Pineal cyst and various symptoms

Hello, I really would like to know which surgeon I could contact at NYU hospital to get more information,. Please contact me via email:

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. Thank you!

NYU is right by me and I would love to discuss this further with you. 

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A lot of pineal cyst have been discovered lately. What road is skull base instute on in LA?

I was diagnosed yesterday and I need help

I too have a pineal cyst which no one ever told me I had until I had a recent MRI and at the follow up the PA mentions the cyst , and says ir is about the same size as it was on the last MRI and that was it. In 5he mean time I have dizziness, tinnitus, blurry eyes, profuse sweating where my hair will become soaked wet as if I just came out of the shower. In fact the other day, someone made a statement to me that steam was coming off the top of my head. Something is not right, but I cannot get any doctor to help me. Any suggestions from people with similar problems would be appreciated. SBS

Hi everyone! If any of you are new to this diagnosis or have had it for a while you're not alone. Please don't let these doctors make you feel like you don't know what you're talking about. It is your body and you know more of what you're experiencing than they do. Remember they work for you!

It's been almost 17 years since they discovered the little old man in my head. (I say this bcuz my MRI pic looks like it) Back then my symptoms were HORRIBLE! I've seen more doctors than I can remember and tried so many different medications for different symptoms is ridiculous. I've had maybe 2-3 do toes that actually agreed the PGC was the cause of my headaches and the long list of other symptoms. I will say my symptoms did eventually come and go vs. constant. Some I haven't experienced again or in years. Stress did make them worse. and to this day my pcp still tries to relate certain symptoms to simple depression or anxiety. I will say that most doctors no matter what speciality they are in do not know much about these invaders or even the Pineal Gland itself. However, there are so many new neurosurgeons that remove them and believe us about our symptoms being due to the cysts. If you have Facebook there are many of us that are in several groups that focus on supporting each other and providing information. There are many that have had the surgery themselves or a family member has. There are also some of us on twitter sharing stories.

A few have commented here regarding Dr. S with The Skull Bas Institute in LA, Ca. their website has a lot of information. Also, Dr. Kim in Houston, Tx has a great video that have helped many understand and share with their doctors. 

There are more neurosurgeons now that believe us and want to help. Myself, I have not had surgery or even been able to commit to sending my records off to these amazing doctors. After living with it this long and my age I just seem to weigh the pros and cons. But I will admit that I would have signed up ASAP when they first found it due to the horrible symptoms and issues it caused me. As mother it hurts my heart to hear about children that have been and are Having issues due to these. Praying for you and your families. Don't give up and know you are not alone.

I hope some of this info helps... research is growing and more surgeons are listening.

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have you had any weight gain issues? Imay have to have my cyst removed due to possible hydrocephalus,an diabetic and have problems now with weight,lost 22lb then it just stopped.

How large and what was the recovery like?

My son has the exact conditions.please give me a update on your outcome or treatment

I have a pineal cyst, 1.5 cm x 1.2 cm. I was having many symptoms such as blurry vision, crackling sound in the base of head, thought I had osteoarthritis from an earlier whiplash injury, but MRI revealed pineal cyst. I changed many things in my life to help that no-one suggested, I figured it out on my own. First, get rid of fluoride in your life, it crystallizes in your pineal gland. We had fluoridated water in our town, which we don't anymore, and after a couple of years no more crackling sound. Second, I had to change the way I sleep. Never lay on your back, it puts pressure on the area and causes blurry vision and pain. I also use medicinal cannabis as a sleep aid, guarantees my at least 4-6 hours sleep a night. I live in Canada where we have no treatments available, like surgery, and where the Drs. do not take the issue seriously. All my hot flashes, poor sleep, adrenal problems are always attributed to menopause. But 15 years later, I do not believe this at all, I believe it all comes from my big fat cyst on my pineal gland. Good luck everyone, do not take pharma drugs, they only mask symptoms. Pain is way of your body telling you something is wrong, keep trying different things and seeking more help, do not give up.

I have a pineal cyst and my doctor also insists that none of my issues are related. I have similar symptoms to everyone that posted, issues sleeping, vertigo, nausea, blurry vision, and sometimes my eyes leak a watery substance but are dry, I have the dull pain behind my eyes, or nasty headache. The one thing that every person has in common aside from diagnosis is that the doctor won't acknowledge the cyst could be the problem.

Until more extensive research is done and hardcore indisputable facts come out regarding pineal cysts, these cysts will always be dismissed by doctors. That's what they do when they do not have any real answers and don't feel like looking into it any further. It's no coincidence that many people, even with very small pineal cysts, have similar symptoms with one another. Insomnia being one of the worst. Even after following the advice of "experts" concerning proper sleep hygiene (limit caffeine intake, stay off electronics, don't watch tv in bed, etc., etc., trying OTC sleep aid, prescribed sleep aids which had the opposite intended effect on me), I have insomnia almost every night. The past 2 years have gotten worse, as I've had times where I have gone up to 48 hours straight without sleeping. I just don't get or stay sleepy. My body can be exhausted, but my brain stays wide awake. Since 2006 & to this day, my MRI's have shown a small pineal cyst, which, on the last MRI showed that it got slightly bigger. But still, "nothing to be concerned about", I've was told. I'm not buying it. Time to do my OWN homework and research. The pineal gland secretes one hormone — melatonin, which helps control your circadian rhythm (sleep/wake cycle). My primary care doctor, who wasn't aware of my pineal gland cyst until I mentioned it to him when we were discussing my insomnia (my neurologist had ordered the MRI's and never shared the pineal cyst findings with my primary care doctor) he told me he's not surprised I have insomnia - he believes it could be due to the small pineal gland cyst. My neurologist said it "could" be, but has her doubts. Either way, there is nothing they can do about it even if that's the case - not enough research/studies have been done. So, I will just have to continue to suffer with my insomnia. It's not their problem anyway.

Yes I sure do

Hello, I know this is from a long time ago, but I was wondering how you were doing. I had a pineal cyst that was discovered in 2012 or so. I went to so many doctors and I was told that my symptoms were not related to my cyst. Well, those doctors were wrong. I found Dr. Dong Kim working at Memorial Hermann in Houston, TX. Look him up. I ended up getting surgery, and it was the best decision I ever made. Many doctors believe that they do not cause symptoms, etc. That is not their fault because they learned that in school, but new research disagrees with this. Not ALL cause issues, but some can.

I have an all most 2cm pineal cyst with csf blockage. Enlarged right ventricle and many symptoms. Eye pain, blurry vision, double vision, head pain all over, blacked out, extreme fatigue, nausea, memory issues, incontinence....getting worse. I need info on a surgeon that isn't afraid to operate. Thank you! ~Christi

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