Facial paralysis after parotidectomy

Hi pf 

I’ve done  a quick search and there are very few people on here with facial nerve trauma. I think the last post was over a year ago. 
It’s a very uncommon thing. I see you have joined the melanoma group. I hope you get more reaction there. 
I hope you continue to recover and good luck with the immunotherapy. I understand that melanoma has a really good response to it. 

I am happy to try and help with any information that may help you. 

My wife had a malignant parotid tumour. This was removed along with her facial nerves. Nerve graft during parotidectomy. 6 weeks of high level 66gy radiotherapy followed.

her eyelid closes with benefit of external eyelid weight. Started at 1.8 g, now only 0.3g

18 month’s post surgery

If you have any questions please ask

Good evening Anon123, thanks for your kind offer of help, if you click on pf-2020 name at the top left (green letters) you should be able to send a friends request where you can talk directly. Thanks again, take care.

                                                                        Chris x

Hi Anon123,

Thanks for taking the trouble to respond and best wishes to your wife in her recovery. It sounds like the procedure on her facial nerve was far more serious than mine.  

In my case the nerve wasn’t damaged, it was just ‘disturbed’ as the surgeon was able to work around it. I’m now just more than three months post-surgery and have regained some control over my eyelid, which seems to be (very slowly) improving, although I don’t yet have any blink reflex. I still have no movement in the brow and forehead and have very limited movement in the lower lip.

After the surgery I was warned that these things would take time to recover, likely to be three months or so, and was becoming concerned as I was seeing so little change. I wondered whether anyone else could share their experience regarding their recovery period for similar facial nerve trauma.

I have my next follow-up appointment with the surgeon in one week, so hope to find out more then – perhaps I’m being impatient, and three months wasn’t realistic, or perhaps this is will be the new normal for me?

(I’ve not heard of eyelid weights, so will need to do some research.)

Kind regards,

pf

Hi pf 

im sure recovery will come and there seems to be quite a bit already. 
The doctors tend to try to reassure us which I’m not sure is a good idea. 
How many times have we heard the words that Radiotherapy continues to work for two weeks after treatment ends and we will start feeling better? It’s not true. Many of us struggle and feel we are not meeting some preordained target. It would be much more honest to say that most improvements continue for two years and everybody moves at their own pace. 
You’ll get there. Just at your own speed. 

My wife went into surgery not knowing whether her left side facial nerves could be left in place. Unfortunately the Adenoid cystic carcinoma tumour was 6cm and wrapped around the nerves. We knew the surgeons would try a nerve graft during the operation if this proved to be the case. Some 18 months on and their has been gradual improvement apart from the left brow area. The Royal Marsden did all they could during the 7 hour operation and if we had gone to our local consultant he had previously advised that he would not have undertaken a graft. We asked for a second opinion.....

Apparently a gold internal eyelid is often inserted during the surgery but our experienced consultant advised against this as the weight is likely to prove too heavy when nerve recovery takes place. You can purchase external eyelid weights from 0.6g up to 2g. I can provide details if anybody is interested. We got “lucky” insofar as our local hospital had a llama that made my wife some customised weights as well, including the ones below 0.6g. They are stuck on the eyelid with wig tape which I cut to size. 

Time has helped my wife’s graft and I hope that you will see improvement with your damaged nerve. You are bound to be impatient 

I thought I would come back to this thread and post and update in case anyone finds it useful in the future.

The movement of my eyelid and blink reflex steadily improved and is now completely back to normal (this had been my biggest concern). My brow and forehead showed absolutely no improvement until about 4 months post-surgery, then it suddenly started responding and returned back to full movement over the course of two to three weeks.

The lower lip remains as it was and with very little movement. I am told it may improve a little as other muscles around the area adapt.

The surgeon did explain the reason behind the 3-month prediction, but I suspect that Beesuit is spot on about not worrying too much about “meeting preordained targets” and “everyone moves at own pace”.

Thank you to those that responded to my post - it has been very humbling to read what others have, and are going through and I wish you all well.

pf

Hi pf. Thank you so much for revisiting. Your post will give others hope that life returns to some sort of enjoyable normality. I hope you continue to improve and I wish you a very merry Christmas 

Thanks for this update pf, i was very much like this after my surgeries when bits were not working fully but given time and excersise you tend to find that the healing and repairing of the damage slowly takes place at a pace the body can manage. We were only too pleased to offer our help and advice in your earlier posts, This shows we as patients must let the body recover at its own pace. Well done with your continued recovery, wishing you all the best over the festive period, take care.

                                                                   Chris