Trigeminal Neuralgia FAQ

Trigeminal neuralgia, also called tic doulourex, is a rare neurological disease that causes sudden, severe, brief, stabbing recurrent episodes of facial pain in one or more branches of the trigeminal nerve. It is usually caused when the trigeminal nerve is being compressed by an artery or a vein, but can also be present with no apparent cause. It is sometimes misdiagnosed as a dental or jaw problem or as a psychological disorder. Once correctly diagnosed, there are several medical and surgical treatment options to reduce or relieve the debilitating pain caused by this disease. Patients with trigeminal neuralgia are given high priority in scheduling their evaluation.

What are non-surgical treatments for trigeminal neuralgia?
Who is a candidate for trigeminal neuralgia surgery?
What types of surgery for trigeminal neuralgia are performed at UCSF?
· Microvascular Decompression (MVD)
· Radiosurgery
· Radiofrequency Lesioning (also called radiofrequency rhizotomy)
Are there any studies for trigeminal neuralgia ongoing at UCSF?

Medical Therapy for Trigeminal Neuralgia

The first line of treatment for patients with trigeminal neuralgia is always medication. Even minimally invasive surgery carries risks and should be considered a last resort.

The drugs most commonly used for treating trigeminal neuralgia are medications that were originally developed for the treatment of epilepsy. However, this class of medications has been found to be quite effective in treating nerve pain, including TN, when taken on an on-going basis. The anti-convulsant most commonly prescribed for TN is carbamazepine (Tegretol®), which can provide at least partial pain relief for up to 80% to 90% of patients. Other anti-convulsants prescribed frequently for TN include phenytoin (Dilantin®), gabapentin (Neurontin®), lamotrigine (Lamictal®), oxcarbazepine (Trileptal®), and topiramate (Topamax®). The muscle relaxant baclofen (Lioresal®) can also be prescribed, alone or in combination with other drugs.

Commonly experienced side effects of drug therapy for TN include dizziness, drowsiness, forgetfulness, unsteadiness, and nausea. In addition, carbamazepine and other drugs prescribed for TN do not always remain effective over time, requiring higher and higher doses or a greater number of medications taken concurrently, and some patients experience side effects serious enough to warrant discontinuation.

At UCSF, patients can be evaluated by experienced neurologists who specialize in the evaluation and medical treatment of trigeminal neuralgia. To schedule an evaluation to confirm a diagnosis of trigeminal neuralgia and discuss treatment options, contact the Neurology Clinic at (415) 353-2273.

Surgical Evaluation for Trigeminal Neuralgia

Surgical evaluation for trigeminal neuralgia includes confirming the diagnosis of trigeminal neuralgia, reviewing a brain magnetic resonance imaging (MRI) scan to exclude other treatable causes of face pain, and evaluating the severity of the pain, the general medical condition of the patient, and the patient's preference for treatment goals versus risk aversion.

Trigeminal neuralgia surgery is reserved for people who still experience debilitating pain despite best medical management. Surgery for trigeminal neuralgia is rarely offered to patients with non-trigeminal neuralgia face pain or on atypical trigeminal neuralgia; operations for these conditions have much lower success rates and in many cases can make the pain worse and/or cause additional medical problems.

Microvascular Decompression for Trigeminal Neuralgia

Microvascular decompression (MVD), also known as the Jannetta procedure, is the most common surgical procedure for the treatment of trigeminal neuralgia. This is an open surgical approach where a small incision is made behind the ear, a small hole is drilled in the skull, and, under microscopic visualization, the trigeminal nerve is exposed. In most cases, there is a blood vessel (typically an artery, but sometimes a vein) compressing the trigeminal nerve. By moving this blood vessel away from the nerve and interposing a padding made of Teflon felt, the pain is nearly always relieved. While MVD is considered to be the most invasive surgery for TN, it is also the best procedure for fixing the underlying problem that usually causes TN: vascular compression. MVD also causes the least damage to the trigeminal nerve and provides, on average, the longest pain-free periods and the best chance of being permanently off medication. MVD has a long-term success rate of approximately 80% as a stand-alone treatment. The procedure requires an average hospital stay of two days, and four to six weeks to return to normal daily activities.

What are the potential side effects of MVD?

MVD is a major surgery, and includes the procedure of craniotomy-cutting a small hole in the skull. Typical surgical risks for any open-skull neurosurgical procedure include infection, excessive bleeding, spinal fluid leakage, and risks of anesthesia. Rare neurological injury can include damage to hearing, vascular injury (stroke), and, very rarely, death.

