Globally, Pineal Gland Cysts/Tumors (hereafter referred to as "PGCT") are being brushed off by medical communities due to lack of research, funding, and education in place. This leaves many PGCT sufferers feeling isolated, misunderstood, anxious, and afraid of what lies a head for their lives. Medical communities are telling people with PGCTs that their PGCT is not considered a medical concern unless it is large enough to cause hydrocephalus, narrowing of the aqueduct, or if they are experiencing any symptoms that could be related to the PGCT.
This is a worldwide epidemic! People around the world are suffering every day with symptoms relating to their PGCTs but are not being taken seriously by their medical communities. In a previous blog post, I showcased an, "Evidence Synthesis Study" from the University of Calgary which stated:
"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."
The above statement from University of Calgary, Alberta, Canada, flat out states that they do not have enough evidence on the quality of life for those suffering from PGCTs; this statement shows that in Canada, alone, we are struggling to understand these cysts/tumors of the pineal region.
PGCT sufferers feel embarrassed to speak out about their medical condition and their associated chronic pain side effects that accompany this condition: nausea, dizziness, muscles spasms/twitches, pressure headaches, ringing in the ears, loss of vision, and of course - anxiety, depression, and suicidal thought patterns... In my opinion, PGCT sufferers are scrutinized and suffering heavily from Mental Health side effects because friends, family, and society believe what the medical communities are telling them - which is an under-funded, under-educated, under-researched, and out-dated approach on PGCTs.
Attached below are a few snip-its out of a peer reviewed published paper from the Journal of Neurosurgery, Collection: May 2012/Vol. 116 / No. 5/ Pages 130-136, entitled, “Symptomatic Intracystic Hemorrhage in Pineal Cysts, Report of 3 Cases”. The article states:
"Pineal cysts without neurological symptoms are often discovered as incidental findings on cranial MR images. In contrast, neurological symptoms such as severe headache, diplopia, or Parinaud syndrome, may occur as a result of *pineal apoplexy due to intracystic hemorrhage.... Their experience suggests that microsurgical resection of cysts may be an effective and curative treatment option.”
Many PGCTs sufferers suffer from neurological symptoms but are not being taken seriously by their medical communities. Severe chronic headaches - check, *diplopia - check, and *Parinaud syndrome - check (I was assessed and found to have Parinaud syndrome by one doctor just to be told by a different doctor that I do not have this symptom and everything is fine, "your cyst is not causing you any problems - go away"). Many PGCT sufferers are suffering from these symptoms and telling their medical communities that they need help and support but their medical communities are not taking them seriously.
My PGCT was found under MRI and considered an "incidental finding" because my GP was searching for MS (this is an extremely common way many of us suffering from PGCTs have received the diagnosis of "incidental finding"). Prior to, my neurologists in British Columbia, Canada, refused to give me an MRI for my increased chronic headaches over the years because I was a young woman and obviously my headaches are migraines caused by my periods and I should just take medication.
The above study also states that:
".... they can lead to neurological symptoms through growth or due to intracystic hemorrhage."
My original cyst measured at 14mm and in between imaging it grew a further 2mm but I was informed by my medical community that my cyst was "stable" and not a cause of concern.
It is not medically ethical to listen to someone complain about increasing pressure in their heads over the years, and other worrisome symptoms, just to have the medical community discover a PGCT (an abnormal mass - it should not be there) in a patient's brain just to turn around and say, "it's an incidental finding because we were looking for something else and didn't discover it. None of your medical concerns are attributed to this abnormal mass growing in the center of your brain - go away". People are suffering and dying from these rare brain tumors due to lack of education, funding, and research and this is enabling medical communities to get away with murder - literally!
Most recent peer reviewed medical paper about a PGCT bursting causing death is from June 2018, entitled "Sudden and Unexpected Death During Sexual Activity, Due to a Glial Cyst of the Pineal Gland".
Rosario Barranco; Sara Lo Pinto; Maria Cuccì; Fiorella Caputo; Francesca Fossati; Giulio Fraternali Orcioni; Francesco Ventura
The American Journal of Forensic Medicine and Pathology. 39(2):157-160, JUN 2018:
A 45-year-old woman, in apparently good health, collapsed and died suddenly, after reaching orgasm while engaged in sexual intercourse. According to the circumstantial account of her relatives, the woman suffered from severe headaches, which were exacerbated by certain types of physical strain.... A complete forensic approach concluded that the cause of death was fatal cardiorespiratory failure resulting from midbrain compression due to a nonneoplastic pineal gland cyst.... the intracranial pressure increase....may further aggravate compression on the brainstem, thus concurring to determine the death.
See a brief description of a woman who died from ruptured pineal gland cyst published by Am J Forensic Med Pathol. 2014 Sep;35(3):186-8:
A 30 year old woman died from what was suspected to be a ruptured pineal gland cyst. This woman did not suffer from any previous medical history other than chronic headaches and the only forensic evidence leading to her death upon autopsy was a ruptured pineal gland cyst.
Also, see the below instance of a 22 year old man who collapsed and died unexpectedly published by J Clin Pathol. 1996 Mar;49(3):267-9.
A report from NCBI published March 1996 (US National Library of Medicine National Institutes of Health) from their Department of Forensic Pathology, University of Sheffield, reported a case of a 22 year old man who collapsed and died unexpectedly. The study stated, “Postmortem examination revealed a glial cyst of the pineal gland.... Deaths from colloid cysts and pineal gland cysts are rare, but should be considered where no other cause of death is evident, especially with a history of headaches.”
Both ladies suffered from a history of headaches, medically documented headaches, and both suffered from PGCTs, yet there was no medical intervention or help given to these ladies. Medical communities tell those suffering to come forward if they develop symptoms but refuse to help those that
do. The lack of empathy towards sufferers of PGCTs (especially towards those of us with histories of chronic headaches) should be taken seriously and not brushed under the rug by medical communities.
Please, help spread the word of awareness towards the PGCT & Mental Health Awareness Campaign. Help us bring change to medical communities worldwide on how patients are treated and cared for while suffering from PGCTs before it's too late for both them and their loved ones.
Thank you for all of your continued love and support towards myself and the PGCT & Mental Health Awareness Campaign.
Much love your way special today and always,
* Diplopia: a term for double vision
* Parinaud Syndrome: is the inability to move the eyes up and down, a.k.a., dorsal midbrain syndrome, vertical gaze palsy, and Sunset Sign.
*Pineal Apoplexy: refers to sudden neurological deterioration following hemorrhage in the pineal region, must commonly into a Pineal Gland Cyst.
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.