Facial Nerve Paralysis

    • vmalave7
      November 10, 2014 at 9:14 am

      Hello,

      I was wondering if anyone had and/or still have facial nerve paralysis when diagnosed with GBS?

      I was diagnosed with GBS after 6 days of various test and uncertainties on February 14, 2014 after a spinal tap showed elevated protein. That same day I ended up in ICU for 3 days after the GBS progressed to my lungs within hours. I had extreme back pain, tingling/numbness, headaches,weakness of the muscle making unable to walk, lift, feel if I was going to the bathroom or not, extremely high blood pressure, elevated pulse and facial paralysis. My facial paralysis consisted of tongue and mouth feeling like I’m breathing in extremely cold air with no taste bud functions, both eye lids would not shut close, unable to make any type of facial expressions but was able to move my jaws to talk as much as I could be understood too. I spent 1 month in the hospital with in-house Occupation and Physical Therapy then sent home with a home nurse and in-home OT and PT for another 6 weeks. To date I am walking on my own with occasional weakness on my left side which only happens if extremely fatigued or stressed. I am often tired, memory problems, unable to do physical activities for more then 5-10 mins and having problems with staying focused at my job and comprehension.

      What I would like to really know is if anyone has had or still has facial paralysis after their onset of GBS? To date I have only gotten about 50% if not less of my facial muscles. I’m unable to raise my eye brows, can smirk, both eyes had start closing about 4 months after diagnoses but now left eye is starting to peak back open. My taste buds still are not the same. Though I don’t have extreme coldness in the mouth anymore everyone taste a little more salty then it was before. Some days worse then others depending on the fatigue of the day. I have extreme facial pain causing constant swelling of my face. Some days again or better then others but on bad days the swelling of the face causes vision problems, swollen in the mouth causing problems when I eat and of course muscle pain especially around the cheeks and jaw area. It scares me to think that I may no longer get my facial features back to 100%. I did noticed that Marijuana helps extremely with the facial pain allowing my facial muscle to relax as they are often tense causing also speech problems with extreme swelling.

      Any information would be greatly appreciated even if its just your story. 🙂

      Thank you,
      Venus M.

    • Jim-LA
      November 10, 2014 at 5:10 pm

      Sometimes when the face is involved like you have described, the variant of Miller Fisher Syndrome (MFS) is present. That is what happened in my case.

      I got GBS in 2008 and it became CIDP/MFS a couple months later. I couldn’t smile, close my eyelid, speak properly, chew food, and had numbness all over my face. It took over a year for most of that to go away, and I’m probably 95% back to normal today.

      Plasma Exchange (PE) helped my face the most. Others have reported that IVIg worked better for them (didn’t do much for me). What treatment options have you been using?

      Recovery varies by individual and some have reported complete recoveries within 6 months. Then there are others who have had much less recovery than me. I hope your recovery is quick and complete!

    • vmalave7
      November 10, 2014 at 10:16 pm

      Thanks for your response Jim-LA. They rolled out the MFS and have not really said much about the facial paralysis other then keeping an eye on it. When in the Hospital and while in the ICU unit they started the IVIg for 5 days straight. After about two weeks in the hospital I was trasnfered to a rehilitation center for OT and PT and thats when we noticed even more facial paralysis happen so they figured the IVIg didn’t work for me and tried the Plasma Exchange. My body didn’t take to well to the donated plasma and I ended up almost in a comma. They then just did the PE with the senthetic liquid which I was fine with and apparently help some since I was starting to slowly improve strength wise. Since then I haven’t had any additional treatments other then PT and OT. I did have a slight relapse about two months after being in the hospital but was able to get back to recovering fairly slowly. Its been a long year but I’m still slowly improving with occasional sets backs as mentioned above. I’m not sure if I should talk to my doctor about doing another IVIg or PE to see if that would help with the facial paralysis. Thank you for the encouragement!

    • Seany
      November 11, 2014 at 3:05 pm

      I was also diagnosed with GBS in February 2014. I couldn’t stand up and, at its worst, my swallowing was labored and my resting heart rate was in the 30s. I spent a week in ICU and another week in rehabilitation. I’m now stronger than ever, but there are still lingering signs. To your question, the right side of my face became paralyzed during the onset. It’s gotten much better and, while virtually undetectable by others, is still in that 95% range. With facial movements being so fine – that last 5% at times still feels like a chasm. I am hoping that it will just improve in time – again, it has gotten better, and so I’m hoping it just continues going that way. Good luck.