pain in the…face: part five

I am a happy, positive person for the most part. I don’t worry about things I can’t control. It would be nice not to have experienced the effects of two major illnesses, especially the herpes zoster. I live with many more after effects from that disease than I do Wegener’s granulomatosis, which, ironically, is the more serious (potentially fatal) disease of the two. But live with those after effects I do.

The charge doctor at the regional hospital where I had initial treatment for shingles told me, “You’ll wear a beard after this,” in reference to the scars. I mumbled some obscenity under my breath at his blunt comment, which he delivered with a smirk. He was right, though it isn’t to hide scars so much as to distract others so they don’t bring up the reality I live with 24/7, something I am aware of without outside reminders!

It is possible to forget about the pain and scars if I involve myself in my videos or blogs, or when I am with friends or family. I sleep well, even without pain medication, though there are rare times a few aspirin help. A little baby oil on the scar helps loosen it up a bit, too. That helps reduce the discomfort, that perpetual tightness on the right side of my face.

The scarring impairs tear formation in the right eye, so I occasionally have pain associated with dryness. When I cry, only the left eye overflows. If I cut onions, the right eye can’t wash away the sting by itself. I have to manually flush it until the pain goes away. An itch forms in the corner of that eye that can be so severe I go nuts trying to stop it! It’s hard to scratch an eyeball itch, though the old standby of splashing cold water on the eye works best to break the pain signal to my brain.

Do you remember that old joke about the missing dog with one eye, three legs, no tail, and goes by the name of Lucky? Some days I feel like Lucky, but the mood quickly shifts when I see my little guys, Andy and Dougy, or I find a comment on one of my videos or blogs. Faith and a good attitude are major helps, too!

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I didn’t wake up this morning with the idea that I’d write about this personal issue. The pain this morning was a bit more severe than usual, and I needed to work through it, however I could. I feel better now! My fingers are a little sore from typing is all.

Since I probably am an expert of some order on the topic, I can share my experience with you. Talk with your doctor about the shingles shot. I don’t think they recommend it yet for people under 60. There’s a one in three chance you will get it. The pain is excruciating. You don’t want to experience it, believe me! Most people don’t have permanent damage as severe as I have. If you have an outbreak on your face, there is high risk to life itself. If it follows your optic nerve back to your brain, you better have your affairs in order! Here’s one site you can learn more about shingles:

http://www.cdc.gov/shingles/index.html

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pain in the…face: part four

I understood that the postherpetic neuralgia (source of the “pain in the face”) ended after a time, but that the longer from onset of herpes zoster till treatment began, the more nerve damage there was. The more nerve damage there was, the longer the healing time. Oh, yeah. And some people never got over the pain. I predicted I was one of the latter! I mean, I tend to attract the worst, the least common, the most unusual manifestations of what can go wrong with the human body!

By August of 2007, the continuing pain affected my ability to work. I left work early on some days because of pain attacks, and the frequency alarmed me, although it all fell within my allowed sick time. I had a total of five weeks vacation a year plus holidays by that stage of my work life, and often I used vacation time for sick days because the pain pretty well killed any possibility of long trips. I decided to see a pain specialist, a physiatrist.

The doctor had me lie down on an examination table and bring my knees up. The examination involved a mini-cattle prod (similar principle, lower level of electrical shock), needles stuck into nerves, and little jolts of electricity.

I joked with the doctor about how I hoped I wasn’t about to become a galvanic experiment where she’d trigger a nerve to make my legs dance or something rude and embarrassing. She laughed, and the testing was surprisingly mild and easy. She’d stick a needle in, trigger the nerve, and her laptop recorded the results. She did this on both sides of my face to establish the degree of damage to the right side nerves.

She prescribed Gabapentin, which evened out the pain to a dull roar. She also prescribed Cymbalta for nighttime use. Between them, I had control of the pain at last!

Control, at least, until I retired early (see “who I am” for details) and ran out of health insurance and prescription refills. Then it was back to pain, if not so severe. I mean, the last time I screamed out in pain and threatened to join the Evil One’s minions or God’s Warriors, depending on which gave me pain relief first, was 2007! (I was serious then, however, and suffered a brief lapse in faith. To Hell with the devil, too. He also failed me! Ha!)

The shingles left me completely deaf in my right ear because of scarring of the ear drum. I have a lovely scar from my ear to my eye brow, and another from the corner of my right eye down to my lip. There is another scar from my right ear to my lower lip, which pulls the center of the lip to the right to where the corner of my mouth used to be. It’s all very complex…and painful, the worst part of the pain in my face. The scar is tight, which exacerbates the pain.

The scars from herpes zoster don't bother me, but the pain is wearing.

The scars from herpes zoster don’t bother me, but the pain is wearing.

The tragus on my right ear was wasted away by the ear infection as well, though there seems to be no specific benefit to having one other aesthetics.

pain in the…face: part three

The rule of thumb is the faster you seek treatment for herpes zoster, the sooner the damaged nerves heal, and the sooner the pain subsides. I didn’t know what the mess on the right side of my face was, but thought it was a drug reaction to an antibiotic my dentist gave me after root canal surgery. This story has no happy moments! Sorry. Root canal. At least it’s something normal people have done, not one of these one in a million or 39 examples in 150 years of records (or whatever it was) deals!

