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TNA Australia Webinar – Dr Ben Jonker

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TNA Australia are delighted to provide the recording of Dr Ben Jonker’s presentation covering

“Which Procedure Should I Have For Trigeminal Neuralgia”

The Association has committed to create four educational webinars a year and we are delighted the members of our Medical Board are providing their expertise to help all sufferers of Trigeminal Neuralgia navigate their diagnosis and treatment.

The opportunity to work in the digital space has been provided by a grant to support our work in a Tele Health capacity, by The Cromwell Property Foundation and we acknowledge their generosity

Dr Ben Jonker is a member of the Associations Medical Advisory Board and you can read more about him using the below link

Central Neurosurgery | Dr Benjamin Jonker | Home

 

 

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Donations End of Financial Year Gift

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We have been delighted to receive a number of big donations this month.  It got us a bit curious what could be driving these wonderful gifts, which will make a huge difference to the services we can provide

So thanks to google I did a search and found the attached info.

Whatever the reason, every donation we receive is a huge gift and offers opportunity to reach all sufferers

 

 

Australians give at the end of the financial year – find out why

 

 

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Nerve Combing – Dr Jeremy Russell

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Early in¬†2022, a member of the TNAA Medical Advisory Board, Melbourne based Dr Jeremy Russell offered a webinar to Tasmanian TN sufferers. During his presentation he explained how he had conducted some ‘combing’ of the trigeminal nerve as a treatment to stop pain.This 2000 article addresses a few matters associated with nerve combing.
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Support Network Animated Design

We have been granted a free subscription from the team at Canva due to our Charity Status
So we tapped into our design brains and created an animation which shows what we do. We hope you like it

https://www.canva.com/design/DAE_PDWPS9k/1knIB5_5-93y95pV-WVkGA/watch?utm_content=DAE_PDWPS9k&utm_campaign=designshare&utm_medium=link&utm_source=publishshareli

 

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UK TN Sufferer Tells His Story

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This video is about a UK TN sufferer telling his story,  which hopefully will give encouragement to our sufferers who are considering a MVD procedure

 

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Facial Pain Terms

The Facial Pain Association in America have published a useful list of facial pain terms

We work closely with the FPA to provide information and education to all sufferers where ever they live in the world

Understand the words and terminology used for facial pain to become a more educated facial pain patient.

Ablative removal, separation or cutting of a structure

Acoustic neuroma (AN) a non-cancerous tumor growing on the acoustic or hearing nerve; occasionally AN can cause facial pain when it pushes a blood vessel onto the trigeminal nerve

Adhesions fibrous growths similar to scar tissue that forms at the site of tissue damage

Allodynia pain due to a stimulus which does not normally provoke pain

Analgesics medications that relieve pain

Anesthesia dolorosa painful numbness; occurs as unwanted side effect of some surgical TN treatments

Anesthetic an agent used to abolish pain

Anticonvulsant medication that prevents convulsions or seizures

Aplastic anemia potentially fatal blood disorder caused by damage to bone marrow. Rare but potential side effect of some anticonvulsant medications.

Arachnoid/arachnoiditis a membrane of the brain; when abnormlly thickened, it is a potential cause of compression on the trigeminal nerve and is then termed arachnoiditis.

Asymptomatic absence of symptoms

Atlas the top-most bone of the spine

Atropic wasted, smaller than usual

Atypical irregular, not conforming to the type

Atypical trigeminal neuralgia (ATN) a type of facial pain that may have some of the characteristics of classic TN (sharp stabs and trigger points) plus other symptoms (i.e. constant, aching or burning pain in addition to the stabs); sometimes referred to as TN2

Axon process of a nerve cell by which impulses travel away from the cell body

Auditory related to hearing

Bilateral referring to both sides; bilateral facial pain occurs on both sides of the face

Cerebellum part of the brain that controls movements

Cerebral cortex part of the brain that analyzes nerve signals and sends out responses

Cerebrospinal fluid (CSF) a fluid composed mostly of water, glucose, salt and proteins that surrounds, cushions and provides nutrients to the brain and spinal cord; a CSF leak occurs when CSF escapes through a small tear or hole in the outermost layer of connective tissue (called the dura mater) that surrounds the brain and spinal cord and holds in the CSF. This is an uncommon risk of MVD and other surgeries of the head.

Cluster headache searing, boring, come-and-go pain in the face or forehead thought to be caused by dilation of the blood vessels in the skull; sometimes confused with trigeminal neuralgia

Cluster tic syndrome combination of cluster headaches and trigeminal neuralgia

Compounding¬†a pharmacy technique in which medications are custom-prepared to meet specific needs of individual customers; those who offer this service are called ‚Äúcompounding pharmacists‚ÄĚ

Computer tomography CT sophisticated X-ray which takes pictures of layes of the body at any depth.

