Pineal cyst causes and effects

[sdwcaddell]

I really would like to know what are the main cuases of a pineal cyst??What are the effacts?? Can they really cause sudden death??

[Redruby900]

I did have my pineal cyst removed after it caused what symptoms most here have talked about. I was eating ibuprophen, Aleve,Tylenol by large amounts praying for migraine relief.Most Doctors do not know much about this glande and blow off your symptoms as something else is causing it. Well no. It was and helped immensely to have it removed. I didnt have an easy surgery,it went a bit wrong and had repair done 4 yrs later to my head basically. They cut a fist size hole into the back of my head and I guess I was too swollen to put the cap...back on and I got meningitis. Risks I guess..but hard ones. I suffered a long while and eventually a specialist at a University was able to put a titanium plate over the back of my head. My symtoms pre surgery were so much better.im glad it was done. I have effects from the meningitis damage and very sensitive skull there but glad to not feel the way that I was before. So I hope this helps somebody,my semi story. Theres so much more it'd be a book,ugh. I wouldnt listen when I was told by one neuro we d just watch it grow. I had horrible migraines n seizures n vision damage and wasnt going to sit back and watch it. I went to a few opinions before electing for the surgery. There are huge huge risks so it was quite scary.im just saying that me personally am glad its no longer there festering..because they just do not know and no more massive migraines! Take care and God Bless you all who are going through this and Wish you best of luck:-) :-)

[AnjaO]

26 Female, non-smoker, never pregnant here. 9mm cyst.
I had all the same symptoms as y'all, brain fog, headaches, weight gain, double vision, my eyes twitching side-to-side when talking to people. and how laying flat helped (unless I looked slightly left and back, weird).
After unsuccessfully fighting the VA, I got fed up and started searching around and found a ton of information on pineal cysts. Two neurologists I visited, blew off my symptoms, par usual, and I finally ended up in the care of Dr. Dong Kim at 6400 Fannin Street in Houston, TX. and let me tell you;
I went in for a visit and then had pre-op scheduled. No problem, wash with a Chlorohex and usual pre-op precautions. Shaved my head two days prior to surgery: Dec 2017.
Day 1: Woke up in hospital after surgery with no problems, ate and felt great.
Day 2: Headaches, 7/10, probably due to the swelling.
Day 3: Headache still 6-7/10, discharged, and went home to recoup.
Day 4-7: Headache softens grip, ice packs to head may have extended problem.
Day 8-4 months: Headaches completely gone, no vision problems, skull is completely healed.
10/10 would do it all again for the relief I have gotten. If you're having trouble, /please/ go see someone who will actually care for you.

[Kaysmommy72099]

Please follow up with us about you surgery. I recently found out that my 15 year old daughter has been dianosed with a pineal cycts the is 11x4x5mm which is considered elongated. Her first MRI with contrast is scheduled for December 18, 2014 pretty big day for us all ! Her symptoms includes dizziness and headaches, she has had a slight change in vision. We are just getting started in this journey to recovery and would love to follow your story. I wish you the best of luck and pray that they help relieve your symptoms. Please keep us posted !!! :-)

Sincerely,
Kay's Mommy

[JanuaryD]

Hey. My 16 year old daughter was just diagnosed with this as well. Do you have any updates on your daughter ?

[MarjieBC]

Steve, What does the radiologist or your physician have to say when it comes to the definition of a simple pineal cyst?  Were you provided with the size? What symptoms are you having at this time?

