The trigeminal nerve is one of twelve sets of cranial nerves and is the largest. The cranial nerves all come in pairs, one on each side of the face. The trigeminal nerve has three branches which can be referred to by their number or their name.

V1 - Ophthalmic (sensory) - This branch carries sensory information from the scalp, forehead, upper eyelid, the eye itself and from the nose including the tip of the nose.

V2 – Maxillary (sensory) – This branch is responsible for sensory information from the lower eyelid, cheek, upper teeth lip and gum, and the nostril.

These branches of the trigeminal nerve supply information to the brain on light touch, temperature and as we all know too well sensation of pain. Knowing which branch is affected helps one understand what "triggers" to avoid and why one gets an attack when certain activities are done.

Example, Helen and Elaine both have trigeminal neuralgia. Helen’s main branch of trouble is the V3. Eating can prove to be excruciating for Helen as that branch carries all the sensory information from her mouth, lower teeth and jaw to her brain. Elaine, she no problem eating whatsoever yet any attempt to rub or touch her eye brings the spasms of pain on for her. This is because Elaine’s main branch of trouble is the V1. Helen, she has no problem touching her eye.

Yet, both of them suffer the same attacks of pain when the wind or cold air hits their face. Why? All three branches relay pain sensation and as the wind or cold would touch the whole face the same agony of pain is felt. It would however be felt in completely different areas of their face.

They both have trigeminal neuralgia yet as different branches are involved they can have the same but also different experiences with the pain. This is why when we read stories from sufferers we see so many different triggers and so many different areas of the face that pain affects them.

When we read about side effects from different surgeries one common thread that seems to stick out between all of them is a feeling of numbness in the face or "that just from the dentist" feeling. This is due to the fact that each branch of the nerve carries that touch sensation from the face to the brain. As most of the surgeries are destructive in nature the chance of numbness in the face is relatively common.

No surgery is 100% successful for everyone. Everyone hopes that they will be among the people who have complete and life long pain relief as a result of their surgery. The truth is that over time there will be a "failure" rate for each procedure. A failure is defined as a return of TN pain and the rate differs for each type of procedure:

Patients should be aware prior to surgery what the failure and success rates of that particular procedure. You should discuss this with your neurosurgeon before surgery and have a plan for what you can do next in the event that the TN returns.

Since TN is diagnosed primarily by the history and not with specific lab or X-rays, in some instances the pre-op diagnosis was wrong. In the case of an MVD, the surgeon may be unable to identify a blood vessel anywhere close to the Trigeminal nerve. The TN could be caused by some other disease process.

Another cause could be surgeon inexperience. Statistically those surgeons who perform the procedure more frequently tend to have higher success rates.

The destructive procedures are temporary measures and when the TN pain returns it may not be a failure but an expected outcome as the body heals the damage done during the procedure.

The return of neuralgia could be caused by a different problem. Just because a person has Trigeminal Neuralgia does not mean they can not over time develop facial pain from a different disease.

The first thing is to get a proper diagnosis of the new pain to determine if it is TN and what its cause might be.

You may need to resume medications. Often the TN may respond to lower levels of drugs following surgery.

The procedure may be repeated, or a different surgical procedure can be tried. A second procedure, usually has a lower success rate.

Explore Motor Cortex Stimulation as a possible treatment.

Motor cortex stimulation (MCS) is a surgical option for patients with trigeminal neuralgia which has been difficult to control. It often is used when other surgical treatments have failed. Statistics indicate that it is results in major pain relief for 60-70% of TN patients.

This procedure involves stimulation of the region of the outer portion of the brain (motor cortex) most immediately involved in movements of the face, neck, trunk, and arm and leg.

Procedure
With the use of an MRI and electrode recordings, the correct area of the brain is identified. A craniotomy is performed and electrodes are placed over that area. These electrodes are placed above the dura. Several days of testing and reprogramming of the stimulator are done until the patient experiences a dramatic decrease in the pain. Once it has been confirmed that the stimulation consistently decreases the pain, a second craniotomy is performed to install the stimulator permanently. The electrodes are connected to a pulse generator usually implanted in the chest or abdomen. The wires from the electrodes are fed through the neck to the pulse generator.

Patients are given a control box to turn the stimulator off and on and to adjust the level of stimulation within the limits outlined by the surgeon.

Risks of Motor cortex stimulation

The unit is affected by any electromagnetic field and some people have trouble being around older computers for example.

The electrodes are permanently left in the skull so medical tests like an MRI are not possible.

This may only be a short term solution.

As most of you are aware, we were removed from the TNAC and told by its president that we were no longer welcome to be the support group leaders of of the Calgary and Toronto Support groups.  Both groups decided independently to select their own leaders and we were each "re-elected".  Since then we have heard from many people, in person, by phone and by e-mail expressing their appreciation for the work we have done and offering encouragement and support.   Thank you all. 

This demonstrates exactly what CaTNA is all about - a network of people with TN who support and encourage each other.  We are all taking this journey with TN together and together we can help each other through the tough times. 

Your messages of encouragement and support have been wonderful.  Thank you again.

Kathy, Sandra and Jan

Canada TNA is your organization and we hope you will be involved. We have a group of 5 people who have formed an "Implementation Team" to help start the organization until we can properly select an executive. We 5 are:

Jan Williams and Gaye Mackie from Alberta

Sandra Arangio, Kathy Somers and Valerie Brooks from Ontario

If you would like to become involved, please contact us. We would love to have you!!

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All information provided on this website is for educational purposes only and should not be used as a substitute for qualified medical advice.     CaTNA webmaster
Last modified: 03/31/09.