I have had this blog since 2017 but been mostly MIA over the last four years, as I have dealt with some crippling health problems. You see in May of 2020 I developed an excruciating pain so debilitating I was sure that I was on the brink of death. In a week period I traveled to an ER four times * (3 different hospitals) looking for answers, I found my answer at my ENTs office just days later. . . I have multiple cranial neuropathies/neuralgias. I’ve had multiple brain surgeries, gamma knife, radiofrequency, pain blocks, spinal stimulators, ablations, infusions, medications, etc. Next month I will be flying out of state for another brain surgery with a different doctor. I will be gone for a week, flying out a day early, the next day having preop, MRIs,  and testing with radiology, the next day they will cut a nickel to quarter size hole out of my skull, for the third time.

This surgery is an attempt to help the Glossopharyngeal, Genniculate and Trigeminal neuralgia pains on the left side of my body. They will pad the left glossopharyngeal nerve and vagus nerve. They will pad a portion of the left Genniculate nerve. They will peak at the Trigeminal nerve but likely won’t mess with it since it’s so damaged (I have Anesthesia Dolorosa now), they will replace any Teflon pads misplaced there though since they can migrate. And then they’ll clip the Nervus intermedius which can result in increased dizziness & deafness, and can result in dry eye and loss of taste of the anterior two thirds of  the tongue. Then they’ll replace the titanium for bone cement when covering the hole back up. Problems that can be serious: spinal fluid leak, hematoma, infection, hydrocephalus ……my first surgery like this I had a spinal fluid leak and complications that doubled surgery time & hospital time. Prayerfully this one goes well and is successful. 

My surgery in December this year will be deep brain stimulation (DBS) where they will put two prods into the deep part of my brain then run the leads (wires) under my skin bilaterally (on both sides) from the top of my head, behind my ears, down my neck,down the front of my chest where they meet a battery unit. That unit is like a pacemaker type of device on each side of my chest, placed a couple inches above each breast.It’s there to send signals to the nerves to interrupt the pain signals…this could potentially be a means to an end to get me off all of the meds that I am on for this severe pain. I’m on multiple seizure meds for the nerve pain along with many other kinds. They make me sick, tired, dizzy, confused, depressed and miserable. But if I don’t take them then my pain is unbearable . . . if I DO take them then my pain is a daily “8” on a scale of “1-10”. 

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The Multiple Cranial Neuropathies I Have:

• Genniculate (Nervus Intermedius) Neuralgia (GN) is bilateral (bother ears) a condition characterized by severe, sharp pain in the ear, often triggered by chewing or talking, or laying on my left side and is caused by compression or irritation of the nervus intermedius at the geniculate ganglion.

• TN1 or Trigeminal neuralgia (TN), left sided facial pain typically involves the lower face and jaw, although it affects the area around the nose and above the eye. This intense, stabbing, electric shock-like pain is caused by irritation of the trigeminal nerve, which sends branches to the forehead, cheek and lower jaw. It usually is limited to one side of the face. The pain can be triggered by brushing your teeth, eating, touching the face, applying makeup, shaving, kissing, the wind, among other things. Attacks may begin mild and short, but just progressively worsen. (Mine can be triggered by different things but I now feel lightning shocks up to 30 (+) times a min. every hour of the day, every day, they just vary in intensity. In my case, with the TN1, I DID have an artery laying on my trigeminal nerve, it was laying flat. 

• TN2 or Atypical trigeminal neuralgia (ATN) is a rare, chronic pain disorder that affects the fifth cranial nerve and I have bilaterally (both sides of my face). It’s characterized by constant, diffuse burning or aching pain on one (or both) sides of the face, cheek, eye, or jaw. The pain may also be felt in the teeth or ear. ATN differs from typical trigeminal neuralgia (TN) in that the pain is constant and dull, rather than sharp and paroxysmal and can be idiopathic but is typically secondary to another health condition like MS, lupus, scleroderma or Sjogren’s. In my case, I have Lupus (sle) and Sjogrens syndromes. 

I went to the dentist when I was first suffering after no luck with the emergency rooms and told the dentist the left side of my face hurt terribly in 3 areas (I later learned were called three different branches of the trigeminal nerve) and asked for the doctor to remove several teeth. As I was waiting for the teeth to be removed a dentist came in after 20 minutes and after multiple shots of novocaine the pain didn’t lessen and he said “it’s not a tooth related issue” and he refused to pull my teeth, thankfully, because that would have sucked for me. 

