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uggh... I was diagnosed this week with an 11x9x10 mm pineal cyst, as well as a 5mm lesion on my left frontal lobe (have a feeling this could be the root of some of my issues as well--- suppose that may be a story for another post). While the neurologist was quite optimistic, he does want me to have a consult with a neurosurgeon to see if surgery is necessary. The neurologist did admit that a cyst of this size is quite rare (the look on his face was priceless when he told me that) and could be the cause of my symptoms, which include:

vertigo
facial numbness
coordination/balance issues
riDONKculous fatigue
right dilated pupil/droopy eyelid
muscle twitches
memory loss
speech issues (hard time finding words, some slurring)

Looking online, it amazed me how many people have stories in which their issues are not related to this. Really? How is that even possible? My theory is that (a) the pineal gland is responsible for much more than contemporary "medicine" can understand and (b) there is not a great deal of money for Big Pharma to make in treating this condition (since the one treatment is, well... surgery). I was speaking with my Mom last night about this and she asked if there was any treatment. Hell, if it was a tumor (and not trying to be glib about battling cancer... I promise), there could at least be some kind of action taken if it was. For now, I have a cyst that is larger than the gland residing within the gland. How the hell can that not be problematic?

I guess I am posting this because on one level I am concerned, but in a weird way relieved. I have been plagued with these issues quite severely over the past few years, but realize that many of these things have been a part of my life since puberty. I also have PCOS, and wonder if a malfunctioning pineal gland is to blame for that as well... I will often go for months without a period, then have one a couple of weeks later. Has anyone seen an endocrinologist to see if these conditions are related?

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Hi thujachinook,

I know your post is from a year ago, I was wandering if you have had any treatments and therefore improvements since, as like you I have a Pineal Gland Cyst and PCOS, I am only 19 and am affected with everyday living. The symptoms that you have included are the same as mine but I also have had weightloss (no change of diet or exercise), migraines that cause fainting, eye sensitivity and blurred vision. As like everyone writing about their cyst I'm frustrated with doctors and how they don't believe that this is a significant cause. I hope that this past year has been an easier time for you, and hope for the best! If you could get back to me on how you are going today.

Regards,
T
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Hello,

I am 17 and was recently in a car accident 1 month ago, and on my ct a pineal cyst was found.  I went to get an mri and confirmed a 1.4cm x1.9cm pineal cyst was found.  I was diagnosed with pcos as well and have been having problems such as:

EXTREME fatigue- sleep 14-18 hours a day (live on red bull)
cystic acne
excessive hair growth
rapid mood swings
weight fluctuations- as much as 100 pounds in a few months lost and gained no matter my habits
dizziness
memory loss
seizures
precocious puberty
massive headaches

I have been treated for "pcos"months prior to my accident with no success- in fact my symptoms are worse than ever.  I knew that this was much more simply "pcos".  I started doing some research because I just could not let this go- it effects my whole life.  I found a doctor online at the skull base institute in las angeles, ca.  I had a consultation with him and confirmed that Yes, in children with precocious puberty- like I had, this lesion can indeed affect hormone levels to cause my symptoms due to the pressure it has on surrounding structures, and the fatigue comes from the hormone melatonin which this lesion secretes.  I am a candidate for surgery and am extremely hopeful that at least some of my problems will be fixed.  Dr. Shahinian uses a revolutionary endoscopic approach which will have you in and out of the hospital in 2 days.. after brain surgery (amazing!!!).  

Please there is no more need to suffer- I totally understand the hardships associated with this rare disease. YOU ARE NOT ALONE AND THERE IS HELP!!!  

 ***this post is edited by moderator *** *** web addresses not allowed*** 

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Greetings T. I have not had any conventional treatments thus far. My chiropractor has me on an anti-inflammatory diet (there are great resources on line for this), since cystic conditions can sometimes be related to chronic inflammation. The amazing thing is that my menstrual cycle has become more regular! Who knows if the two are tied together, but I do know that now that I am eating more fresh, healthy, organic food that my body and mind seem to be cooperating more (though there are still some pretty rough days!)
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Hello gigi 4219! Thanks for sharing the info from your consultation. I have considered going through the Skull Base Institute. I wish you the best and would be delighted if you could share your experiences before, during, and after the surgery!
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Did you have the surgery? My daughter has had a pineal cyst that was diagnosed in 2007. This was after she starting having problems in 2006 at age 12. She has been suffering ever since with horrible fatigue (she never feels rested) mood issues, memory problems, she has been on the pill since that time to regulate her period because of horrible PMS. She also gets frequent headaches, and is dizzy frequently. Her cyst is almost exactly the same size as yours. I recently found that doctor you are talking about at the skull based institute and am also getting her cyst evaluated at the Duke Brain Cancer Institute. Please let me know if you had the surgery and how you are doing.
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I'm am 45- diagnosed 2 years ago with a pineal cyst 1 centimeter wide. I have left side facial numbness , slurred speech , droopy eyelid feels like it's sticking . Now I'm experiencing Vertigo and Nausea. Sometimes at work I feel like I'm going to pass out . My doctor too thinks it can't be the cyst . I'm going for another MRI next week. If it has grown I'm considering contacting the skull based institute in California- these symptoms are wearing me out ! I don't get headaches but this Nausea and vertigo is really taxing. I used to be I be scared of getting surgery but now I'm to the point where what else is there . My heart goes out to anyone with this condition.
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Hey there I'm 26 and I've been diagnosed with fibromyalgia, PCOS , Endometriosis , degenerative disc disease, rami syndrome, raynauds syndrome, hypothyroidism, trochanteric bursitis, peripheral neuropathy, nerve damage, psoriatic arthritis, arthritis in back and hands, scoliosis, loose ligaments over ribs and shoulders, restless leg syndrome, anxiety, depression, insomnia, ptsd and cyclothymia.
I just found out that I have a 15mmX 18mmX 9mm cyst or tumor in my pineal gland. I'm wondering if anyone has had surgery yet to remove theirs because I think this is causing a lot of problems!
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