Pineal cyst and various symptoms

Guest over a year ago

I started having headaches in my twenties. It was always diagnosed as sinus infection or migraine. In 2004 did MRI. They found about a 1 cm pineal cyst. Said it wasn't anything. Still constant headaches and huge pressure in back of head and right eye. Blurred vision. I went to about 7 neurosurgeons saying the same thing. Until December 2016 was doing some research and found neurosurgeon Dr. Dong Kim MD. In Houston Texas at Hermann Memorial. Called and talk to one of his staff. Laquanda. I had to send all my MRI's and reports to them first before I could make an appointment. They called back and agreed to make an appointment in January. After evaluation, Dr. Kim agreed to do the surgery. On March 8, 2017 , I am 50 now, they removed my cyst and pineal gland ( they called it RT. craniotomy with resection. That evening after surgery I was already up and walking. The pressure in my head was completely gone. The headaches have changed, not as strong. But it has only been 3 months! I have continue to heal each day. Instead of surviving I can get my life back! I thank Dr. Dong Kim and his wonderful staff of doctors and nurses at Hermann Memorial . They are compassionate and caring. If you research him on his site, they explain how they take the pineal cyst out. Not to many Neurosurgeons give you a hug each time they greet you! I hope this helps you all. God bless.

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Guest over a year ago

Can you let me know what doctor at NYu? My son is experiencing many symptoms he's 10 he can not walk without vomiting.

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Guest over a year ago

I've been battling with the cyst also & have sjogrens. Interesting...

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Guest over a year ago

I suffered for years with all of the same symptoms that you speak of. I had surgery a year ago with Dr Kim in Houston, TX. Top notch! Give his office a call. I live in AZ but it was worth the trip!! And they will give you a lot of info over the phone too. Or you can video call him too.

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Guest over a year ago

Did you find out the dr at NYU?

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Guest over a year ago

I read about him... sounds like a wonderful doctor. I just diagnosed with a 5mm pineal cyst and am waiting for my neurology appointment next month. Thanks for your insight.

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Guest over a year ago

It is interesting to me that so many of us in the late 1900"s and early 2000"s have these pineal cysts, tumors and calcifications. I wonder does fluoridated water contribute? I wonder if the Glyphosate ( a Monsanto herbicide. Round Up) that was sprayed on the farm I grew up on contributed? I had a Pineal Glioma that was removed in 2003. I've been searching for some kind of answer since then. I still have seizures and now issues with my pancreas, thyroid and other endocrine issues due to the tumor and the craniotomies. I had one in "03 and a second in "04. Both times the surgeon went in at the back of my skull. I have a scar from the nape of my neck to the top of the cranium. Does anyone else relate to any of this?

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Guest over a year ago

Would love to hear more about your story if you can email me that would be great! Hope to hear from you!

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Guest over a year ago

Dr Dunn Brigham & Women's Hospital in Boston, MA

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Guest over a year ago

Hi thank you for sharing your experience. I now know I'm not alone. I also was diagnosed with a pineal cyst. It was seen on an Ct scan about 8 years ago. For years I have suffered with terrible headaches dizziness fatigue and balancing issues. The severity does change from day to day. I can go weeks without symptoms and then suddenly it hits me do bad I literally can't get out of bed. Driving is impossible, reading, is also an issue. I have seen a few different dr regarding my problem but the drs don't know much about the pineal cyst and are not concerned because they don't seem to be common enough. Also the dr don't seem to think that they can cause life threatening problems however I have episodes that leave me in terrible pain. Please share any information you think may help

Thanks
Angela
Florida

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Guest over a year ago

I have been seen by the chief of staff in NYU hospital ENT. He looked at my CT scan but offered me no help. He doesn't take this serious because it's not a cancerous tumor. However sometimes my condition leaves me in bed for days because the dizziness and ear pain is unbearable.

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Guest over a year ago

It's absolutely mind blowing how many are here singing similar songs and being told by doctors their pineal gland cysts are asymptomatic. Everything I've read has pointed to a vast lack of study on the matter and in the meantime patients are suffering. Thank you to the contributors who plan to spread the word about their surgeries. For those without answers, treatment plans/options, or a GP/neurologist/neurosurgeon willing to acknowledge your symptoms, do a quick search for "patients like me" and share your symptoms. Let's get word out there as best we can.

We don't have asymptomatic pineal gland cysts and our lives are affected!

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Guest over a year ago

I had surgery with him too. Best decision I made. I live in Maryland.

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Guest over a year ago

Just seen ent I have 6mm pineal cyst causing memory loss and sinus infection like symptoms head pain dizziness etc - had 5 courses of antibiotics and referral to ent to be told it’s neurological - physio for stiff neck said the same wouldn’t treat me - now waiting to see Neuro

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Guest over a year ago

I have the same What Dr did you see for that and do you think I should be disability ( (Occupation Electrician.....1.7 cm pineal cyst

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