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An Introduction to Support Group WA Inc UNDERSTANDING TRIGEMINAL NEURALGIA SYMPTOMS AND CAUSE OF TRIGEMINAL NEURALGIA DIAGNOSIS OF TRIGEMINAL NEURALGIA SURGICAL OPTIONS ALTERNATIVE / COMPLEMENTARY TREATMENTS TRIGEMINAL NEURALGIA SUPPORT GROUP WA INC CONTACT INFORMATION TRIGEMINAL GANGLION Each trigeminal nerve has three branches that conduct sensation from the upper, middle and lower portions of the face to the brain UNDERSTANDING TRIGEMINAL NEURALGIA
Trigeminal Neuralgia (TN) is a chronic disorder that usually affects people in middle or later life and only rarely in children or young adults. It is an excruciating facial pain that tends to come and go in sudden shock-like attacks and is due to a chronic disorder of the trigeminal nerve (5th cranial nerve) which is the largest of the body's 12 pairs of cranial nerves. The trigeminal nerve has three branches It is not unusual for a TN patient to see half which conduct sensation from the upper, a dozen or more dentists, oral surgeons, ear middle and lower portions of the face and nose and throat and TMJ specialists etc. Many also the oral cavity, to the brain.
mode of treatment – root canals, extractions, oral surgeries etc – are pursued, to no avail, The painful attacks of TN can involve one or while the pain steadily worsens and more more branches. Most commonly the middle classic symptoms of TN develop.
branch or lower branch either individually or in combination with each other are involved. TN is generally considered to be the Only about 4% of patients experience pain in most painful of all human afflictions but the upper branch. In rare instances, all three fortunately it is not fatal; rather it is a branches may be involved. The right side of treatable disorder that can be effectively the face is more frequently affected than the managed, and often times, long term control left and in a small percentage of patients, can be achieved.
pain occurs on both sides of the face, but rarely at the same time.
POST HERPETIC NEURALGIA
Since the largest per cent of the patients Sometimes, facial pain can occur after have involvement of the middle and lower shingles particularly if treatment with anti- branches, many of the initial symptoms viral medication is not commenced as soon are felt in the teeth and gums. This period, as shingles is detected.
sometimes referred to as pre-trigeminal Post herpetic pain tends to be more constant neuralgia presents a considerable diagnostic than classic TN and also will often strike the challenge, especially for dentists since they eye/forehead region more than the cheek are, quite often, the first health professional and lower jaw regions. This type of pain to see the patient.
almost always goes away in time. It may be While true dental abnormalities do produce months for some or one or more years for pain, the pain of TN is not caused by dental others but rarely lasting more than five years problems. What may appear as a toothache may actually be an early symptom of TN.
SYMPTOMS AND CAUSE OF TN
Classic TN has distinct symptoms which clearly separate it from other forms of facial pain • Pain in short, acute bursts rather than dull, constant ache. Often described as electric shock-like in nature • Pain is usually triggered by light touch or sensitivity to vibrations such as brushing teeth, shaving, a light breeze, a soft kiss, talking etc.
CAUSE OF TN
• The pain has a tendency to come and go There are several theories on the cause or with periods of intense, sometimes totally causes of TN, but not one that is universally debilitating pain, followed by complete accepted by all medical professionals. The pain-free periods of remission lasting from majority of specialists believe that the weeks to months or possibly longer.
protective covering (myelin sheath) of the trigeminal nerve deteriorates allowing • Most patients experience pain during abnormal messages (pain) to be sent the day while they are up and about. along the nerve. The main cause of this Generally, they are pain-free while asleep deterioration is usually due to a blood vessel unless triggered by the touch of bed linen pressing on the trigeminal nerve where it or changes in position.
enters the brain stem. In a few cases, TN The patient history and description of occurs as a result of a tumour or multiple symptoms are the doctor's major aids in sclerosis but these are relatively uncommon. confirming the diagnosis of TN. Most doctors The deterioration causes the nerve to send will recommend a head/brain MRI or CAT abnormal messages to the brain – like static scan along with other laboratory tests. These in a telephone line. These abnormal signals are conducted mainly to rule out other disrupt the normal signal of the nerve and possible causes of the pain such as tumours, multiple sclerosis etc. There is no specific test available to confirm the diagnosis of TN.
DIAGNOSIS OF TN
As TN is not a common complaint and especially in the early stages. Unlike many there are many other types of facial pain, afflictions, there is no blood test, x-ray or we recommend that you seek a referral to a other test that tells you that you have TN. It neurologist for a diagnosis of the pain and is diagnosed by the patient's description of the prescribing of the medication most the symptoms and by ruling out other things. suited to the pain.
Therefore it is important to provide the doctor with a clear description of the pain.
