my Bell's Palsy experience
Disclaimer: I am NOT a doctor, nor even very knowledgeable in the field of medicine. I write only from personal experience.
I'm one of the lucky 1-in-5000 to possibly 1-in-500 people who have gotten Bell's Palsy. It's not usually a serious condition, but the symptoms are unusual and unsettling, to say the least. I've kept a log of my progress, and I've also collected a list of links to other sites that contain information. Having experienced first-hand the effects of this condition, I have written these pages, even before full recovery, in the hope that it would encourage some future sufferer of Bell's. It's like a cold: you get it, hit the bottom, then wait your recovery out. Contrary to what might be initially suggested by horror stories you might run across, most people with Bell's recover - and some quite quickly.
This is normally only a temporary condition - it won't last forever.
what is it?
Bell's Palsy is caused by the inflammation of the seventh cranial nerve (or cranial VII as some call it). No one is really sure what causes the inflammation in the first place, but it is thought by most people to be some type of virus.
The nerve (actually a bundle of about 6000 (mostly?) motor neurons) comes out from a small tube around the area below the ear and then branches off to the facial muscles. When it gets inflamed, it tries to expand inside the tube, but runs out of room, and the nerve cells get damaged and have to heal themselves. The damage to the nerve prevents signals from the brain stem (where the nerve originates) from getting to the muscles in the face causing the half of the face so affected to be 'frozen' in a neutral expression.
The affected segment of the nerve is about 40 millimeters (1 and a half inches) long, and the nerve normally regenerates at a rate of 1 to 2 millimeters a day. Recovery time varies from 3 to 6 weeks, to 2 years. Supposedly, most people make adequate recoveries by 2 months.
On Friday, January 23, 2004, I got myself a case of Bell's Palsy. I didn't recognize it on that first day because I've never had Bell's before. Instead, I thought that the tightness in the right side of my face was just the result of my being tired. In fact, on that first day, few of the many people that saw me noticed anything unusual.
The next morning, the tightness had still not gone away. The tightness I noticed the day before was actually the side of my face that was not affected by Bell's trying to compensate for the lack of movement on the side that was affected. After doing the obligatory search on google for my symptoms 'half face paralysis symptoms', I had a good idea of what I had, but I still went to my family doctor to confirm it. At 10:30 a.m. on Saturday, January 24, I was officially diagnosed with Bell's Palsy.
Self-diagnosis may be correct (as in my case), but you should always confirm it with a doctor: they're usually more qualified than you in these things. This is especially true for conditions like Bell's where the diagnosis is a 'diagnosis of exclusion' (i.e. other diseases with similar symptoms must be ruled out first).
I spent the rest of Saturday and most of Sunday looking up websites that described Bell's Palsy, it's symptoms, and recovery. I have included the sites I thought worth book-marking in the 'external links' section.
Symptoms of Bell's Palsy vary widely between people. Mine were relatively minor, but a cousin who also had Bell's was hit quite hard. Throughout the progression of the condition from the beginning of the degeneration to the beginning of the recovery, I did not lose feeling in the affected half of my face.
My symptoms gradually increased throughout the day on Friday, gradually progressing to a noticeable loss of facial movement on Friday evening. The first sign that something was wrong was tingling on the inside of my cheek when I ate breakfast and lunch. By early evening, I was noticing a lopsidedness to my face. At about 8:00 p.m., speaking was noticeably affected with slurring and hissing of some words as I lost voluntary control of lip movements. At 9:00 p.m., the first astute observer noticed that I looked different: the working side of my face looked swollen - probably because it was trying to overcompensate for the non-working side of my face.
The next morning, I thought that I was doing a bit better, but in fact I had lost the ability to independently close my eye. I had to manually close my eyelid with my finger to keep my eye from drying out. I thought that I was able to raise my eyebrow and forehead, but in fact I couldn't. Voluntary muscle control continued to decrease slowly and sporadically as at times I actually thought that I was getting better. By Saturday night, most of the people whom I talked to had noticed that something was different. I was still able to slightly move the side of my mouth and close my eyes. I started using artificial tears (eye drops) to protect my eyes from drying out as my tear ducts had stopped working and I was still unable to close my eye.
One of the most important things someone with Bell's has to do is keep his eyes from drying out. Some form of eye protection should be worn at night - especially if the eye can not close on it's own. I used a gauze eye patch myself, but it may be necessary to also use ointments or gels.
The second most noticeable effect was that because the muscles in my ear also did not work, I could not damp out loud noises. Loud noises would stay loud from the time they entered the outer ear until the time that they hit the ear drum. I had no idea that noises could be that loud.
On Sunday, I found it quite difficult to talk even though I felt better. I had to continue to manually close my eye using a finger. People suggest that it is safer to use the back of the fingernail to do that, but I didn't have any problems using whatever part of my hand that I felt like. I almost completely lost control of my face by the evening, but there were localized improvements (that would not last through the night).
Monday morning saw the greatest loss of movement, but that was the worst of it for me. By the early afternoon, I started to experience involuntary twitching of my cheek muscles.
treatment and recovery
Bell's Palsy is something you just have to wait out. During this waiting period, the most important thing to do is take care of the affected eye by keeping it from drying out.
