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?
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.
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?
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?
Hi. I am a 28 year old female and I have a pineal cyst that is 9 mm and was found on a MRI due to headaches and migraines. But my Dr wrote me a letter stating that my MRI was normal. I was online going through my results and found I had a cyst a year in a half AFTER I had my MRI done. And he made ecumenical why the doctor that ordered the test lied and said my test was normal. But I have hesdsches, migraines, blurred vision and double vision. I go to my eye dr alot because my vision changes several times a year and she said my double vision doesn't have nothing to do with my eyes. My doctor won't even give me a referral. I don't know what to do! :/
Demand a second opinion and change your gp! My granddaughter age 16 has a pineal cyst, she also has special needs, autism, global delay and seizures.
After 18 months of seizures she had tests in our local hospital, which picked up a problem with her brain activity, she then went for an Mri scan 100 miles from home and had to wait several months for this, due to excessive waiting list. After waiting 6 weeks for any information on the results, I took it upon myself to contact her Peadiatrician at the hospital, only to be told by his secretary that he was out of the country for a month but had arranged for a further contrast mri scan, as the first scan had shown a further problem.
I was never informed of this and insisted on speaking to another doctor, I was so shocked and upset that we had been kept in the dark about something so seriouse! Approx 1 hour later I received a call by another doctor who told me that my granddaughter had a pineal cyst in the core of her brain, shocked and frightened for her, I asked many questions which he could not answer? Only to say it was not pressing on any other part of her brain?
This was now tying in with her symptoms of debilitating headaches, pins and needles in her arms and legs and vision problems, all of which I minimised as part of her sn condition and lady probs. I am now feeling so guilty and very angry with doctors who feel it's ok to leave my granddaughter with this condition without a consultation or even information on how to treat her symptoms.
I have contacted the hospital who carried out the scan, to find out how long the wait is for her second scan and to see if I could talk to a consultant only to be told it's 3-6 months as she needs anathstetic and a consultant would not discuss it with me as she is not his patient, the hospital was just facilitating the scan!!! Her Peadiatrician is not back until the end of August!!!
I take my granddaughters health and my care for her very seriously as she is unable to communicate affectively or take care of herself due to the severity of her needs. It fills me with concern that I hear you and others are also experiencing dismissive attitudes from medical proffessionals. I can and will fight my granddaughters corner and kindly assert myself ! Which you should also do, this medical problem could be more seriouse, all you want is information about your own brain for goodness sake, just to give you peace of mind or appropriate treatment if necessary. Don't accept a GP who does not care. PLEASE CONSIDER CHANGEING YOUR GP AND ASK FOR A SECOND OPINION.
I don't wish to scare you only to encourage you to get the answers and treatment that you so deserve. My granddaughter is a beautiful young lady extremely happy and has a great sense of humour and we will continue to prompt these medical professionals where needed, with respect and determination. I wish you well and hope you get the results you are hoping for.
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