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??

[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 (symptoms) 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

[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.