- CASE FILE
In 2008, I was struck with severe right sided facial pain, behind my cheekbone. Includes my cheek, ear, temple, upper and lower jaw
ABOUT THIS CASE FILE
I suffer severe constant pain to right cheek, ear, and temple, traveling down my neck. In 2008 sudden severe pain behind my right cheek including deep ear ,right orbit, and temple. My face was drawn as if I had a stroke. Stroke and bells palsy were ruled out and was diagnosed with either "trigeminal neuralgia or TMJ". saw a dentist who sent me to a oral surgeon who stated, need bilateral TMJ surgery, due to my jaws being "mush". while in recovery the physician told my husband surgery was necessary but my pain was nerve related. was sent to a neurologist who sent me to a neurosurgeon who told me he couldn't help me.
Fast forward, pain has not receded with medications or numerous procedures, and was sent to a pain clinic where I was placed on so many meds that while at work about 30 minutes after taking my medications I passed out. I was worried this would happen again possibly while driving so I titrated myself off all medications. After numerous trips to the ER with uncontrolled pain my primary doctor placed me back on initial meds of Neurontin, narco 5mg,. While all this is going on my pain had not supsided but was afraid of seeking more help due to the passing out spell, I had given up and spent my days in serious pain. By chance I met this doctor through a friend and on hearing my diagnosis of TN, he wanted to help me. He sent me for a thinner sliced MRI. At my follow up appointment he informed me nothing was found, so he and I decided to try radiation therapy. This was a volunter trial so as I finished speaking with the radiologist my dr. ran in and told me not to leave. When he came back to speak with me he showed me where a vein was snaked around the trigeminal nerve, so success after 8 plus years of miserable uncontrolled pain. i was sent to the best neurosurgeon in Alabama, the same one who had told me 5 years earlier that he could not help me. I really wasn't sure, but he came sat down beside me and held my hands and apologized. surgery set for December 10, 2018. Microvascular decompression, the most horrible surgery I've ever had. This was successful for the pain in my temple, but other pain remained and this last 6 months the pain has come back.
Now trying the sphenopalatine ganglion block.The first was 100 percent successful for 3 days, it was amazing.. The second, not amazing at all, but helped for about 3 weeks, and the nerve was never numbed. I don't understand why.
I have tried numerous antiseizure, anti depressants muscle relaxer, injections in my jaw from the inside, and outside under the cheekbone. I've also tried red laser therapy, accupuncture, physical therapy, blocks, and only the SPG block gave me relief although for a very short time. Which leads me to believe it's the trigeminal nerve, so why didn't the brain surgery work, why didn't the SPG block work longer,why the second didn't work.
Before this I was very actve RN working 12-14 hour shifts, raising children working out in my yard,I love to grow flowers and vegetables. I also used to create, I used to design my clothes, crochet, hanging out with family and friends Had friends and family over or my husband and I were always out and about. No one calls me anymore due to being in pain all the time, we rarely go anywhere because I never know when it will hit.I've quit my volunteer work at our local museum, I can't volunteer at church, or teach the children's class, I am no longer reliable. I was also a on-line sales person for Younique make-up, that's about impossible with the pain in my face. As you can see my career and life have been totally affected All aspects, My husband of 31 years, come September, has had to deal with me and my life changing ordeal. I miss me, and am so awfully tired of this pain. never dealt with depression, never imagined I would. I was born to a family of 6 children. My father was in the air force, and we moved around a lot, I was always the new kid, and being taller than all the boys made me a little awkward, but no depression. My husband and I love to be outside kayaking, camping, cooking out. My husband is a chef and we love to be around family and friends.
My pain in my cheek and ear are constant with intermittant pain in the skin which exaserrbates when I chew, drink something cold, or even if my hair touches my face. I had to cut off 12 inches of my hair due to the pain of wearing it up or back. Glasses are painful so I wear my contacts way to much. I love hats, can't wear those anymore.My teeth hurt and gets worse when they touch, it feels as if my teeth will break. The muscles in my mouth on the right side never stop, it feels as if I'm clinching my teeth. I chew on my cheek horribly when it's a very painful day, so I try to keep something to chew on, it's painful but necessary ,because my cheeks are a mess and the last 3 days have been absolutely terrible.
The antiseizure and antidepressants cause major depression, and did not give enough relief to tolerate. Actually I couldn't tolerate them. After the brain surgery all my medications were started from scratch, I am now on Neurontin 600mg TID,increased last week from 400 mg. also I take, Narco 7.5 that do not touch the pain when it gets bad, like today,actually this episode started in church Sunday morning because I was hot and used my hand fan. I'm getting very discouraged, why can I not do the SPG block myself, some patients use this for migraines. I've seen sooo many doctor's and don't know what to do or where to go.
If you can help me in any way please, I beg you and I pray that God sends me the doctor who can give this girl some relief. I graduated nursing school in 1994 and thought I'd be retiring, I can no longer do the things I love, things that brought me joy. I miss joy in my life,my ear and cheek hurt, it took me 3 days to do this. Very hard to concentrate when in pain.
thank you and may God bless you for what you are all doing.