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Pineal Cyst on the Brain
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Pineal Cyst on the Brain

I have a 16 year old that started compaining about 5 weeks ago with headaches, nausea, dizziness, blurred and double vision. I took her to our family Dr. and he did a MRI and found a pineal cyst 1.5 cm by 1cm. We went to a Neuro Surgeon Doctor and he  ran more tests and so far all tests are negative for any cancer cells. He also explained that the mass does look like a cyst. This is good news but we are not out of the woods yet. She is on new medicines that hopefully will take down swelling so her vision and headaches will improve. We will try this for a few weeks and watch her symptoms and then she will have another MRI. Her blurred and double vision is occuring more often in the last week her headaches never go away even with pain medicine. She feels very tired and when she up moving around or riding it makes things worst. We add her vision checked this week and the Dr. said it wasn"t her eyes so it probally is the cyst. Is this just part of a cyst and how large will it have to be to do surgrey?
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Avatar_n_tn
Hi bonnie, The eye related symptoms are more likely to be due to pineal cyst. The desicion to operate depends more on the severity of symptoms experienced than on the size of cyst.
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Avatar_m_tn
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.
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Avatar_f_tn
2 years ago my now 13 yo son was also diagnosed with a pineal cyst. The finding was incidental on study. We met with a neurosurgeon who also told me nothing to worry about. Now my son has many days of school due to headaches and malaise. On Saturday, he called me scared to death with occular migraine type symptoms (clear squirrelly visual floaters followed by a raging headache). He had a negative eye exam although he tells me his eyes are bothering him. Now, we are scheduled to follow up with the pediatrician on Friday. I am hoping for another study to confirm any changes in the size. Any thoughts/suggestions?
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Avatar_f_tn
My 16 year old daughter has a 5mm Pineal cyst and has suffered from headaches, lethargy, visual disturbance for over a year. Recently the headaches have increased in frequency and intensity. She has a headache constantly that that has her in tears 2-3 times everyday from its severity. her MRI also evidenced an acute ischaemic event. She is hypothyroid and ALS has asthma. Your information has been very helpful- thank you. My research has brought me to similar conclusions. What can be done to reduce risk of post operative infection and who are the experts in Australia in this type of surgery?
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