I am a 40 year old female with almost the exact symptoms as your daughter.  I have been diagnosed with migraines by two different neurologists.  I have taken several different migraine prophylaxic medications but haven't seen much difference in the headaches/swelling in eye.  I recently had a cat scan that revealed multiple radiopaque areas in the brain, radiologist noted them as pineal gland calcifications.  I have had two seperate head traumas about 14 years apart.  I have been suffering with severe symptoms for over 6 years.  I certainly think there is a connection with the lesions the scan revealed.  I have been researching doctors that specialize in this treatment, located in new york and columbia university.  Hope this helps.

HELLO, I JUST READ YOUR POST. I AM 58, FEMALE AND I HAVE HAD TWO CYSTS IN PINEAL REGION, NEXT TO GLAND. 1992 I HAD CYST REMOVED FOR AT FIRST I HAD BAD HEADACHES AND THEN IT WENT TO A 24 HOUR PRESSURE. AFTER IT WAS REMOVED, NO MORE HEADACHES. DOC'S TOLD ME THAT IT COULDN'T CAUSE HEADACHES BUT I BEG TO DIFFER, THAT'S WHAT MY HEADACHES WERE CAUSED FROM. SECOND CYST CAME BACK OR I FOUND OUT IN 1996 AND HERE WE GO AGAIN. SAME SYMTOMS, HAD IT REMOVED IN 1998. SO YES IT CAUSES HEADACHES, PRESSURE ETC. WHAT A JOURNEY IT HAS BEEN FOR I JUST FOUND OUT NOW I HAXE A THIRD ONE. WOULD BE HAPPY TO HEAR FROM YOU...DEBBIE

Hi Debbie,

I was diagnosed with a 1cm cyst on my pineal gland about 3 weeks ago....I get headaches and pressure almost everyday...but this past weekend, I ended up in the hospital for 3 days because of a severe headache. they said its benign and cant cause headaches this bad, but same as you, I beg to differ. How did you get your dr. to remove it???? Would love to hear from you....

dear debbie hello. i wonder... do you live in canada??? because all surgeons i know about up here do  not do this surgery... im so very very sorry about the recurance of this cyst... have they all been at the same place?? i want to have surgery for mine.... i cannot afford to go to us please respond

i had an mri with out dye would a cyst show? my migraines are severe life altering i have had my neck surgury c-4567 with titainium due to rubtured discs and i get botox every twelve weeks nothing had worked so im hoping for an easy out this is an awful way to live

I have a friend that just got diagnosed with a pineal cyst in her pineal gland. She has one more neurosurgeon to talk to that I recommended her to, he had removed my AVM, but the rest of the surgeons around here have denied her treatment because of the difficulty..Could you please let me know who the doctors that specialize in this treatment that you found? She just started losing vision and doesnt want to just watch it like they said. I noticed you said NY which is fairly close to us being in RI.

I was diagnosed with a pineal cyst in 2006, and was told that it was incidental and not causing any of the other symptoms i was having.  My doctor told me that I would have to live to be 180 years old before it would grow to be the size where it would cause problems.  Now, in 2011, i get headaches that are so bad, itfeels like my eyeballs are going to pop out of my head.  I don't even want to bring it up to my doctor again because he made me feel like an idiot for bringing it up 5 years ago.  What other symptoms do you have?  Vision:  focusing from something up close to far away is becoming increasingly difficult....Headaches behind my eyes that hurt so bad i can;'t even explain...inability to concentrate, can't stay focused....The headaches are the worst though.  I have never had this type of headache before.  I am so confused...are these symptoms just me getting older, the results of the changes from having kids....or related to this incidental cyst that was never supposed to cause any problems?

I have all the same problems.  I am losing my vision rapidly, the pressure and pain in my head is unbearable, I even get unexplainable bruising on the left side.  The main pressure is on the right side of my head.  I can barely see to go anywhere and am very sensitive to light.  It feels like my eyeballs are about to pop out and in pain.  If anyone knows what kind of doctor to see please tell me.  I can't focus, concentrate, remember much.  I did meet with one neurologist and he said even surgery to remove cyst wouldn't help because now the damage is done and it will keep coming back and getting worse until dementia.  How do people relieve the pain.