[MarjieBC]

I currently have symptoms that were thought to be MS related as well as weird muscle and back pain issues. I was referred to a neurosurgeon for these issues. Upon a MRI and (three weeks of waiting while he was on vacation) I learned that I have a pineal gland cyst, 11mm by 7.1mm by 6.4mm. He said that because I was a-symptomatic that I was just fine and nothing more could be done. I then reminded him of the three pages of written symptoms I had given him on my initial visit.  It was then that he said, "well, lets get another MRI with contrast."  I underwent another MRI with contrast.  The pineal cyst remained.  He then called me to tell me, "we'd monitor it for 6 months to 1 year and see if there we any changes as I was a-symtpmatic."  I then reminded him of all the problems I was currently having, again (muscle spasms, pressure in the head, double vision, balance problems, tingling in the face, head, hands, feet, numbness, blacking out... He said, "Well, I'll check you again in 6 month then."  It was at this time that I began to delve into medical journals and discover that pineal gland cysts can cause quite a bit of havoc and from what I have discovered many mimic the symptoms of MS.  In my research I discovered the SKULL BASED BRAIN INSTITUTE in Los Angeles, California.  I called and spoke with them and had all of my records transferred and have gone through my consultation and am scheduled for surgery on December 18, 2014.  I encourage all of you with symptoms to disregard your doctors inactivity/dismissals and become an advocate for yourself! Please Google SKULL BASED BRAIN INSTITUTE and become aware that you do have a informed advocate surgeon who has studied this area and knows that pineal gland cysts DO CAUSE ISSUES! While you are on their site, take time to watch the video.  Good luck and don't let your doctors apathy/shame/lack of care/ignorance make you wait in pain for him/her to take action. Be proactive in your own health.

[WhoDatAmy]

Hey, I just found this page tonight. I read your statement above, I also have multiple sclerosis. As well as the pineal cyst. I was wondering if you wouldn't mind talking further at some point.

[cgravante]

i saw your post and i am so sorry to hear your son is having problems. please consider calling Igenex Lab in CA  to order a test kit and have Lyme and co infection tests. Take a strong antibiotic 10 days before testing.  this is a common symptom of Lyme and co's and need to bre ruled out by only this lab or a lab called Advanced Lab.  quest and lab corp are only 30% accurate. hope this helps.

[stevierat]

Hi have you add any progress on this? I have had similar symptoms for about 6 years. Memory loss, confusion, bad co-ordination, sometimes speech problems. I am 38, male. I have been to 3 neurologists, finally got an MRI couple of weeks ago. The report says, 'I am pleased to note that the scan was completely normal apart from the coincidental finding of a simple pineal cyst'.

I also sometimes feel light headed, and sometimes it feels very extreme, and I want an explanation and resolve my symtoms.

Steve

[Windysocean]

Hello Deb,

I have a complex cyst, I've never discussed my health much but I will now.
I am not fearful, I've finally found out what's wrong with me.  What a relief. I know I was born with it, I used to have my mother drag me to the doctors at 8 years old, saying, my head hurts.  In any event, my head does hurt, my hand has a tremor, my right leg tremors when driving and I have headaches.  You can't get rid of them with Asprin. I'm a wait and see, watchful waiting.  Not keen on the idea of surgery but the cyst has given me all the symptoms no one wants.  I'm depressed, have eye headaches, and not complaining.  Just telling people you are not imagining it.  I even made the bad decision of leaving my husband, I truly could not think straight.  I was unable to work, think, or sleep The emotional lability might have been more serious than I realized before my diagnosis.  LOL  Brenda Boston/ NYC

[xjennabennax416]

I know your post was over 2 years ago but was wondering if you have any update on your symptoms. I am a 26 year old femals andI found out 3 months ago that I have a pineal cyst 0.9cm in diameter. I started having really bad mind fog (confusion, feeling out of it all the time, losing coordination) fall 2012. They tested me for lyme, stds, vitamin deficiencies and everything was negative/normal. They sent me to the neurologist who sent me for an EEG and an MRI. She told me the cyst doesnt cause "mind fog" but based on what I have been reading from different people with this type of cyst, it seems like many of them have this confusion/feeling out of it, almost like youre half asleep or the groggy feeling you get when you are sick. At first me doctor told me it was 0.5cm and nothing to worry about, I then requested a copy of my MRI and saw that it was actually 0.9cm. Please let me know if youve had any improvement/insight on what is causing your neurological symptoms. thanks!!

