If you’re living with trigeminal neuralgia, you are already aware of the devastating symptoms it can bring with it. Numerous treatment options now make it possible to live a pain-free life.
What Is Trigeminal Neuralgia?
Trigeminal neuralgia — also known as tic douloureux — is a neurological condition that affects your trigeminal nerve. This is the fifth cranial nerve and is responsible for much of the sensation you feel in your cheeks, jaw, upper lip and upper teeth. When you are suffering from trigeminal neuralgia, the nerve is essentially misfiring, sending jolts of pain into your face. These sensations have often been likened to the pain that accompanies an intense electric shock.
Because of this nerve’s location, trigeminal neuralgia is often misdiagnosed as dental pain. It’s sometimes only discovered when dental interventions have failed to relieve the symptoms.
There are two common causes of trigeminal neuralgia. The first is a loss of or damage to the myelin — the outer coating of the nerve. The second is caused by compression from an adjacent blood vessel such as a vein or artery. In either case, the range of symptoms reported is the same.
In the vast majority of trigeminal neuralgia cases, only one side of the face is affected. In more rare instances it occurs on both sides of the face.
Trigeminal neuralgia is classified into one two categories — Type 1 and Type 2. These are differentiated by the associated symptoms.
Symptoms of Trigeminal Neuralgia
There are distinct symptoms that occur between Type 1 and Type 2 trigeminal neuralgia, making it easier to categorize your particular case. Both types are very uncomfortable and can affect your daily life.
Type 1 Trigeminal Neuralgia
This form of trigeminal neuralgia is characterized by intervals of intense, shock-like pain in one side of your face (or, in very rare instances, both sides). These episodes are intermittent and may occur as infrequently as days apart, or they can happen several times a day. You may experience some or all of the following symptoms if you have trigeminal neuralgia Type 1:
- Intense, painful bouts on one side of your face
- Intermittent electric shock-like pain in your upper and lower jaw, lips, nose, eyes, forehead and scalp
- Pain that lasts anywhere from seconds to several minutes
- A numb or tingling sensation or ache shortly before an episode begins
- Pain that is triggered by common daily activities or stimuli, such as brushing your teeth or hair, loud noises, or even just brushing against one of the affected areas
Type 2 Trigeminal Neuralgia
Type 2 trigeminal neuralgia is a little less common. In addition to the intense, short bouts of sharp pain like that of Type 1, patients experience a more constant form of pain and discomfort.
- A constant burning or aching, sometimes accompanied by a stabbing and/or shock-like pain
- The pain and discomfort can be felt in the eyes, forehead, scalp, nose, lips, and upper and lower jaw
- Much like Type 1, this form of trigeminal neuralgia can be triggered by sounds, touch or other normal activities
- Occasionally, Type 1 symptoms with short, intermittent bouts will become less intense but be replaced by a constant burning or aching pain
Diagnosing Trigeminal Neuralgia
The diagnosis of trigeminal neuralgia is a multi-stage process, made by an expert. First, your doctor will take a medical history. Be sure to mention any physical trauma you may have experienced in the past — particularly to your head or neck. Describe the pain the best you can and be sure to pinpoint the areas where it occurs.
You will be given a physical exam that will include a neurological exam. This can help determine whether or not your trigeminal neuralgia is being caused by nerve compression.
If trigeminal neuralgia is suspected you may be referred for imaging such an MRI of your head and upper neck. This will allow your doctor to help rule out a tumor or multiple sclerosis as a potential cause of your trigeminal neuralgia.
Blood work may also be sent out or rule out other potential causes.
Treatment Options for Trigeminal Neuralgia Types 1 & 2
Although there is no current cure for trigeminal neuralgia, advances in neurological medicine have made it possible for sufferers to find relief. The following treatments are used for both Type 1 and Type 2 trigeminal neuralgia.
Medication
A conservative approach is almost always used when your doctor begins your treatment for trigeminal neuralgia. The anticonvulsant drugs Tegretol and Trileptal have been found to be the most effective in treating the symptoms of trigeminal neuralgia. Some people find excellent long-term relief with these drugs. In many cases, however, the drugs may work for a short period of time, but the dose must continually be increased until it has reached the maximum safe levels.
