I have been diagnosed with a pineal mass, not cyst, as it has irregular borders. I have goten no answers from the 3 neurologists I have seen so far. My symptoms began on april 2nd; and increased considerably. I had an MRI that showed the mass as being 1.3 cm by 1.8 cm. Also I have white areas of concern in the gray area of my brain. I need to know, considering the size of the pineal gland and the size of the mass...is this mass large,or concerning, in your opinion? I am unable drive, I stumble or walk into things, have dizziness..and sleepa great deal. I just want some advice.
I would consult a neuro-endocrinologist as well so they can look at your hormones - for that area is close to where the hormones are made. As well, they should be affiliated with neuro-surgeons who should not be so silly.
Size is a factor, but location is as well.
Usually you can find a neuro-endo at a university center. or at larger hospitals. Regular endos may not have enough experience in treating you. You need specialization.
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. In fact, a study that showed an almost perfect correlation between migraines and pineal cysts. More rare are emotional lability, fatigue, ringing of the ears, and numbness / tingling. In extreme cases, pineal cysts can result in loss of consciousness, suicide, or 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.
6) Women are much more likely to have pineal cysts and be symptomatic than men. One theory is that pregnancy may induce the growth of pineal cysts and/or make patients symptomatic.
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.
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