Pineal Gland cyst

[sistam]

Does anyone know how often pineal gland cysts should be rechecked to check for growth?  Also what size do they have to be before causing symptoms?  What does septation mean in a pineal gland cyst and is it normal? I hope someone can answer my questions. I have not been givin the chance to ask a doctor yet. Please any info would be great!

[PaulMD]

Hi there.

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 ).

Regards.

[sistam]

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!  

[linz470]

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

[sistam]

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!!  

[linz470]

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

[sistam]

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?  

[linz470]

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.

[Jules77733]

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!!!

[9488kimberly]

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.

[Jules77733]

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!

[9488kimberly]

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.

[9488kimberly]

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.
kim

[Jules77733]

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.

[leesy1972]

I have a Pineal Gland cyst and suffer terrible with the symptoms.  I need to know more about this.

[mfsv1006]

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?

[sandy334]

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

[barbara724]

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??
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