[srt4girl]

I have discovered in June I had a 1.7mm pineal gland cyst. I've been scared of stuff like death and dieing. I'm only 22 and suffered migraines for as far as I can remember. Happens for about a full month of the year then resides,but I have headaches on the regular. I haven't found a post or place to write about my concerns, I've been to 2 different hospitals and both nuerologist told me they can help me with surgery because the gland is next to the optical nerve and they dont want to help me take it away. They actually even told me "unfortunately your one of the unlucky ones I'm sorry" I felt scared and like I was given a death sentence..I don't have insurance or anything and I haven't gotten evaluated again since april-june. I don't know what to do I'm pretty much depressed about it. Can anyone help me out please.? Thanks
Annette

[AnjaO]

Are you ok? I know this is old, but I really hope you got help.

[his26]

Not sure if you will get this.  There is a doctor I see in Savage MN, just south of Minneapolis, called Life Force Family Chiropractic.  He specializes in working with the nervous system (this controls all functions in our bodies) and it has helped me in so many ways.  I strongly recommend that you look into it.  It has saved my life and many others.
The Awesome thing is, he is also a believer in Jesus Christ, I know that God led me there!

[DebR1961]

I was having severe ringing in my left ear so the doctor ordered an MRI, which came back fine for the ear; however, a pineal cyst was found.  In addition, I have had extremely blurred and/or cloudy vision.  I went to an eye doctor and my vision is 20/20; however, the doctor said my eyes were extremely dry and couldn't tell me why.  My MD referred me to a neurologist, who basically told me that the pineal cyst was nothing to worry about and to reschudle another MRI in 6-12 months to see if the cysts has grown.  I asked about the blurred vision, the left ear ringing, along with numbness, tingling on my left side and occasional headaches.  He told me it was nothing to worry about.  Not that I'm in a hurry to have my head opened up for surgery; however, I don't want to ignore all the symptons my body is throwing at me.  Any advise or recommendations from anyone who has had similar symptoms?

[Want2Live75]

Can a  symptomatic pineal cyst, Abnormal CT of basilar artery, and ALL the symptoms of a CVM (prior injurieS to C7), severe upper back pain(any stimulants seem to make pain almost unbearable), hearing loss, mood disorder diagnosed, diagnosed ADHD, hand tremor, bouts of insomnia, diagnosed gout, recent hospitalization w AMS, inability to have a normal spinal tap but was treated for incephilitis OR meningitis (they didn't know for sure bcuz they treated me w antibiotics before the alternate way they drew spinal fluid),  high blood pressure, exhaustion, wide spread pain, chronic ear infections, diagnosed mastoiditis, recent bells palsy, rash on scalp w no symptoms, muscle twitches, chronic dull pain in upper right abdomen, ruddy complexion,  Diagnosed IBS, and difficulty swallowing ALL BE RELATED INTO ONE HIDEOUS (But hopefully cure able) AILMENT/DISEASE????? Also I am 36, Obese, Female. Gall bladder and Appendix have been removed. 3 hard, but successful, pregnancies ( all came early w symptoms of eclampsia), and a thyroglocyl duct cyst removal around pubescent years. I feel a little better when horizontal. I have suffered a long time and things just get progressively worse. I truly wonder if I am dying. I so sick that I even drawing up my will so I know my children will be in good hands if I die. The pain and symptoms associated with each thing is overwhelming. I am not able to work and even w proof of all these medical issues I am not approved for disability. I can't afford insurance and bills are piling up. My mom spends everything on me to help me and my children. I can't be who I really am because of all these ailments. I like myself but HATE my body because it is torture to live. A dream come true would be to have a career as a Special Ed.Teacher, take care of my kids without assistance, to have a friendship w my parents instead of a dependent relationship, to have energy to cook meals, do my own chores without constantly asking my friends for help...to just be able to be me. I pray and I know God loves me and provided everything along the way. I know all the research and questioning experts can get me headed in whichever path Christ Jesus has for me: preparing for death or finally heading toward healing. So, at a time when I truly want to be independent, I will continue to ask for help. Will you please help me?

