Hi everyone,
I wonder if anybody has any insight into surgery for facial paralysis caused by GBS at all?!
I’m currently about 11 weeks into recovery from GBS. Whilst my legs seem to be recovering, with numbness and a lot of muscle wastage, one side of my face is still motionless. I saw the neurologist yesterday and for the first time he mentioned surgery … which he immediately said has only a 50% success rate and could leave me worse than I am. So he wasn’t exactly recommending it, but just putting it out there! I live in Hong Kong and he doesn’t think such an operation has been done here - so I’m a bit stuck for information. From what I see on google they might be able to “mimic” a smile. Certainly that is a big deal for me, but the main thing is speech which I’m finding difficult and painful as it really stresses the better side of my face. I’m still hoping and praying for some kind of spontaneous recovery and going a lot of physio. I feel I should definitely start to look at what might be available though, just to be fully informed.
If anybody has any info or advice it would be much appreciated! I’ve had a couple of interactions here with very positive people who seem to have had some degree of recovery from this which has been so helpful:) But I’m wondering now whether anyone else has had thoughts of going down the surgical route? I actually hate the thought of surgery!
Thank you and wishing you all healthy outcomes!
Vicky
Hi Vicky, I recategorized this into “General GBS Discussion” so hopefully more people see it!
Hi Vicky. While I didn’t have any facial involvement, other than a few muscle tics, during my initial recovery I do have a foot that doesn’t work. 11 weeks is really early in the recovery process. I’m just over a year out from diagnosis and I’m still having spontaneous recovery little by little. Initially I had no movement or control in my left leg below the knee. Just a few weeks ago a muscle in my arch came under conscious control so I could move my foot an inch or so to the right. Then last week while trying to move my foot (as I do every night) my wife and I both saw a slight upward movement of my foot. It wasn’t much, maybe an eighth or sixteenth of an inch but it was definitely there. What I’m saying is you are still very early in the process, full recovery can take 2-3 years or longer. Do your research on the surgical option but I wouldn’t rush into anything for awhile.
Hello Mark
Thank you so much for your reply and sharing your experience:) After a year it must feel like a small miracle getting some movement and control back. Well done! I hope it continues to improve and that you get a full recovery. It seems such a long journey.
You are right, I’m probably jumping the gun even vaguely considering surgical options. There is not a lot of evidence for the facial paralysis with GBS so I guess my neurologist was just putting it out there and of course I feel I owe it to myself to look into it. Since I wrote my post I’ve had a bit of progress! Last Monday I got some tiny movement back in my cheek… and it’s increased over the days! It’s still a long way to go but it looks as though the surgery for a smile might not be necessary. So your words seem prophetic! I think I’m just so anxious for a result after so much physio etc… but this is the motivation I needed:) I need to be more patient I’m sure.
Anyway, thank you again and wishing you all the best for your progress back to full movement I hope.
Vicky
That’s great to hear you are seeing some recovery. Yes, patience is a virtue that is in short supply when parts of your body don’t work but it is oh so important. When I was wheelchair bound, and even when I was using a walker, my impatience and desire to be “normal” contributed to my problems with depression.
My face and speech were both affected but not permanently. I’m 2 years out and have improved tremendously. I have found that my face bounced back like my legs did but I had a milder GBS case. I had trouble initially with my vision because of the muscles in my face which altered the tracking of my eyes. I have noticed deficits with this at times of overdoing it but with specialized PT I have been able to recover pretty well. In my first 6 months, I made great strides with recovery so I feel you have a great chance of doing the same since you are pretty early in your recovery. I think it depends on the severity of the damage but even at that I hear of significant improvements. I have still continued to recover and I just reached my 2 year mark. I will say that I had physical therapy to help me with my legs and hand weakness but they did not know how to help with my cranial nerve issues. I later found a PT who specialized in vestibular and balance disorders and helped me fix those problems. So, if you are having problems that aren’t addressed by one, there may be someone else who specializes in another area. Stay strong and keep up the good recovery!