Ding – A Blog on Bell's Palsy

‘Grateful’ is a word that gets used a lot these days; maybe too much – or maybe not enough. However, grateful is how I feel. Last year, I had a scary, uncertain health issue that lasted most of last year. I’m better now. And, my insurance company – with prodding from a government oversight agency – has been ordered to pay the remaining medical bills.

I haven’t said much for awhile now, and nowhere else on Social Media, in part because of the uncertainty of it all. And, also, I didn’t want to have a public dialogue about my journey. I did this blog for awhile simply to try to keep track of the health part. So, now, if this can help anyone, or encourage folks to fight for your health, and for your rights, well, here’s the recap and conclusion:

About 15 months ago, I got hit with a ‘Severe to Total’ case of Bell’s Palsy. Half my face wouldn’t move. I couldn’t close my eye, raise my eyebrow and my speech was blurred. Though the odds of at least some recovery from BP is stated to be 71%, my doctor flat-out told me that, given the severity of my case, I might not recover at all.

Now, I’m pretty much good as new. And, 463 days after first getting diagnosed, I’m officially off the financial hook for a lot of acupuncture. I’m convinced that that twice-weekly needle-fest helped. My remaining medical bills will be paid by my insurance company like they first promised, but later reneged on.

We’ve probably all had some version of this runaround. After continued denial of claims, I filed a grievance with the insurance company, via their online form – which permits fewer characters than a Tweet. In it, I packed conversation histories, tracking ID’s, dates and names of their verbal assurances. It was rejected. I then learned of a government agency, The Department of Insurance run by the State of California. I filled out a one-page form, included a three page letter detailing my case, as well as dozens of pages of supporting documents.

And, earlier this week, I received official word from this agency that my insurance company will ‘make an exception’ and cover the bills that they had originally promised they would. It was a huge time-suck filled with uncertainty, and I’m thrilled to have this behind me.

In my efforts to get better, I tried various suggested Western and Eastern medicine. I was prepared to try Northern and Southern medicine, if those exist. I detected the BP early, so, by all accounts, I was in position to be done with it quickly. Not so, in my case. For several months, I taped my eye shut at night to avoid scratching the cornea. I couldn’t eat easily. I couldn’t say my F’s nor my S’s. I might have had less of the alphabet available, too, were I not a trained actor. In fact, one of the best tools to my recovery was vocalizing; the vibrations from vocal practice helped stimulate my face. I think the biggest help, though, was acupuncture. That really stimulated the facial muscles. I went to one acupuncturist, who was OK. But, after half of my allocated sessions through insurance, I found a second one – and boom, I could feel a real difference. Also at the halfway point of my official allotment of sessions, my insurance company assured me that, should I need additional sessions than the yearly allowance, I’d be covered. That was a short-lived relief. I felt the acupuncture was really helping, and with their documented-verbal OK, I continued well past my allotted number of sessions. But, bureaucracy was rampant. With claims getting rejected, I would often contact the insurance company to inquire. It was almost a game. They would direct me to their Pre Authorization Department, and there, I’d be told that there IS no Pre Authorization department for this. Nobody at the insurance company could provide a letter of pre-approval. Still, there were a few supervisors that echoed the original verbal OK that I’d of course be covered. But…the insurance company refused the Claims.

I took copious notes during my several calls to the insurance company over the months. I was given plenty of mixed messages. The only clear message was that my acupuncturist was not getting paid. The stress of this didn’t help me nor my Bell’s Palsy. In fact, this financial uncertainty prompted my acupuncturist to the leave the practice, and return to her home country of South Korea. Her livelihood was directly impacted. That’s how wretched and disorganized this odyssesy became with my insurance company. I’m sure this isn’t news to anyone who’s dealt with insurance claims. One hand doesn’t know what the other hand is doing. And/or, they expect to outlast you when you throw up your hands and say, ‘Enough.’ They expect to wear you down – it’s a war of attrition.

I’m grateful to be feeling better. I’m grateful the insurance company is being held accountable. I’m sad that it took this much to get justice, and that in the process was lost a great practitioner and good soul. I feel fortunate to have insurance and to have an objective third party to appeal to. I do wonder what might happen were any Repeal and Replace legislation to pass.

Having reached the Six Month mark of this journey, there’s much progress to report. I can speak clearly; I can smile, mostly; I can wink, barely. 

