What testing have you had? It is all well and find that imaging says something but you have to know what your melatonin levels are - and so you need to see a doc to make sure the lesion is not effecting you.
How is your sleep? That could cause a lot of disorientation.
In June, I was diagnosed with a pineal cyst/tumor. The neurologist is saying the MRI shows characteristics of a tumor and characteristics of a cyst. The neurosurgeon is saying it is simply a cyst. I too have been hearing things and seeing things and have wondered if it is related to this condition. Earlier last week, I heard a faint whisper by my ear saying my name. Also, I seem to experience these sudden, brief moments of fear and disorientation, and then they go away very quickly. Driving is the worst because, it's almost like things are coming out of no where. Another MRI is scheduled in 6 months and both doctors say they will be able to tell a lot more.
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.
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.