Dr Mcdermot at Ucsf is a wonderful surgeon.He removed the majority of my pineal gland tumor which relieved me of constant headaches,dizziness,memory problems.Good luck Keith

I am 41 year female, never had a headache a day in my life.  On October 30, 2011 I got a headache that knocked the life out of me! For five days, I vomited, saw spots, ringing in the ears, ect.... this continued for two weeks, went to the Dr. my blood pressure was crazy high, they thought this caused the headaches.  I told him it was due to the pain I couldn't controll.  Went to eye doctor, they saw papiledema.  Had MRI, another eye doctor said not papiledema.  MRI report came back with cyst on pineal gland and urged I see neurosurgeon immediately.  I did, he said no problem- cyst not causing headache... earlier this summer I would fall asleep standing, sitting, talking.  Neurosurgeon couldn't care less, was more concerned if I was left or right handed, and if I get car sick...  I find it odd we all have the same symptoms, and yet everyone says there's no cause and effect.... Not sure what to do next. I'm nervous because everything I've read about the pineal gland--- has taught me it's our bodys regulator and when it's out of whack, it throws our other body systems off balance....

Sarah~  I hope your surgery and recovery go very well.  Try to focus on the positives (no more symptoms!) instead of the surgery.  It is amazing what surgeons can do, and how fast a body can heal.  Best wishes!!!

I have had a pineal gland cyst for all my life they say.  Found out about it 2.0 years ago.  Had bad headaches, fade out episodes during the day, difficulty sleeping, nauseau, abnormal weight gain and tiredness all day.  Sometimes I will sleep for 14 hours be up for  a bit then take a 3 hour nap.

 

Been tested for Epileptic seizures, did a sleep test.  Never was really happy with diagnosis of a sleep disorder and hypersomnia.  I take medicine that is often used for Narcolepsy to keep me awake and stop fade outs during the day.

 

I understand your fear of surgery. I know someone who had it because her cyst ruptured and caused a seizure and she fell and hit her head.

 

Mine is kinda big.  1.4 cm by 1.2 ...according to last MRI last OCtober almost 1.5 years ago.

 

Where do you live and who is your Dr. might I ask?

 

I am becoming sympotmatic lately and I am kind of worried.   

Hi I just found out today that I have a pinal gland cyst.  I have had migrane headaches since I was a child and was diagnoised with Chronic Fatigue and went to the sleep clinic and I was given medication for Narcolepsy which worked for a while.  I had headaches 50% of the time.  I could sleep anywhere or anytime and I was treated like I didn't have a problem... In a way I'm not surprised.  What I would like to know is what causes them and what brings them on? They tell you it does not affect you but everyone here sounds like me pretty weird don't you think?

Sarah

My name is Sharon. I was just diagnosed with a penial cyst. I have horrible headaches, fall alot, I am loosing my vision, and up almost every night getting sick. I saw your story. I am 39 years old and scared to death. Did you have the surgery? I don't know what to do. When you can, will you please offer me any advice. Thankyou, and you are in my thoughts and prayers.  Sharon

Sarah - how big is your cyst?  My husband has been having migraine type headaches every day for about 3 weeks now.  They found a 1 cm pineal cyst.  We are meeting with the neurosurgeon on Friday but would like to know how big yours is that they decided they need to do surgery.  Prayers and best wishes for a speedy recovery!

Are they doing surgery on your husband? My daughter just found out that she has a Pineal cyst that is 1.5 cinemeters.She has severe migranes, double vision and several other symptoms.She is waiting to hear back for an appt. with the neurosurgeon.Thanks, Karen

Not yet.   Supposedly the pineal gland cyst operation is very tricky and they try to avoid it at all costs because the risks sometime outweight the benefits.  The neurosurgeon now thinks that he has some swelling in his brain that is causing his headaches.  He has been through a cisternogram (ruled out that the pineal gland mass was causing a blockage that would have caused the swelling) and tomorrow will have a trans-cranial dopplar test to see if there is blockage in the arteries in his brain.  My best to your daughter in finding an answer to her pain.

I am a 45 year old female. Mine is 1.9 cm now, and I am symptomatic. Pretty much all the symptoms I have seen in these posts, I have. I have done my internet research as well, and have seen some case studies where these fluid filled cysts have hemorraged and caused sudden death. I will see my neurologist for the 3rd time, in a few days. He did a balance test a couple weeks ago, because I failed the Romberg Test initially, and I will find out the results of that test. My biggest concern is, if I have even the SLIGHTEST chance of having this thing hemorrage or burst and cause sudden death, then please someone take it out!

my son has a pineal gland cyst 1.3cm we just found out when he had a head ct for something else, headached stoo, I am a trauma nurse, how did it go with the Neurosurgeon? we found a surgeon at the skull base  institute in Los Angeles Calif that is specialized in the surgery, Ann

To concerned mother:

 

Suffering for headache, balance problem and vision disturbance, I was found a 10 x 6 mm cyst in my gland and I am thinking to send my files to skullbase institute, LA.  Please reply your progress because your information/progress would be very helpful to me.