I’m better than before, if still not where I was. Am I better due to the time that’s passed? Or from singing? Or twice weekly acupuncture treatments? Or even from a modified diet that now includes supplements? Probably all of the above. At six months, I would have thought that I’d be done with this, but I venture to say that I’m about 80% recovered. My eye and mouth look better by sight, though neither truly works like they should.

If I weren’t a trained actor, my speech would probably still be noticeably affected. There are two sounds that, when I make, require effort to get out properly. I’ve compensated. Often I don’t even think about constructing my mouth in a way that allows for clear speech. Sometimes, though, it’s necessary. It has added, perhaps, a level of ‘realness’ to my voice – a sort of lazier mouth. This might be a stretch. And most people can’t hear the change, but I can. It’s my instrument, and I know it well. Saying or singing ‘O’, for instance, reveals by sight how the muscles in the mouth have yet to bounce back. I’ve compensated pretty well, but it’s unmistakeable when you see me produce an ‘O’. Will this get better? Will I always have this distorted look and somewhat compromised sound? We’ll see. 

My left eye closes a lot better. I don’t have to tape it shut at night. It still gets dry sometimes. (I tried a procedure to help the eye’s deterioration from the dryness, but it failed). Winking is better, but still looks pained. Think Popeye. Regarding eyebrows: I still cannot do a ‘Groucho,’ but can do Jack (Nicholson or Black).

Bell’s has been my gateway to a tough health year, no doubt. Maybe it should be so surprising to me how one thing cascades to another. I’ve now got three things in various stages of healing. (Prior to which, I felt healthier than ever before)

Yes, at the end of five months, the BP has improved noticeably. My speech is probably 85-90% returned; today it sounds better than it is, I think, because of my adjustments and compensation. In my life of speaking and singing, I tend to over-enunciate already, so the remaining impediment from BP is largely masked. Sandwich eating is easier – though I tend to eat things that don’t stretch my mouth. Chewing is much easier; less incidental, internal self-chewing.

My left eye closes….almost. I generally have stopped taping my eye at night. A not-all-that-funny thing happened a few weeks ago regarding my eye that changed the direction of my short-term health. It became the second health thing to deal with. While visiting the ophthalmologist for  a follow-up eye-exam (my eye seemed improved enough), she looked me over. Things were OK, generally, it was noted, but my affected eye was determined to be really dry. (Keratitis Sicca) Now, my Ophthalmologist is awesome and gracious and saw me ASAP when I contacted her back in February. Her advice then: Moisturize, Moisturize and Moisturize. I did a decent job, I thought. I taped it every night with moisturizer inside, plus drops during the day. But, I guess my diligence trailed off since things seemed to feel ok. Lesson learned: Keep with the drops even if you don’t think you need them. Because: you do need them. So, on this follow-up visit, she mentioned I was a good candidate for a fairly new procedure: Amniotic Membrane Transplantation.

Basically, it’s like a contact lens of membrane that gets placed on the affected eye. Over the course of about four days, this will merge into your own eye, giving it a much needed drink of water and nutrients to help repair the damage. At the time of the procedure, a clear disk, like a blank contact lens gets placed atop of the membrane lens to protect it for the next few days. Out patient procedure that lasts twenty minutes. I felt like a cyborg or that I was in The Matrix.

By the end of the day, my eye still felt irritated. So, instead of coming in on Monday to check on it, I came in the very next day, Friday. I was told the worse was over, but to see how I feel. The rest of the day, and into early evening, it became excruciating. Fortunately, I was able to be in touch with my Ophthalmologist who reached out to her community, too. Bottom line: there’s a 7 to 8% failure rate on this procedures. And, my body rejected this alien intruder.  Ripping the disks out of my eye was a helluva lot more painful than I thought. (The membrane plus the protective, clear lens on top) I got some drops, and slept poorly that night. I’ve never had an issue with my eye, but the good news is that the pain was short-lived. I still visited her on Monday and got even more drops. Fast-forward a few weeks, and my eye is fine….if still kind of dry.

The third thing, health-wise, that has been an issue the last few weeks has nothing whatsoever to do with BP. But, it still hampers me. I aggravated a fairly minor knee injury from maybe eight years ago. It was a perfect storm of shooting a video for four hours of many different people; driving a lot; working out my legs; driving more; sitting in a theatre for three hours for a play; and walking around a lot. All within about twelve to fifteen hours. By the end of that day, I was limping. Next day, I did more walking. And limping. Went to acupuncture for me BP and asked them to look at my knee, too. Visited my chiropractor right after and got e-stimulation for the muscle. This started June 2, and now, here it’s the 30th: still limping. Yikes. I believe that the re-injury was a perfect storm of all that activity combined without rest. I try to rest it, ice it, elevate it and lately, compress it. R.I.C.E. All of a sudden, it seems like I’m twice as old as I thought I was. Numbers like these don’t mean much to me, but damn!

