Facial drop and AN

[Smiffy65]

I completed 6 weeks radiotherapy for a 2.5cm AN back in 2021 and am due my next MRI on 11th Jan with follow up consultant appointment at end of Feb. Pre and post the radiotherapy I've always had facial numbness and twitches / ticks but these have now started to increase in regularity and extent rather than calm down as I thought they would. Now the whole side of my face can contort and drop for a few minutes before it finally goes back again. This morning I had the worst one yet brought on by blowing my nose of all things. My eye closed and dragged down entirely and my mouth dropped. It seemed to last ages and I went into panic mode but it was probably only 5 mins before it righted itself. My husband wants me to see my GP but I can't see that they can do anything and I have my consultant appointment soon anyway but should I be worried? They are getting worse so what if the next time my face doesn't go back?! Has this happened to anyone else? Any advice ahead of my Feb appointment would be appreciated.Thank you

[Colejoe1]

Hi

I had the same symptoms as you with a 3cm AN and was told surgery was the only option due to radiotherapy causing initial swelling, so maybe it’s the swelling that’s worsening your symptoms.

You could contact your specialist nurse and try get mri brought forward. I had routine mri 31st October and still awaiting results

[Smiffy65 in reply to Colejoe1]

Thanks Joe. Was hoping the swelling would have calmed down by now but maybe not as you say. It's only 11 days to my next MRI so I'll hold on in there. Does anything in particular set off your faces spasms? Do they last long? Mine seem to come from nowhere.Good luck with your MRI results

[Colejoe1 in reply to Smiffy65]

I haven’t had them since having surgery to de bulk the tumour mine used to really hurt due to the AN pressing on the trigeminal nerve it could just come on when talking

[Smiffy65 in reply to Colejoe1]

Thanks Joe. I'll see what they say after my next MRI. Hopefully just as a result of swelling as you said. Thanks for taking the time out to reply

[MitzyAnn]

I am no expert at all but I did see this interesting interview with Mark Ruffalo the USA actor who describes his journey. From about 15 minutes into the video he starts talking about his recovery. He was using acupuncture to try and help the facial paralysis that he had. It suddenly started improving. I won't put the link here in case I'm not allowed to but it is on YouTube entitled 'Acoustic Neuroma - Mark Ruffalo's Story - 2013'.

[Smiffy65 in reply to MitzyAnn]

Thank you! I will have a look now. Acupuncture is something that I hadn't thought of before but would certainly make sense and I'd be really open to giving it a try. Thanks for taking the time out to reply

[MitzyAnn]

No problem. I really hope things improve.

[LikeBillyo]

I had gamma knife in September 2021, and have recently had my 1 year post-op scan and consultation. Some of my symptoms have worsened slightly since my op. I've developed a quite severe spasm/twitch in my eye (my tumour side) and also an intermittent hand tremor. My balance is a bit worse too.

My consultant thinks that this tallies with the very slight increase in tumour size, which he says is quite common post operative swelling. I've been referred to opthalmology and given balance exercises. The rest is W&W until next September. Fingers crossed!

[Smiffy65 in reply to LikeBillyo]

Thanks for the reply. I finished my radiotherapy about 8 months before your gamma ray and am almost to the 2 year mark so was hoping that the swelling would have calmed down by now. I've also gone from a face twitch to looking like I'm having a stroke but hoping that it is just continued swelling then. Hope your referrals go ok. Good luck

[flappers]

I was told that swelling can occur up to three years! Really hope yours settles down and your mind can be put at rest after the next scan. I am only 7 months in from 3 sessions on my 2.5cm guest, had the same twitches and facial numbness at the 3 month stage, but that settled after a few weeks again, i was told afterwards I could have had some steroids if I had been able to get hold of my specialist nurse. But I was over the worst of it by the time I spoke to her so chose not to. Off to Thailand for a month now so hoping it stays nice and quiet!!

[Smiffy65 in reply to flappers]

Hi flappers. Apologies late reply, I've had Covid and it's knocked me for six.Thanks for sharing about the 3 year mark, I had no idea it could go on for that long. Steroid part noted too, thanks.

Weirdly since covid my face has got worse to the extent that my GP sent me to a&e to double check it wasn't a stroke. Confirmed it was just my AN but my face is now regularly spasming. Just have to wait and see what my next consultant appointment brings, not too long to wait.

Have a lovely trip and hope things stay quiet for you on the AN front!