Despite the uncertainty of the cause of this condition, we do know a lot about what treats this painful condition. These treatments vary from medicines, to needle procedures, to brain surgery to radiation. In general, there seems to be something for everyone. If you or someone you love has this condition, the first thing you should do is learn about your options and work with your clinician to select the treatment option that is right for you. The one thing you should not do is to feel isolated and hopeless. There are a lot of others who suffer from the same condition and have made these decisions successfully. No one should accept this pain as untreatable.
The usual form of medicine is the same as used for seizures. Think of trigeminal neuralgia as an electrical current through your face, just like seizures are electrical currents through the brain. The same kind of medicine works for both. There are several medications which are known to work well:
- Carbemazepine is the gold standard. It treats the condition very well, but can have undesirable side-effects such as drowsiness, unsteadiness, difficulty with coordination and memory, slurred speech, and some difficulty with cognitive functioning. You will also need to get regular blood tests because your white blood cell count, platelets and liver functions must be checked. However, it works better on the pain than most other drugs and is used safely by millions of people for seizures. Most patients start out on low doses, gradually increasing the dose under clinical supervision until they achieve the best pain relief with the least number of side-effects.
- Gabapentin is also used. It does not require regular blood work.
- A carbemazepine type drug that is a newer addition to the list of options and may have fewer side-effects, but can affect your blood sodium and must be monitored.
There are many other drugs (mostly those for seizures) which have also been tested. Your neurologist or primary care physician can help you select and use the right drug in the right doses to get the desirable effect. Many people who suffer from trigeminal neuralgia successfully treat this condition for many years with medication.
If Medication Doesn’t Work
If medication no longer holds the pain or if the side-effects are intolerable, there are several procedures to consider. We encourage trigeminal neuralgia patients to start learning about their options long before they are in urgent need of a procedure. The selection of a procedure depends on patient preference, general medical condition and age, urgency of need for a procedure, and the availability of the procedure. Your clinician will assist you in making your decision.
Rhizotomy - There are several types of rhizotomies, but they are all performed using a long needle in the operating room under anesthesia. All of the customary monitoring of vital signs are performed during the procedure. Each is intended to be an outpatient procedure, with patients spending two-to-three hours in the recovery room. Most patients are candidates for the procedure. We have successfully treated patients up to and including those of 100 years of age.
Glyerin/Glycerol Rhizotomy - This procedure is done under general anesthesia, with a long needle being placed into the cheek just adjacent to the mouth on the side where the pain occurs. The needle is advanced under x-ray guidance to the level of the foramen ovale (a small hole at the base of the skull just behind the eye). The ganglion of the trigeminal nerve is located just behind this foramen. Once the needle is in place, 0.4 cc. of this clear, colorless chemical is injected into the ganglion of the nerve with the patient in an upright position. The chemical will destroy nerve fibers and particularly the pain fibers over the course of 45-60 minutes. The procedure takes only a few minutes. The patient is wheeled out into the recovery in an upright position to ensure the chemical does not drain away from the nerve prematurely. Most patients go home within two-to-three hours with marked resolution of their pain. They may have some swelling or bruising. Appropriate pain medications are prescribed and the patients are gradually weaned off their seizure medications. Patients can expect to return to work on the first or second post-operative day, depending on their anesthesia tolerance. The risks of the procedure include bleeding, infection, nausea/vomiting, a small chance of sensory change (feeling of numbness), anesthetic complications or recurrent pain (when the nerve grows back – usually within one-to-six years). If pain recurs, the procedure can be repeated.
Radiofrequency Rhizotomy - This procedure is also performed under anesthesia. Instead of using a chemical, a special needle is used with an electrical current and parts of the nerve are burned. The outcome for pain relief is very good, but this procedure has a higher likelihood of causing sensory change (feelings of numbness in the face). It is often used for patients who do not get complete relief from glyercin or those who have recurrent pain and may need assistance to get through scar tissue. It is also performed as an outpatient procedure and most patients go home in two-to-three hours. Discharge instructions are the same as for other rhizotomies and return to work is usually the first or second post-op day. As with glycerin rhizotomy, the pain can return when the nerve regrows. The procedure can be repeated for recurrent pain.
Microvascular Decompression - This is the most permanent and curative procedure that exists today for treatment of trigeminal neuralgia. It is usually offered to patients who are in reasonably good health and are not too advanced in age (70 years is a usual cut-off age). This is invasive brain surgery, and takes about four hours in the operating room under general anesthesia. Patients can expect an overnight intensive care stay and a total of three-to-five days in the hospital.
The microvascular decompression procedure involves an incision behind the ear (About five inches long from top to bottom), made behind the hairline so it will not show when the hair grows back. The scalp is divided and a fifty-cent piece size of skull will be removed. Using an operating room microscope, the surgeon goes down to the level of the brainstem and identifies the nerve and the blood vessels that run concurrently with the nerve. The purpose of the surgery is to remove or pad the vessels so they cannot compress or irritate the nerve. The patient is taken to the intensive care unit after surgery, where they stay overnight. They are then transferred to a regular neurosurgical floor and begin to increase their activity and diet. Most patients experience a pressure-like headache across their forehead and incisional pain. Most feel the trigeminal neuralgia is gone, however. It is normal for patients to feel fatigued and need a lot of rest. Our team recommends a month of recuperation at home, and restricted driving for that duration. The risks of this surgery include bleeding, infection, numbness or weakness of the face or eye, other cranial nerve dysfunction including hearing loss, seizures, paralysis, coma and death. It is very important to select a surgeon who is very familiar with this procedure and does a high volume of them. It should also be noted that although this is the most permanent, curative procedure, there can be about a 20 percent recurrence in pain, probably due to the regrowth of a blood vessel.
Recurrent Pain - It has been our experience that if pain recurs, most patients still have the same choices that they had the first time. Most patients can choose to repeat their procedure, or try any of the other procedures that are available within the usual limitations.