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.
Thank you for your extensive explanation. I have since researched similar information. My son had a biopsy a couple of years ago, & was found to have a low grade astrocytoma. Combination cystic/tumour. 4cm.This was performed because they found that he needed a PFO closure done on his heart before they could continue with the partial removal of the cystic tumour. They were ready to operate, But the test negated it at that point. His symptoms have increased again, Now on pain management. So feel some changes are going on. His review coming up soon, Due to sleeping so much as well, he has also been diagnosed with osteoporosis...& has had an awful reaction to calcitriol. Weeping patches of itchy ....poor thing is at his wits end...As if the pain isn't enough...& the nausea, dizziness, lethargy....so it goes on!
Thank you so much for your thoughts, He has just received his review appointment on the 22nd August, So we'll see what they have to say. He has looked so healthy in the past, & being a cheerful soul, I guess they think he isn't too bad. He puts on a brave face. Doesn't like to come across as a complainer. But he has it tough at times. He isn't so cheerful these days. Again, thanks for your input. Regards Bernie
Hi there rumpled, Because of an increase in the size of his cystic tumour, my son was operated on, in October last year. Suboccipital craniotomy as you said. The op went very well. Not sure yet on the amount that was able to be extracted in the debulking. An MRI will reveal all in June this year. It is noted that he has had a 50% decrease in the intensity of his headaches, with the occasional bad day. His vision is no longer doubled, although he still has disturbed vision toward the end of the day. Lethargy is still an issue, but he manages to get up at 9 now instead of 12-2pm. Sodium levels are low (have been for a long time), so on fluid restrictions to balance them. He is being weaned off his old epilepsy meds (Tegretol) replaced with Keppra. (This may address the sodium problem I believe) The dose will eventually be reduced after weaning. He has just started experiencing, the last 2 evenings, around 8.30 ish, a numb tongue. I am guessing this could be the weaning & high dose of Keppra (1000mg x2). He will see the neurologist in a couple of months. What do you think? Thanks for your consideration of my query.
I am so glad your son finally got treated and feels better.
If you get a copy of the pathology and/or surgical report, that may tell you the amount that was removed before the MRI. I like to get my pathology reports in any case.
If he still has vision issues, he may still want to see a neuro-optho for evaluation. I have double vision issues and I had to see a specialist who gave me exercises to strengthen my eye muscles. Not to say this is the case for your son - but to say things can be done in some cases.
I have low sodium as well. I am on a medication to hold sodium (fludrocortisone) as well as increase my sodium intake. Is his sodium issue SIADH?
I hope the keppra works - not sure it will help with the sodium though.
Here is a medical paper:
"Hyponatremia associated with repeated use of levetiracetam.
Nasrallah K, Silver B.
Department of Neurology, Henry Ford Hospital, Detroit, Michigan 48202, USA. ***@****
Levetiracetam (LEV) is increasingly used as adjunctive anticonvulsant therapy because of apparent low toxicity. Somnolence, asthenia, headache, dizziness, and nervousness are the most frequently reported side effects (1). We describe a patient, predisposed to the development of the syndrome of inappropriate antidiuretic hormone secretion (SIADH), in whom hyponatremia developed after two challenges of LEV."
I would watch him closely, speak to the doc or pharmacist...
The numbness - is he new post op? I know I had some numbness post op but it gradually faded.
Thank you for you quick response. This symptom was new the last 2 days only. He will see his GP tomorrow. We are on a public holiday today, & we are flooded in right now anyway....lotsa rain! Anyway, he didn't receive a pathology report on the mass or size of the tumour removed, & MRI pics were indistinguishable, because of blood in the area, apparently. The discharge summary only gave a procedure report. But the tumour was astrocytoma grade 1. The next MRI will be clearer, due at the end of March. When he goes again to the Neurosurgeon, he will request the pathology report. Thanks for the exercise suggestions. He did do them regularly for a coupla months, but hasn't lately. I think it would be good for him to continue. Thank you again, regards Bernie 107
Oh wow... yeah fluids can block imaging so it makes it hard to see. So can CSF.
An astrocytoma is not a pineal cyst at all - that is a low grade (grade 1) brain tumor so it just happened to be located by the pineal gland.
This is from a brain tumor site:
"Astrocytomas are tumors that arise from astrocytes—star-shaped cells that make up the “glue-like” or supportive tissue of the brain.
These tumors are “graded” on a scale from I to IV based on how normal or abnormal the cells look. There are low-grade astrocytomas and high-grade astrocytomas. Low-grade astrocytomas are usually localized and grow slowly. High-grade astrocytomas grow at a rapid pace and require a different course of treatment. Most astrocytoma tumors in children are low grade. In adults, the majority are high grade."
You can get the report from the medical records section at the hospital as well. Take care.
Hi there...Been a while! Hope things are well with you. Just an update...Son still having issues with pain which is being managed by a neurologist. No further growth of his tumour, at this point. I investigated whether Botox would be effective for his secondary exotropia (from the tumour bleed 5-6 years ago. This event, I feel, is the biggest cause of his pain & headaches. He never had headaches before that "turn".) He has had one injection in the muscle of his eye, which is appearing to be working. Another may be needed to complete the treatment. Though temporary, the hope is to ease some of his discomfort. Sometimes the eye can "learn" to remain straight. The squint op he had a few years ago wasn't successful. The lethargy remains, & the sleep cycle is back to the way it was before the op. Regards...Bernie
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