In other instances, some people have unbearable side effects, such as a feeling of overwhelming fogginess or almost a drunken sensation. Other side effects can include nausea, headaches, dizziness or even skin rashes. At this point, if the drugs are no longer providing relief or are causing too many unwanted side effects, you will need to seek a different treatment method.
Microvascular Decompression
Microvascular decompression (also known as MVD) is a surgical procedure that is performed under general anesthesia. This procedure is the first option that is considered when dealing with cases of trigeminal neuralgia, following the use of medication. Microvascular decompression is effective in cases where your trigeminal neuralgia is being caused by compression of your trigeminal nerve by a blood vessel.
Candidates for microvascular decompression must be in good health. The cause of your trigeminal neuralgia can be determined using a special imaging test known as a FIESTA MRI. This non-invasive technique allows your surgeon to view the blood vessels and nerve structures. If it is revealed that your trigeminal neuralgia is stemming from nerve compression, you are likely a good candidate for MVD.
To perform this surgery, you will be put under general anesthesia. Your surgeon will then make a small incision at the base of your skull. A segment of bone about the size of a quarter is removed to provide access to your trigeminal nerve and the offending artery or vein. Using a specialized surgical microscope and instruments, your trigeminal nerve and blood vessel are located. The artery or vein is then very carefully lifted away, allowing your surgeon to place a tiny Teflon sponge between the two structures. This sponge provides a cushion and prevents the blood supply from pulsing against the nerve and causing irritation. Once your surgeon has completed the procedure, your skull will be closed, and sutures or staples placed in the incision.
Following surgery, you can expect to stay in the hospital for 1-2 days. During this time you’ll be observed, and your post-operative pain medications for surgical site pain adjusted. You may notice relief from your trigeminal neuralgia symptoms right away. When you’re ready to go home, you will need to have someone drive you.
Once home, you’ll need to take it easy. You may notice that you’re more tired than usual and may experience mild headaches. This is normal, as your body is in the midst of the healing process. Be sure to rest as much as is needed. You will likely be restricted from strenuous activities and lifting heavy objects to allow your surgical site to heal. Mild exercise, such as short walks throughout the day, will help oxygenate your blood and keep your circulation flowing properly.
You’ll return to your doctor’s office for a follow-up within a couple of weeks. At this time you can expect to be released to return to most of your normal activities. If you work in a high-impact occupation, you may need to wait a while longer until you have fully healed.
There are a few common side effects you may experience with MVD surgery. These include:
- Pain
- Nausea
- Weakness
- Fatigue
They should resolve as you begin to heal, but if you experience any of the above, be sure to let your doctor know as soon as they occur.
Risks that can be associated with microvascular decompression include standard anesthetic risks. Another rare but possible risk is a cerebrospinal fluid leak.
The overall benefits of microvascular decompression far outweigh the risks. The benefits to having MVD:
- Rapid relief of symptoms
- Long-lasting relief
- A low risk of recurrence
- Low risk of other symptoms
- No damage to the trigeminal nerve, allowing for full sensation to be maintained
Success rates for MVD are estimated to be around 90 percent for long-term relief.
Gamma Knife Radiosurgery
Despite the name, Gamma Knife Radiosurgery (GKRS) is a completely non-invasive procedure used for trigeminal neuralgia. If you cannot withstand an anesthetic procedure or your trigeminal neuralgia is due to damage and not compression, Gamma Knife Radiosurgery may be the perfect option for you. This procedure is excellent for those that have trigeminal neuralgia due to an injury or degenerative disease that has compromised the myelin nerve sheath.
Gamma Knife Radiosurgery uses around 200 hyper-focused, tiny beams of radiation that can be pinpointed on any area within the skull. Although each ray is fairly weak, when they all reach their destination point, their combined strength delivers a therapeutic dose of radiation. In the case of trigeminal neuralgia, the intention is to cause mild damage to the nerve and eventually block the errant nerve impulses.
