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Pineal Cyst - Cytoma
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Pineal Cyst - Cytoma

I am 37 year old male and have just had an MRI done at the VA. I was told that I have a Pineal Cyst of 14mm, and that it is the same size when compared to an MRI from 16 months ago, even though they never mentioned anything about it back then.

I now have both copies of the MRI, and noticed that the Cyst has grown between 3 and 4 MM in the last 16 months, and that the Cyst is closer to 15 MM in size now. In the VA report it states "Low grade Cytoma cannot be ruled out", but they do not seem to think that their is any problem with it.

Personally I am not sure what to think as I believe it is still growing in size, and that I have Really bad headaches, Insomnia, memory loss, Nausea, and some times I have sharp burst of pain from the middle of my head to the back of  my neck. I also have Very Low Testosterone and Vitamin D (Not on the scale), and High Prolactin Levels.

For a long time I believed that my headaches were caused by Sinus pressure from my allergy problems, but now I wonder if I should I be concerned about this Pineal Cyst?
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657231_tn?1390151580
Yes.
Please go find and see a neuro-endocrinologist. You need to get some hormonal testing done - as the lesion is close to the pituitary as well as the pineal cyst secretes melatonin, which is probably why you have issues sleeping. That  would account for the low D, testosterone and probably a few other things - in fact, just the fact that you are having nausea etc, means you need to check ACTH and cortisol ASAP because if you are having issues with those hormones, it can be life threatening.

You should also see a neuro-opthomologist.

One or both of those doctors should refer you to the appropriate surgeon who can take care of the lesion using the endoscopic technique - via a nostril. Find an advocate if they are not willing to get treatment soon.

Get copies of everything.

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1553000_tn?1294242613
they just found a pineal cyst or pineal cytoma on me it measures 1.2 cm my doctor has never seen anything like it but he is sure its affecting my sleep i am on aderol (adderall) to keep me up during the day and remron so i sleep at night as well as carbadopa for rls. But most of what i've read about the cyst or tumor doctors write it off and say it doesn't cause the symptoms i have which are headache nausea sleepyness at moodyness
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657231_tn?1390151580
Yes, they consider most of the lesions to be non-symptomatic so you will have a battle to show that you are symptomatic. If you have someone sleeping with you (or not able to...) that may be able to vouch for the issues, plus the scripts, and tests showing increased melatonin - you may be able to push the issue. Be persistent. It may take finding the right doctors.
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Avatar_f_tn
I find it interesting that I too have a Pineal Cyst and am having the same symptoms you are. The first neurologist was uncertain of what to do but wanted to take spinal fluid. I declined because it is a costly and painful procedure and I had a feeling the results were going to be inconclusive. Second neurologist laughed about it as If I was crazy because it was so small. I have not seen a third or even mention it to my new doctors. I don't have the money for Doctors to continue with theories instead of answers. I suppose I am frustrated and the same age as you. The worse part is the memory loss and recently the headaches are more and more. The latest and greatest diagnosis the Doctors want to give is that everything is stress related. That is a great assumption except that does not remove the cyst.
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Avatar_m_tn
Hi don't give up looking for treatment i have been doing the same having docs telling me every thing from it has nothing to do with your lesion it's stress related to I need anti depressants and none of them would listen to me untill I wound up in hospital and only the did I start to get the help from a few good endos at sir charls Gardner hospital here in Perth. I don't know how the health system works over there in the states but in Australia it was costing me $150 to $250 for each wasted appointment at the endos which made me run out of cash fast so I kept going to the ED at my local hospital untill they looked at me properly so maybe try that if money is a problem. My point is don't just stop looking for help it's your body you know how you are ment to feel if you don't feel rite don't stop looking for treatment untill you do feel good again and don't let them fill you head with it's stress , depression or any garbage like that
Good luck
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657231_tn?1390151580
Look up papers on symptomatic pineal cysts and contact those doctors to start and see if they know anyone in your area that can help you.

While yeah the size can be smaller than other lesions, the location is where a lot of nerves, hormones and stuff is going on so they are pretty silly. I would go to a pituitary center since it would likely be a pituitary surgeon that would do the surgery - the same instruments work.

There is also an expert forum here - you can contact him.
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Avatar_f_tn
I've got the diagnosis "probably pineocytoma". (?) And I've also got problems with, nausea, fatigue, dizziness and as 'Asdaddy' wrote "sharp burst of pain from the middle of my head to the back of  my neck".
My doctors in Sweden also say it has nothing to do with the tumor.
And I've read forums from Germany about people with pineal tumors that have these symtoms (symptoms) as well.
Maybe it's time we go together, so we can be taken seriuosly. Or at least have some scientists research this.
As documented, it's a rare place to get a tumor, so therefor it would be interesting to know how they can rule these symtoms (symptoms) out. On what basis?

I hope you all get well!
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657231_tn?1390151580
I would go see an endocrinologist. The lesion is pretty close to the pituitary and as well the pineal gland secretes melatonin which the doctor can test - just make sure you get a neuro-endo so you get a good exam and adequate set of tests. Get a copy and check out what the results are yourself.

Pineal cysts/tumors seem to be lumped in as having no symptoms but when they have symptoms, they need to be treated. You have to find the right doctor and as it is rare, it may take a bit to find the proper doctor that knows his/her stuff.

Keep us posted.
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