Diagnosed with pineal gland cyst

[coachlinda]

What symptoms can this cyst cause? My daughter has had muscle tension and aches from her neck to her legs for a while now. I have read that the cyst may cause such problems. She also has headaches sometimes on the side of her head. Does the cyst enlarge with time?

The cyst was discovered with an MRI her neurologist ordered.


This discussion is related to Pineal Gland Cyst.

[Dscriptic]

New research is being done on pineal cysts and tumors.  I was diagnosed in 2003...have had debilitating migraines and chronic pain, double vision, see halos around lights, didn't recognize my own children for several months in 2005...my neurologist said I must have had a stroke, but I'm not sure that's right because it didn't show up in any new scans.  Also have had memory problems.  There is a place in los angeles, ca that does a new endoscopic type surgery and is actually finding out that these cysts (no matter the size) can be causing our symptoms as well as interfering with the normal function of our endocrine systems.  

[kennyjou2003]

I have collected some pineal cyst information and put them together in  my blog. I hope it could help those suffering for the disease. Please visit: kennyjou2003 dot pixnet dot net/blog

[Celijules23]

Have you ever been tested for Celiac Disease? It may sound unrelated but you having said you have headaches and stomach cramps and body pain leads me to this question.  I am not a doctor, but I am studying Holistic Nutrition and I am also a woman with a pineal gland cyst 1.5cm/1.6cm, I also have intermittent migraines which began in my mid-twenties and before I gave birth to my daughter I developed Chronic Fatigue syndrome.  I have felt much pain and have dealth with it all through natural therapies and avoided prescription drugs. Good luck to you.......I hope you find a doctor who is understanding and can help. Jules

[NoBAMA27]

Did they remove just the mass?? is youre Pineal gland still in tact? I too have this condition and have suffered awefull migrains for the majority of my life, i live in Arizona and my nero wont give me the time of day about this problem. please...

[3boys14]

I was just told my 4 yr old has a pineal cyst but that they are not dangerous and would require no follow up.  After reading these comments I am now very concerned.  

[Jules77733]

Wow, thanks for sharing your story, Barb! It's good to hear someone finally had success in convincing a doctor the cyst was a problem. Unfortunately, my cyst isn't causing hydrocephalus or any mass effect (so they say).

I've been experiencing a lot of nighttime headaches as of late, and for the past year or two, I wake up several mornings a week where I am actually clutching my head. Some of my family members have actually asked why I'm doing that, as though I was conscious of it! I also wake up with headaches every morning, and have plenty of headaches throughout the day. Sometimes they're so bad I can't function (even with medication); other times they're bearable and I just deal with them.

I'm having another MRI in a few months to see if the cyst has grown or is causing any problems, but I doubt it'll result in my neurosurgeon suggesting excision anytime soon. =( I'm having an adenoidectomy in a few days and my parents are worried enough about that--such a minuscule surgery, too. I couldn't imagine telling them I'm having a craniotomy.

Keep us posted on your progress!

[buffbarb]

I started having headaches, daily and neck/ear/jaw pain back in May 2010 - sudden onset. . Went to an ENT, a dentist, a TMJ specialist, back to PCP. In June started getting migraines - about 1-2x a week lasting for hours.
They did MRI in July and found a pineal cyst 1.2x 1.7x1.0. More tests, more meds, doctors telling me I've always had headaches, they were sinus headaches, that the cyst wasn't causing the headaches. Migraines were coming 3-4 times a week - lasting 6 hours or more, I was taking way lots of drugs and not functioning well.

Saw a surgeon at Barrows Neurosurgical in Phoenix (where I live) and she said we should rule out all other possibilities, try different meds. Of course good advice- no one wants a craniotomy right?
My MRI showed no hydrocephalus but mild mass effect on the tectum.

Went back to the ENT, saw endocrinologist, opthalmologist, two neurologists and tried 8 meds. Kept getting worse. September had more MRIs , they showed no growth- so we decided to wait and do another set of MRIs after Christmas and see if we could find meds to control the pain. Was having migrines almost every single day at this point.Also neck, jaw, ear and facial pain, some motion sickness too.

Was taking a ton of pain meds and topomax and imitrex every other day , sinus meds- you name it I took it and nothing was controlling it. Woke with a headache every day, was with me all day, went migraine at night. Was horrible and I'm no wuss when it comes to pain believe me.