TN is not always easy to diagnose because it can mimic many other possible problems ANSWERING THESE QUESTIONS WILL ASSIST THE DOCTOR IN DIAGNOSING YOUR PAIN
• Is pain predominately in your face – ie • What medicines are you taking for the forehead, eye cheek, nose, upper/lower pain? List and include over the counter ones, the dosage and time of day taken • Is pain only on one side of your face • Did you experience any major reduction in facial pain (partial or complete) from • Is pain entirely or mostly brief taking any of these drugs. Were there any • Is it electrical, shocking, stabbing, • Did your pain start after shingles • Do you have constant background facial • Do you have multiple sclerosis pain eg aching, burning, throbbing, stinging and is it for more than half of • Did your pain start after a facial injury your waking hours • Did your pain start only after facial • Can your pain start by something surgery (ie oral surgery, ear/nose/throat touching your face eg by eating, washing surgery or plastic surgery) your face, shaving, brushing your teeth etc • When you place your index finger right in • Since the pain started, have you ever front of your ears on both sides at once experienced periods of weeks, months, or and feel your jaw open and close, does years when you were pain free (This does not the area under your fingers on either side include periods after pain relieving surgery or while on medications for the pain) Many patients find that TN can be effectively Carbamazepine (Tegretol) has been
managed with medication. Even though the the primary drug used to treat TN. Many pain of TN may come and go, it is necessary neurologists believe that the relief of facial pain for a TN patient to take medication regularly with Tegretol confirms the diagnosis of TN. The to prevent the sudden onset of an attack. drug is introduced slowly and increased by Taking medication sporadically is ineffective, the doctor to a level where the patient is pain and abrupt withdrawal of medications can free or side effects occur. It has been shown cause side effects. in controlled clinical trials to be effective in approximately 60% of patients with TN.
Once a patient has been pain free for four to six weeks, the medication may be gradually Phenytoin (Dilantin) is another drug that
tapered off but only on your doctor's advice.
is used to treat TN, especially if the patient has had adverse side effects to Tegretol. Analgesics (such as aspirin and Nurofen) and Since Dilantin may also be administered narcotics are ineffective against TN because intravenously, it is sometimes used to stop an attacks are usually sudden and long term use acute attack, such as in the emergency room. of narcotics is not advisable.
Dilantin is considered to be less effective in Anticonvulsant medications which slow addressing TN, but it may be better tolerated down the nerve's conduction of pain signals by the elderly patient.
are usually the first treatment option for These drugs, which are also used as anticonvulsants, generally are thought to work by blocking the firing mechanism of the nerve. The more common side effects are dizziness, drowsiness, forgetfulness, unsteadiness and nausea. Serious side effects may occur although they are rare. They include anaemia, liver toxicity and kidney dysfunction. Patients on Tegretol and Dilantin should have periodic blood counts to monitor any blood abnormalities.
Gabapentin (Neurontin) is a more recent
anticonvulsant. Since it is eliminated by the
body rather than metabolized it is felt to be
more easily tolerated and to cause less liver
toxicity. Neurontin has also been found to be
beneficial in the treatment of some atypical
facial pain syndromes and other painful
Anticonvulsants can be given in combinations. Neurontin and Baclofen are often given as a second drug along with one of the other anticonvulsants.
Alcohol and other sedatives should be avoided with most of these drugs.
Switching medications may be necessary, so in order to maintain a pain relieving blood level of medication, discuss with your doctor how to begin the new medication while tapering off of the old one Pregabelin (Lyrica) is a successor to
Long term use of anticonvulsant drugs have Gabapentin (Neurontin) and is chemically been found to deplete bone mass, leading similar to that drug. It is said to be as to osteoporosis, so bone density testing and effective as Neurontin, but at lower doses, calcium supplements are recommended.
which should translate to fewer side effects.
About 80% of TN patients will respond to Other medications used in the treatment of TN medications and find their TN symptoms can may include Baclofen (Lioresal), clonazepan be effectively managed with drugs; however, (Rivotril) and sodium valporate (Epilim).
20% will not. Consult your neurologist for During all phases of medical treatment, complete information regarding medication patients need to communicate their pain dosages and specific questions about them.
level and / or drug side effects to their neurologist or other health care professional so that medication can be regulated effectively. These medications work best with a consistent blood level, so they must be taken on a regular schedule.
To avoid serious side effects, including seizures, anticonvulsant dosages must be increased and decreased slowly as directed by your doctor. Do not stop these medications abruptly. The drugs tend to work on an all or nothing principle. They do not give partial relief as the dosage is increased; they work when the correct dosage is reached, so dosage must be individualized with each patient.
A sizable number of TN patients achieve long term relief from medication. Those for whom medication does not provide relief or those who suffer unacceptable side effects from medication, may want to consider surgery.
