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Old 02-29-2004, 11:32 AM   #1
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redky HB User
Pineal Cyst ???/help Please!!!

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

 
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Old 03-10-2004, 08:54 AM   #2
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Fancy HB User
Re: Pineal Cyst ???/help Please!!!

Hello, I noticed that it has been a while since you posted this.

I was wondering if you could tell me what you found out?

I've had my pineal cyst for 3 years now. And like you they say
that it's nothing to worry about. "ya right".

I've had the severe headaches almost for a year solid. I have
been on many different medications. Nothing works. They just
got done weaning off of Neurotin because it didn't help my
headaches.

It's funny when they found out that I had the pineal cyst there
was nothing wrong with me. Just unexplainable headaches.

Please let me know what you found out.

Amy
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Old 03-12-2004, 08:11 AM   #3
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Tigre HB User
Re: Pineal Cyst ???/help Please!!!

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.
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Old 03-15-2004, 12:11 AM   #4
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Re: Pineal Cyst ???/help Please!!!

I too have been diagnosed with having a pineal cyst and was told that there was nothing to worry about. But I have been having headaches, mood swings, and sleep disturbances ever since I was little girl and so far nothing has helped. With headaches being my main concern, I've finally decided to go see a Pain Management doctor to see what he can do, since my neurologist hasn't helped. Don't get too scared over it. You'll be ok. I was diagnosed with it when I was 12 and I haven't died yet. Hehe, just playing with ya. Anyways, so far, from what I can gather from the docs, it's not life threatening so they really aren't that worried about it. I hope you feel better and good luck.

 
Old 03-19-2004, 06:40 PM   #5
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Re: Pineal Cyst ???/help Please!!!

What is it? Can you tell me your symptoms? I have been to 3 doctors and they all tell me stress but I feel something is seriously wrong with me. I have a spot on the top left side of my head that is sore to touch, when I brush my hair, shower & even when the wind blows. It's been going on and off for 4 months accompanied by headaches, nausea. I even wear glasses now, sigh. The last doctor said he didn't feel an MRI was necessary since I have had this sore spot on my head one other time in my life about 7 years ago that would rule out a brain tumor. He said if it was a tumor I would be dead by now. I just don't understand how stress could cause a sore spot to touch. It feels like my head is bruised and it doesn't feel like its on the skin, it runs deeper then that when I touch it. I just don't know and I am getting really scared with all these weird symptoms.

Jeannie

 
Old 04-11-2004, 08:04 PM   #6
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cjs201 HB User
Re: Pineal Cyst ???/help Please!!!

You really need to find another neurologist. You need to have an MRI. It wouldn't be a pineal cyst, that's much too deep, below the brain to cause any superficial symptoms like you're describing. It could be a number of things, and getting an MRI would probably ease your anxiety once and for all. Go to yout GP and ask for a referral, skip the neurologist if that's easier. The radiologist will give a full report on what he/she sees.

 
Old 04-14-2004, 02:18 PM   #7
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Re: Pineal Cyst ???/help Please!!!

I would like to thank everyone who responded to my posting. I have been off work since march 3rd. Still having a nonstop migraine. It has eased a bit unless i bend over , sneeze, cough. or try to have a bowel movement. I am taking laxitives every other day to try and ease the pain from the bowel movement problem. It works, however I feel it's dangerous. A lot has happened since i posted. I have been to a neurosurgeon , my GP, and a neurologist/headache specialist. The neurosurgeon would'nt give me the time of day. My GP sent me there to get a good opinion on the mri I had done. The neuro thought I was there exploring an option for surgery. Again he said the pineal cyst is nothing to worry about. Next step was the neurologist. I have been on lots of medicine for inflamation, and seizures. The neurologist finally put me on in home IV therapy with a concoction he called his atomic mixture. It was raglan, DHE, and solu medrol. Very harsh medicine. I was so sick I dehydrated. Finally they brought a bag of saline and I recovered slowly from that experience. He only ordered the saline after I called his office and told them I had my bag packed and wanted him to admit me to the hospital. Normally, that is the last place I would want to go. Last week the neurologist said he really thinks the headache is from menopausel symptoms. I am 46. He put me on Depakote ER, one at night the first week and then two at night. I have not noticed much improvement yet but he said it may take two weeks before I do. I am also suffering most of the time without pain meds as the neurologist advised this may be feeding the migraine. All the doctors have told me that when this first started the meds I took caused the migraine to set in and I would have to wait until it goes away. I was taking Advil and then tried Excedrin migraine, plus I waited a week and a half before going to a doctor. I did'nt know. I never had a migraine before. Just thought it would go away. Also I forgot to mention, the neurosurgeon I seen thought the cyst was on the pineal gland and not in it. He also said the cavity around the gland was larger than most and was holding more spinal fluid than most, but again, it was still considered normal and not to worry. He also said the tremors I was having in my arms and head was just my body's reaction to pain. I guess this is true since I only have them when the pain's severe. I can remember when I was very young and my sister and I along with the neighbor kids used to play doctor. We would argue over who had to be the patient since everyone wanted to be the doctor or the nurse. I feel like I am playing all three now and I don't like it a bit!!!
Thanks again and I will keep you all posted. My prayers are with you.
redky

 
Old 05-01-2004, 10:02 PM   #8
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Re: Pineal Cyst ???/help Please!!!

