There is no standard recommendation and absolute rule for monitoring these types of cysts. Some neurologist would be comfortable with a yearly scan while some would opt for a 6 month interval scan. The frequency of monitoring would also depend on the symptoms that you are experiencing and the progression of such, if any.
There is also no standard size by which this would cause symptoms. As a rule, if the cyst is compressing on nearby structures, whatever the size, this would surely cause symptoms ( the first symptoms are usually visual in nature ).
Thank you so much for the reply. Any comment reguarding the septation of the cyst? What is it and is it normal for a pineal cyst? Thank you again!
hi my daughter is 4 and she has got a cyst on pineal and on pituitary she has mri scan every year.do you have sleeping problems cos the pineal producers a hormone called melatonin my daughter does not sleep very well and this problem only started when she was 2 i asked the dr if this is why she does not sleep he said he does not think so but i think it has something to do with it.hope this helps
Yes, I have trouble with sleep. Sorry to hear about your daughter. Glad to hear her doctor wants to keep checking with MRI. I really believe pineal gland cysts cause more problems than doctors believe. I have known about mine for a year, and what symptoms I started with have slowly gotten worse with no diagnosis. I have met several people online with these cysts and alot of the same symptoms. I have also met some that had theirs removed and their symptoms have disappeared. Really makes ya wonder!!
hi can i ask what symptons do u have if u dont mind me asking.my daughter is ok at going to sleep it is just that she will wake up at 2 or 3 and not go back to sleep.i read that the pineal produced more homone around 3 in morning this is when it produced the most all night so if this is when it produced the most my daughter should not be awake.why did u have mri scan if u dont mind me asking my daughter had one cos she went into early puberty at 18mth she is now on injections to slow things down.thanks
I was refered to the neurologist cuz the symptoms I was and still am having. To many to mention all but will list a few, headaches, dizziness, nausea, ear and eye pain, always tired, less feeling to right side of body along with more. They thought is was MS that is why I had MRI, but nothing showed except for pineal gland cyst. Has your daughter had a second opinion? Is the cyst the cause for her going into early puberty?
thanks for the invite and i will have a look at that site.no she not had second opinion when i asked the dr if this is why libby has gone into puberty cos the cyst he said he does not know if they are 2 different things or connected.i dont know about you but i find it very hard to get info out of the drs.
I have a lot of the same symptoms as sistam does, and my neuro wanted another MRI done in 3 months (this would be in October, for me)...which is interesting, because I had read that 6 months is the standard for "monitoring" these cysts. He told me I have migraines that turned into daily headaches, and put me on a low dose of Topamax to prevent these. I still get headaches/head pain every day, coupled with some intracranial pressure and dizziness (maybe the increased dizziness is from Topamax now, too), so I don't know where the migraines diagnosis came from. Perhaps I need a higher dose of Topamax to control my headaches, but I don't know if I could handle that.....I already feel pretty stupid on 25mg of Topamax and I'm an engineering graduate student. I don't think I can afford to get any stupider!!!
Hi my name is kim and i am finding all your info really helpful to me. i have suffered from intense headaches/migraines for the past 15 years and have been on the preventive meds nothing ever worked, i take migraine meds when they start most time to no effect. I have suffered from numbness in my arm, blurred vision, dizzy spells,earaches, and many more signs. In June i woke up with what i thought to be a crick in my neck, it got worse over the week, began to think i had pulled a muscle or something, when i awoke on sat. morning i thought i was having a stroke, my neck was pulled down to my left shoulder with intense pain throughout shoulder, neck, and left side of head. Had xrays done and showed nothing wrong with my neck. After about 3 wks of walking around with my neck drawed to one side it got a little better, but the headache only got worse. At 1st i think the dr. thought i just wanted the pain meds, ha they didn't help alot, so after about 6 wks of a headache that wouldn't ease they sent me for mri on neck and brain, where they found i have the pineal gland cyst. i am now going to have a mri with contrast to make sure it is a cyst and not tumor. What questions should i be asking about this? And is there something they can give to relieve the pain? Thank you for sharing your comments on here it is very helpful and relieving to be able to discuss this with people that are going through the same thing. My husband doesn't seem to understand how much this affects everything i do. I have extremely no energy and my headache will not completely go away.