Will I have pain when I wake up?

As MVD is a major surgery, patients will have some incisional pain and headache postoperatively, but the nurses will give you medication to help you control this pain.

How long will I need to stay at the hospital?

Patients typically spend two nights in the hospital before being discharged.

When may I resume normal activities?

Pain and stiffness from the operation usually subside within a week, and you can begin to resume normal activities at your own pace. However, you should avoid heavy lifting or straining in the first six weeks following your surgery.

Will surgery be completely curative?

No one can promise that any surgery for trigeminal neuralgia will be successful for all patients, and there is always the chance that pain will recur at a later date; however, MVD is the best chance at relieving the underlying problem behind trigeminal neuralgia pain.

Radiosurgery for Trigeminal Neuralgia

Radiosurgery (Gamma Knife®) treatment for trigeminal neuralgia is the least invasive surgical option. In fact, it is technically not surgery at all. The Gamma Knife is a device that delivers precise, controlled beams of radiation to targets inside the skull, including the brain and associated nerves. For trigeminal neuralgia treatment, the radiation beams are aimed at the trigeminal nerve where it enters the brainstem. Gamma Knife treatment does not target the root cause of trigeminal neuralgia, but instead damages the trigeminal nerve to stop the transmission of pain signals. The procedure requires little or no anesthesia, and is performed on an outpatient basis. This procedure provides significant pain control or reduction in approximately 80+% of patients, but response is usually slower than for other treatments. Patients may respond within 4 to 6 weeks post-treatment; however, some patients require as much as 3 to 8 months for the full response. Most patients remain on full doses of medication for at least 3-6 months after treatment and we do not typically start to taper TN medications until pain relief has been achieved.

What are the potential side effects of Gamma Knife surgery?

Side effects may include tingling or numbness in the face (in up to 20-30% of patients), but this is usually mild if it does occur.

Will I have pain when I wake up?

Patients are not put to sleep for this procedure as it causes minimal pain and discomfort. The treatment requires use of a frame that is attached to the head with pins. There is mild pin site pain for approximately 1-2 days following treatment.

How long will I need to stay in the hospital?

Gamma Knife treatment for trigeminal neuralgia is an outpatient procedure – you will be able to go home the same day of your treatment.

When may I resume normal activities?

Patients usually begin to return to normal activities within 48 hours, though this depends on the individual.

Will surgery be completely curative?

No one can promise that any surgery for trigeminal neuralgia will be successful for all patients; Gamma Knife treatment "scrambles" the pain pathways, but there is always a chance that the pain can recur at a later date.

Radiofrequency Lesioning (RFL) for Trigeminal Neuralgia

Radiofrequency lesioning (also called radiofrequency rhizotomy) is a good option for severe pain in high-risk patients, such as patients with concurrent illness that would make an open surgical procedure too dangerous. It is also a good option for patients with multiples sclerosis (MS), whose TN is often not caused by vascular compression. Like Gamma Knife treatment, radiofrequency lesioning does not treat the root cause of TN, but instead damages the trigeminal nerve, to stop the transmission of pain signals. In this procedure, an electrode inserted through the cheek is used to heat the nerve and cause selective damage to stop pain signals from traveling to the brain. The treatment provides immediate pain relief in up to 90% of patients, but can cause more facial numbness than the other procedures and has a pain recurrence rate of 40% at 2 to 3 years post-surgery. If necessary, the procedure can be repeated.

What are the potential side effects of radiofrequency rhizotomy?

While radiofrequency rhizotomy is less invasive, less risky, and requires less time in the hospital than MVD, this technique also has a higher rate of pain recurrence. Radiofrequency rhizotomy also carries a greater risk of minor to severe post-surgical numbness, which can often be permanent. This procedure also carries the rare general surgical risks of infection and excessive bleeding, as well as excessive nerve injury, corneal numbness, anesthesia dolorosa, and intracranial hemorrhage.

Will I have pain when I wake up?

Patients may have some cheek pain at the needle insertion site. This usually resolves within one week.

How long will I need to stay in the hospital?

Radiofrequency rhizotomy for TN is an outpatient procedure – you will be able to go home the same day of your treatment.

When may I resume normal activities?

Patients usually begin to return to normal activities within 48 hours, though this depends on the individual.

Will surgery be completely curative?

No one can promise that any surgery for TN will be successful for all patients; radiofrequency rhizotomy "scrambles" the pain pathways, but there is always a chance that the pain can recur at a later date.