Cranial nerves twelve pairs of nerves that serve various areas and functions of the head; the trigeminal (facial) nerve is one of these

Craniectomy surgical opening of the skull necessary for brain surgery

Craniosacral therapy gentle manipulation technique somewhat similar to light massage that is aimed at freeing the flow of cerebrospinal fluid; some believe impeded flow of this fluid can cause face pain

Deafferentation pain pain that occurs when parts of a nerve are injured to the point where they are disabled; usually a constant, burning type of pain

Deep brain stimulation A procedure in which surgeons insert a thin electrode through a small opening in the skull into the thalamus, a part of the brain where pain sensation occurs. A stimulation device attached to the electrode delivers low-grade electrical signals in an attempt to override pain signals.

Demyelination the process of losing or destroying myelin, the protective sheath around nerve fibers

Diagnostic distinctive feature of a disease

Dura. The waterproof covering that surrounds the brain.

DREZ¬†acronym for ‚Äúdorsal root entry zone,‚ÄĚ a surgical procedure done in the neck region to disable the origin of the trigeminal nerve in the upper spine

Dysesthesia numbness or abnormal sensation severe enough that a it may be disturbing

Endodontist a dentist who specializes in filling root canals of teeth

Endoscope a surgical instrument that uses a tiny camera to project brightened and magnified images from inside the body

Epidemiology the study of disease as it occurs in groups of people or even other populations

Ephaptic transmission conduction across nerves at sites where it should not normally occur.

Facial nerve cranial nerve that controls most of the muscles and sensation in the face and some of the muscles that control chewing

Facial palsy weakness of the muscles of facial expression

Gamma Knife a non-incision surgical device that uses gamma radiation to cause precisely aimed damage to targeted tissue; used to create lesions on the root of the trigeminal nerve to lessen pain

Ganglion a cluster of nerve cells

Gangliolysis a surgery to create targeted damage to a ganglion, usually to stop pain signals from getting to the brain

Gasserian ganglion the cluster of nerve cells where the trigeminal nerve branches out into its three divisions and exits the skull

Gate Control a theory to explain how pain is experienced

Glial cells type of cells that the body uses to build myelin, the insulating sheath around nerves

Glossopharyngeal neuralgia pain that is in the throat and neck;  involving the glossopharyngeal nerve

Glycerol an oily alcohol substance that damages nerve fibers when in direct contact with the fibers

Granulomas abnormal growths as a result of irritation

Hematoma a bruise

Herpes zoster also known as shingles, this is a viral infection caused by the same virus that causes chickenpox; can cause burning pain on the face and/or body

Hypesthesia medical term for numbness

Hyperalgesia an increased response to a stimulus which is normally painful

Idiopathic refers to a disease or condition of unknown cause or origin

Lesion an area of tissue damage

Linac acronym for linear accelerator, a non-incision surgical device that uses high-energy X-rays to cause precisely aimed damage to targeted

Lumbar puncture insertion of a needle into the back to tap out CSF for testing

Mandibular area referring to the lower jaw region of the face

Masseter  a muscle which runs through the rear part of the cheek from the temporal bone to the lower jaw on each side and closes the jaw in chewing

Maxillary area referring of the upper jaw and cheek region of the face

Meckel’s cave cavity made up of dura mater (brain lining material) in which sits  the trigeminal ganglion and the divisions of the trigeminal nerve it is located inside the skull

Meningioma tumor of the meninges, the membrane that covers the brain and spinal cord; can cause facial pain if the tumor pushes a blood vessel against the trigeminal nerve

Microvascular decompression (MVD) type of brain surgery in which the aim is to lift a compressing blood vessel off the trigeminal nerve and insulate the two with a small cushion

Motor cortex stimulation surgical procedure in which one or two small contact plates attached to an electrical stimulation device are placed on the surface of the brain over the cortex region; stimulating this region with low-grade electrical current reduces activity in the thalamus where pain is felt

Myelin the protective coating that surrounds nerve fibers; made out a layer of proteins packed between two layers of lipids (fats)

Myofascial pain dull, aching muscle pain of uncertain cause; when it occurs in the facial muscles, the pain can be triggered by touching the area

Nerve block use of a drug, chemical or surgery to stop a nerve signal from getting through to the brain; can be used for temporary pain relief or as a way to diagnose the exact nature and location of a pain

Nerve fiber strand of tissue made up of nerve cells that carries nerve impulses (biochemical signals to and from the brain)