Hi Kim, welcome to the club! I'm glad to hear you pressured your doctors into figuring out what the problem was...if you know something is wrong, you should never let them get away with marginalizing how you feel.
Get a copy of both MRIs--as a patient, you have a right to this, and no one should ask any questions. Tell them you want to hold onto a copy for personal records and for getting a second opinion, and that's all they need to know.
As for questions you can ask, here are a few I can think of off the top of my head:
How large is the pineal cyst (if they do find it is a cyst)?
Is the pineal cyst simple and non-enhancing, or does it exhibit any other characteristics (this will be seen on the MRI with contrast)--like enhancement or septation?
If they tell you it is a pineal cyst, ask them if they can be 100% sure of this--and since they really cannot (it's incredibly difficult and almost impossible, some would argue, to tell the different between some pineal neoplasms, like a pineal cyst and a pineocytoma; the latter is also benign but more aggressive than the former), ask them how they plan to follow-up with their diagnosis to ensure that it is a pineal cyst.
Are any of my (your) symptoms being caused by this pineal cyst? If their answer is no, you can ask why. If their answer is yes, you can ask them to explain how--depending on which symptoms they think are a result of the cyst.
What follow-up treatment or procedures will be done to ensure the pineal cyst doesn't begin causing any symptoms in the future (if they feel that none of your symptoms are being caused by the pineal cyst)?
What symptoms, if any, should I be concerned about as potential indicators that this pineal cyst is becoming intrusive and causing problems?
What are the treatment options, and what are the risks associate with each treatment option (if they believe your symptoms are associated with the pineal cyst)?
If I think of any other good ones, I'll let you know. For the pain, I would recommend an NSAID to reduce inflammation and then a painkiller, as you were already prescribed. How large did they measure your pineal cyst to be from the first MRI? The headaches likely won't go away until the cyst is removed, if, indeed, it is the cause of them (and it probably is). The lack of energy could be due to some interference with your sleep/wakefulness cycle, as the pineal gland regulates the secretion of melatonin, which controls your circadian rhythm. Like you, I also feel exhausted and energy-less rather frequently...and have weird sleep patterns, to boot. Research hasn't been able to link pineal cysts with disruption of melatonin secretion, from what I've read, so doctors aren't quick to link pineal cysts to sleeping disorders (I have sleep apnea).
Though, interestingly enough, a study recently came out that linked an increased formation of cysts and other tumors of the brain with children who used cell phones frequently, beginning when they were young, as compared to children who didn't use cell phones continuously from an early age. This included the formation of pineal cysts, and other tumors of the pineal region.
Good luck with the MRI and let us know how everything goes!
Thank you for your info. Yes i had another Mri done last week one with and one without contrast. They just called a few mins ago to tell me they were referring me to a neurosurgeon. That the cyst was fluid filled and pressing on some other place in my brain. It measured 1.2 cm x 8 mm. x 1.2 cm on my first Mri. They didn't tell me if it had changed this time or not. My physician says she is pretty sure that is what is causing my headaches to be so intense and my blood pressure to be out of wack, along with the other symptoms. But i am just going to stay on them until they fix something, life is miserable this way, and i have 4 kids that depend on me everyday. I will let you know what is said after i see the neurosurgeon. Thanks again for the info.
Ok i got my results back from the 2nd Mri with and without contrast. I am a bit confused. The report says that the cyst was now 1.3cm x 8 mm x 1.3cm which is bigger than it was the month before but on the papers he sent to my doctor it said no change in size. but obviously it is growing. Now i am having black out spells with my eyes and also when ever i move a certain way or walk i have something that feels like an electrical shock running through my body. What is going on? They are sending me to a neurosurgeon but i can't get in till Nov. 21. Does anyone have any details or suggestions? I am at a loss. This is really affecting my everyday life.
Thanks for any input anyone might have.
It sounds like your cyst is definitely changing in size, unless the radiologist carefully compared the two scans and realized that his initial measurement of 1.2cm wasn't correct (these measurements are based on 2-D images taken in certain intervals, so there's never 100% certainty when it comes to measuring the size). I'm not sure how much the cyst would have to change in size in order for it to be considered "growing"...but 1cm would be good enough for me to say it's growing! Why can't you get to the neurosurgeon sooner? Did you ask to be put on a waiting list, and tell them what your symptoms are? Sometimes, if it sounds urgent, they'll bump you up to one of their openings they have reserved for emergencies.