I ended up in the ER Oct 18th with a migraine we couldn't stop. I literally cried for hours, two doses of IV meds, stayed in bed a week. Saw the surgeon & she read everything & said all conservative measures failed, she'd do the surgery. So on October 25th I had brain surgery. Posterior fossa craniotomy - so they went in from the back of my skull (which is why I still have my hair) , endoscopic tube up there and pulled out the cyst . And now five weeks later I have no more headaches, migraines, jaw/ear pain. All done. I do have alot of fatigue, some nerve pain which they tell me will go away (sharp stabby pains on the side of my head above and to the side of the incision) but totally worth it. I couldn't function with the headache- was in bed in the dark most nights, couldn't play with my kids, was pretty horrible. But I'm good now.

Was a scary month but have lots to be Thankful for. Great surgeon, great health insurance, supportive friends, family and church. Made it through and can now enjoy Christmas without daily pain. I'm on NO MEDS at all now except my thyroid meds and some melatonin for sleep (pineal gland controls circadian rhythms and sleep/wake cycles and still having sleep issues) and still some neck pain they think probably from scrunching up due to the headaches.

DO not give up. Read on pubmed.com and other published medical journals. http://www.ncbi.nlm.nih.gov/pubmed/18005138

Talk to surgeons. Rule out everything else it could possibly be and do not give up. I have complete resolution of symptoms other then the nerve pain which should dissipate with time.

Hope some of this helps
Barb
supersilks @ cox dot net  

[Jules77733]

I know exactly how you feel, except I can't even find a neurosurgeon in the area willing to give me 5 minutes of their time--just neurologists who are incredibly quick to dismiss any mention of a "pineal cyst". Like you, I never used to go to doctors unless I absolutely had to--and even then it was for things like sinus infections or a particularly nasty virus. I didn't start seeing specialists until my GP was confused about what was going on with me.

The best advice I could give you is not to give up, cliche as that might be. Are you seeing a neurologist regularly? I'd recommend finding one you can trust and like, and ask that they monitor your pineal cyst every 6 months - 1 year to ensure that it is not growing. In general, it's considered acceptable to live with the symptoms a symptomatic pineal cyst causes so long as they aren't life-threatening, rather than operating on it given its proximity to vital structures in your head.

At least your neurosurgeon recognizes that it's symptomatic! I've had just about every doctor I've seen tell me right off the bat that my pineal cyst is "not the problem" even though I've read plenty of journal articles that describe people having pineal cysts and my symptoms (indicating the possibility that my pineal cyst and symptoms are linked).

Your GP shouldn't be making the decisions about your pineal cyst; ideally, a neurologist should be. But if you aren't able to see a neurologist or find one you like, have your GP understand that the cyst IS symptomatic and must be monitored for growth at least yearly. You may also want to experiment with more migraine medication if you haven't covered the full spectrum. It took me some time before I found a preventative medication that works to cut back on my daily headaches (Propranolol) as well as the correct dose. I also recently began taking a medication for when I have an actual migraine (to stop the migraine while it's ongoing)...even though my neurologist has known about my migraines for two years now. This medication seems to be doing an ok job, but I might see if there is another one out there that would work better for me when I have an attack.

Hang in there and keep me posted on how things go for you. Just know that you're definitely not alone and we're all struggling with a similar battle that's not likely to ease up anytime soon. =(

[doureallycare2]

also just have to say that Im feeling pretty hopeless and am sure I will end up losing my job over this.

[doureallycare2]

I met with the neurosurgeon and here is the scoop, I have a 1.4 ct. symptomatic Pineal Cyst.   There is no blockage of fluids and he does not believe it to be life threatening. He very kindly gave me 5 min of his time, no test or even questions.  When he went to dismiss me after 2 min,  I told him of my inability to look up, the spots in front of my eyes all the time, my falling down and tripping because of dizziness and he said it can all be caused by high blood pressure (which I have never had). I have to have an MRI every 6 months to make sure it hasn't grown or isn't blocking any fluids.  For now they are going to try and treat the symptoms and hope at some point it becomes asymptomatic, the only medication that helps a little is the muscle relaxer to help me sleep at night.  Pain medication does not help and migraine medication does not help.  I’m making to many errors at work and have almost life anymore.  I guess like others on here I’m left in no mans land.  I have no idea what to do... I’m not the type of person to bug my general Dr since it took a lot for me to go there in the first place.  I’m meeting with her in a month to discuss it all but what will she do if a neurosurgeon wont do anything?