Nervus intermedius a branch of the genicular nerve; when compressed by a blood vessel, it can cause pain deep in the ear

Neurectomy surgical removal of a nerve or nerve branch

Neuropathic pain originates in the nerve, usually due to injury or disease

Neuropathy disturbance of function or pathological change in a nerve causing numbness when it occurs in a sensory nerve

Neurotransmitter body chemical that is used to transmit nerve impulses from one nerve cell to another; sodium and calcium are two of the most common

NICO acronym for neuralgia-inducing cavitational osteonecrosis; presumed cause is a chronic infection of bone in the jaw that can damage the nerve branches in the affected bone

Nociceptor type of nerve receptor that activate when there is a painful stimulus

Ophthalmic area referring to the region of the face around the eyes

Opioids pain-killing agents that originate from the poppy flower and its product, opium

Orofacial area of the face around the mouth

Palsy a medical term which refers to various types of paralysis, often accompanied by weakness and the loss of feeling and uncontrolled body movements

Pain threshold the point at which an applied, escalating sensory stimulus (heat, cold, pressure, pin-prick, etc.) is reported by a person as pain

Pain tolerance the reaction of a person to reported pain after it has crossed the pain threshold

Paratrigeminal neuralgia¬†throbbing headache-like pain in the upper branch of the trigeminal nerve, thought to be caused either by an inflammation or infection of the nerve; also called ‚ÄúRaeder‚Äôs syndrome‚ÄĚ

Paresthesia¬†an unusual sensation that may be described as ‚Äútingling,‚ÄĚ ‚Äúcrawling‚ÄĚ or pins and needles; often accompanies mild numbness; an abnormal sensation whether spontaneous or evoked

Percutaneous¬†through the skin; when referring to ‚Äúpercutaneous procedures‚ÄĚ in treating facial pain, a type of surgery in which the surgeon inserts a needle or electrode through the cheek as opposed to entering the skull

Peripheral nerves nerves outside the brain and spinal cord; these include the many branches of the trigeminal nerve that serve the teeth, gums and other parts of the face

Post-herpetic neuralgia a type of facial pain caused by damage from the herpes zoster (chicken-pox) virus; may occur after a bout of shingles

Preganglionic situated proximal to the a ganglion

Radiofrequency use of generated heat through an electrode to cause selected damage to tissue

Radiosurgery the use of radiation devices to treat diseases and disorders without having to cut into tissue; examples are Gamma Knife and CyberKnife

Refractory stubborn or unmanageable; resistant to a process or treatment

Remyelination the process of rebuilding lost or damaged myelin, the protective sheath around nerve fibers

Root entry zone section of the trigeminal nerve near the brainstem at which point the myelin covering changes

Rhizotomy surgery to cut or damage a nerve root so as to interfere with the transmission of pain signals to the brain

Stereotactic guided by X-ray view or similar scanning device; a way for surgeons to be guided to precise, three-dimensional locations in the skull and face

SUNCT¬†acronym for ‚Äúshort-lasting, unilateral, neuralgiform headaches with conjunctival injection and tearing‚ÄĚ; a sharp, come-and-go pain centering around the eye along with a red eye, tearing and a runny nose; believed to be caused by an inflammation of blood vessels around the eye

Secondary trigeminal neuralgia facial pain that occurs as a result of another condition, such as multiple sclerosis or a tumor

Temporal arteritis aching, throbbing and sometimes burning pain in the temple area caused by an inflamed artery in that area

TENS unit a device that delivers regular, low-grade electrical signals that distract or override pain signals; TENS is an acronym for transcutaneous electrical stimulation

Thermocoagulation using heat to create tissue injury; the technique used in radiofrequency lesioning surgery

Thalamus¬†the part of the brain that relays messages between various parts of the body and the appropriate other part of the brain; the brain‚Äôs ‚Äúcentral switching station‚ÄĚ

Tic douloureux¬†‚Äúpainful spasm‚ÄĚ in French; another name for trigeminal neuralgia

TMJ disorder/TMD pain in the jaw joint

Trigeminal neuritis an inflammation of the trigeminal nerve and/or its branches

Trigeminal nucleus the origin of the trigeminal nerve in the top three bones of the spinal column, the upper-cervical spine

Trigger point often at the end of a nerve which if touched results in pain; also referred to as the action that sets of facial pain, such as tooth-brushing, cold air, or chewing

 

 

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Trigeminal Neuralgia – Chronic Pain Meditation

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As a Trigeminal Neuralgia sufferer have you though about using Chronic Pain Meditation

When a Trigeminal Neuralgia sufferer experiences pain flares which are hard to deal with,  it may be worthwhile taking some time for yourself and using a meditation tool to help reduce anxiety and stress and hopefully will also result in a  reduction in the pain felt.  It is so important to use a holistic approach to chronic pain

“This meditation for chronic pain uses relaxation, breathing exercises and guided imagery with one goal in mind, to produce your body‚Äôs natural relaxation response to counteract the effects of stress and reduce pain. Relaxation techniques are safe for anybody to use and do not have the side effects of pain medication.”

