Looking for advice from people with facial paralysis experience

I’m currently in recovery from GBS and around 3 months down the line since initial onset, on the whole I’m doing great with my recovery my arms and legs are improving every day however I do have one quiry.

My case left me with complete facial paralysis and around 2 weeks ago the left side of my face came back, however since then my right side has stagnated while the rest of my body seems to be improving daily (the left side of my face took around 3 days to come back since initial signs of improvement). And as a result I cannot blink my right eye and throughout the day it is very uncomfortable, I cannot look directly at the sun and even a slight breeze outside is extremely uncomfortable because without the ability to blink my eye is basically open all day, the hospital has given me eye drops but they aren’t really doing anything.

I was wondering if anyone had any similar experiences with their eyes and just in general what the recovery times were of people with facial paralysis for their face to return to normal?

Thanks! Liam.

Hi Liam

My paralysis was from head to toe, inside and out. My facial paralysis hit about day 6 after onset of first GBS symptom. I could not blink or move my mouth, eyebrows, swallow nothing. It took about 8 weeks for me to be able to blink and hold my eyes closed. As things came back, they did so unevenly. The eyes were tough, I got migraines from the issues created as the muscle movement returned in each eye separately and they moved independently of each other. It was probably about 5 or 6 months before I regained feeling and muscle use evened out on each side. I still can't squint or raise my eyebrows. I can't hold my lips together tightly enough to swim under water or drink through a straw and my smile is still slightly lopsided. I still get asked occasionally if I have had stroke because my left side is a little more droopy than the right. With more than 100 muscles in the face, it is really hard to isolate physical therapy and retrain the individual muscles. They tried electrical stimulation therapy, but it didn't work out so well. I did find that working in front of a mirror, trying to make faces, purse my lips, furrow my brow, etc helped. It seemed a little weird, but I had to do "facial work outs". I think the facial paralysis is tough because everyone can see it and you feel like you look like a different person. But I can, and do, smile! When I consider that I could have remained paralyzed, I am thankful for every single thing that does move! And another unforseen positive, i have a lot less wrinkles than most and I will never need Botox!

Hi Charlotte.

Thanks for the reply - your case sounds horrible, I guess I should just consider myself lucky that my case was so mild, from first onset i reached plateu in around 4 weeks and in the following 4 weeks I went from being unable to walk or sit upright or do much with my arms to walking on my own with regular arm function - although I’m still fairly weak - my face is really the main issue.

But judging from the severity of other people’s cases on here I guess I should just be very greatful of how mild my case was and just be patient!

Thanks for the help. Liam.

Hey Liam,

Just a heads up if no one has suggested this yet. I too was full paralysis and deaths door experience. It strikes me that you may have experienced the Miller Fischer Variant of GB, affecting the cranial muscles in the face. My face did not recover at the same rate on both sides but eventually recovered almost back to normal. I have a hardly noticable lazy left eye. You may want to investigate this variant.