Anyone here have any experience with nerve palsies? A month ago, I got a splitting pain in my ear and Bell’s Palsy happened. This is a condition of the seventh facial nerve where it basically dies and half your face is paralyzed. Initially I didn’t worry about it as the prognosis is good, but a month later and I’m still Grade VI on the House-Brackman scale (total paralysis). I got tingling in my arm on the same side, and today my leg started feeling like it was asleep. “Leg falling asleep” means palsy. At least I can still clench the muscle, which means it’s a feeling nerve instead of a control nerve. I can still feel my face just fine, but the motor controls are gone.
This is very atypical for Bell’s Palsy. Usually it gets you and disappears a few weeks later. It’s been a month already. Now, it appears to be spreading…something that Bell’s Palsy doesn’t do. Any ideas or advice?
Yes, and you who are ready to post the most unhelpful comment in the world, “you need to stop asking questions on the internet and see a doctor immediately,” I just saw my sixth doctor today. The fifth doctor was a neurologist. The main problem is that nobody sees it as a problem. “Oh, it’s Bell’s Palsy,” the doctor says, immediately turning off her brain. “Here’s the standard treatment, now go away.” I’ve explained my thoughts and no doctor wants to listen. The neurologist kept interrupting me, for Pete’s sake. I’m concerned it’s an underlying condition that is manifesting as Bell’s Palsy.
Here’s what’s been done so far:
[ul]
[li]Steroids for the first 7 days, 24mg/16mg/8mg (thank you very much Chinese doctor for totally underdosing me).[/li][li]Vitamin B12 plus ginkgo balboa from the Chinese doctor.[/li][li]Steroids for the next 7 days from an American doctor, 60mg for 3 days followed by decreasing dose. My face was still swelled up and the steroids seemed to help.[/li][li]Antiviral for the same 7 days as second dose of steroids.[/li][li]B12 + D vitamins + fish oil after the first two weeks. That’s all the neurologist gave me. Taking them daily.[/li][li]Today I went for my first acupuncture treatment now that I’m back in China. I’ve heard it helps, though I still regard it as witch-doctoring.[/li][/ul]
Any ideas? I’m stumped. I’ve been searching for days and nobody seems to have the same symptoms as me. It’s just endless stories about how it cleared up quick. I had a bunch of tests done and got a stack of meaningless numbers for my trouble. Anything can help…this board seems much more intelligent than any other I’ve seen online. I realize “ask the internet for help” is an idea doctors scoff at, but I’m at the end of my rope. I’ve searched for Bell’s Palsy here and read everything that came up. Thanks to anyone who replies.
I’m a sucker for medical mysteries, so I’m going to do you a solid and bump this. Besides, I think it would be cool to have The Dope MB featured on one of those shows as the people who came through with ideas when the chips were down and the suffering patient gets all cured and shit.
Bummer that you missed the window for optimal treatment with steroids and antivirals, which should be started within 72 hours of symptom onset. Ideally, prednisone should be given at a dose of 60 to 80 mg a day for a week along with valacyclovir (or other anti-herpetic) for the same duration. Even with that intervention, I see a lot of my patients resolve very, very slowly.
Sadly, there’s not much good evidence for symptom reversal from late intervention by other therapies. Surgical decompression of the nerve is sort of an option of last resort for severe problems, and nerve stimulation therapy might be beneficial for a few patients but the safety of that technique has not been adequately demonstrated.
Botox may benefit those with facial spasms, and function and appearance may be improved by facial reanimation surgery, but those are considerations for folks with big deficits which persist well after the onset.
If you’re getting acupuncture to the area that’s affected, I’d advise stopping that. Nerve regrowth after Bell’s palsy is disorganized and chaotic in the best of times and there’s no evidence that sticking a needle into that area makes it any less disorganized, and it could well make it worse.
With your new symptoms, your diagnosis may fall more into the “idiopathic facial paralysis” category, which is NOT truly synoymous with Bell’s palsy. Unfortunately a lot of physicians, even neurologists and ENT docs don’t appreciate that distinction. You may need to hie yourself to a western teaching institution to find someone who does. The standard approach to idiopathic facial paralysis is to watch and wait and see where it goes. So if you find a practitioner who appreciates the nuances, that’s still the most likely course for the shorter term. Though your other symptoms may get some MRIs or EMG/NCS thrown in.
Best thing to do is document symptom progression, and emphasize to your doc that you’re getting worse, not better, with more new symptoms in areas not classically related to Bell’s palsy.
WWE Announcer Jim Ross (who only works occasionally on the air these days, but who is still considered The Master) has suffered from Bells Palsy, with numerous re-occurances, for quite some time. He’s got quite a bit of facial paralysis going on.
Sorry, it’s not a lot of help, but it is an example of someone who has the same condition, which should have ended his career, but didn’t, and he is still generally considered the best in the world at what he does.
Welcome to the SDMB, gromky. I’m moving your thread from MPSIMS to IMHO, which is where threads about medical conditions go, to emphasize that advice from anonymous people on a message board should not substitute for the care of a trained professional. (That said, Qadgop the Mercotan really is a doctor and really does know what he’s talking about; though of course since he hasn’t examined you, etc. etc.)
Sorry you’re going through this – an old BF of mine had a really bad bout of Bell’s palsy that left him very unwilling to leave the house because of the whole drooling thing. Hope you find something that works.
I’ve been searching for days and nobody seems to have the same symptoms as me. It’s just endless stories about how it cleared up quick. I had a bunch of tests done and got a stack of meaningless numbers for my trouble. Anything can help…this board seems much more intelligent than any other I’ve seen online. I realize “ask the internet for help” is an idea doctors scoff at, but I’m at the end of my rope. I’ve searched for Bell’s Palsy here and read everything that came up. Thanks to anyone who replies.