There may ALWAYS be more to it than meets the doc's eyes...KNOW YOUR BODY AND BE YOUR OWN ADVOCATE.....NEVER, NEVER, NEVER GIVE UP IN YOUR SEARCH FOR YOUR GOD-GIVEN RIGHT TO GOOD HEALTH!

I'm a 56 year old woman who has been suffering debilitating pain in the right carotid area, spreading to the entire jawline, facial nerves (in the v3 area of the trigenimal nerve.) At age 44, after a rather damaging accident, I had reconstrucitve surgery on my face including the nose, upper jaw, and lower jaw. Facial bones had to be cut, sawed, then screwed, plated, and sewn back into place. It was close to a one year recovery. However, after approximately 2 months after that massive and painful surgery, I developed pain in my lower right jaw that no amount of meds OR doctors seemed to be able to help.

Unknowing dentists pulled teeth, others scratched their heads, many let me know they believed I was simply an hysterical woman and referred me on (probably to one of their worst enemies!)Yes! I went to all of the right specialists...from the Parker Mahon Facial Pain Center @ Florida State University in Gainsville, to Baylor Hospital in Dallas, to Cedars Sinai Facial Pain Center in Beverly Hills. In between, I sought naturopathic remedies, massage, accupuncture as well as accupressure, an. blue light laser treatments. I even sought out a Cunendero (3rd world country voodoo healer) in Central Mexico. Today I laugh but, as many of you may understand, when dealing with long-term, non-stop, chronic suffering with chronic pain, one can find themselves searching for any answer, medical, naturopathic, or mystical.

Fortunately, Dr. Stephen Graff-Radford, the Director of the Facial Pain Center at Cedars-Sinai gave me a diagnosis of atypical trigeminal neuralgia. Because the prognosis is poor, it has been labeled "the suicide disease" and many choose to end their lives rather than live with the level of pain. At the time I lived in Oklahoma but, in order to follow his treatment plan for me and to be able to take advantage of his expertise in medication trials and cutting-edge procedures, I moved to LA for 8 months. And, while the pain decreased significantly, it never decreased enough for me to be able to return to my profession. To date, I have lost my 15 year career as a graduate level statistics professor, my social life along with many friends who just couldn't reconcile the "but you look fine" with my constant complaints of pain.I am no longer able to scuba dive, snow ski, swim, hike, run, or even walk. The very least of those movements jar my body, causing an exacerbation of the pain in that angle of the jaw.Speaking, smiling, chewing food, kissing my guy (he left due to my medical problems, too!), brushing my teeth, the electrical shocks to my face, the facial muscle spasms, ...all of those are symptoms of trigeminal neuralgia.I've had 5 surgeries over 9 years in 4 states, (one experimental to build a new mandible out of my hip bone to protect the exposed trigeminal nerve.)

Of course, as we doctor hoppers know, doctors like to be correct. I kept insisting that I was (and had for the past 9 years) absolutey positive that I was experiencing multiple problems in that area and that there simply had to be something someone was overlooking. FINALLY, I made the decision to go to Mayo Clinic in Scottsdale, AZ. I purposefully gave them very little information other than the suggested diagnosis and a history of the 5 surgeries to the area. NEVER have I been treated with such dignity and respect. The "it's in your head" attitude is non-existent. To date, I have been going to Mayo Clinic for approximately 8 months while the various specialists put forth their theories about the nature of the underlying cause of my jaw/facial/neck/breast, shoulder pain. After 11 years, another few months is nothing when searching for the right diagnosis and resolution. I have undergone more MRI's, more CAT scans, more bone density tests...to rule out various possibilities.

After many tests by many doctors, the Director of Neurosurgery suggested that, given what little could be seen in the MRI & CAT scan (too many metal plates and screws are in the way), his recommendation was to see another physician there and begin Radiofrequency Alblation (RFA) on the V-3, V-2, and occipital nerves. This would SURELY give me some relief from the Trigenimal Neuralgia. The first RFA helped tremendously on the jaw/artery area. The V-2 and occipital nerve RFA's did nothing. BUT....and PRAISE SOMEONE.....

I had a follow up appointment with Dr. Karl Deleuw at Mayo Clinic who suggested that I might be suffering from Carotidynia, a form of Carotid Artery Disease. He immediately placed me on a dose pak of steroids and, within 8 hours of beginning the med regemine, the pain had decreased from a 9/10 to a 3/10 with even an approximate 2 hours during which I forgot about being a chronic pain patient at all!!While I know I have some permanent nerve damage to the trigeminal nerve from a surgery gone bad, I now firmly believe that, yes! I know my own body! and that, if the Carotidynia can be treated properly, I can manage the trigeminal neuralgia issue. Given that, I MIGHT HAVE A CHANCE AT A NORMAL LIFE AGAIN!!

So, my fellow chronic pain sufferers, keep the faith in your own knowledge of your own body, don't let the doctors discount what you DO know from an experiental perspective, and seek out different specialists if you can afford to do so. Doctor hopping is sometimes the only way to get to the answers. We seem to forget that our good doctors, while the majority of them are well-intentioned and most sincere, have different skill levels as well as different skill sets and it is, untimately, up to us to advocate for our own health. Please, eleven years is simply too long to live in a constant state of severe pain. TRY MAYO CLINIC. I THINK IT IS TO BE MY PHYSICAL, AS WELL AS EMOTIONAL, SALVATION.

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Inflammation of Carotid artery and neck pain - Undiagnosed ...