Re: Pineal Gland Cyst

I replied to this post already some time ago, but I am updating my response to a more appropriate one based on my own experience and extensive research. This message includes information on the treatment option of neurosurgery with 90% success rate of symptom resolution. Provider information is listed, along with an article, a short video, and a medical university study. Therefore, the original poster’s question “Is there anyone familiar with these types of brain cysts that can help?” is literally going to be answered. I hope this man found the help he needed, but if he has not yet, I definitely hope he finds this post helpful and is able to obtain the help he needs from this neurosurgeon.

Let me begin by explaining that I have had a symptomatic pineal gland cyst since 2013. I’m not going to explain everything that I have done alternatively nor all of the therapies I have to do because of my symptoms. I have tried many different alternative approaches, as well as more recently non-conventional medical approaches. Not only do I still have the pineal gland cyst, but I also continue having symptoms. My cyst has been four different sizes (knowingly) since I’ve been diagnosed.

Although I had done research for years regarding pineal gland cysts, I ultimately never found any definitive answers regarding treatment options. Pineal gland cysts are fluid filled sacs on the pineal gland. They are common with about 40% of the population said to have them. Typically these cysts are dismissed because it is on a gland in which its purpose and function is not clearly understood by modern medicine. In general, cysts commonly form on various areas within the body, usually not disrupting function. Therefore, diagnoses of pineal gland cysts are easily dismissed.

Pineal gland cysts are noted by radiology and diagnosed simply for their presence, but their findings are determined to be completely incidental. It is believed that symptomatic cysts are rare and when they do cause symptoms that they are large. However, there is no conclusive evidence or studies that prove this. Because these cysts are dismissed and symptoms are told to patients that it must be something else, symptomatic cysts may not be as rare as medical experts claim. Doctors are quick to state that it is something else, but do they ever seem to find out what that something else is?

While it is unknown the actual number of people affected by these cysts because of its dismissal, it appears the debilitating affects are more common than is credited. A simple internet search will reveal many search attempts made by people such as the following:
-pineal gland cyst treatment
-pineal gland cyst natural treatment
-symptoms of pineal gland cysts
-pineal gland cysts and headaches
-pineal gland cysts and visual disturbances
-pineal gland cysts and dizziness
-pineal gland cyst and brain fog
-pineal gland cysts and seizures
The list is only a sample, and for me personally I’ve searched nearly all of these commonly searched phrases and more.

It is important to note that some people have no symptoms with a cyst on their pineal gland regardless of its size. Size does not determine symptoms and it also does not determine the specific symptoms. People have common, but varying number of symptoms associated with these cysts.

Because neurological symptoms tend to be similar and overlap across diseases, some people may have pineal gland cysts, but no symptoms from the cyst itself. Essentially they have other neurological conditions caused by such ailments like Chronic Neurologic Lyme Disease, Long COVID, brain injury, and parasites to name a few. There is also the possibility of having both symptoms from a pineal gland cyst and one of the issues mentioned above. It is also possible to have the diseases above but it’s not causing neurologic symptoms in itself, rather the cyst is solely causing the neurological issues.

The cause of the development of pineal gland cysts are unknown as different opinions theorize that it may be caused by hormone imbalance, parasites, fluoride, heavy metal toxins, and even Lyme Disease as tick borne illness can develop cystic formations. Ultimately, the cause remains unknown. Symptoms include, but are not limited to the following:
-visual disturbances
-sleep disturbances
-seizures
-headaches
-head pressure
-behavioral and personality changes
-mental illness
-dizziness
-lightheadedness
-numbness in extremities
-gait abnormalities
-balance and coordination dysfunction
A person with a symptomatic pineal gland cyst may have all or only some of the symptoms listed above.

If nothing else can determine the cause of the symptoms in an otherwise healthy individual, a good doctor would recognize the very fact that a growth in the brain would be a reasonable conclusion to be the cause of neurological symptoms. Beside symptoms being present, one fatal risk of having a pineal gland cyst is that if it ruptures it will cause death.

According to Dr. Sunil Patel, Chair of Neurosurgery at the Medical University of South Carolina, pineal gland cysts and pineocytomas are near impossible to distinguish between on an MRI. Typically, they are always diagnosed as cysts because they both look like cysts on an MRI. It is possible for a cyst to cause symptoms, but Patel has learned that a higher incidence of symptomatic cysts are actually not cysts but pineocytomas. Pineocytomas are are non-cancerous pineal gland tumors. This would be determined after removal and pathology examines the growth.

Patel has removed over 40 of these growths so he has learned a subtle way of identifying a pineal gland cyst from a pineocytoma on an MRI. Regardless of which it is, Patel will remove either a cyst or cytoma if it is causing symptoms. Very few neurosurgeons remove pineal gland cysts and according to Dr. Patel, only 5-10 neurosurgeons in the whole world are experienced at the delicate removal of them. After removal, 90% of patients have complete symptom resolution when the symptoms are caused by the cyst. 10% have other neurological issues and therefore symptoms remain present.

Listed below is an article from 2018 on pineal gland cysts; a video from Dr. Sunil Patel; the research findings on pineal gland cysts/pineocytomas and their removal which was published in 2021; and lastly provider information. I hope this information helps anyone needing this and getting the help he or she needs.

For myself, I am seeing Dr. Patel for a neurosurgery consult at the end of this year. I am not in the state of SC but my primary care doctor was given the information below and supports this. He had to advocate for me and prove I haven’t gotten any help in my home state and sent a convincing and advocating referral to be able to see Dr. Patel through the referral process. Of course, one is able to see Dr. Patel without a referral if that is the only option.

Although the goal is to support and find ways for the body to heal on its own through natural means, I am one example of someone who has tried almost everything out there naturally and my pineal gland cyst is still present, along with symptoms. Is it possible that the location makes it difficult for the cyst to resolve on its own? I do not know. However, I can say that in this case if one is not able to remedy this through alternative means, neurosurgery from this Dr. Sunil Patel sounds like the most promising answer. Sometimes the surgical route is unavoidable and the best feasible option. These cysts and the symptoms associated with them are not taken seriously by many doctors so to find this neurosurgeon is quite the blessing and opportunity.

2018 article:

https://muschealth.org/health-professionals/progressnotes/2018/spring/features/pineal-cysts

Dr. Sunil Patel short video:

https://musc.bcst.md/videos/resection-of-pineocytomas-offers-symptom-relief

2021 published study in International Journal of Neuro-Oncology:

https://www.internationaljneurooncology.com/article.asp?issn=2590-2652;year=2021;volume=4;issue=3;spage=54;epage=62;aulast=F%2E

Dr. Sunil Patel provider information at MUSC:

https://providers.muschealth.org/sc/charleston/sunil-jayavant-patel-md Tweet