 

many thanks

 

Moderator's note: For your privacy and safety, please do not post personal informaiton such as email addresses and phone numbers.

Hello Sarah,

 

I was diagnosed with a 1.2cm (12mm) Pineal Cyst back in September of 2009. I have always been a very athletic person- training and teaching Martial Arts nearly all of my life and obtaining 2 blackbelts.  Unlike the average teenager, I love school and have a passion for learning new things. (I have worked very hard to maintain a 4.0 G.P.A throughout my entire school career.) I am currently 15 years old and a sophomore in highschool with hopes of becoming a Pediatric Neurologist someday, inspired by a lifetime battle with Tourette's Syndrome.  Despite so many years of Martial Arts training, I have never in my life encountered an opponent as fierce and as merciless as the Pineal Cyst. 

 

As of late September of 2009, I have been out of school through an Independent Study program.  This has devastated me.  The endless wrath of my Pineal Cyst has even made attempting a single Independent Study lesson nearly impossible.  Even typing this response has become a very arduous feat...

 

My primary care physician originally referred me to a neurosurgeon at Stanford University.  This neurosurgeon then required me to see an Endocrinologist, Opthamologist, and Neurologist before seeing me to make sure the symptoms were not being caused by endocrine abnormalities, visual deficits, or other neurological problems.  All of the countless exams, blood tests, CT scans and MRI scans returned the same result; they were not the cause of my symptoms. 

 

The symptoms I have been experiencing are: Lack of sleep (I don't sleep at all at night.  I begin to feel slightly sleepy around 8 AM.  I maybe get a 2 hour nap during the day if I'm lucky, even while taking Ambien!  They have tried Ambien, Lunesta, and Melatonin but to no avail.), Debilitating daily Migraines, poor balance (which is very unusual due to the fact that I have trained in Martial Arts all of my life), 25lb weight gain in a period of 1 month (again very unusual for me because I live a very healthy lifestyle.  I eat a very nutritious diet and exercise vigorously. I wrestled on my school's Varsity Wrestling team at 130lbs during my Freshman year.  My self esteem has been severely affected due to the unexplained weight gain.), tremors in my hands- especially the right hand, infrequent urination, severe nausea, lethargy, difficulty regulating body temperature, difficulty focusing, pain when looking upwards (feels like my eyes are on rubber bands, snapping them back down.), etc. 

 

My family and I again made the 5 hour drive from my hometown of Hanford, CA up to Palo Alto, CA to Stanford University.  We were then told that this was not an "emergent" situation due to the fact that my cyst had not grown.  They did not believe that surgical intervention was necessary.  They also said that they did not feel that the Pineal Cyst was the cause of my symptoms.  We asked them if they were 100% sure and their answer was "No."  We also asked them if they were 100% sure based on imaging alone that my cyst is not cancerous (There is a high occurance of cancer in my family; my grandfather passed away 11 years ago from brain cancer) and their answer, again, was "No."  The neurosurgeon said, in these words, "Well, since the cyst has not grown, I will not touch it."  My parents asked him if they could be 100% sure that it hadn't grown dramatically before the discovery of the cyst?  His answer, yet again, was "No."  The neurosurgeon told us that if it grows, he may consider surgery.  They want to monitor the cyst via MRI scans every 6 months.  I pulled him aside and asked him what we should do in the meantime.  He regurgitated the same response, as if he was a broken record, that he will not "touch it" and it is not "emergent" and he "might consider" surgery upon growth.

 

My family and I left extremely frustrated and decided to contact a neurosurgeon at UCLA; my dad's alma mater.  The neurosurgeon at UCLA required me to repeat the MRI scan and send him my medical file before he would even talk to us about my cyst.  He said that he would review everything and make a decision on whether or not to accept me as a patient. After sending the new neurosurgeon all of my records, copies of my scans, doctor's reports, and numerous test results, he decided not to accept me as a patient.  We were told, quote, "The cyst remains the same.  No neurosurgical intervention is required at this time.  He will not accept the patient but the pediatric neurosurgeon might, the doctor will be forwarding the patient's information to the pediatric neurosurgeon." 

 

I am so happy that you have found a neurosurgeon who is actually willing to perform the surgery!  It seems as if it is like pulling teeth just to be "accepted as a patient" if one is a minor.  I don't think doctors believe that minors have legitimate pain or can vocalize the extent of it. My primary care physician will not consider prescribing pain medication due to the fact that I am a minor and pain medication "can be addictive", and my neurologist told me to go take an Alieve.

 

My family and I are wondering who your neurosurgeon is, and where their practice is located? (We live in Central California.)  