What are black-out spells with your eyes? Is this when they are open, or when you shut them and then reopen them? The "electrical shock" running through your body sounds like it has something to do with your nerves, though I can't say I've read anything about that happening with pineal cysts. If you could tell me what area of your brain the cyst was pressing on, I might be able to figure out what this is a result of. The eye issues are probably because the cyst is pressing on a portion of your occipital lobe, which controls your eyesight. This problem will go away once they correct the issue of the cyst pressing on this lobe, either by draining the fluid from the cyst or removing the cyst altogether.
I hope you can get to a neurosurgeon sooner! Get on the waiting-list for an earlier appointment, if anything....and hang in there.
I have a Pineal Gland cyst and suffer terrible with the symptoms. I need to know more about this.
I am so glad I found this website because I have all of the same symptoms as everyone here and I also was told I have a pineal cyst. It all started with blurred vision and eye pain on my right side. I also have reduced color vision. Then months later the dizziness, nausea, vomiting, memory problems, ear pain, head pressure, left sided numbness/tingling and extreme fatigue started. I have had a lumbar puncture and MRI. Thanks for the information on all of the questions to ask the doctor because I was seen yesterday by a neurologist who states the pineal cyst has nothing to do with my problems. I really don't understand how that can be possible?? The doctor I saw who referred me to this new doctor stated it might be a possible symptomatic pineal cyst. How can I find out what it truly is? I need some answers and fast because it is affecting my daily life now where before it wasn't as bad. I am being treated with medications for migraines now that do not seem to be helping at all. Is there something I can do or someone I can see who will take me seriously? Any advice on what to do?
I was diagnosed with a pineal cyst and hydrochpelus nearly 7 years ago and had terrible trouble until last April 08 when I had it removed completley. I had to have brain surgery 4 times to lead any sort of a normal life. I had severe head aches for months before they found it and when they did they said the pressure from the fluid was so bad i was lucky to be alive. I had a shunt inserted to deal with the fluid and they said they would leave the cyst and monitor it. I was ok for about 2 years and the headaches came back i then had the cyst aspirated because it had grown and the symptoms went away for about a year. My Dr said he couldnt be sure if it would get bigger again but it did. They aspirated it again and I was ok for about a year and a half when the symptoms came back again. I had an mri and was basically told that it had grown so big that I had about 6 months to live, unless i had a crainiotomy to have it removed altogether, even though the risks were huge I had no choice on the 17 of April 08 i had the op and it was a complete succsess and i havent looked back since. My case was very rare as it wasnt a cancerous tumour but still would not stop growing, my advice would be to consult a few doctors and get as many opinions as possible to find out where you stand. The thing is I never had dizziness or fatigue or anything like that, just really tired and headaches all the time, everyone varies so its hard to tell, just dont let them tell you your imagining things because i was told that for a long time
My daughter, 13, has been having severe hedaches, sleep issues, extreme fatigue, and severe pain behind her eyes. She had an MRI and we were told she has a 1.4 cm pineal gland cyst. 6 month visit, nothing to do but wait. Scared to death, any suggestions??