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.

 
Old 06-07-2004, 08:55 PM   #9
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Lawford HB User
Re: Pineal Cyst ???/help Please!!!

I am a 23 year old female and i was just diagnosed with a pineal cyst today. I have had no symptoms other than some sleeping problems. I had heart surgery and 3 mini strokes as a result. This is why they did CT scans and an MRI which led to the discovery of the pineal cyst. I meet with my neurologist in 3 weeks and will find out exactly what's going on then. It was my heart surgeon who informed me of the cyst. I've had trouble finding a decent web site on pineal cysts. If anyone knows of one please post it or information on it for us all. Thank you

 
Old 08-12-2004, 04:48 AM   #10
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Re: Pineal Cyst ???/help Please!!!

I Had Terrible Headaches, Sight Loss. Vomiting And Memory Loss Diagnosed On The 22 January Operated On 27 January, Bi-lateral Drain Put In Shunt Behind My Right, Through Chest Into Stomach. Eye Sight Improving,no More Headaches,memory Slow Returning .but Better Than It Was,perphaps If You Ask If You Could Have One Of These Drains Put In It Might Help You .it Has Improved My Quality Of Life,still Have Pains In My Neck But Bearable,hope This Is Useful To You . All The Best Jeannette.

 
Old 08-28-2004, 11:51 AM   #11
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babysis7777 HB User
Unhappy Re: Pineal Cyst ???/help Please!!!

( I HAVE 2 PINEAL CYSTS ON THE BRAINSTEM AND IT HAS CAUSED ALOT OF PROBLEMS AND HAS CAUSED ME TO HAVE SEIZURES AND EPISODES OF FALLING BACK WARDS AND PASSING OUT YET THE DOCTOR DOES WANT TO DO ANYTHING FOR ME ABOUT IT BUT MRI AND EEG'S THAT'S IT I AM SO FRUSTRATED THAT HE SAYS THERE IS NOTHNG HE CAN DO FOR ME BUT KEEP A WATCH ON THEM IT IS GETTING ON NERVES AND I AM FRUSTRATED WITH THE WAY THINGS HAVE BEEN GOING FOR ME WITH THESE CYSTS SINCE 1998 AND NOW IT ALL SEEMS TO BE GETTING WORSE AND FOR THE SEIZURES CAUSED BY THE CYSTS HE PUT ME ON TRILEPTAL 300MG A DAY. I DOUBT IT WILL HELP I AM STUCK HERE AND FRUSTRATED I AM IN PEORIA ILLINOIS ANY ONE ELSE HAVE ANY IDEAS OR INFO I CAN USE PLEASE LET ME KNOW THANKS

 
Old 09-18-2004, 04:03 AM   #12
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Re: Pineal Cyst ???/help Please!!!

I see I'm not the only one that is being told by their neuro doc it nothing to worry about,but that not good enough for me...Before I had this little episode I'll call it happen to me I would have maybe 3 -4 migraines a year but on July 23,2004 it started with a burning sensation in the chest than a weakness in the arm and leg and than face on the left side,slurred sppech intense headache don't remember much more after than.Spent 4 days in hospital after being flight flighted was told I had a mini stroke...Was home a day and a half woke up with an intense headache on the left side and felt like my left side of the face was swollen went to fire station to have BP checked but no one was there on way back home was over come by numbness so son called rescue BP was 65/30 was admitted for 6 more days was diganosed with complex/ complicated migraines.Been on topamax since 8-2-04 started at 25 mg up to 75 mg..I have headaches every day,sometimes bad enough to where I can't hold my head up,open my eyes cause they hurt so bad,I'm nausated most of the time and when it get really bad I end up in the ER and than they start giving you crap cause they don't think you are really in pain that often..I wish for 1 week they could trade places with me..Luckily I have a job that allow me to work 4-5 hours a night instead of my 8 hours,really they rather me stay at home and rest but they understand I need the money and my coworker overnight have took up a collection and have paid a few bills for me..I do have a good support group,just wish a good neuro doc,etc//It's so hard to just get through the day being in so much pain and not having the strength or energy to keep going but I don't have to explain to you all caause you know where I'm coming from..Hopefully soon someone will take this serious and get us the help and consideration we well deserve and need...Take care and try to have a nice weekend..
(((((((((((((((((((((((((((((((((((((((H UGS)))))))))))))))))))))))))
Tired-n-Fla

Last edited by tired-n-fla; 09-18-2004 at 04:04 AM.

 
Old 09-18-2004, 09:37 PM   #13
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godsgirl246811 HB User
Re: Pineal Cyst ???/help Please!!!

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,
KIM

 
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Old 10-11-2004, 09:58 AM   #14
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~Pixiedust~ HB User
Re: Pineal Cyst ???/help Please!!!

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.

 
Old 03-04-2005, 05:56 PM   #15
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Re: Pineal Cyst ???/help Please!!!

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.

 
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