*Trigeminal Neuralgia is regarded as the most painful condition known to man in the             medical community. I’ve had two neurosurgeons, two neurologists, two pcps, one ent, one rheumatologist, and one dentist tell me that. That’s not very reassuring. Additional it’s called “the suicide disease” because there is a history of people committing suicide just to get away from the pain because it’s unbearable to live with. Additionally because of the high prevalence of suicidal ideation amongst patients. And several patients a year who have accidentally overdosed just trying to get away from the pain. It’s no joke. I feel like I’m being burnt alive, electrocuted every day, and being hit by bolts of lightning/electricity throughout the day. It’s miserable.  I wouldn’t wish this upon anyone. *

• Glossopharyngeal neuralgia (GPN)) is bilateral (both sides of my throat) a rare condition that causes sudden episodes of pain in your tongue, throat, tonsils and ear and can happen for no reason but is often triggered when you eat, talk, sneeze, yawn or laugh. Pain can be sharp, shooting, shocking, aching and burning. 

• Occipital Neuralgia (ON) is bilateral (both sides of neck) a condition in which the occipital nerves, the nerves that run through the scalp, are injured or inflamed that causes headaches that feel like severe piercing, throbbing or shock-like pain in the upper neck, back of the head or behind the neck and continuous aching, burning and throbbing, with intermittent shocking or shooting pain that generally starts at the base of the head and goes to the scalp on one or both sides of the head. It hurts so bad to wash my hair or let water touch my head that I cry washing it and it is so painful to brush. I’ve cut multiple feet off my hair in the last five years. Every strand of hair feels like a 10lb dumbbell pulling from my head as it moves. And the back of my hair feels like I’ve had my hair pulled in an extremely tight ponytail every second of the day.

• Sphenopalentine Ganglion Neuralgia (SGPN) is Brain freeze, or ice cream headache, is only on the right side of my face and is an intense pain in the head caused by eating or drinking something cold that most people get at some point in their lives from eating icecream or icees or etc. except I get it every day and if I consume anything cold, cool or room temp. Unless it’s a warm drink I experience it and even without a trigger I experience it. I got chronic SPGN from damage to my SPG ganglion during a nerve block to the SPG ganglion to treat Trigeminal neuralgia.  I have had it every day since 2021.

• Anesthesia Dolorosa (AD) is only on the left side of my face. It means painful numbness, and is a chronic pain condition that causes constant pain in the face along with numbness in the affected area, it’s a constant burning, aching, or gnawing pain that can also feel like pressure, heaviness, tightness, or squeezing. The pain can also feel like a sharp, stinging, shooting, or electrical shock. Some describe it as feeling like a bolt of lightning in the face. I always have creepy crawlies all throughout the day, like I can feel ants stinging my face, and there’s often a worm crawling under my skin all day, and I feel bugs crawling from my ear to my nose constantly. The Numbness feels like a loss of sensation or feeling in the face similar to the numbness from a dental injection. I’m numb on the side of the head and from nose to ear. My left eye is also completely numb and extremely dry now. 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; there is no cure.Though I still get TN shocks from touching my face, kissing, the wind, makeup, etc. And I developed this from damage from the Gamma Knife Radiation to treat the Trigeminal neuralgia.

• Erythromyelagia – Bilaterally (Both sides of face, particularly ears and cheeks but do get on hands and feet sporadically) I have this everyday, as one attack settles a new attack begins. Erythromelalgia is a rare condition characterized by episodic erythema, swelling, warmth, and burning, which can become persistent over time. Although it primarily occurs on the extremities, it may also manifest on the ears and face. Heat exposure triggers episodes, and cooling can alleviate symptoms.It’s called “Burning Man Syndrome” and I feel like I’m on fire all day every and keep icepacks on my face 24/7 to cool the fire in the my face . . . which also triggers the neuraglia/neuropathy pains so it hurts like heck. Dang if you do, dang if you don’t. 

Multiplie Cranial Neuralgias (neuropathies) can be caused by multiple things, mine were caused by demyelination of the myelin sheath from Lupus and Sjogren’s Syndrome so they will continue to progressively get worse, which is why DBS surgery is so important in December. Currently doctors are in a clinical trial for something that can hit all target areas like suggested in mine, which is why I have to wait so long to have the procedure done. 

