My 23 Yr Old son has been having severe headaches for approx 2.5 Yrs. He had a Brain CT Scan done approx 2 yrs ago and it showed a 9.5 mm Pineal cyst. He has seen 2 different neurologists and 1 neurosurgeon. They all say that this cyst is nothing to worry about and is not causing his problems. He has not had another CT or MRI for this since the first Scan. He cannot sleep, has constant headaches. He describes these headaches as it feels like a pick jabbing him inside his head. He says he feels like his eyeballs are going to pop out of his head. He has dark cirles around his eyes. He is quite depressed because this has changed him from being a happy, pleasant go getting young man to a very somber depressed, angry and hopeless person. He is in constant pain. When he sees these doctors they dismiss the cyst and make him feel like these are just migraines. His father and myself basically had to beg the doctor to give him percocet for pain. I am so angry at these doctors. I could literally throw up because of the way he has been treated. From what I have been reading about these cysts and from what people have posted about their symptoms I just cannot believe that his doctors have dismissed his condition and basically change the subject when we try to question them. Not only that but it really angers me that he has not had another CT or MRI to see if it is growing in size. Another thing is that approx 2 wks ago he blacked out and he was out for about 45 Minutes. His next appt date hasn't been given, but probally won't be until the end of September. I am going to push for a out of town referral to see another Neurologist. Could anyone please give us some guidance on how to help our son. I have been praying all the time and hoping for some kind of miracle. He deserves to be treated with respect and deserves to be helped. He is a kind very loving young man and I will do whatever it takes to help him. If it takes yelling from the top of a mountain I will hopefully find someone to help him. So Please any guidance would be greatly appreciated. From a Mom who just loves her son.
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.
Hi,
Pineal gland masses, cysts and tumours do affect the balance of the body and cause vertigo , imbalance and vision problems . The lumps or enlarged lymph nodes in the neck and arm pits cannot be neglected . The enlarged lymph nodes are suggestive of infection and malignancy .Please go for a CT scan and MRI brain and consult a neurologist for the diagnosis whether the symptoms are due to Maniere’s disease or the Pineal gland . hope this helps you . Take care and regards !