Pineal Gland Tumors and Cysts Awareness for Australia and New Zealand - Creating a Public space to share information and educate and inform family/friends/carers and the medical professionals of symptoms, share information and have a VOICE! The medical system in Australia/New Zealand needs to INVEST in Brain Tumour research, FUND the diagnoses process, LISTEN to their patients and understand that
just because text books outline to medical students that pineal cysts are non-symptomatic, that there are a large group of people desperate for answers, respect, and support from their Health care providers, Insurance agencies and professionals trained in the neurology sector. Living with discomfort (and something in the centre of your brain) every day can be quite depressing, and cause severe anxiety for everyone involved – Let’s fasten the process and make way for changes to our current Medical system. Even so the medical professionals, doctors, specialist and general medical practitioners need to better grasp an understanding regarding the REALITY of symptomatic pineal gland tumours and cysts. This page is designed to bring people together suffering with pineal gland tumours and cysts, provide information to their family and friends, share practical and informative medical Information and to IMPACT the way this condition is managed in Australia and New Zealand whilst linking with our counterparts across the globe. If you’re a Pineal Gland Tumour or Cyst sufferer, family member/ friend, specialist or doctor; Share your Pineal Gland Cystic and Tumour stories here, share your ideas on how to support us, the medical specialists, general practitioners and doctors in Australia and New Zealand in better understanding patients with pineal gland tumours and cysts including research. This page encourages you to share your support mechanisms, friends/family can ask questions, provide medical success stories and recommend any solution that may raise awareness across our Countries. Our hope is that this Page can grow and be something that will lend a VOICE of courage, increase awareness/knowledge, and provide support to family, friends and carers. At the same time be accessed as a tool to change the way that the fields of neurology view symptomatic cysts and tumours in the pineal region! For those who know - The diagnostic process is lengthy and gruelling on all involved and generally takes many years to find the source of their physical pain and/or loss of cognitive function. Many patients with this disease do not get diagnosed and spend years being misdiagnosed, fighting the medical system for acknowledgement or suffering without any knowledge of the source of their pain. Most patients are never advised that a pineal cystic tumour can cause any issues and at times not advised it has appeared on and a patients MRI (until years pass and symptoms grow). Currently in the medical system most patients are diagnosed with an “incidental finding” rather never a main link to ongoing symptoms or the cyst. Medical intervention maybe available if you have seizures or a severe fluid brain blockage occurs? Even then surgery and ongoing testing can be denied. This needs to change NOW! Let’s keep an eye out for new ways to open the minds and hearts of so many doctors who are educated through medical training to not identify that this disease is real and CURABLE. We need to ensure we are not over medicated, misdiagnose, and are offered regular follow ups, MRI’s/MRA’s, second opinions, regular testing, clear diagnoses of tumour substance and provide us the respect that we deserve both emotionally and physically. There are also other Public, Closed and Support Groups available, so do asks if you would like to be linked to a private support group
Some fast facts:
Did you know Brain Tumours malignant or non malignant has the same affect’s on a patients brain cognitive behaviour and can affect all body functions? Did you know in Australia Brain Tumours are one of the least funded Cancer research programs – It is estimated that the leading cause of death from cancer in Children in is leukemia followed by in number 2 with Brain and other central nervous system cancer? Just imagine if you had something in the middle of your brain – Would you leave it there without regular support, testing and diagnoses? Did you know a Pineal Gland Tumor or Cysts can affect the flow of fluid to the spine and increase intracranial pressure? There are many facts we did not know – Now we are becoming one voice to share these stories! LETS COME TOGETHER AND CREATE A VOICE FOR FUNDED RESEARCH, MEDICAL SUPPORT IN RECOGNISING SYMPTOMS, REGULAR CHECK UP/TESTING INCLUDING MRI’S/MRA’S, ACCESS TO FACTUAL SECOND OPINIONS, INCREASE TRAINING FOR MEDICAL STUDENTS ON PINEAL REGION/TUMOURS, ACCESS TO SURGERY IF REQUIRED AND FUNDS TO SUPPORT THIS DEBILITATING CONDITION
