My Battle with Bell’s Palsy. Read the series here:
Parts 1 and 2: Symptoms/Onset & Diagnosis
Part 3: My Team
Part 4: The Recovery
Babyface, The Cattle Prod, Hope
After my initial diagnosis on February 2, 2014, I went a solid 2 weeks with complete facial paralysis on the right side. When I say complete, I mean, nothing at all. No eye twitch, lip twitch, forehead wrinkle, etc. I would try with all my might to scrunch my face and one side would scrunch and the other side was completely smooth. In an attempt at humor, my husband did mention just how smooth and youthful the right side of my face looked. Thanks… I also had a very altered sense of taste and since I had limited movement of my tongue and no movement on half of my mouth, eating and drinking became quite a difficult task. I literally would have to hold a dribble cloth up to my mouth every time I took a sip. (Side note: I was advised NOT to use a straw–opposite of what older therapies suggest–during the early onset stage so as not to overwork my facial nerve)
I mentioned yesterday that Dr. Rodgers conducted many hearing tests each time I went into his office (every few days at first followed by every week followed by every month until my face was almost completely healed). During those first 2 weeks, I would leave his office completely dejected since we were in that hurry up and wait period. The facial nerve takes AT LEAST 14 days to regenerate so I knew to not expect any movement what-so-ever during that time. On day 13 or so, I went in to see Dr. Rodgers again and this time he brought out an electric shock device that reminded me of a cattle prod. Our hope was that this little device could help predict the future. Because I had had zero change or improvement in over 2 weeks, he wanted to test to see if the facial nerve was still alive (HOPE!) or dead (not good). He put one prong in front of my ear where my facial nerve is located and one on the corner of my eye and shocked it. PRAISE JESUS my eye twitched. I cried and cried. Hope! HOPE! For 2 straight weeks I had wallowed in self pity, hiding inside the house, not inviting friends and family over to see the baby because I was too embarrassed about my face and now, that teeny tiny twitch changed my entire perspective. I was going to be okay. I didn’t care if it was going to take 2 more weeks, 2 months or 2 years–I was going to be okay!
Regeneration and Movement
A few days after the cattle prod and eye twitching experiment/experience, my face slowly starting coming back to life. Whether the electric shock gave it the boost it needed or whether the 14 day waiting period was up and my facial nerve knew that I had lost patience days before, I don’t know. It took over a month for the majority of my face to appear seminormal and several more months to feel like everything was close enough for me to be satisfied. During this time I went to the drivers license bureau to get my license renewed. Not good when the lady tells you to smile and you just look at her because you can’t move your face.
As you’ll see in my video, the slight twitch in my mouth came back first. This was one of my first movements and I’m pretty sure I sent this video to everyone on my contact list. If you notice in the video, my eye, forehead, and cheek doesn’t blink or move at all. This is how my face was for those two weeks–completely lifeless.
Several days after the mouth twitching and a whole lot of pain later (imagine how sore you are after your hardest workout–that is how my face felt), my eye regained a small amount of movement. I don’t remember the entire order that muscles would come back but if you’ve ever looked at an anatomical picture of the facial muscles (below), there are quite a few and I’m pretty sure they came back one tiny section at a time. I do remember that my forehead and my lip were the last to function and to this day, my mouth muscles, specifically my bottom lip, don’t move quite like they should. I have yet to train the corner of mouth to turn all the way up but it is getting close.
I have had to relearn how to make certain expressions and practice the amount of force needed for one side versus the other side just to keep my smile or movements symmetrical. This was something I learned from occupational therapist at the Atlanta Ear Clinic, Gaye Cronin.
If you have Bell’s, you have lost hope in facial movement, you don’t know what to do next, you aren’t sure if you are receiving the best care or therapies for your face, or if you just want to hang out with an extremely bright, kind, and knowledgeable person, you should contact Gaye Cronin. My friend, Rachel, recommended reaching out to Gaye from day 1 and I’m so glad she did. Rachel was diagnosed with Bell’s a few years ago and didn’t receive the recommended combo of both steroids and antivirals initially. She was also given some bad advice about actions to take to “rehab” her face before the inflamed facial nerve had time to heal. She ended up with a condition known as synkinesis (or miswiring of the nerves after a facial trauma). Rachel has worked with Gaye on neuromuscular facial retraining and felt that she could also help me. I am so thankful to Rachel for the recommendation!
