TODAY, October 1oth, IS THE First ANNUAL INTERNATIONAL geniculate NEURALGIA AWARENESS DAY!
Geniculate Neuralgia (GN) is a nerve disorder affecting the geniculate ganglion of 7th and 8th cranial nerves. Relatively little is known about GN making it a very infrequently diagnosed disorder. It is a condition that is rarely diagnosed outside of an existing trigeminal neuralgia (TN) diagnosis. Those who get that far are the fortunate ones. It’s clinical presentation is very similar to that of migraine headaches, a much more common syndrome with which all neurologists have experience.
Raising awareness of this condition is an easy way to have a major impact. GN is virtually unknown, even within the facial pain community. You could very easily share this post on social media today, and reach someone who has GN and had never heard of it before. You could change a life today, and all you have to do is post the link to this post on Facebook.
VIDEO AWARENESS TOOLS
There’s nothing quite like a short YouTube video to help spread knowledge of a condition. Feel free to use this one to educate your friends and family. YouTube videos can be shared online, in emails, and in text messages.
MISDIAGNOSIS: THE IGNORANCE FACTOR
Because it is so rare, very little is known about the incidence and prevalence of GN. Sadly, the fact that it is so uncommon means that most physicians, including neurologists, have never heard of it or treated it. One doesn’t have to look very far in any FaceBook GN support group to find evidence of this sad phenomenon.
Erika’s personal experience:
“My first 10 years of treatment for TN consisted of visits to a half dozen hospitals and headache centers and appointments with the late Dr. Peter Jannetta, the pioneer of MVD for facial pain, and Dr. Ben Carson, the retired John Hopkins MVD neurosurgeon. At every appointment with every physician, I would report that, in addition to my TN symptoms, I had terrible pain deep in my ears and a hypersensitivity to light and sound. Despite searching diligently and availing myself of appointments with people who have unparalleled experience and expertise, I wound up finding the information that led to my geniculate neuralgia diagnosis by myself, and quite by accident.
“Despite having been a TN patient for a decade, in all those years I never even heard the word geniculate. It was by chance one afternoon that I was reading a long comment thread in a Facebook support group for TN and stumbled upon someone describing exactly my symptoms and giving it a name – “geniculate neuralgia.” I contacted the person who wrote the comment and within 48 hours had decided to try surgery again, and to fly across the country to a specialist to do it.
“The impact of my discovery on my life cannot be understated. Finding out that there was a name for what a had and a possible remedy for it literally saved my life. I asked myself, then and now: how many years of untreated pain might I have been spared if I had known what I was suffering from? My story is far from unique. The truth is, this simple blog post could have the same effect on someone else today.”
Beyond being simply frustrating, the widespread ignorance of GN in the medical community has severely damaging implications. When a GN patient is misdiagnosed because their physicians are unfamiliar with GN, that patient is diverted from the path to proper treatment, maybe forever. The results are tragic. Patients are abandoned by doctors who can’t figure out why they aren’t responding to migraine medication “that should work.” They are treated like pill seekers when they continue to search for a remedy to their unrelenting (and untreated) pain. The prognosis is bleak for a misdiagnosed GN patient.
Awareness is the remedy, and you are holding the key. Share this post and others to spread knowledge of GN and other facial pain conditions.
JULIE’S FACIAL PAIN FRIENDLY RECIPES
Broccoli Almond Soup
- 2 leeks or 1 medium onion
- 1 clove garlic
- 2 tbsp butter
- 6 cups chicken broth
- 2 cups almond milk
- 3 heads of broccoli
- Salt and pepper to taste
- 1 cup almond butter (save for blending step)
In a fry pan, saute leeks and garlic in butter for 5 minutes on low-medium heat.
In a med/large pot add chicken broth, almond milk, broccoli, salt, pepper, leek or onion, and garlic. Bring to a boil then turn down to a simmer. Cover and simmer for 20 minutes. Allow to cool to room temp, or close to room temp. Cool faster by setting the pot in cold water, not getting water inside the pot.
Once cooled, blend about 2 cups of soup and about ¼ cup of almond butter in a blender. Pour into a large bowl and set aside. Repeat this step until the soup and almond butter are all blended. Stir the soup in the big bowl to make it all the same consistency. You can add any amount of water you prefer to make it the right consistency for your pain levels.
*Tip for Facial Pain patients: Measure 1 cup of soup into individual ziploc freezer bags, labeled with date and type of soup, and freeze for the bad days. When ready to use, thaw one freezer bag inside a bowl of hot water for 3-5 minutes then reheat over stop top or microwave.
UNTIL NEXT TIME, WARRIORS!
GO FORTH TODAY, AND SHARE GN AWARENESS EVERYWHERE.
TOGETHER, WE WILL BRING FACIAL PAIN OUT OF OBSCURITY AND INTO THE LIGHT!