The chain of events is a blur. All I know is I made an appointment to see my doctor, the veteran MD who’d never seen a worse case of herpes zoster in all his years practicing medicine. It was a week or more after onset before I saw my doctor, plenty of time for the disease process to really foul up my facial nerves! He sent me to a regional hospital immediately because the disease threatened both my hearing on the right side and my right eye.

Sorry for the aside. Back to where I scream and call on Satan or God to end my pain and gain a follower. You know, the goat sacrifice.

I took prescription painkillers (the narcotic painkiller oxycodone) for a short time after I was diagnosed. Strong stuff. The stuff druggies pay hundreds of dollars to procure for their habits. I belong to a different tribe: The sooner I can stop taking painkillers, the better. I just don’t like the idea of addiction, no matter how miserable I am.

Once I stopped the painkillers, I had mostly good times, with occasional sharp pains in the corner of my right eye that cut their way down to the bottom corner of my nose. It’s difficult to explain herpes zoster pain. A burning itch with knives stabbing a hundred times a second? Severe, at any rate, drop you to your knees strong. I couldn’t drive across town for fear a pain attack might happen. If it did, all I could do was stop the car, scream as loud as I could till the pain subsided, then struggle to get home.

If the pain happened at home, I either heated a wet towel to boiling hot and wrapped my head in it or splashed icy water on my face. I guess either way interrupted the pain signals transmitted from my face to my brain. These methods worked at any rate, though sometimes I had to try both to get relief.

By “occasional”, I mean at least once a day, sometimes as many as four pain attacks in the early days. I discovered if I touched a certain spot on my back or another on my head, I could trigger a pain attack. Gad! You know I fought touching those spots! I couldn’t believe they existed, so…! Instant icy water or steaming towel time, every time I yielded to the temptation!

pain in the…face: part two

When the first tooth fell out, I contacted my dentist. By the time I saw him five or six teeth joined their little brother. I placed them in a Zip-Loc bag in case he needed them. I guess I thought he could use them in a prosthesis or something. Pain does odd things to how one thinks and reacts. He took the teeth. (He’s a nice guy, and probably didn’t want to tell me there was no point to this exchange.)

He contacted an orthodontist, who examined my mouth, which now lacked six of the 32 normal tooth count. He researched the odd condition, and noted I was only the 39th known person to experience this condition because of herpes zoster. The records went back to the 19th Century. Yes, once again, I was a case study for a specialist who called in all his interns for a chance to view this human oddity, this 39th human known to suffer a herpes zoster related necrotic mandible that lead to tooth loss!

He arranged for me to see an oral surgeon in Denver. The oral surgeon was not only delighted for a chance to examine me, since he headed the department at a teaching hospital, he arranged for free treatment. All my insurance had to cover was my hospital room and hospital-associated costs. The hospital room overlooked Cherry Creek and had a million dollar view of the Denver skyline and the Rocky Mountains. But enough of that. You want to read what happened that required hospitalization.

The oral surgeon and his interns clipped out the dead portions of my mandible till they reached healthy tissue. It was dead, right? I didn’t feel a thing, though I felt a jolt when the trimmers broke through the dead tissue. They did deaden the area, just in case they hit living tissue, but the process was uneventful except for the series of photos they took of the herpes zoster wounds healing on my face and the details of trimming back the necrotic bone. Ugh!

Once they trimmed back the bone to healthy tissue, the oral surgeon arranged for that hospital room with the million dollar view. The final stage, cleaning up what was left of the necrotic bone, had to be completed under anesthesia. In all, they removed roughly 50%, perhaps a bit more, of the top part of the right side of my mandible.

The facial pain continued. The oral surgeon had me come back once a month for several months to verify the remaining tissue re-established a vascular system, that there was no further necropsy. The healing went uneventfully, except for the pain attacks.

pain in the…face: part 1

I suffered a shingles attack (herpes zoster) in October-November 2007. It left me disabled and scarred, and postherpetic neuralgia still plagues me each and every day.

You know it’s bad when your doctor, a veteran with over 30 years’ experience, states, “This is the worst case of herpes zoster I’ve ever seen.” Yeah, not the second or third worst. Not just your garden variety stuff: The worst. Should I be proud?

The pain is everything you’ve ever heard it is. At one point I called on God or Satan to end my pain. I screamed out a challenge: “I will follow whichever one of you ends this pain!” (Thank God I live by myself!) Neither showed up. Neither sent a representative. I suspect the goat sacrifice wasn’t adequate. Perhaps they were going for a human sacrifice.

After two, three weeks of hospitalization, first to contain the herpes zoster, which affected the right side of my head, down to my shoulder, then to bring me back from an inability to make my mouth and tongue work properly to get nutrition into my body, additional effects popped up. I’d dropped over 30 pounds, for example. When I mentioned that to a nurse, she got a look of envy on her face. “No, you don’t want to lose it this way!” I told her.

I often come down with disease so rare my doctors pull in every specialist and intern they can “to witness this unusual case “. Wegener’s granulomatosis is rare enough I’ve only met one other person with it, and she and her husband came from hundreds of miles away. My pulmonologist noted he had two other patients with it, one of whom died. (“Not from WG,” he said, clearly reading the fear on my face when he mentioned it, off-hand…!)

But this isn’t about WG, this time. It’s about herpes zoster and pain. Herpes zoster and novel effects it can cause, rare moments that bring out specialists and interns alike “to witness this unusual case.” The teeth on the right side of my mandible started loosening and falling out! That part of my jaw, simply, died. Dead because the vascular system died, and the tissue supported by it – teeth, jaw – died, too.