[Jules77733]

I'm glad to hear you had doctors willing to take care of your pineal cyst immediately--you had a quite large one, too! I don't have answers for most of your questions, but I do know that pineal cysts can, indeed, return...but probably not during a time span of 12 weeks. Usually, they return if they were merely drained...but it sounds like you had the entirety of yours removed, right?

Hopefully, it didn't return. With your headaches, however, you might want to request a follow-up MRI sometime during the next few weeks to be sure there weren't any surgical complications or new problems. It's also possible that you have headaches from allergies, or from your body healing. Or maybe you suffer from migraines for some reason.

Let us know what happens, and I hope you feel better soon!

[Frances123]

i had headaches that 3 motrin wouldnt kick anymore, headaches that were like tension headaches that got worse when i changed positions?  Then one day my R leg didnt move forward in a walking motion?  Freaked out called my primary doctor .... MRI 2.6cm pineal cyst with hydrocephalus had surgery in 1 week, stealth craniotomy inicision is above my R eye in my hair line, unfortunately 3 days later needed a ventricular peritoneal shunt.  Dont understand why when the cyst was removed that the CSF didnt drain correctly on its own?  Been 12 weeks later headaches are returning?  Tired of foggy head feelings and ready for follow up appt in June with another MRI.  Do these things return?  How long will the shunt work? Wish anyone who has to have the surgery the best of luck!!  Go gators!

[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.  More rare is emotional lability, fatigue, ringing of the ears, and numbness / tingling.  In extreme cases, pineal cysts can result in loss of consciousness and 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.

[Tammy0054]

I am a 22 yr old female, who has a pineal cyst that is 2cm in size. I have had severe off balance problems, vision problems, my arms and legs go numb as well as parts of my head. I also have severe pains in my head that tend to wake me out of a dead sleep. I as well have got the run around from doctors saying that it can not be causing the problems I have its coming from something else. I go to see another neurosurgeon for a second opinion in 2 weeks, we'll see where that goes the last one said the surgery was too risky unless it was growing which it has. It has grown 0.5cm in the last year, and still haven't had anything done.

[Steffany]

I agree. I was finally told by my neurologist after my last MRI last year to go see the surgeon at the University of Miami. I waited for 2 hours for him to tell me everything is fine. Even though it has grown each year and had gotten more fiborous this last year everything is still normal.
I have very bad vertigo from time to time, but no one can explain it. None of the antivertigo or anti-nasuea meds work. They say they don't know what's causing it, but it has nothing to do with the cyst they found 4 years ago when I first starting having problems. There has to be someone doing a study or something on this. The doctors don't even really know what the pineal gland does, so how do they know these are not symptoms?

[NuttyNatalie]

Hi All, My name is Natalie and i'm 26 years old. I was diagnosed with a Pineal Galnd Cyst in 2005 after a 3 week stay in hospital.

I had Mild Generalised Cerebral edema and ended up not being able to speak for 2 months until the swelling in my brain had fully gone. It also disabled all my trunk muscles and i found it very hard to walk. The Dr's never could give me the cause or any answers as to why this had happened to me.

Subsequent to that i have MRI scans every year so the neurologist can monitor the growth and density of my cyst. Up until my last recent scan everything seemed to be the same. I had an appointment on tuesday only to be told that my cyst has got bigger and changed in density appearance. It is now 20mm big. I have constant headaches, my vision is getting worse, sleep all the time but i'm constantly tired, but still neurologists keep saying to me its not anything to do with the cyst !!

Because it has got makeably bigger ( +0.5mm in a year ) i am now being refered onto a neurosurgeon, but being told by the neurologist that my symptoms are not being caused by this so i don't think he will do anything.

Why are there so many people out there in the world who can't get proper treatment for this condition without a full scale battle on their hands. I'm starting to lose hope in the people we should be able to  trust the most. . . . . . . . .