[Dr Sharma]

Hi there. Pineal gland cyst itself is usually benign and the patient is usually asymptomatic. the concern arises when you detect a change in size on multiple serial MRIs. a large cyst could cause compression of cerebral aqueduct and symptoms and signs of hydrocephalus. Otherwise, it should not be a cause for concern. I would still suggest that you consult your neurologist to give you a trial of different drugs to control a migraine attack if topamax is not effective. CAM treatments or complementary and alternative medicine is also effective for pain management. Acupuncture involves insertion of needles into specific points to promote energy flow and pain relief. Biofeedback involves patients learning to interpret their body’s signals and then promote a natural response. Chiropractic and manipulative treatments involves adjustments made to the spine and the musculoskeletal system to rectify the imbalances. Other therapies are stress management and relaxation techniques. You must get in touch with your neurologist and discuss these options with in detail. Take care.

[Katie1974]

I am a nurse and on Chistmas started feeling bad well two days after Christmas my head felt like it was going to explode and my neck hurt so bad. During dinner I couldn't eat I told my husband he had to take me to urgent care they did lab work and told me I needed to go across the street to the ER. They did a CT scan and a lunbar puncture gave me some meds though the IV and sent me home saying I was just having headaches everything was clear well over a week later I got a certified letter in the mail saying I needed to contact the ER regarding my radiology report. I was told over the phone that I had a pineal cyst. I contacted my PCP the next day. The following day I saw a neurologist and had MRI and was told they were common and that there is no way this is what is causing my continuing pain. I have had a seizure. I am on Topamax for Migraines which is not help. I have so much pressure in my head. I am very confused all the time and need to think really hard to say the right thing. I say the wrong words a lot and I becoming very clumsy I am having most of my pain on the right side. The size of my cyst is 1cmx1cmx1cm. I have seen a Neuroseurogeon and he said he doesn't believe this is causing the problems either. I do not feel like this is all made up in my head. I really have this pain and am at the end of my wits. Does anyone have any idea of any docs that have done surgery on these cysts near VA? PLEASE HELP ME AND MY FAMILY???????



I Need Help Findind a good Neurosurgeon who will do this surgery. I have had 3 seizures this week and am having constant migrane. PLEASE HELP ME SOMEONE!!!!!!

[hdtv]

My son is 25 and has had 8 seizure in the last 18 months, and has be told that he has a Pineal Cysts, but the Neurolgists has said nothing to worry about, as his mum, I can see how my son is  with me and other people and it is not nice to see. He has memory lost,anger issues, personality change after he has had a seizure. Please if you can help me to help my son that would be great. Thank you from Los

[mlhayes]

I have a 6 year old who is suffering the same issues. We were told today that the MRI he had shows a "small cyst on the pineal gland" but "it's nothing to worry about and wouldn't cause the seizures". I'm not sure if I believe that.

[mlhayes]

I have a 6 year old who is suffering the same issues. We were told today that the MRI he had shows a "small cyst on the pineal gland" but "it's nothing to worry about and wouldn't cause the seizures". I'm not sure if I believe that.

[ycompanys]

Neurologists may be very quick to tell you that you are fine with a pineal cyst and that it is not causing your symptoms.  But beware:  1) Doctors in general don't really understand what the pineal gland does; and 2) Some don't seem to understand the difference between symptomatic and asymptomatic pineal glands and tell their patients not to worry about pineal cysts.

Some things to keep in mind, according to the medical literature:

1) The most common symptom is headaches, followed by vision problems, dizziness, and balance problems, and in some cases insomnia, nausea and cognitive deficits.  In fact, a study that showed an almost perfect correlation between migraines and pineal cysts.  More rare are emotional lability, fatigue, ringing of the ears, and numbness / tingling.  In extreme cases, pineal cysts can result in loss of consciousness, suicide, or seizure disorder.  So please take this seriously, particularly if the cyst is causing intracranial pressure such as hydrocephalus.
2) Pineal cysts can be symptomatic if they are larger than 0.5 cm.  Problems occur when the cysts cause compression in the brain, or when they are associated with apoplexy or hydrocephalus.
3) Radiologists cannot easily distinguish between cysts and benign tumors, often leading to misdiagnosis. NOTE:  A benign tumor is not metastatic, not malignant.  It is extremely, extremely rare to get a malignant, metastatic tumor in the pineal gland, so please do not worry about this unless your radiologist/doctor has told you otherwise.
4) It is common that patients are told that the pineal cyst cannot be affecting them after a neurological test.  But note that some patients present no neurological symptoms in these tests, while still having the symptoms in 1) above.
5) If you are in the 18-34 age group, your cyst can grow, so you should get MRIs every 3-6 months.  If your doctor does not want to, get a new doctor.
5) If you have to get surgery, get the following one but only if you have compression or hydrocephalus and your symptoms are incapacitating:  Suboccipital craniotomt with infratentorial-supracerebellar approach and microsurgical resection of pineal cyst.  Contrary to what is stated above, this is NOT brain surgery.  They access your pineal region from beneath the brain, so they do not affect your brain at all.  It sounds like a scary procedure but is actually straightforward for a good brain neurosurgeon.  The surgeon essentially inserts a microscopic endoscope that magnifies the area by 50x and uses a navigation system to get him there.  It is minimally invasive.  The medical literature says that most patients whose pineal cysts are not too large (e.g., < 4.5 cm) become completely asymptomatic after surgery.  The surgery entails a 6-8 week recovery, and a small incision in the head and removal of skull bone, which grows back after surgery.  The biggest risk associated with surgery is infection, as with any other surgery.

The most important thing is to get a doctor who takes your pineal cyst seriously.  It is a rare disorder, and few doctors understand it well.  So you will need to be persistent.

Good luck.

[Wuzwas67]

Thank you for your description, it was a real help for me as I am going into surgery to drain a very large pineal cyst size of a large grape on aug. 2 2017 .

[JodiW]

Hi there,

I was just diagnosed with a moderate pineal cyst the other day myself (22 x 21 x12 mm, I think that is HUGE personally), from alot of internet reading and talking to two seperate gp's (what can I say I wanted as many opinions as possible and am still waiting to see a neuroligist) they are unsure of the cause of pineal cyst.  Although there is a school of thought that they are a congential defect, that is they appear during gestation and typically in the first 2  - 5 weeks of fetal development.  This means that people who are diagnosed with having them have had them from since before they were born and will continue to have one throught their lives.

They typically are either catagorised as symptomatic or non symptomatic.  Myself mine in non sympotomatic (a small mercey in this really stressful time mine was a incidental finding on a CT and I have a MRI sheduled for next week... again terrifying).  Symtpomatic  cysts typically will cause headaches/migraines and an array of other symptoms depending on the areas of the brain they are touching.  Other syptoms Ive read about are blurred/double vision dues to fact it is close to the optic nerve, nausea (althoug this may be stress related), tingeling in extremities, panic attacks (again stress related and could be depended on the fact that the pineal gland is in the primitive instinct part of the brain that controls sex drive and fight or flight  responses) and dizzyness (in my experience part of a panic attack).

My understanding is that they are very rarley dangerous, they cannot burst or hemmorage and in almost all cases they are not treated (brain surgery is the only way they can be drained and they only do this if they really really must although my gp said as fair a brain surgery goes this is relativly simple. Though I'll spare you the details he gave me, made me feel more than a little queesy!) and are simply monitored periodically via MRI. It is very unlikley that they will go away on their own. They are not a type of cancer or tumour for that matter, they will not turn into cancer and the vast majority of people go on to lead normal and uneffected lives. They do not increse your risk of other cancers.

I hope this helps, I wish you or whomever it is you know who has one the best of luck.... like I said I was just diagnoised with one the other day and it is terifying to say the least and you stress out about the possibilites of cancer ect but as my doctor said, typically they are nothing to be concerned about and there is a one in a million chance that any type of action will be required!

Jodi