So, here it is, the last day of June. After seeing the chiropractor several times and feeling a lot better after each visit, I gave it a rest. Tried more RICE; and began to swim a lot more than I have. Aqua therapy feels good. I’m stretching and moving it in a way that increasingly feels great. Last night, swimming made my left feel better than it has all month. This morning, it’s early, but I’m limping less.

I’m still adhering to the recommended supplements and dietary modifications recommended to me by the Nutrition Response Test completed in February. That hasn’t been too challenging. Seems to be helping.

The scoreboard reads: BP is getting better, if the more obvious recovery has flattened out; Dry Eye has recovered from the procedure and I don’t think the worse for wear; Knee is still swollen but has much better mobility, less pain. Still, I don’t feel like an Alien. In fact, I feel all-too-human.

Three weeks after my first real signs of progress, my lips and cheek can smile more. I have more mobility in my mouth, including significant clarity in pronouncing my Fs and Ss. There’s hope.

The forehead and eyebrow of the affected side still don’t move much, if at all. No Groucho impersonations for me anytime soon. But, I definitely look better. People see it, and I can feel it. The mouth droop appears to be gone completely.

That I can speak more clearly is my moment-to-moment reminder of hope. I am used to speaking. I am a speaker. I am a singer. I am an actor. I’m a trained communicator. Having had more than three months of mush-mouth had taken its toll. The funny thing is that, at its worst, I finally let go. I simply accepted that that’s where my mouth is and that’s where my self is. After that acceptance, I went to the piano and began to play.

Even before the BP, I’d been writing pieces without words. But I love to sing. It’s as physical as anything else I do – and takes more out of me than most activities. It’s a workout when I sing.

But, right at the point of acceptance- THAT’S when I sat down to sing. And I sang songs as best as I could. And they sounded a little strange. Bulky. A cluttered mouth angling around the words. Less Droopy Dog, but still marble-mouthed.  At this time, while singing, my mind flashed:  ‘Hey, maybe you’re the guy who sings in a pained way, like a Tom Waits character.’ And I felt a little sad, but then I shook that off. I got some steam behind me. My singing was a bit tortured, but damnit, I was singing. And, a day or so after that singing is when things started looking up.

MAY 18, 2016
108 days after my diagnosis of Bell’s Palsy, I finally begin to see and feel some progress. A slight smile can be created on my affected side. The muscles, the nerves are seen activated by my jaw.
Though I’m far from out of the woods, this is a huge step. I will maintain my nightly routine of moisturizing then taping shut my affected eye. I will try to get more sleep than I do. Lately, I’ve had more. My eyebrow can barely raise. I can’t do a Groucho eye-raise, but more like a mini raised arch. The lines are still on the affected side’s forehead.
This came about while  working out on Wednesday, when I felt a little different. I tried to smile. I sometimes try to do this. I’ve chided myself for not doing a battery of exercises for my face. It’s hard to be on top of everything, even though it had felt that I was doing pretty much all I could be doing.

I checked the mirror at the gym. I could see my lip curl up. I could see the jaw muscle straining with a line of motion. I couldn’t believe it. It’s been long enough since anything like this happened, that it began to feel almost-normal to not be able to use my mouth. I’ve resisted taking pictures of myself except for sending samples of my face’s immobility and droopiness.
I imagined posting on this blog almost daily. Here we are two months after my most recent post. No matter: here’s a recap. I have spent a couple months using acupuncture to treat Bell’s Palsy. First Acupuncturist saw me 12 times total; 3x a week. Though encouraging, I wasn’t feeling we were going deep enough. Something was missing. E-Stim was attached to some of the needles in my face — and it just didn’t seem right – artificial to try to move my face. (I’ve benefited from E-Stim previously on an acute injury, but this was different) As I approached the halfway point of allowable sessions as per Insurance, working with Acupuncturist #1, the technician moved away anyway. A change was happening with or without my input.

Second Acupuncturist saw me 12 times; 2x a week. They said 2x a week is plenty. They didn’t plug my me into any e-stim. In contrast, when the practitioner put the pins in, I felt plugged in. That’s the ‘Chi’. This felt more authentic and potentially helpful. Though I continued with supplements and a more strict adherence to recommended dietary changes, this was no big change in my appearance. OK, maybe my eye didn’t seem as droopy. But the mouth looked as bad as ever.