So What is pineal gland, Its function, location and what are the symptom’s associated with a Pineal Gland tumours and cysts? The pineal gland is a small, pinecone shaped gland of the endocrine system. A structure of the diencephalon of the brain, the pineal gland produces the hormone melatonin. Melatonin influences sexual development and sleep-wake cycles. The pineal gland is composed of cells called pinealocyte’s and cells of the nervous system called glial cells. The pineal gland connects the endocrine system with the nervous system in that it converts nerve signals from the sympathetic system of the peripheral nervous system into hormone signals. Calcium deposits can build-up in the pineal and its accumulation can lead to calcification of the Pineal Gland
Function
The pineal gland is involved in several functions of the body including:
• Secretion of the Hormone Melatonin
• Regulation of Endocrine Functions
• Conversion of Nervous System Signals to Endocrine Signals
• Causes Feeling of Sleepiness
• Influences Sexual Development
• Influences Immune System Function
• Antioxidant Activity
Location
Directionally the pineal gland is situated between the cerebral hemispheres and attached to the third ventricle. It is located in the centre of the brain. It is deemed one of the most difficult places to operate and many neurosurgeons may not have had the adequate training or support team with experience to conduct the operation. Pineal Gland and Melatonin
Melatonin is produced within the pineal gland and synthesized from the neurotransmitter serotonin. It is secreted into cerebrospinal fluid of the third ventricle and is directed from there into the blood. Upon entering the bloodstream, melatonin can be circulated throughout the body. Melatonin is also produced by other body cells and organs including retinal cells, white blood cells, go**ds, and skin. Melatonin production is vital to the regulation of sleep-wake cycles (circadian rhythm) and its production is determined by light and dark detection. The retina sends signals about light and dark detection to an area of the brain called the hypothalamus. These signals are eventually relayed to the pineal gland
What is a Pineal Gland Tumor (Cysts are medically referred to as a Tumour with cystic visuals in MRI’s and CT scans)
Pineal tumours arise in the region of the pineal gland. This gland is a small structure deep within the brain. These tumours represent about 1% of all brain tumours but account for 3% to 8% of the intracranial tumours that occur in children. A Pineal Tumour can consist of neosplama’s, fluid filled cysts, begin tumour, calcified cyst and in rare cases malignant tumours
Pineal Tumour/Cyst Causes
As with most brain tumours/cysts, the cause of pineal tumours/cysts is largely unknown. Minimal research is available for people suffering from a pineal gland tumour or cyst
Pineal Tumour/Cyst Symptoms
Pineal region tumours arise in or near the pineal gland, which is a small midline structure located deep in the midbrain area, near many vital structures. The pineal gland is located next to the aqueduct of Sylvius, which serves as a passage allowing cerebrospinal fluid (CSF) to leave the centre of the brain where it is first produced, this fluid filters down your spine. Pineal Tumours can be cystic hence the reference to cysts Most people with a pineal cyst do have many signs and symptoms. A pineal cyst may cause headaches, hydrocephalus, obstruction of the vein of Galen (a vein at the base of the brain) and other blood vessels have been reported to be affected, Parinaud syndrome (a constellation of eye movement abnormalities), or other symptoms listed below. The exact cause of pineal cysts is unknown. What treatment options are available for Cysts? The best treatment options for pineal cysts depend on many factors, including the size of the cyst and whether or not it is associated with symptoms. For example, small cysts that do not cause symptoms do not require any treatment is usually only considered when a cyst causes symptoms or affects brain fluid flow. Treatment may involve open surgery, endoscopy or stereotactic removal of the cyst, stereotactic aspiration, and/or CSF diversion which is a procedure used to drain fluid from the brain. When a pineal cyst does cause symptoms, they may include headaches/migraines (the most common symptom), hydrocephalus (brain and spine fluid build-up), disturbances in vision, and Parinaud syndrome. People with symptomatic pineal cysts may have other symptoms such as difficulty moving, ataxia, loss of cognitive function, visual changes such as blurred/double vision, memory loss/disturbances, seizures, feeling like their head is going to burst, mental and emotional disturbances, vertigo, sleep disturbances such as insomnia and tired throughout the day, (circadian rhythm) troubles, nausea/vomiting, hormonal imbalances that may cause precocious puberty, or secondary parkinsonism,
Each person varies in symptom’s with no correlation to the size of the tumour/cyst
For further Information or any questions please do post on this page. We have wealth of expertise across our Admin Group!