In my case, I was prescribed Prednisone, a corticosteroid, to reduce the inflammation of the nerve. I refused (and I was given the option to refuse) because my case was mild. Taking Prednisone supposedly helps the recovery rate, but very few studies have been done to show how well it works. As of 10 years ago, according to my doctor, it was not normally prescribed. If Prednisone is used, the effective time frame within the first 5 to 7 days, with best results if it is taken within the first 24 hours.
Physiotherapy was also recommended (which I did undergo). Personally, I don't think it makes too much of a difference in my case, but the whole point of the physiotherapy is to make sure that the muscles are adequately stimulated. Recommended physiotherapy frequency is 3 times a week. In my case, I did it twice a week.
Physiotherapy consisted of stroking the jaw and cheek muscles with ice in the direction of muscle movement, massaging the muscles in the direction of movement, and electro-stimulation. Electro-stimulation isn't recommended unless it is done properly because it may increase the risk of synkinesis (nerves regenerating into the wrong nerve endings causing the wrong muscles to move).
I think massage is the most important in the early part. Again, this is done in the direction of muscle movement. Also useful was tapping the muscles with the fingertips. This worked quite well for me, because after some of the tapping sessions, involuntary muscle twitching would occur for a short time. Trying to move muscles that just won't move isn't a particularly good idea.
One thing I couldn't understand at first was that my cheek got sore. This could have been the result of excessive massage, or trying to move the muscles too much before they were ready. My physiotherapist thinks that I'm trying to get the few muscles that are working to do too much - in effect trying to regain facial movements that normally require all the facial muscles, but only using the few that are available. I think that she's correct.
After voluntary muscle movement is regained, facial exercises are important. However, it is just as important not to overdo it: moderation and synchronization (with the other side of the face) are the goals. I try to run through the list of exercises at least once every two hours.
To try to help my brain relearn which nerves to fire to move certain muscles, I helped the relevant muscles along with my fingers (e.g. pushing up the skin on the forehead with my fingers while trying to move the skin up on the forehead). I do not have solid proof as to the effectiveness of this technique, but it seemed to work, and my physiotherapist also says that it should work.
Acupuncture is also supposed to work. I didn't do it though. Somehow, I have problems with the thought of looking like a porcupine or a pin cushion.
hope and support
I'm actually quite fortunate that I only have a mild case of Bell's Palsy. Even so, I did experience at least one day of almost total paralysis of half my face. This is perhaps the only time that I'll have the chance to do the one-eyebrow-raise like Spock.
It is difficult to tell how long it will take to recover at the beginning. At this time, before any kind of voluntary muscle control is reacquired, it is important not to be discouraged. In my case, I acknowledged and accepted my condition within a very short time. My reasoning was that I should not worry about something that I had no control over. It would either get better or not, and there wasn't much I could do about it.
As I told a friend who asked, the early days are a great time for introspection. I was able to experience something that few people do and gain an appreciation of what I have (having first of all lost it). I was also able to see that even though I had yet to recover, I still had a whole lot more than many people - not to inflate my own ego, but to see that even with my loss, I had less of a right to complain than most. Just as importantly, the sudden onset of Bell's was a vivid reminder of the fragility of life in general: the things that we are secure in could suddenly be taken away.
Bell's Palsy is perhaps the best way to experience paralysis. I was able to use some of my time to identify with people who are physically less fortunate than I. I fear that I will forget this experience and the lessons learned from it as I regain control over my face. I hope that I do not forget.
While still recovering, I was able to participate in all the activities with which I am normally involved. For the reason that I was fully mobile, I do not even classify Bell's as an illness. The major hardship was having to consciously remember to manually blink. This broke my concentration more than I thought that it would. Related to that was that my eye would get tired quite quickly, forcing me to rest.
People ask about my face when they see me, and I tell them what's wrong. Aside from the blank expressions of information overload when I describe the technicalities involved, and expressions of concern, people do not see me any differently. I am who I am, and Bell's does not change that. It's sometimes inconvenient, but it is the inconvenience like that of a cold: annoying, but not a big deal.
Some people with Bell's are distraught over their appearance. Getting Bell's is not the end of the world. Appearance is only a minor part of who a person is. Your attitude over the course of your condition will determine how you handle it. People might think that your lop-sided grin looks funny - it is funny as in amusing and entertaining. Laugh with them (unless laughing stretches your skin so tightly that it is uncomfortable). Those people critical of your appearance that you worry about would likely also be critical of a cold that hits you.
Finally, I have been supported in prayer by many people during my time of recovery. It is an unusual condition, and people notice. I did not expect so many people to offer their support in prayer. I am also aware that there are (not were) people praying for me whom I have not talked to, nor seen since I got Bell's. I did not know how much I would appreciate those gestures - they are much more than that.
God has been teaching me a lot during this time. There are some times during which I am actively aware that I am learning. For those moments alone, I am glad to have gone through the experience.
Romans 8:28 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."
I will try to keep up firstname.lastname@example.org as long as I don't get excessive SPAM, but it won't be a high priority for me.