Preparing for your Gamma Knife procedure is fairly simple. Be sure you wear comfortable clothes for the day of your procedure.
- First, you will be placed in a device known as a head frame. This frame is used to position and immobilize your head during the procedure. Four pins are used to gently secure the frame in place. A local anesthetic will be administered at each pin location to maximize your comfort.
- Once the frame is properly in place, you will have a series of MRI images taken. This allows your doctors to determine exactly where on your trigeminal nerve to target.
- You are then guided onto a table, where your head frame will be secured to ensure that no movement occurs during the procedure. Once treatment begins, you may be there for as little as 15 minutes or for more than an hour. Your doctor will be able to advise you on the length of your particular treatment.
- When you are finished, your head frame will be unlocked and removed. You’ll be asked to stay for a while to recover from the procedure. This usually lasts about two hours, and then you’ll be released to go home.
While it may take anywhere from a few weeks to several months to gain full relief from your trigeminal neuralgia symptoms, the overall success rate for GKRS is approximately 70-80 percent.
Some of the benefits of GKRS include the very short recovery period, along with the non-invasive aspect of the procedure. It also typically only requires one treatment to get lasting effects.
Gamma Knife Radiosurgery carries very few side effects. The most common are mild headaches in the days following your procedure and the possibility of some swelling or irritation where the pins were secured on your scalp. You may also feel somewhat fatigued after your procedure — be sure to get plenty of rest to help your body begin the healing process.
Percutaneous Rhizotomy
A minimally invasive procedure, percutaneous rhizotomy does not require general anesthesia. It is a good option for those who aren’t candidates for MVD or don’t have success with Gamma Knife Radiosurgery. Your doctor can discuss the pros and cons of this procedure with you to help you determine if it’s the right choice.
Percutaneous rhizotomy is typically performed at an outpatient center. You will receive IV sedation to ensure your comfort during the first segment of the treatment. Your surgeon will insert a small, specialized electrode in through your cheek and guide it to the beginning of your trigeminal nerve.
Once this is completed, your sedation will be reduced so that you can help your surgeon determine the branch(es) that are affected. This is done through nerve stimulation delivered through the electrode. Once the areas of treatment are pinpointed, you will be sedated once again to ensure your comfort.
Through the electrode, heat will be used to damage or destroy a small portion of your trigeminal nerve to arrest the misfiring impulses that are causing your pain.
Once all areas have been addressed, your sedation will be stopped. You’ll be moved to recovery for observation — here your pain will be assessed and any side effects noted and treated. You’ll be moved to a room if you need to stay until the following day; otherwise, you’ll be released with recovery instructions.
When you get home, you may find you’re a little tired from the day. Rest as needed. You can also apply ice to the insertion point if it’s tender. You should be able to resume your normal activities within a day or two.
The only notable risk or side effect from percutaneous rhizotomy is some facial numbness. If you experience this, there is a good chance it will wear off over time.
Stimulator Placement
If your surgeon feels the prior options are not a good match, stimulator placement may be recommended. This is a minimally invasive procedure that is done on an inpatient basis.
For your stimulator placement you will be taken to an operating room. You can request light sedation. Local anesthetic will be used to numb the insertion points through which the electrodes will be placed. Your surgeon will then guide these tiny electrodes to the points near your trigeminal nerve that are causing your symptoms. Once in place, these electrodes will be connected to an external stimulator. Tiny electrical pulses are emitted by the stimulator to interrupt the painful nerve impulses. After testing the electrodes and stimulator you will be moved to a hospital room.
You will typically need to spend at least one night in the hospital to make sure that your stimulator is working properly. If it’s determined to be effective you will be sent home.
The external stimulator is temporary — once you’ve completed the trial and you and your surgeon have decided it is the proper treatment option for you, a permanent stimulator will be inserted beneath the skin in your abdomen.
Recovery is quick, and you can resume your normal activities immediately. You may notice some slight irritation at the point.