Cyst growing near Pineal Gland

[cctexan3]

My 18 yr old daughter has had a second MRI and the 'cyst' has grown from 8mm last year to 14mm this year.  I understand it is in a very difficult place to reach and we are waiting for inurance to send us to neurology appt which will be in 4 months. can you ease my mind about what this could be and how fast these things grow?? What does the affect in her life/brain? How often does the become cancerous?

[shephp01]

Hi 3hearts and cctexan3. 3hearts, I found your story very interesting and I wanted to see how you were doing these days. Has the status of your cyst changed? Have you had surgery? Have you been taking any medication to alleviate symptoms? I know it's been 4 years, so on the small chance this post finds you, I would very much appreciate a quick update, as my 29-yr-old wife is battling the symptoms much like yours.

cctexan3, how is your daughter? Does she have symptoms relating to a pineal cyst? Has her cyst increased in size?

Thanks!

[3hearts]

Thank you for your reply.

I will compile all the answers to your questions & reply again.
I can't remember the dimensions of the cyst on each MRI nor what was reported last.
I was due for another MRI past October but my family Dr. has yet to send me -due to the fact he does not believe cysts can cause any problems.
Why he has sent me for the follow-up MRI's, I  do not know if he doesn not believe there's a problem.  However, he did not send me in 2007.

I will look up on the websites you mentioned for verification of symptoms to give my doctor.  They only reason my doctor is referring me to the neurologist now is for my new symptom, facial spasms, & none of my other neurological symptoms.

I did have an EEG test & a sleep deprived EEG test done 4 yrs ago.
The technician who performed the test said I did have seizures during the EEG; however, the doctor did not believe the test result. The Tech could not see how the Dr. could have missed the seizures since they were very apparent.
I was then sent back for a sleep deprived EEG at which time the technitian asked me why I was there since I had obvious seizure activity during the EEG one month prior. He even relooked over my test himself to confirm this.

I told him the doctor did not believe so.  He looked at the results & said, according to him I had seizures but, there was nothing he could do to change the doctor's mind. He also informed me that a new hospital would be opening in our area in the next 5 yrs & suggested I start going there for better medical help. (I was quite surprised he gave me that advice but grateful).
During the sleep deprived EEG, I had another seizure- according the tech performing the test.
Still the doctor did not help.
Four months later I had to have abdominal surgery & the surgeon (at another hospital)requested he have the EEG & sleep deprived EGG test & results prior to surgery.  The hospital denied me of those results.  So I do not have anything at all.  Not the results nor the tests.  Just my word.

The MRI, the EEG & Sleep Deprived EEG test were all done since I had been in the ER for having seizures. However, the ER was busy, the hospital had no MRI machine & CT machine had patients waiting in-line, I was denied a CT at that time to confirm. I was sent home to wait an appt with my family doctor.  So I did not have the MRI until 2 months after the seizure which I continued to have symptoms until & after the MRI.  The cyst was found during the MRI, and the MRI was because I was having seizure/stroke symptoms.
I have a family history of stroke & anuerysm.

Prior to the ER seizure, I either had a stroke or a seizure -not sure which since I could not get a doctor to see me at the time it happened.  But the symptoms I described to my family doctor at the appt later said he thought it could have been either one. Later I had seizure but I went to the ER since my symptoms were so severe- which is what spurned the tests(MRI, EEG, SD EEG) in the 1st place.  But now my Dr. discounts me of having a stroke or seizure and I do not understand why.  No reasons are ever given, even when asked.

So this is how I came about to getting an MRI.  I remember the results stating pineal cysts then being told, don't worry abou it.  It can not be the cause of your symptoms.
Four years later, my symptoms are worse, more frequent & I have new ones.

I will get the answeres to the questions you requested & send you soon.
But I'm not sure if I have the results to all the MRI's .  I believe I have 2 out of 3.
And like I said, none was done in 2007 & none yet to date. So I'm missing a year & do not know if the cyst has grown since 2006.

Thank you so kindly for your help & interest.

3hearts

[JainMD]

Hi,
I feel sorry that you have to go through all this and yet it is difficult for medical professionals to identify the cause.
First thing is what has been reported in your MRI? If pineal gland cyst is reported, then what size it is being reported? How close it is to optic nerve on MRI?
When your cyst was first identified?
What was the size than and what is the size now?
You can search Wikipedia and Emedicine websites to know further details about pineal gland cyst.
Keep me informed if you have still have doubt and need some queries to be answered.
Bye.

[3hearts]

Dear JainMD:

I read your information on pineal cysts to cctexan3.
I have a pineal cyst (confirmed by MRI) & have been having multiple extreme symptoms throught my body; however, none of the doctors in my area seem to know anything about pineal cysts.  My symptoms have increasd & worsened over the past 4 yrs.

I recently saw an opthamalogist due to eye problems (pressure, blurred vision, pain, inability to move my right eye certain directions).  I'm pretty sure it's the from my cyst. But the opthamologist claims the pineal gland is no where near the optic nerve! She only knew about pituitary tumors but never heard anything about pineal so I was totally discounted.  Instead she diagnosed me with trochleitis which she had done nothing- no treatment.  So I suffer with a pulled, drooping, pressure full, limited movment eye with vision problems!  

I also experience pain, nausea, vomitting, migrianes, seizures, facial spasms, sleep problems - to name a few other symptoms.
The information you have given to cctexan3 is exactly the symptoms I suffer but I need medical documentation to take to my GP to show him that my cyst could be causing my symptoms.  I keep telling him this & yet he does not listen. He finally set me up an appt with a neurologist who has his office in the Mall!  Yes, the Mall.  I'm reluctant to go- wondering how good a doctor would be in a mall considering my symptoms.

Do you have any advice?  And where & what source did you get your info so that I can show my physician.
My health has declined rapidly & in need of any help from you would greatly be appreciated. I don't have much quality of life. I wish I could see a neurologist with knowledge & a treatment plan that would help me. My health is rapidly declining & I'm in need of any help that you could provide which would be greatly appreciated.

As for cctexan3, I pray for you & your daughter that you find the help you need & quickly.  Keep us informed.  

Thank You!
3hearts

[JainMD]

Hi,
In reply to your query about how large is a cyst large, I would like to say there is no exact measurements but the size which causes pressure symptoms in brain and also the one which grows exponentially.
How is he now?
You need to serially monitor the size of cyst on imaging study.
Keep me informed.
Bye.

[cctexan3]

Thank you for your reply.  How large is considered too large?  since it almost doubled in 12 months I am concerned yet trying to live in today.  Her neuro appt is not until 4/18  ( county health care stinks at times)

[JainMD]

Hi,
How is your son? Is he having any symptoms of raised intra-cranial pressure like vomiting, blurring of vision or headache?
The pineal gland is a small endocrine gland in the brain. It produces melatonin, a hormone that may weakly modulate wake/sleep patterns. It is located near the center of the brain, between the two hemispheres.
Cysts near Pineal Gland are benign cyst.
It is located in midline and close to the course of optic nerve. It does not cause symptoms unless and until it is large in size and cause pressure symptoms.
There could be Pressure symptoms like headache, vomiting, irritability, double vision or vision impairment (due to its closeness to optic nerve) among others.
If any of such symptoms develop, then it is a concern to see neurologist at earliest.
Serial monitoring of size of cyst is important by doing periodic MRI.
Any surgery is indicated only if there is increase in size and also there are symptoms due to raised pressure in brain like vomiting, irritability, seizures, headache, eye pain, double vision etc.
Size of the cyst here is too small to cause any pressure symptoms.
I think you should follow advice your neurologist and physician.
Hope this helps.
Bye.