Pineal Gland Cysts
PIneal Gland Cysts -- Symptoms and Treatment
Despite popular medical literature that claims pineal gland cysts are "incidental" findings on MRIs and generally cause no problems, if you have one that is symptomatic, you have come to the right place.
Pineal gland disorders, in my limited experience, can and do cause symptoms and can wreak havoc on your life. Many people are told by doctors that it's all in their heads and there is nothing they can do.
You are not alone, and you are not going crazy.
In this trio of articles, you can read an overview about cysts here, my thoughts about the standard medical protocol, and a journal of my pineal gland cyst progress with an experimental, possible treatment plan.
The Squatter in My Brain
This is my brain. The whitish, almost circular blob in the very middle of the image is my pineal gland cyst. This is my squatter, as I tend to think of it. While I thought of giving my squatter a name, I don't want it having that much identity. I want it to go away.
What is a Pineal Gland Cyst?
A pineal gland cyst is a fluid-filled mass or body in the pineal gland. The pineal gland is a small endocrine gland approximately 5-8mm in size in the very center of the brain. It is not technically part of the brain because it sits outside the blood-brain barrier.
Literature states they show up in 21-41% of autopsies. To me that sounds like a large range, and I have not yet been able to find out how that figure has been determined. Historically they showed up in 1-4% of brain images, although one 2007 study found a frequency rate of 23%. Most of these cysts are small, ranging 2-3mm and are asymptomatic.
Large pineal gland cysts are defined by the National Organization of Rare Disorders (NORD) as "rare findings." Large pineal cysts, as defined by the NORD, are over 5mm in diameter. Most neurolgoists will never see one over 1 cm.
What Are the Symptoms of a Pineal Gland Cyst?
Symptoms are fairly wide and varied. A core list of established medical symptoms include:
nausea and vomiting
lack of muscle coordination
In addition to the above, there are also some core anecdotal symptoms derived from forums with people with pineal gland cysts:
face, neck, and skull pain
*There are other symptoms that have only been named by one or two people, so I have left them off this list. If you have other symptoms you believe attributable to your pineal gland cyst, please comment below so I can add them to this list.
Depression and anxiety, which may or may not be a direct result of the cyst, certainly can appear with an increase in symptoms or insufficient attention from doctors.
Good Brain Stuff
Treatment for Pineal Gland Cysts
Unfortunately, there really is no treatment. Many people suffering from symptoms are treated flippantly by their doctors, neurologists, and neurosurgeons. If you are reading this, you are probably one of those people.
Most neurologists will state that the cyst is not causing your symptoms and send you away with instructions to get a follow-up MRI in six months or a year. You will also likely receive a prescription for an anti-migraine medication that may or may not help.
There are only a handful of neurosurgeons worldwide who operate on a pineal gland cyst. One reason is that the pineal gland is deep in the center of the brain, and while it is outside the blood-brain barrier, it is not easy to reach. Secondly, these cysts are technically benign.
Here are surgeons I have read about who will operate on a pineal gland cyst:
Dr. Shahinian at the Skull Base Institute in Los Angeles
Dr. Mark Luciano at the Cleveland Clinic (do not know which branch)
Dr. Jeffrey Wisoff, NYU
Dr. Patrick Kelly, NYU
Dr. Charlie Teo, Prince of Wales Hospital, Sydney
Dr. Takanori Fukushima, Raleigh, North Carolina
There is a doctor at the University of Colorado Hospital who apparently will operate on pineal gland cysts.
There is also a doctor in Ohio, but I cannot find the name.
I can now happily add my neurolosurgeon here in Guadalajara, Mexico. I will ask his permission to publish his name.
Operations may be a full craniotomy, although more often they are endoscopic surgery or stereotactic radiosurgery. The last two are far preferable because they are minimally invasive and have a speedier recovery time.
Large cysts are rare enough that many neurologists will never see one in their career. Their rarity is one possible reason neurologists seem not to know what to do.
I encountered the same treatment from my neurologist that most others experience. You are welcome to read my opinion about the standard protocol for pineal gland cysts on this page.
Please consider donating $1 or $5 if this series is helpful to you because I am trying to raise the funds for my operation. I am happy to help anyone else who is suffering with arrangements and accommodations in Mexico for those who are interested in treatment options here. Thank you so much!
Where Does That Leave Someone Suffering?
It leaves them in the same position they were to start with, with additional frustrations and feelings of invisibility from the medical community's dismissal of the problem. With several hundred people writing about the same symptoms that coincide with the same rare medical condition, maybe we will eventually find a voice.
Luckily there is evidence that these cysts are beginning to be taken more seriously and research is starting to be done to learn more about them. The pineal gland is still a bit of a mystery as well. The pineal gland was thought to be useless for many years of medical teaching, and it will take a new wave to bring new knowledge to the forefront.
I found myself falling into more depression when my neurologist told me I was just anxious and the cyst wasn't causing any problems. The helplessness prompted anger, which for me was helpful. I read as much as I could and had a chance meeting with a retired nurse who had some advice to give.
I have started a journal documenting the things I'm trying in an effort to feel better. You are welcomed and encouraged to share the journey with me here.