Raising Awareness for Trigeminal Neuralgia

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My name is Michele. I was diagnosed with Trigeminal Neuralgia Anesthesia Dolorosa after I had brain surgery to remove a brain tumor. During surgery, something went seriously wrong and now I'm left with a condition that is rare and has no cure. I have not had a pain-free day ever since and can no longer feel the left side of my face including my teeth, tongue, and eye. I also lost hearing in my left ear but, at the same time, have severe tinnitus in that ear. It's hard to explain to people that I can't feel the left side of my face, yet, it's constantly in pain. But, that is what TNAD is. I had no idea something like this even existed--that a condition like this is possible. Yet here I am... so it is possible and it happened to me. My neurosurgeons referred me to another neurosurgeon who specializes in deep brain stimulation and neuro-stimulation. One requires being awake during another brain surgery and the other requires wires running underneath the skin of my face connected to a pacemaker. I have not moved forward with either one of these as they are not a cure and there's no guarantee they'll work. Plus, they cannot guarantee something won't go wrong -- as did in my original brain surgery. I've been so traumatized by all of this it's hard to put into words. I'm angry, sad, depressed, exhausted... Some days when the pain is tolerable, I feel like I've won the lottery. 

 

For those of you unfamiliar with this condition, which probably means most of you, this is what it's like to have TN1, TN2, plus Anesthesia Dolorosa.

 

Trigeminal Neuralgia

Trigeminal neuralgia (TN), also known as tic douloureux and the “suicide disease," is sometimes described as the most excruciating pain known to humanity. Trigeminal Neuralgia is a form of neuropathic pain (pain associated with nerve injury or nerve lesion.) The typical or "classic" form of the disorder (called "Type 1" or TN1) causes extreme, sporadic, sudden burning or shock-like facial pain that lasts anywhere from a few seconds to as long as days per episode. The “atypical” form of the disorder (called "Type 2" or TN2), is characterized by constant aching, burning, stabbing pain. The teeth are affected in both 1 and 2 and often feel like they are being electrocuted or breaking. The muscles on the affected side waiver from being torn off of the face to severe constriction. When the area around the eye is in pain, it often feels like the patient cannot open the eye or the eye itself feels like it is being pushed out of the socket.

 

Both forms of pain may occur in the same person, sometimes at the same time. The intensity of pain can be physically and mentally incapacitating. The trigeminal nerve is one of 12 pairs of nerves that are attached to the brain. The nerve has three branches that conduct sensations from the upper, middle, and lower portions of the face, as well as the oral cavity, to the brain. The ophthalmic, or upper, branch supplies sensation to most of the scalp, forehead, and front of the head. The maxillary, or middle, branch stimulates the cheek, upper jaw, top lip, teeth and gums, and to the side of the nose. The mandibular, or lower, branch supplies nerves to the lower jaw, teeth, gums, and bottom lip. More than one nerve branch can be affected by the disorder. Rarely, both sides of the face may be affected at different times in an individual, or even more rarely at the same time (called bilateral TN).

 

What are the symptoms of trigeminal neuralgia?

 

Pain varies, depending on the type of Trigeminal Neuralgia, and may range from sudden, severe, and stabbing to a more constant, aching, burning sensation. The intense flashes of pain can be triggered by vibration or contact with the cheek (such as when shaving, washing the face, or applying makeup), brushing teeth, eating, drinking, talking, or being exposed to the wind. The pain may affect a small area of the face or may spread. Bouts of pain rarely occur at night, when the affected individual is sleeping.

 

Trigeminal Neuralgia is typified by attacks that stop for a period of time and then return, but the condition can be progressive. The attacks often worsen over time, with fewer and shorter pain-free periods before they recur. Eventually, the pain-free intervals disappear and medication to control the pain becomes less effective. The disorder can be, and most often is, debilitating. Due to the intensity of the pain, some individuals may avoid daily activities or social contact because they fear an impending attack.

 

Anesthesia Dolorosa

Anesthesia Dolorosa (AD) is a feeling of pain in an area of the face that is completely numb to the touch. “Anesthesia Dolorosa” literally means “painful numbness”. Numbness describes a loss of sensation or feeling in a part of your body, but it is often accompanied by or combined with other changes in sensation. AD causes pain in one or more areas of the face which are completely numb to touch. The pain is described as constant, burning, aching, squeezing, heaviness, tightness, pressure, or likened to pins and needles. The primary pain is usually continuous or near-continuous. You may also experience brief bursts of pain, but these are not typically the predominant pain type. Diagnosis is generally based on the description of symptoms.

 

AD occurs when the trigeminal nerve is damaged so that the sense of touch is diminished or eliminated while a malfunctioning sensation of pain is left intact. AD is caused by nerve damage, either from an underlying condition, traumatic injury, or past treatment of the trigeminal nerves. AD is referred to as a deafferentation pain syndrome, meaning that it results from complete or partial interruption of nerve impulses.

 

AD pain is usually constant with a burning or jabbing quality, while trigeminal neuralgia (TN) is intermittent, with sharp, electric-like jabs. The distinction between the two can affect the course of treatment. Further destructive procedures for an AD patient may make the condition worse.

 

Imagine having AD, TN1 and TN2? I do. I've also been recently diagnosed with another brain tumor.

 

If Words Aren't Enough

If words aren't enough, these drawings accurately depict what it's like to live with this condition.

 

 

A recent Instagram Live. My friend Jason was gracious enough to host this LIVE to help me raise awareness.

 

 

This is why I'm trying to raise awareness for the Trigeminal Neuralgia community with my custom Trigeminal Neuralgia Awareness box. 

Get your own Trigeminal Neuralgia Awareness box by donating $35 (includes contents plus continental U.S. shipping)

If you would like more information, you can visit my website and follow me on Instagram.

***Please send me a note if you are donating towards the cause, or donating $35 for a Trigeminal Neuralgia Awareness Box.***

***UPS continues to raise their shipping fees due to the increase in gas prices, so I had to raise the donation per box to $35***