[sandy4255]

I am 54 yrs old and was diagnosed with a pineal gland cyst in 2001 and by 2003 it was over 2 cm in height and width and was call a tumor I went to a neurologist and he told me that I needed to have surgery because if it grew any more I would go into a coma and die. i had a craniotomy and three months latr it returned and was tge same size but a little shorter in height,he told me that it was too dangerous to do another craniotomy.I have alot of headaches, which have been more frequent lately.I haven't had a MRI in over 3 yrs, but have thought about having one since I have had more symptoms in the last year. I have a strange pain on the right side of the top of my head, that is kind of like someone is pulling my hair in a certain area and it kind of burns too. I 've had this same pain on my right leg that comes and goes just like the one on my head. Sometime I think I would rather not know , but my husband saya I should check it out.I do know that when ever you have something like this you look at life differently.Good luck with your pineal gland cyst and I wish you the best. Enjoy the life you have and always treat people the way you want to be treated ,because none of us are promised tommorrow.

[sarahren]

On a recent CT scan my daughter's pineal cyst has grown in the past 3 years from her MRI @ birth. It has gone from 4mm to 9mm. Surely more growth could happen, but how big do they get b4 causing issues?

She already has hydro from birth anyway.

[mikemcsw]

my daughter has same symptoms.
back ache, neck pain, blurred vision.  the stomach pains may be to the pain relievers, but confident that her 1.1 cyst is the main culprit as everyone who seems to have these "incidental" cysts, have the same symptoms.  the doctors are idiots.

[Jules77733]

Geez...the seizures definitely sound like the pineal gland cyst at work. How large is your cyst, currently, and how large was it when it was first discovered?

The headaches that get worse with light were probably evaluated by your neurologist as migraines, which is why you're on Maltex. It is possible for you to have migraines/headaches not related to the pineal cyst, but it sound like your cyst isn't doing you any good.

Pineal cysts are considered benign brain tumors, since the Latin meaning behind tumor is just "abnormal growth"...and a cyst IS an abnormal growth. As of late, though, "tumor" has come to mean a "solid mass" of sorts that causes symptoms, whereas cysts don't generally cause symptoms.

sarahren--I'll check out your blog soon, and let you know what my thoughts are. I'm sorry I didn't realize earlier that you had responded! Sometimes I forget to check back on these threads......I hope Violet is doing well, regardless!

[mandy84]

I have a cyst on my pineal glad. I am 24 I have had so many problems that Dr.s can't explain.  Since I was six I have had sever leg pains. All they can tell me is that they are not in the bone. To me they feel like they are in the muscle or nerve. The pain has spread in to by back and arms.  It is not all of the time but most of the time and when it gets bad it's crippling.  Also I have sever headaches I have had them as long as I can remember. The headaches never really go away but the intensity changes sometimes to the point that I can't open my eyes (light makes them worse) or even function really but about a year ago they got so bad a doctor put me on Maltex and it helps tremendously. Also I have had horrible stomach pains; the list really does go on. I periodically have seizure, (I've been tested and do not have epilepsy) some weeks I can go days with out sleeping and other weeks I can easily sleep 16+ hours a day.  A Dr had me do an MRI during the epilepsy testing and they discovered the Cyst on my Pineal Gland. They told me it's like a tumor but not really, as long as it doesn’t grow or move I'd be fine and it's not really operable unless it gets bad. And that was it, that’s all they said. I wonder if they symptoms could have any thing to do with the cyst.

[sarahren]

Oh forgot to mention Violet is 3

[sarahren]

Thanks for your reply...

Sorry I left out the fact that she did have a VP Shunt put in @ 5 months of age for her hydro.

She has only had the 1 MRI @ birth and since that CT scans...

My concerns are: Will it grow? Has it grown? They have done CT scans
over the past 3 years to check the flow of her shunt but no mention of
the cyst. Do they show up on CT scans too?

Have a blog on my daughter: www.violetsjourney.blogspot.com



To me any cyst in the brain couldn't be a good thing.

[Jules77733]

I'm no doctor, but it sounds like that might be possibility. The pineal gland, itself, is only 7.0 - 7.4mm (perhaps smaller in children, depending on your daughter's age).

You might want to take your daughter to a neurologist, and they will likely monitor the cyst for a year to see if it's growing, but if she is experiencing hydrocephalus and it is still showing up on the MRI as hydrocephalus, the neurologist might recommend the cyst be treated immediately, as hydrocephalus is life-threatening.

Good luck!