Any opinion expressed or information provided in/with this email is not a substitute for medical advice.¬† Always contact your doctor or other medical professional if you have a question concerning your or another’s health.

 

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Mental Health and Trigeminal Neuralgia

The Mental Health of sufferers with Trigeminal Neuralgia and that of their carer or support network is as important as their medical health.

‚ÄúMental health is about wellness rather than illness‚ÄĚ

Sufferers of Trigeminal Neuralgia often refer to their condition as ‚Äúhaving a flare up‚ÄĚ, and ‚Äúnot having a flare up‚ÄĚ.

For people unfamiliar with the condition, the statement that a sufferer is ‚Äúnot having a flare up‚ÄĚ, would be seen as a very positive thing. What they may not know is that the pain may have been controlled on that day by medication or surgical intervention. In addition, what the statement does not reveal is the deep anxiety that at any moment the pain could be back. Everyday, as a sufferer goes about the business of living, s/he can‚Äôt totally relax and enjoy the moment because the fear of striking back is forever there. That fear is something like being a deer in the headlights of an oncoming truck, becoming stuck and not able to move out of the way

Our Association is extremely fortunate that we have dedicated volunteers who run Support Groups around the country. All of our volunteers suffer from Trigeminal Neuralgia. Some have had surgical intervention but that does not mean they have been cured. Trigeminal Neuralgia pain can come back….and that is a huge mental burden to carry around.

Mental Health or Mental Wellness is now recognised as a key contributor to how anyone with a chronic or acute condition copes and improves quality of life. But how do you get onto the path of supporting mental health, especially when in pain, feeling isolated, depressed, anxious and calm thinking is impossible?

As an Association we have on our website information about what to do when a sufferer presents to the Emergency Department of a Hospital, where a qualified Medical practitioner will take over the care. A sufferer may also need to consider the Emergency Department for Mental Health and find a Counsellor.

While TNAA is not funded for Mental Health purposes, in Australia we are extremely fortunate to have a national organisation funded by State and Federal Government called Beyond Blue who have trained counsellors on hand to help in the time of need. They assist callers to improve their quality of life and provide tips on how to move forward

When sufferers are in pain it is not easy to think clearly, and sometimes talking is impossible. By adding a link to Beyond Blue in your browser, mobile phone, or address book, the organisation can be easily accessed. When a sufferer is not in pain that is the time to get to know how Beyond Blue can be of assistance.

Why not create an account and get information sent directly to you?

To contact Beyond Blue Phone 1300 22 4636,

click on this link to read the article  What is mental health РBeyond Blue

Beyond Blue – Chronic physical illness, anxiety and depression fact sheet

395015_1117_BL0124_v2_FA (beyondblue.org.au

Complete the checklist and receive recommendations

Anxiety and depression checklist (K10 test) – Beyond Blue

 

 

 

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Whole Person Pain – Empowered Relief

The Association recently were provided details from Stamford University of the presentation by Dr. Beth Darnall, PhD ‚Äď Associate Professor, Department of Anesthesiology, Perioperative and Pain Medicine

A video recording of last week‚Äôs program called ‚ÄúWhole Person Pain‚ÄĚ is now available

 The presentation in 90 minutes in length and has details of many study approaches.  It is very relevant to the USA sufferers but there are plenty of tips to help you manage pain.  This presentation is one you can dip in and out of to view.  We hope you find it interesting and educational

Whole Person Pain – Empowered Relief – YouTube

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Webinar – Ben Jonker Presents “How to Choose the Right Surgery”

Trigeminal Neuralgia Association Australia is delighted to announce our first Telehealth Webinar – a presentation by Dr Ben Jonker – How to Choose the Right Surgery

Ben is also a Member of our Medical Advisory Board and works closely with the Association

We would also like to acknowledge the Cromwell Foundation who provided the Association with a grant to enable us to reach out using Digital Media

The webinar is limited to 500 attendees, so be sure to add this event to your calendar.  You will not be required to register in advance just click on the link below the flyer to join the meeting

Click on the link below to join the webinar on March 16th – see local times on the flyer

https://us02web.zoom.us/j/83198950395