pineal cyst

[tkjkmom]

I posted last week about my almost 3 yo who was going for brain MRI for gagging/vomiting after lying prone (several times a week)for several months.  Incidentally she has had no episodes in the past week...although occasionally says her stomach hurts.  The MRI found a 17 by 7 mm pineal lesion.  Dr. feels this should not cause vomiting...but that we should have an eye exam and should repeat MRI in 3 months.  What is your impression of the size of the cyst...at what size would it be a concern?  Do you think its related to gagging/vomiting?  What symptoms could it cause if it grew?  What would potential treatments/prognosis be if it grew? Is there anything else we can or should do/or be on the lookout for?  Chances of it resolving?  Thank you.

[Enoch Choi]

Thanks for coming back and posting, it's nice to find out what happens to people on this forum.

http://www.medhelp.org/forums/Cancer-Support/messages/46.html
is the link to your past post.

http://www.medhelp.org/forums/neuro/messages/33268.html
is a link to another forum person who had a pineal cyst.  The Cleveland Clinic Neurosurgeon "CS" said "most pineal cysts are found incidentally and are not related to the patient's symptoms"  and I agree with that.  Most are not the reason for the symptoms that the MRI was ordered for.

If your doctor didn't recommend any immediate treatment, that's a good sign that it's something that is not expected to worsen, and just needs monitoring with repeat radiographs / MRIs.  If one was worried about it, a second opinion is reassuring, but not always necessary in cases where there's little risk of harm.

Enoch Choi, MD

[nicole412]

THAT FUNNY I TOOK MY SON TO THE ER FOR A HEADACHE AND THROWIN UP FOR DAYS COULDNT HOLD ANYTHING DOWN NOT EVEN WATER AND GAGGED ALL NIGHT LONG WE FOUND OUT AT THE ER THRU A CT SCAN HE HAS A 1CM PINEAL CYST BUT I WAS TOLD THAT HAD NOTHING TO DO WITH WHY HE WAS SO ILL

[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, particularly if cognitive deficits are involved.  More rare is numbness and 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.