My first post :).
I am about nine weeks since my diagnosis of Stage 3 malignant melanoma (I have put some details in my profile so won’t repeat it here), and have been lurking in the forums for the past few weeks and finding lots of useful information so thank-you to all the contributors!
I am experiencing right sided facial paralysis after the parotidectomy. This was not unexpected and due to the facial nerve being moved during the surgery. My surgeon reassures me that the nerve was not damaged, and to expect it to take some time (three months was mentioned) to recover.
I am now approaching eight weeks since the surgery and I have seen improvements in some areas, but not in others:
I would be interested if any in the forum have experience of this that they might share and if so, how long it took for movement to return or if there were any permanent paralysis.
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.
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.)
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
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2020
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: 668265007