I also have a 16mm pineal cyst. Yes, I have the headaches (aaauuuggghhhh!) but the symptoms that are the most bothersome are the severe vision changes (some days my eyes just will not focus and I can't even read the largest print. I went to the eye doctor and he prescribed glasses. When I went to pick them up 4 days later I couldn't see a thing with them so he dilated my eyes and did another exam resulting in a completely different prescription. This continued 4 more times before he also told me that it must indeed had something to do with my brain putting pressure on the optic nerves. Some days even dark black colors look like tiny light grey dots.), EXTREME insomnia that results in me being constantly fatigued all of the time, dizziness several times daily (I've never done drugs but trying to watch television when it suddenly occurs is what I'd imagine psychodelic drugs to feel like!), sudden nausea frequently, numbness on the left side (especially the top of the hand that goes around wrist, thumb and first two fingers and the foot going up my calf to the back of my knee; it feels like novacaine is the best way to describe it and tingles like when an extremity is waking up. This never goes away and I have had it for over three years now) Also, I get so dizzy at times when I suddenly move or turn I quickly get queasy and then "faint". (I do see a cardiologist for the fainting part as I also have a minor electrical problem with my heart but he thinks part of it may be due to the cyst as well since they monitored me closely and some were not due to the quick blood pressure changes and heart rate changes.) The one thing that is hard to talk about is that I have had zero sex drive for the past sevearl years around the time this all suddenly stared. I just recently started researching the symptoms of pineal cysts for the first time and many sites say this is common. I don't know if it too is related but all of this has put a strain on my marriage of 16 years. (Has anyone else experienced this? I do understand this is extremely personal, but I am so confused. Plus, it also started when everything else started causing me to believe ti may be.) About six months ago I even went in to have fusion surgery on my c-spine to "rule out" it was my mild degenerative disc disease causing the tingling, numbness, extreme left side weakness and headaches. It has only gotten WORSE since then! My doctor sent me to a neurologist for all of these symptoms but he DIDN"T think it was the cyst but said I had stiff man syndrome. My other doctors disagree. In fact, they doubt I do have stiff man syndrome at all! It is so frustrating! I am 36 and feel as though I am losing my mind at times! I even gave up my career that I loved so dearly because the problems became too difficult to "push myself through" daily. I do wish there was someone that could help me, but I just refuse to even talk to my doctor regarding this any further as it just has gone nowhere in the past. I have true symptoms that are so bothersome and it has completely changed me into someone that is not me! Are there others that are frustrated with the "runaround" from the medical specialists?
I am so glad to have found this website. I was becoming so paranoid that I was the only one in the world with these strange symptoms. I have the dizzy spells,headaches daily (even headaches while sleeping), lightheadedness, strange "hang-over" feeling, color changes in my vision, fatigue, etc... I began having problems 7 years ago and had a couple MRI's each showing a pineal gland cyst, and optic neuritis. Back then the cyst was said to be 3-4 mm. I have suffered over the years but recently had a terrible dizzy spell lasting 2 days. I work for a neurlogist and I decided to see him as a patient. He ordered another MRI ro R/O MS. It showed the pineal cyst now measuring approximatly a cm. So,obviously its growing, Everything else looked normal.
I think my husband feels like I'm a hyperchondriac. But most days I do mot feel good. It's definitly affecting all aspects of my life. I'm tired of never feeling really good.
If anyone has any NEW information,please share. I take Treximet as needed, Ibuprofin constantly, and my Dr. just prescribed me Diamox?? (I haven't taken it yet because one of the side effects is DIZZINESS!) I have also been taking Melatonin (20mg) which does seem to help me with my sleep.
If anyone has any remedies that seem to help,please share. :)
There aren't any remedies that I know of...but I wanted to comment that I also have headaches while sleeping and I'm happy to hear that I'm not the only one. More often than not, I wake up in the morning clutching my head; it's rather odd. I usually having dull headaches in the morning, too, in addition to many of the symptoms you've mentioned. I just wish there was an easier way--aside from brain surgery--to fix this problem!
I had the surgery five weeks ago - no more cyst. no more symptoms. Go figure.
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
Thanks for the story. I have had sudden onset of symptoms starting in June of 2010 and after complaining of headaches, and blurred vision I went to the eye doctor, who referred me to a retinal specialist, who set up my MRI (Feb 2011). After getting the phone call from the retinal specialist and scaring me to death, I was then referred to a Neurosurgeon. The Neurosurgeon told me it was no big deal, although my cyst measures 18mm x 12mm. I have since sought a second opinion from a neurologist whose opinion is that this is more than "no big deal" and is referring me to another neurosurgeon. What scares me the most is why I suddenly started having problems. I have not had a second MRI yet, but with its size on my 1st MRI, if there is any growth, I will most likely have to have surgery. My second MRI is scheduled for May 2011.
lol - just diagnosed with a pineal cyst. I've had migraines my entire life and in recent years have been getting nausea and numb arms as well as jaw, neck tension and shoulder tension. There is a constant dull ache behind my eye and now at least I know the cause. My story fits so well with every one else here that we all can't be wrong .........I'm still to find out what the next step in the process is but figure it will involve a neuroligist. oh well could be worse.
I was just wondering: Those you have met, who have had their cyst removed, how was the operation performed? I have a pineal cyst, and was just in to see a neurosurgeon about removing it, and I was shocked to hear that he want to perform a major surgery, going in from the back of the brain. Have you heard of other methods to perform this kind of surgery?