Meds

Some people keep asking why can’t we find meds that can’t just make the pain better …. That’s not how it works, this is the most extreme nerve pain in the most painful areas. You can try to think about something differently than the pain or distract yourself if it is nerve pain in the hands, legs, feet, etc but there’s no way to think of anything more than nerve pain in your head because it’s all you can feel, you literally can’t get out of your head away from the pain to think of anything different. 

Things have been miserable the last four years . . . I went from a girl who worked out in the gym 5-8x a day and had a full time and part time job. Over the last four years I have gained a lot of of weight due to my inability to function. Essentially I lost both of my jobs and I am sedentary, in the bed at least 20 hours a day. Just walking the 15 feet to the bathroom hurts so bad, as my blood pumps harder the pain increases more. Embarrassingly enough, I can barely brush my teeth. I haven’t been to the dentist in two years. I tried to get SSI and eventually won a “Fully Favorable Decision”. HOWEVER they won’t give me payments for SSI . . . they counted two vehicles in my household that aren’t even in my name AND one that doesn’t even run with 350,000 miles on it, as income. INCOME! The system is broken!

After so much insisting from close friends and prayerful consideration, I am here asking for help. If you can’t help financially that’s completely understandable, but prayers are most welcome and appreciated more than I can express!

I am flying across the country to have my third surgery . . . I have expenses. Plane tickets, round trip, for me and a trusted adult because I am too confused to fly alone. Hotel stay for a week for my companion, where she will stay even when I’m in the hospital. Food for the week. A vehicles for the week for her to drive. My ketamine treatments are $150/each. Surgery will cost I have no idea how much. That’s just this go around . . . December will be a whole new story, it’s a bigger deal to have that surgery and will be much more expensive.

If you would like to donate and help financially, here is my CashApp & Venmo, additionally I have an Amazon Wish List that I will update regularly to reflect changes in needs for some items that are beneficial as I work my way through this season of ‘suck’. Treatment is hard . . . days are filled with medications . . . I take 12-13 pills every 6-8 hours, rinse, repeat. I wear a patch weekly that is 40x stronger than morphine. I get ketamine treatments to help temporarily ‘detach’ me from the pain. I’ve had extreme steroid treatments. Done immunosuppressants and chemotheraputic drugs. I see a therapist and psychiatrist of interventional pain therapy for suicidal ideation. It’s hard to not think “Everyone would be better without my burden if I weren’t here” and “Death is more desirable than this”.

Above is my link to Amazon. I go through pillows, sheets, and icepacks multiple times a year because I am in bed over 20 hr a day and my pillows aren’t just under my head but the rest of my body b/c I have to protect pressure points so I don’t get sores on my body. The ice packs are placed behind my neck, upper back, back of my head and both sides of my face. It’s a rock and a hard place. They light up my face with electrical shocks BUT my face is absolute fire without them. A dr prescribed some medication but it didn’t help. Certain meds on the cheeks causes absolute fire and raw skin. As soon as they’re put into the fridge new ones are taken out. Eventually they get nasty, they, break, they leak jelly stuff all over the bed. It’s awful. I live with a neck pillow behind my upper back/neck. And because I am always under icepacks I FREEZE so I have blankets and an old heating pad lying between my legs trying to warm me up. Some of the items on the list have helped me and others I haven’t tried. I live in a state of desperation, searching for anything that might help.

I am isolated and alone . . . alone in a world of people of who love me and want to help. To them I say, pray, please. Because I’m on my knees begging for mercy. I have found peace, joy, and comfort in the Lord. Learning to “Be Still”, to trust, and to believe that God is who He says He IS and that the only thing He is incapable of is changing who He says He is. . . so I know He IS good, He WILL always be there for me, He WILL always love me, HE DOES have a good plan for my plan, that He promises a day of no more tears or pain and He WILL see it to pass. I love my God and believe that Jesus IS King; I need not worry. I believe that even if I do not find healing in this lifetime, eternity has yet to come and I AM promised to be with my Father then and He WILL heal me at that time. And friends, I believe that you can love Jesus and believe God’s word and STILL need therapy, STILL be depressed, and STILL hurt. We live in a broken world.

I wrote this book, A Place for Hope, over the journey I’ve walked . . . err, crawled . . . and thought I would share here. I just hope to share my faith with others and a little bit of my story. I will update this when I can to reflect more recent medical treatment and further time spent on my journey. I was asked why I don’t charge for it; at the moment there’s no reason. I want others suffering to know the same hope that I’ve found in Christ Jesus. Maybe someday when I update the book I will charge a few dollars, it would certainly help my situation. But, For ChristI!