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Are multiple pineal cysts of different sizes more scary than a single pineal cyst?

We were just told that my kid has 3 multiple cysts (2 small ones and 1 larger) after an MRI was prescribed following a trigeminal neuralgia diagnosis. I don't know the exact size as we were just told over the phone before the clinic closed Friday night. We were also told to make an appointment with oncology and that we need another MRI at 6 months and at 12 months to monitor growth, and also that the finding was incidental (which I assume means that it is not related to the trigenminal neuralgia). I have 2 questions:
1. Are implications different for multiple pineal cysts than they are for the presence of a single pineal cyst? Online I could only find information about presence of 1 pineal cysts.
2. My kid had a ct scan after falling of a horse 8 months ago. No pineal cyst was mentioned at the time. Is it possible that the CT scan had not detected the pineal cysts or should I worry that the pineal cyst is new?
Thank you so much for your help!
1 Responses
8754215 tn?1399834273
So this is a tricky question.

The thing about Pineal cysts are that there is a very divided community of Drs on them. Some believe they cause symptoms others say they dont. Some believe that they can even lead to strokes.
They say they are an incidental finding. What is odd about them is that some people have large ones and have no symptoms, others have small ones and have lots of symptoms.
Problem here is this, sometimes MRIs will say they are Pineal Cysts when they are actually Pineal Tumors.

Until you see a NeuroSurgeon and he looks at them and tells you his take dont buy into the old (Pineal Cysts dont cause symptoms, Pineal Cysts are an incidental finding and nothing to worry about.) That is to keep anyone with one calm in my humble opinion.
FACTS are Neurosurgeons around the worlds sometimes do brain surgery to remove them due to the symptoms caused by them and the patient gets better and symptoms go away, other times they do surgery and they dont go away.
Do not trust any old Drs word on this. The Brain is a very fickel thing and as someone who has one I will tell you they can cause symptoms especially when they grow. You can do your own research on the matter.

What my brain surgeon told me is that its impossible to tell if its a Cyst... which they will always say Cyst first... Or a tumor. They will only be able to tell by watching it to see what happens.
They will feed you some line of bull saying youll get an MRI every 6 months then every twelve and they will eventually start pushing you to get one every 2 years then probably not at all citing the costs.
If they are growing they arent Cysts... No Im not a Dr but I did see one of these World Renowned Brain Surgeons and that is how we knew it was a Tumor. You can tell what it is by what it does.

If they are growing after 6 months and then a year you should probably seek out a really good brain Surgeon to help you determine what is really happening. Drs as I said are divided on it and some will string you along.
3 cysts is alot most have one. So I would be very curious as to how it become 3. Im not a DR Im just a patient that has dealt with one that is a tumor even though they claimed it was a cyst. Usually in the ERs theyll put Cyst.
If you develop any symptoms youll be met with awkward stares because they dont believe it can cause them and theyll say its anxiety. If one is a larger Cyst I would suspect they will likely suffer from headaches and Migraines.

Now for the problematic news. In some cases the cysts can become rather large and cause what is known as Hydrocephalus Increased Intracranial pressure that will cause Cerebral Spinal Fluid to leak out the nose or the ears back of throat.
In this situation Surgery to have a shunt put in would be likely. If you wish to have it removed by a surgeon you should know this. The reason Drs and Surgeons dont remove them or like to remove them if they do it
Is because it is like puting a pee through a straw. It is a very tedious surgery and the go to far in one direction you can go blind they go too far in the other you can become paralyzed and worse case scenario hemorrhage and die.
That is a bit shocking news and I dont mean to worry you but Im telling you what my surgeons told me.  If they are indeed cysts and they stop growing and dont continue to grow they call it Stable. And start recommending every 2 years MRIs.

However... I have a Dr who didnt want to buy it was a tumor and keeps trying to say it was stable when it wasnt and its continued growing so they are trying to claim its a difference in the place I have the MRI and or the person doing the reports
blah blah blah they are allowed a tolerance ect....  For something in your brain allowed a tolerance... Knowing you're paying 1300$ for the most up to date machine to give the most accurate results... Bull.

So take it seriously. Dont panic over it but seek a real Neurosurgeon insist your MRIs on her all be done at the same place once you find a place that has a good machine stick with it. So they cant make excuses.
There is  a very high chance they are just cysts and will never grow or cause symptoms and that she will be fine but until you see a Professional on the matter who interprets the results dont let them downplay it.
Im not sure how old your child is but finding out something like this is there can cause all sorts of symptoms on its own from anxiety of it since you dont know whats wrong.

If its a type of Tumor there are several types it could be and as time will tell what happens with these will give more hint as to what kind. You should know that while some can be dangerous others are not serious.
You need to take into account health history and number of things before you opt to have any surgery knowing the dangers of this surgery. They used to have only craniotomy removal of the top of the skull as the only option but
new breakthrough procedures have allowed a much easier surgery called the KeyHole Procedure.

Best of luck to you and your child I gave you as much info as I could about it and told you like it is  up front not sugar coating it like some will with this Benign/Incidental/Rarely causes symptoms stuff youll hear.

2 Comments
Forgot... Call and have a disk of her images made that include the MRI report. Take it to a Neurosurgeon for review.
Your Neurosurgeon will probably tell you the only way to know if its a Cyst or a tumor without the wait and watch approach is to have a Biopsy... Which if they do that they may as well remove the tumor and Ive been told often they do end it doing it if its determined it is.
Do not put your child at risk for a biopsy see the right Dr and determine if surgery is even an option because as I said Hydrocephalus is often the problem and it can be remedied with a shunt. There may be no need at all for surgery even if it is a tumor.
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