Pineal Cysts

[mistle30]

My 10 yo son was "hearing things" back in February, he was found to be consistently hypoglycemic. He went to a pediatric endocrinologist and was found to have a normal A1C level, but his insulin to glucose ratio was way out of whack. He was diagnosed as insulin resistant. (For reference he is 5"1" and 130 lbs.)

Over the next few months, it was noted that he had one pupil smaller than the other, has complained of headaches pretty much daily, nausea, dizziness, difficulty concentrating at school, and visual issues. The opthamologist says his eyes are fine. In the last month, he has had more "emotional disturbances" is terrified of the dark,unable to sleep and the headaches are increasing. He is "hearing" footsteps, etc and is just not my happy go lucky little kid.

We went to the pediatrician last week to get something for his sleep and anxiety. She noted all the above with him on exam. She recommended an MRI to rule out abnormalities. I got the MRI report yesterday which states everything is normal except an incidental finding of a 6mm cyst on the pineal gland. There was no dye uptake done in the study. From everything I am reading on the internet ( I am a Registered Nurse) he is very symptomatic of a pineal cyst. How can a cyst be differentiated from a tumor in that region without dye uptake? Also, he is showing signs of early puberty (man boobies, pubic hair, etc).

Anyone out there have any guidance to offer?

[rumpled]

Get him to a pediatric endocrinoligist - that area is also very near the pitutiary and some other stuff may be going on. One that knows issues that deal with pituitary.
He needs testing.
40% of pit tumors do not show up with MRIs anyway and if it was not a dynamic MRI, then it would not show up anyway.

[ycompanys]

There is one unusual case reported in the medical literature of an 8-yr-old girl experiencing hallucinations due to her pineal cyst.  After surgery, the hallucinations went away.

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.