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Brain & Nervous System Disorders Message Board


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Re: Pineal cyst
Jun 9, 2003
My now 15 month old daughter was diagnosed with a pineal cyst by CT scan which was done for other reasons a few months ago. Pineal cysts are VERY common - up to 40 % of people have them on routine autopsies, and a substantial percentage of people have them found on CT or MRI studies done for other reasons. It is very RARE for them to be associated with any symptoms. No physician in their right mind would recommend having something done about a small cyst in the brain because you would have to have some form of BRAIN SURGERY to do this! There are always significant risks with any surgical procedure, especially with such important and sensitive areas. There are less than 100 people in the world who have had significant symptoms related to pineal gland cysts. If the physicians don't believe that the cyst is related to the headaches and other symptoms, they're probably right. Obviously having something in your brain can be terrifying - and I see brain tumors in children all the time - but if the appropriate studies are being done, and follow-up is happening with your physician, you will probably not have any further problems related to these cysts. If the cyst is truly the cause of the problems, there will almost always be other findings on the imaging studies.

[This message has been edited by dlhowell998 (edited 06-13-2003).]
Re: Pineal cyst
Jun 23, 2003
I was not trying to get anyone upset.

I am very sorry that your daughter had such severe symptoms. Most physicians today would agree that people with larger cysts (such as hers at 2.1 cm) that occur with symptoms (which can be vague or much more severe as hers) may benefit from surgery. Most of the newer surgical approaches are less invasive but their efficacy has not yet been proven.

Those who have had the operations have had symptoms. The majority of those who have had symptoms have had other findings on their MRIs, such as hydrocephalus or aqueductal stenosis. Hydrocephalus would definitely push someone towards operating sooner than later. The hydrocephalus can be intermittent - the pineal cyst can act as a ball valve, trapping fluid intermittently, or can stay fixed, leading to progressive hydrocephalus.

No surgery is without risk. I see children almost every day that have had surgery for brain tumors (not just cysts), and the effects can be devastating.

It is true that there are tumors that can be present in the pineal gland. Certain types of cystic tumors are more common in certain age ranges than others. Children are less commonly diagnosed with pineal cysts, but also tend to have some of the cystic tumors present. Usually there are characteristics seen on MRI which would make someone more suspicious that there is a true tumor present and not just a cyst, but this is not a perfect system. That is why follow-up MRI studies are recommended, to check for growth and change of the cyst. If the cyst grows, then the removal would be more necessary to prove that it is in fact a benign cyst.

I am personally very concerned about my own daughter, and have done quite a bit of reading in this area and spoken with several specialists. All agree that severe symptoms that are "typical" as your daughter's were or cysts that grow or change or look suspicious on MRI should be more closely examined and/or removed. However, for those that are found "incidentally" or without symptomatology that fits the lesion should merely be monitored.

It is very unusual for a 1 year old to have a pineal cyst diagnosed. My daughter will be closely monitored, and unfortunately risk having sedation fairly frequently for the MRIs to be done. If she does develop a pineoblastoma or pineocytoma or germ cell tumor, I will be devastated. A pineal cyst is the best I can hope for at this time.

She is in good company with the other 5-40% of the population that has a pineal cyst.





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