I was thankful and hopeful during my road trip to Atlanta since by the time I got an appointment I was about 50% healed. I remember how pleasantly surprised and happy Gaye was to see someone that was making great strides and improvements. This was extremely encouraging to me. She also said that I had done everything right initially which would hopefully ensure a high success rate. While at the clinic, we did a variety of tests to measure the strength and balance of my face (all VERY interesting) and I left with a list of exercises to practice in the mirror to train and strengthen my weaker muscles. Note that this would have been the time to make a follow up appointment but we felt like I was on a pretty good road to healing so I never went back over. To this day, I’ll look in the mirror and open and close my mouth doing the puckers and other stretches Gaye suggested. I don’t have her list of exercises on hand to share but I did find this site online and the advice given on this Bell’s palsy page about facial retraining was very similar to what she suggested. Please note that this should not be use to self treat but contains good advice to accompany a doctor or occupational therapist’s suggestions.
Acupuncture, Chiropractor, Botox Therapy, Surgery, Being Your Own Advocate
This is the part of the series that I’ve been anxious to write about and where I feel like I may be letting some of you down that want to know more about the various types of therapies suggested for those with long term Bell’s palsy. Fortunately for me, unfortunately for you, I did not have to use any of these services so I don’t have much additional information to provide at this time. I have talked to people that worked with chiropractors, acupuncturists, etc. that have been very happy with their outcomes. I have also talked to others that warn to not seek these therapy options too early (before the inflamed facial nerve has had time to regenerate) and that if the person you are seeking treatment from does not work regularly with Bell’s patients to find someone that does.
This is why I recommend seeking a professional like Gaye Cronin that has worked with thousand’s of Bell’s patients to help determine the best therapies for your needs. Bottom line…do your research and be an advocate for your own health. If your primary care doctor, neurologist, or OBGYN doesn’t have a good sense of the best care plan for your needs, find someone that does. I was fortunate that those involved in my care did have the experience I needed but I made it a priority to seek more specialized care each time I hit a milestone. For example, I didn’t just go to a neurologist (which interestingly, many patients have said their neurologists have little experience or knowledge about Bell’s) but to a neuro-otologist. And while he gave me very good information about facial retraining once I started regaining movement, I wanted to seek care from a specialist so I took a road trip to Atlanta. Had I needed further therapies then I would have found those that specialize in the particular area. You get the idea. So to those with Bell’s reading these postsc don’t settle. If your doctor is discouraging or isn’t quite sure if you’re getting the appropriate care, find someone else. This is not the time to be someone’s guinea pig. (Okay, soap box over.)
One year later, I am happy to say that I’m about 97% healed. I leave the remaining 3% to what I personally can see in the mirror but that I no longer dwell on or stress out over. A droop in the lip or eye here and there is part of who I am. It’s given me this story to go along with the already wild ride of my daughter’s birth story. We had a crazy first year but in a heartbeat I would go through it all over again and worse if necessary
If you’ve had successful treatment with acupuncture, a chiropractor, Botox, mirror retraining, surgery, etc., please leave me a note in the comments. I would love to know more and would appreciate any guests posts discussing the subject.
In the meantime, make sure to check back tomorrow for a list of resources, top tips and takeaways. My Facebook page has also great comments from current and former Bell’s patients so make sure to chime in and connect with us!
*Disclaimer: Please note that as a registered dietitian I have extensive background in researching, reading, and interpreting scientific literature. However, the information that I share about medications, therapy, etc. is based on my own experiences and should not be used to self diagnose or self treat. If you have Bell’s palsy or think you may have it, please seek a medical professional. This information is not intended to replace the advice of a doctor. Holley Grainger Nutrition, LLC disclaims any liability for the decisions you make based on this information.