an body, an attack that I thought might have been a stroke (but could be deemed a seizure), cannot concentrate, and trouble with simple spelling of words. I am at my wits end and would like more information of both the Pineal Cyst and the Mega Cisterna Magna. I want my head back to the way it was. :confused:[/QUOTE]

I also have a small pineal cyst which was discovered during my MRIs for my pituitary tumor. I also have choroid plexus cysts (bilateral). I also read every radiology report and mine also states bimaxilary mucosal disease (sinus infection). I experience severe headaches, nausea, and pain behind my eyes now. Apparently the nausea is not common with a non-functioning pituitary tumor. I also have polycystic kidney disease. I'm going to Johns Hopkins for a second opinion next week. I am not aware of the definition of mega cisterna magna. It's funny, if the doc does not give you a name for the radiological term, it can be hard to find much info about it. For example, when my first MRI was taken in 11/04, it showed a "sellar vs. suprasellar mass", which they told me they thought was a brain aneurysm. It turned out to be the pituitary tumor. Did you converse with your doctor and ask specific questions about your radiological report?

Hope to hear from you soon!
In the past 9 mo or so, I have had really bad migraines and headaches, as well as temp lobe seizures and have gained a lot of weight. On an MRI, they found an "incidental" 9mm pineal cyst. Like so many of you, I have serious concern that the headaches/migraines and seizures are more than coincidental with the cyst. (I wonder about the weight, but can't really point to much evidence that might link it with a pineal cyst.)

I would like to find a neurologist/neurosurgeon or two who might at least be open to the possibility that the cyst is not just incidental to do an evaluation. If nothing else, it seems logical that the cyst would press on adjacent structures and/or fill up part of the venticle, squeezing the CSF and putting increased pressure on surrounding tissue.

I would also like to know what options there may be for treatment. I know about the surgery and drainage possibilities if there is a blocking of the CSF and consequent hyrocephalus, but I wonder if people are aware of other options.

From the research I have done, I wonder if part of why the docs so often consider the cysts incidental to these sx (as well as visual changes and nausea) is that the pineal gland is pretty deeply imbedded in the brain and is adjacent to structures critical to sight, movement, etc. If it is difficult to access the cysts without significant danger of permanent damage to these functions or death from the surgery to drain the cyst, there might be little opportunity to do the surgery and see if it relieves some of the sx.

Many thanks for any thoughts folks may have and good wishes to the rest of you struggling with this!
[QUOTE=~Pixiedust~]Hi everyone,

I just found this forum today and was so pleased to find it. I thought I'd introduce myself. I was diagnosed with having a pineal cyst in October '03 after having a 3 year battle with blinding headaches, facial pain and jaw pain. The neurologists weren't looking for tumors/cysts, they were trying to confirm their diagnosis of Trigeminal Neuralgia, when they saw the cyst. Needless to say, hearing them tell me that I had the cyst in my pineal gland was the scariest thing anyone had ever told me before. I thought it was my death sentence. I basically came home and just sat in shock for a couple days then decided to get on the net to find any information that I could locate, since I felt like the neurologists weren't very informing. They told me that I'd need a follow up MRI every 6 months to make sure it wasn't growing, and in the event of it increasing in size we'd have to consider other things to do.
I was left confused and frankly, I still am confused today.
I have all these things going on with my head and body, such as my hearing and my eyesight, loss of coordination, brain fog, fatigue and the list goes on...
I've always been quite active but as of late, I'm just a totally different person that I used to be.
This entire year, I've been trying to push the thoughts of this pineal cyst out of my head...I kind of thought, "Ok...if I don't talk about it or think about it, maybe it really doesn't exist" Lately, I can't help thinking of it because of all the changes I am seeing.[/QUOTE]
Hi, Iknow it's been a while since you wrote this but I was wondering if you had any luck with treatment or finding a doctor that does'nt just brush this off like it's nothing? I can't find anyone to help me and it's a struggle now just to get through an average day. My doctor apparently thinks its just stress causing my almost daily headaches, memory loss, loss of concentration, dizziness, tingling/burning in my face, ect... But I don't see how. I was first diagnosed with an anerysm but now they say they were wrong about that?? Now they say I have this cyst thats not causing any of my problems. Do you have any advise? Please email me [ [b] please carefully review the posting rules - no emails [/b] ]

[b] [ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ] [/b]
HI!! I had a pineal gland cyst ( about 3cm) , I also live in Indiana and Dr. Gaurnaschelli was the first Doctor that I went to. I ended up having surgery to remove it March of this year, and its been a very long recovery. However I feel great and have not had any symptoms since my surgery!! I ended up have my surgery done in New York @ nyu . My cyst had done damage to my brain stem which was causing reflex problems and the gland had to also be removed. Most doctors don't want to do this surgery because of the risks, however sometimes these cysts do need to be removed. I have a lot of info. on these cysts if anyone needs it. Brittany





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