need answers

[barbie14]

i have a pineal cyst  or a  pineal cytoma  they are not sure anyway it grew from 5 mm to 8 mm in a short time should i be worried?i have really bad migrane headaches that no meds seem to help,blurred vision,pain all over which i also have fibromyalgia which they try to blame evrything on.cant concentrate,forget things and i guess sometimes i slur when i talk can you please give me an answer or tell me someone who can.should i be worried.????i also have alot more medical problems including ptsd.

[diananichol]

I don't haveNF1 but my daughter has it and her daughter has it. I do have fibromyalgia and get terrible migraines. My g-daughter fell and hit her head on the 27, her birthday. Sun. morn she woke up with blood in her ear so her mom took her to ER. the ER DR said she had  an inner ear infection, did ct scan gave her Amoxicillian and said everything was ok. Mon we got a call frome her peds Dr saying there was something that showed up on ct scan. She had a ruptured ear drum and the meds he gave her were even the right dosage to heal her eardrum! and what showed up on ct was an enlarged pineal gland. So we've had her to Akron Childrens and has had an MRI, waiting for results.My heart goes out to all with any type of illness. We have to keep an eye on these Dr's who show up for $ and don't care about their patients. Moms and grammas we hve to be proactive if we want OUR CHILDREN to get the best care they can. I'm mad as hell and you should be too!  GOD BLESS

[ycompanys]

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 and dizziness, and in some cases insomnia, nausea and cognitive deficits, particularly if cognitive deficits are involved.  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) 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 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.

[Crystal91479]

I have a benign pineal cyst that measures 1CM with no mass effect.  However, I have been experiencing alot of headaches or *pressure in my forehead*. My neurologist seems to think this cyst is just fine there.......should I be trying to see an eye doctor for their opinion?

[rayoflight79]

hi barbie, well i to have fibromyalgia and a pineal cyst that measures 16mm i am awaiting an appointment with a neuroligist to see if my cyst has grown, i know what you mean saying everything is blamed on the fibro i have the same problem, i to get really bad headaches, blurred vision and get really dizzy im always falling over . well i hope you get some answers soon its so frustrating waiting around and worrying ourselves mad ,good luck.

[Dr Rajgopal]

Hi,
A pineal cyst is a fluid-filled mass that can occur in the pineal gland. True pineal gland cysts are not brain tumors; rather, they are a completely benign cyst. Although a true pineal cyst is benign and usually harmless, because they can mimic a tumor, they often need to be distinguished from other cystic tumors which can occur in the region of the pineal gland. In those patients who have larger cysts, they can cause symptoms. Symptoms can include a condition known as hydrocephalus which is caused by the cyst compressing the cerebral aqueduct, a fluid-filled passage within the brain that is near the area of the pineal gland. By compressing the aqueduct, the normal flow of cerebrospinal fluid is blocked and pressure builds up which can lead to symptoms such as headache, nausea and vomiting, visual problems and even lethargy and coma if severe.A large cyst can also put pressure on the brain stem adjacent to it, which can lead to visual symptoms .Please consult a neurologist and get an MRI done to distinguish the cyst from tumour since a cyst doesn’t enlarge so soon. Please discuss the possibility of surgery since the complications are going to increase because of compression of brain components . Hope this helps you .Take care and regards !