There are several surgical interventions used to treat TN, none of which is 100% effective in all cases. Collectively, these procedures have an initial response rate of about 80%, with approximately 25% of patients experiencing some level of recurrence within one to five years. Many of these patients RADIOFREQUENCY RHIZOTOMY
respond very well when surgery is repeated This is one of the most effective and safest or other medical management is pursued.
procedures for relieving TN pain. During the The surgical techniques used to treat TN procedure – which is usually performed on an range from procedures performed at day outpatient basis while the patient is sedated surgery to damage the nerve to that of – an electrode designed to destroy the part invasive surgery that requires a hospital of the nerve that causes pain is placed on stay of several days' duration. Determining the nerve using a needle inserted through which procedure is the best choice for a the cheek. A moderate amount of numbness particular person should be based on several around the area where the pain was located is factors such as the patient's preference, an expected side effect of this procedure.
physical well being, previous surgeries, Statistics overseas have indicated that after 5 presence of multiple sclerosis, and area of years, 50% of patients were pain free.
trigeminal nerve involvement particularly where the upper/ ophthalmic branch is involved. Undoubtedly, recommendations by the neurologist or neurosurgeon will This procedure is similar to radio frequency play a strong part in the patient's decision rhizotomy. Instead of inserting an electrode making process. The Support Group is not into the nerve, the surgeon injects an alcohol an advocate for any individual mode of substance, called glycerol, which bathes the treatment, but serves to provide information nerve and damages the pain fibres. As with the on the various treatments available so that radio frequency rhizotomy, minor numbness patients can explore all their options can be expected following this procedure.
Statistics have indicated that this procedure is less effective than the radio frequency rhizotomy with less than 50% pain free after 4 years.
With the patient anaesthetized, a small opening is made behind the ear. While This again is a similar procedure but in this case viewing the trigeminal nerve through a tiny balloon is inserted through a catheter a microscope, the surgeon places a soft into the trigeminal ganglion (the central part cushion (typically shredded Teflon) between of the nerve that transmits nerve impulses) and the nerve and the blood vessels that are then inflated. The inflated balloon compresses the nerve and damages the pain fibres. Again The procedure usually takes two to four minor numbness may result.
hours and patients can expect a hospital stay of at least two to five days.
Statistics have shown that in excess of 80% This is the most invasive of all surgical were pain free, either with no medication or options to treat TN, but it also offers the some medication, after 5 years.
lowest probability that the pain will return within 5 years. This surgery aims to remove the cause of the problem rather than damaging the nerve. ALTERNATIVE / COMPLEMENTARY TREATMENTS
There are a number of alternative treatments that may assist in alleviating the pain and reducing the need for drugs or surgery. Often sufferers will seek alternative treatments because of lack of effectiveness or side effects of the drugs or due to failed surgery. Some may be suffering from atypical TN pain for which drugs or surgery may provide only limited pain relief.
As an example, several members of the support group have achieved pain relief from kinesiatric remedial massage treatment TRIGEMINAL NEURALGIA SUPPORT GROUP WA INC
WHO WE ARE
The group is affiliated with the Trigeminal Neuralgia Association (TNA) in the United The Support Group commenced in 1990 with States which is conducting substantial the aim of providing information, mutual research on all aspects of treating TN.
support and encouragement to persons suffering from Trigeminal Neuralgia (TN) and A newsletter is sent to members prior to related facial pain conditions.
each meeting and contains information from TNA and other sources to assist members, At that time, TN was little known in the particularly those unable to attend the community due mainly to the fact that meetings. The group has developed an it affects only about one in every 20,000 extensive library of books, and also video people. Because of the excruciating pain, tapes and DVD's of addresses given by sufferers felt isolated and lacking knowledge medical professionals to the group or at TNA of the medication, surgical and other options conferences in the US which are conducted available to alleviate the pain.
every two years.
The group has grown to more than 100 Membership is $20pa to cover printing members and conducts meetings on a six and postage of the newsletter and persons weekly basis at Perth and Midland with seeking an application form should contact contact points in regional areas.
the Treasurer or Secretary.
The purpose of these meetings is to hear medical professionals speak on the latest developments in treating TN and to share the experiences of members.
Brian Power - President/Treasurer
Tel: 08 9385 9550
Julia McDonald - Secretary
Tel: 08 9384 5816
Tel: 08 9229 6452
Tel: 08 9845 1706
Proudly sponsored by Lotterywest Support Group WA Inc
from the President of the Congress On behalf of the Organizing Com- multi-approach discussion on mittee I have the pleasure to wel- "quality in clinical practice" will come you to the 2nd World eventually affect to the better the Congress on "Quality in Clinical quality of life of our patients.