 

This malady has completely derailed me.  I feel as if my life has come to a screeching halt.  Although I am only 15 years old, I can truly say that my Pineal Cyst has been by far the toughest thing my family and I have faced. We are actively seeking a neurosurgeon who fully believes that pain does not discriminate regardless of gender or age, and are open to any suggestions or referrals you may have. 

 

Thank you for your time, and good luck with your surgery!

 

Bailey Womack

Hi Bailey!

Thank you so much for sharing your story.

I'm so impressed with how well you told it!

My 16 year old daughter also was diagnosed with a 1.2cm (12mm) Pineal Cyst last week, also a very athletic person, also a AAA student.

I am wondering, how are you doing now?

Thank you everyone else for sharing your stories too.

Do the symptoms ever go away?

Please answer, as I am desperate!

Thank you!

Vicky

Bailey, Please let us know how you are doing...what has transpired since your Post and how you have dealt with your challenges along the way.

 

Teri LeDantec-Boswell

I haven the same problem but can't find a sergeon that will do it. Did you have it removed and what was the outcome

 

thanks kathy

hello i am 44 yr old and i am going through the same as you they noticed my cyst a yr ago it was a pea now a dime size and the same symptoms as you and my nerosurgeron is telling me its not from that and i dont know what to do can you give me some advice

Hi~ I read all of the posts here, and also the same info by Internet search. I was told in the past week that I have to have a cervical fusion, to repair the damage that 4 car accidents caused to my neck. I was also diagnosed w/ ABI, from concussions. These accidents were all within 3 years of each other, the last one in december , 2008. The original MRI of head did not show any abnormalities except to the frontal lobe. Now, I have learnt that I have a 1.9 cm growth. My question is: do severe whiplash/ injuries cause abnormalities to show up? I am really struggling w/ the complexity of situation. My neurosurgeon is fast-pathing the fusion, as without it, there is potential of paralysis..yet, what comes of this? Any input would be greatly appreciated! I live alone, and am searching currently for a psw.. Thank you, Jan

I also got diagnosed with a cyst in July of 2011. My doctor also told me that i have had since 2009. I got mad and concerned right away, she told me nothing to worry about. I do worry I have three children, I get headaches all the time, I get fuzzy headed, confused, my memory slips on me at times, sensitive towards light sometimes i just don't feel right and I even suffer from seizures. I'm only 30 yrs old my cyst is 3mm. I looked online and a pineal gland is 5mm-8mm in humans. It makes me really wonder if this is the reason why my headaches come at times they get so bad I go to the hospital. My doctor isn't worried should I be?????I just don't know what to do.

hi i cant answer your question about the denver area..i have heard of a dr at skull base institute Dr. Sh.. something. Can I just ask though when were you diagnosed with your cyst and at what size was it found? And have you always had symptoms from it? Does your dr believe it is causing the fuzzy head feeling? And can you describe your fuzzy head to me. Youve had that feeling for 7 years!? and what are your vision changes? sorry for so many questions but i have a pineal cyst too and have what i call a fuzzy head but everyone seems to describe it differently and my eyes feel weird but not necessarily vision changes..like no blurred or double vision. my eyes just feel weird when i get my fuzzy/tired "attacks"

Has anyone noticed that most of the people diagnosed with cyst on pineal gland are females?

Yeah it says that when you read about pineal cysts...more frequent in women and esp. 40's but i feel like its mostly younger people than that

Hi turtlemom!

Thanks for your statement.

My daughter has extremelly irregular and  heavy periods.

Is that what you call "hormaone fluctuations"?

And she also says that she is in her "own world".  Probably this is the same as "fuzzy headed"?

 

Has anyone noticed that most of the people diagnosed with cyst on pineal gland are females?

Thanks, and good luck for all of us!

Vicky

yeah can you descrbe more about her "own world" cuz when i feel that way.my foggy fuzzy spaced out anxious way i could call it my own world. wouldnt wish the strange feelling on any one except my dr. so he can know im not bullshitting him..but anyway, can you just ask her to try to describe it. i know its hard to find the right words for this feeling,but im wondering if its similar. and is it constant or just sometimes? worse near ovulation or menstruation? and i dont know about the periods i know there are some theories about the pineal cysts and early puberty and stuff and ive heard another about the growth of them during puberty or pregnancy because of hormonal changes...also the pineal gland controls melatonin and there is a link between melatonin and sex hormones...try readng about that

Hi

I just tried asking my daughter again, but she does not want to talk about this anymore.

However, I found a website that has been quite useful: http://rarediseases.info.nih.gov/GARD/Condition/10723/QnA/26006/Pineal_cyst.aspx#3249

Thanks,

Vicky

Find a different doctor.  It is operable, I had it done in September.