After my 12 sessions each with both Acupuncture offices, I needed to pause again to figure out the Insurance. Not too helpful is how the insurance company has a policy of 24 sessions per calendar year. After my two months+ of acupuncture, I spent the next three weeks trying to get the insurance company to approve more sessions. And, to do so in writing for the benefit of everyone’s peach of mine. They refused. They passed the buck. They said different versions of No. But eventually, I found some saying YES — just not in writing. Some supervisors and even some people in the Authentication Department said to just do it. They informed me that there was no official approval to grant. HOWEVER, the process would be similar as before: Get the service done; Provider bills Insurance, Insurance then asks PCP for Medical Records before eventually paying the Provider. Only problem, the Provider (acupuncturists) get nervous they won’t get paid. Acupuncturist #1 had a better command of English language, and I thought that they’d be more amenable to this continuing. But they would do so only if I paid my pro-rated Full Price first — with refunds to follow … once insurance honored it. I was not in a position to do that.

Acupuncturist #2 struggled a bit with the language — but in fairness, I think when dealing with the Insurance company, everyone struggles with the language. The language of gray areas, nuance, and blind faith. Finally after three weeks of no acupuncture, I felt my mouth was getting puffier — more inflammation setting in. Speech became more challenging. In the recent past, Bell’s Palsy noticeably affected my ability to utter Fs and Ss. Now, it felt more like I had a mouthful slowly filling with clay. On some sort of desperate instinct, I cold-called Acupuncturist #2.  I spoke with their nice insurance guy, and also with the owner, about continuing service. Finally, I offered – let’s do this: and if Insurance doesn’t cover it – I will settle it with them. This is risky, because their service is almost 4x more than my co-pay. I had a similar offer from Acupuncturist #1, but they were about  2x my co-pay; plus #1 is  closer to where I live. But, in my heart, despite the cultural differences and language challenges, I felt the service was simply more effective at Acupuncturist #2. And so, days before my breakthrough, I booked two more sessions of Acupuncture.

Everything ground to a slow pace. The month of February continued with inquiries, research, therapies and faith. People get Bell’s Palsy any number of ways, at any age. Too much pasta in Italy prompted an intense reaction from my sister-in-law. She soon discovered that she had some food allergies – which made her ‘Raging Bull’ diet so debilitating to her. She cut out the offensive foods, and before long, she bounced back from her BP. This was in the back of my mind, but didn’t prompt me right away.

I continued with my acupuncture, which seemed fine, if not necessarily a recognizable benefit. Yes, I liked the quiet time of resting in a quiet room, despite the presence of pins stuck in me. The acupuncturist also began to use e-stim on the pins in my face. It felt odd, but not too bad. I got treated 12 times in the month of February: 3x a week. Somewhere in the middle of it, I wondered if this place was the right fit. Maybe I should consider a different acupuncture practice?

Halfway into February, I met with my Primary Care Physician. She didn’t have much of a poker face when she saw my BP face: Unmistakably, she said, that my case was between Severe and Total. She backed off a little bit as the appointment continued, but this was the first time that Fear entered the picture. My picture. She told me to see an Eye Doctor to make sure I don’t accidentally scratch my cornea — something that can easily happen. I’d been taping my eye shut each night since I first went to Urgent Care. I was also given names for a Neurologist, and for another Acupuncturist. The Optometrist saw me within the hour. Awesome. Hadn’t seen her in a couple years, but she obviously recognized the urgency of the situation. They tested my eyes, and I was given the instructions to Lubricate, Lubricate and Lubricate all day. Picked up some eye drops (forget the ‘get the red out’ variety), and some evening lube for my eye while I tape it. Yes. As much fun as it sounds.

The neurologist, on the other hand, could see me in about two weeks. When I saw him, he checked me out, but had nothing new to say. I’ve got it, and I got it pretty bad. He said I was doing the right things (though he was noncommittal on the value of acupuncture). He also said that there’s no real time-frame for healing. And, that 71% of people with BP recover; completely or partially. So…. that means there’s 29% that don’t?! Well, I still like my odds, and there was little to add. As March began I was left with that to ponder. And, in the week I paused on acupuncture (Week 5, if you’re counting), my regular acupuncturist Kieren decided to move out of the area. So now, would I stay at Aquilibrium or try someone else – maybe the place my PCP recommended.