Evidence Synthesis Summary on PGCT

Medical communities around the world are struggling to understand the effects that pineal gland cysts/tumors (hereafter referred to as "PGCT") have on a person's body.

Around the world, many people are suffering from symptoms related to their PGCT but are not being taken seriously by their medical communities. Many medical communities believe that the size of the cyst matters for related symptoms to appear. Unfortunately, most medical communities will only extract a PGCT when hydrocephalus or narrowing of the aqueduct is present. Globally, more research, funding, and education is required to fully understand the chronic pain side effects associated with PGCT prior to hydrocephalus or narrowing of the aqueduct.

PGCT patients experience chronic pain on a daily basis; unfortunately, those suffering are not being taken seriously by their medical communities due to lack of research; which has lead to a lack of known side effects associated with this rare brain tumor. PGCT sufferers suffer from chronic headaches, dizziness, loss of vision, muscle twitches/spasms, limb numbness, sleep disturbances, insomnia, seizures, light sensitivity, anxiety, depression, and suicidal thoughts... the list goes on.

Many sufferers are told that their PGCT cannot be the cause of their associated symptoms due to the size of their PGCT. In the "Evidence Synthesis Summary" from University of Calgary, published on April 5, 2016, it states:

"The relationship between the size of a pineal gland cyst and symptoms remains unknown. Due to conflicting results reported in the published literature, the size of a cyst is not considered a rule for experiencing symptoms."

PGCT sufferers are not considered "symptomatic" by most medical communities unless hydrocephalus or narrowing of the aqueduct is present. Due to lack of research, funding, and education put into PGCT patients who experience chronic headaches or a variety of other symptoms (prior to hydrocephalus or narrowing of the aqueduct) are not taken seriously and are not treated medically. The "Evidence Synthesis Summary" from the University of Calgary states:

"Surgery is only considered for patients with symptoms associated with pineal gland cysts and generally excludes patients with chronic headaches in the absence of associated hydrocephalus.... Surgery is currently the only known treatment for symptomatic pineal gland cysts."

Surgery for a cyst? Yes, it sounds scary but so does removing ovarian cysts or breast cysts and medical communities are in agreeance that those cysts should be removed, even if noncancerous, if they are causing discomfort or associated symptoms - why not pineal gland cysts than? The "Evidence Synthesis Summary" from the University of Calgary states:

".... that surgical treatment of symptomatic pineal gland cysts relieved symptoms in 95% of individuals (79 out of 83 participants in the included studies). A number of adverse events were reported after surgery, although all were temporary. No safety concerns related to surgery or long-term adverse events were reported."

How does a patient who sufferers from symptoms associated with their PGCT get labelled as symptomatic? Worldwide, our medical communities do not have the funding, research, or education put in place to fully understand the effects these cysts/tumors have on a person's body and when to properly label someone as "symptomatic". People are suffering everyday from these rare brain tumors and are not receiving medical treatment.

As stated by the "Evidence Synthesis Summary" from the University of Calgary:

"No evidence is published on the patient perspective. Future research on patient experiences and quality of life for those with pineal gland cysts is necessary to understand quality of life for individuals with symptomatic pineal gland cysts."

Worldwide, there are many people suffering from symptoms related to their PGCT, regardless of the size of their cysts, and prior to hydrocephalus or narrowing of the aqueduct. Those suffering inform their medical communities that they are in chronic pain and are suffering greatly but are told there is nothing wrong with them, take these drugs for migraines, and go away... this is not an ethical medical response!

Please, help us raise awareness towards PGCTs and their Chronic Pain side effects. Help those suffering receive medical attention from their medical communities and help us spread the word of this injustice so more funding goes into these rare brain tumors.

Thank you for taking the time to read my blog.

Much love and less pain,

Lasha Barbosa

"Our quality of life is nonexistent - help us receive a life of less suffering and more joy!"

~ Lasha

University of Calgary - Cumming School Medicine. University of Calgary - O'Brien Institute for Public Health. Pineal Gland Cysts, "An Evidence Synthesis Summary", The Health Technology Assessment Unit, University of Calgary. April 5, 2016.

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