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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


: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
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]
[QUOTE=redky;881311]A Few Days Ago I Was Diagnosed With Pineal Cyst. I Have Had A Severe Headache For 19 Days. I Had Severe Nauesa For A Week And A Half Until I Recieved Suppositories From My Dr. In The Last Several Days I Have Developed Motor Function Problems With My Arms And Head. Not Real Bad But Noticeable. I Have An Appointment With A Neurologist Tues March 2. Any Info Anyone Can Give Me On What To Expect Will Be Appreciated. I Have Read A Little About This And Come To The Conclusion That It's Not Taken Very Seriously. I Am Not A Person Who I Sick Very Often And Right Now I Am Really Sick. Please Help Me If You Can. I Am Very Scared And My Family Is A Mess Over This Whole Thing.
Thanks !
Redky[/QUOTE]

How are you now?

I am located in Evansville, Indiana. I am a somewhat healthy (I have had migraines and scoliosis for years), 35 year old female, teacher and mother of two.

I recently demanded an MRI due to a constant headache in the back, left side of my head, lack of sleep, forgetfulness and a weird sensation in my head that I canít explain. I have had sleep problems for years and have been on numerous medications for lack of sleep and seasonal depression.

According to my MRI, I have a 1cm pineal / arachnoid cyst in my pineal gland. I have read the research. My family doctor and neurologist say that it is no big deal. My neurologist said I need injections in my head and I need to go to a sleep study. She says that this will make my migraines and the rest ďhead throbbingĒ go away.

Iím trying to get into a specialist in Louisville, KY (John Joseph Guarnaschelli).

Due to what Iíve recently read, Iím a bit concerned. I realize that I was born with cyst, but I more recently have had symptoms. My doctors say that my problems are not related to the cyst. I would like to believe this!!! How do they know that they are not?

There are not many postings on an arachnoid cyst in the pineal gland. They say it is benign, but how do they know without a biopsy? I havenít read success stories for those who have had treatment or those who have waited. Are there any success stories? Iíve also read that after having one surgery, that the surgeries will continue.

Please help!!!!
[QUOTE=jjricha;2939332]How are you now?

I am located in Evansville, Indiana. I am a somewhat healthy (I have had migraines and scoliosis for years), 35 year old female, teacher and mother of two.

I recently demanded an MRI due to a constant headache in the back, left side of my head, lack of sleep, forgetfulness and a weird sensation in my head that I canít explain. I have had sleep problems for years and have been on numerous medications for lack of sleep and seasonal depression.

According to my MRI, I have a 1cm pineal / arachnoid cyst in my pineal gland. I have read the research. My family doctor and neurologist say that it is no big deal. My neurologist said I need injections in my head and I need to go to a sleep study. She says that this will make my migraines and the rest ďhead throbbingĒ go away.

Iím trying to get into a specialist in Louisville, KY (John Joseph Guarnaschelli).

Due to what Iíve recently read, Iím a bit concerned. I realize that I was born with cyst, but I more recently have had symptoms. My doctors say that my problems are not related to the cyst. I would like to believe this!!! How do they know that they are not?

There are not many postings on an arachnoid cyst in the pineal gland. They say it is benign, but how do they know without a biopsy? I havenít read success stories for those who have had treatment or those who have waited. Are there any success stories? Iíve also read that after having one surgery, that the surgeries will continue.

Please help!!!![/QUOTE]
[/B]

I am wondering the same thing - I to have a 1.4 cm pineal cyst and alot of symptoms - after careful research, I have come to the conclusion that many people with the Pineal Cyst have the same symptoms I have - I too was going to a neurologist who blew me off as saying my symptoms are not due to my cyst/tumor - but after reading that all neurologists say the same thing - you are fine, no fluid flow is interupted due to your cyst so you don't have any problems from the cyst itself - I am now going to a Neurosurgeon at UCLA on the 21st of Sept. '07 - I will be speaking to him in depth of my issues and am going to get some serious answers - would be happy to relay anything that I find out if you are interested!! Good luck to you and me both as it is an awful awful feeling to feel this way all the time!!





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