Facial paralysis - has anyone experienced it?

[EwaW]

My partner's neuroma is just over 2cm, he got diagnosed this year. He has progressing hear loss and tinnitus in one ear, fatigue which really affects his work, and has recently said he feels numbness and tingling on the side of his face where the neuroma is.

We are terrified, to say the least, that the facial nerve related symptoms will progress further. He only had 1 MRI so far, and he will get another one in 2 months' time to compare.

What are your experiences with facial numbness, muscle weakness, paralysis? I understand this will have implications for speaking and swallowing too?

It's absolutely terrifying, isn't it?

[Kristyll]

Await the scan in two months and you will know especially due to symptoms if the AN has grown symptoms you describe are often a sign of further growth but it is best to find out exactly what you are dealing with, good luck x

[Bridgesofmaddison]

It is so scarey not knowing what’s going on. My symptoms and neuroma size were the same. I had surgery last September as the tumour had become fast growing . The numbness and tingling in my face has remained but it is no worse. The same with tinnitus. The doctors are amazing and are keeping a very close watch with a scan in 2 months so try not to worry too much.

[Frizby]

I had tingling / loss of sensation in lower right lip that prompted my visit to A&E where AN approximately 20 x30mm was diagnosed. Three weeks later I had it out. I’ve been left with partial facial palsy that after 6 months is slowly getting better. Had tinnitus and partial hearing loss in right side for 10 years prior that I had put down to noise exposure, Almost totally deaf in right side following AN removal. Won’t say it’s been a walk in the park as I am very independent and it has come as bit of a shock

[Knittedfun]

I have a 2.9 and have some facial numbness . My second MRI is at the end of November .

[Kristyll]

Sometimes it is temporary, it depends which nerves I is close too. Let’s hope it improves when you are all sorted but I would report it. Good luck x

[EwaW]

Thank you everyone.

Frizby, best of luck with your recovery. I watched a video of the actor Mark Ruffalo who also had his acoustic neuroma surgically removed and recovered after 10 months. I think he was doing acupuncture, not sure if this helped or the recovery would've happened anyway.

[Myangel95-12]

Hi, I also had facial paralysis it didn’t last too long.. was temporary due to the position and nerve being depressed… after a few weeks it eased and now I only have slight weakness around the eye and a small weakness when I smile but no one notices I just feel it and can see it if I look for it… I had no issues with swallowing and my speech was only like I had a lisp… I do now and again when really tired get a slight runny eye. Hope your husband is ok and you both coping just ask as many questions you feel you need answering when you see the consultant.

Very scary I remember I was 33 and thinking my life was over xx

[EwaW in reply to Myangel95-12]

Thank you, and I'm so glad you mostly recovered! 33 is so young to get it, though it probably doesn't get any better with age. Could I clarify if you experienced it before or after the surgery, if you had one? Thank you. X

[Myangel95-12 in reply to EwaW]

I have had no intervention at all…. Watch and wait was the recommendation as I was 34 weeks pregnant when I fell ill suddenly couldn’t hear in one ear couldn’t walk properly constantly dizzy and off balance, facial paralysis at the same time lasted a few weeks but then sorted its self out…this was before the diagnosis 9 months it took for them to finally diagnose me, after 5 months of begging my GP for an MRI who repeatedly requested but the hospital consultant was reluctant to do until every other possible treatment had been explored ie; Bell’s palsy, huntingdons syndrome or similar, imbalance of brain fluids etc etc finally gave me the scan and was immediately sent to specialist at addenbrookes, who actually have no explanation of why I got it as was unusual in my age group and as I was healthy and fit just the day before… they put it down to stressful traumatic events and recommended a stress free life… 5 kids 2 with disabilities was never going to be stress free…. However since this I have had a major traumatic event and had no change in the 3 years past… await results of this yrs scan now so we shall see what happens… hope u are able to get treatment and feel as well as you can asap….. good luck xx

[EwaW in reply to Myangel95-12]

Hi, thank you for your reply, and sorry that you had to wait for so long for your diagnosis, that's outrageous. Thankfully my partner's GP referred him to an ENT surgeon the same day - we had to wait for 2 months for an MRI and an appointment but at least we didn't have to fight for it, I'm genuinely shocked by your experience. One thing that his consultant stressed is that it is not known what causes acoustic neuroma, and there is nothing that he can do, or should stop doing to make it better (or to have prevented it for that matter). It's sporadic, extremely rare and it's interesting that your consultant put it down to stress. Good luck to you too xx

[Myangel95-12 in reply to EwaW]

I know, he probably said that after reading my GP file I was in a violent relationship yrs before and lived on constant adrenaline through fear… but who knows thing move on they learn new things about conditions at least I’m here and living the best I can… hope they get your hubby sorted ASAP… xx

[musicman5]

I had a craniotomy to remove my AN 7 weeks ago which had grown to 4.5 centimeters and was pressing down on my brain stem. Since the surgery, I've experiences facial paralysis on the left side which was where the tumor was located, and also haven't been able to close/blink my eye since the surgery which, of course, I'm hoping will improve with time. Take care and best wishes!

[EwaW in reply to musicman5]

Thank you for sharing! Yes, I also hope this improves for you, some people have experienced it and recovered totally or mostly. I also saw a video of a woman who had an operation on her eye so she could blink it which seemed to have worked really well. Not sure where she was based though. Best of luck with your recovery.

[musicman5 in reply to EwaW]

Thank you so much for the response! My eye issue and facial paralysis are the most worrisome post-surgery side effects so but but I'm hoping for improvement in a few months.

[Lois_Howell]

16 years ago my AN was 1st diagnosed at just under 3cm. I’d ignored numbness/tingling sensations for more than two years but 5 months previously I couldn’t deny there was a problem. I was fortunate to have private health cover as my GP was reluctant to refer me to a specialist, he wanted to prescribe steroids and anti-depressants 😫. Wonderful consultant removed surgically and, yes, left ear drum was ‘sacrificed’. I’ve just turned 70 and have adapted to managing the tinnitus, deafness, tingling, balance issues with minimal difficulty. No speech probs, mobility fine even one side deafness has its advantages (selective hearing can be useful).Unfortunately, in recent months, the tingling has worsened and become more extensive so I’m awaiting an MRI to see if it’s regrown. I’m strangely calm and accepting that it could be kicking off again. In USA it’s common for follow up MRIs to be carried out routinely, 5% chance of re growth isn’t too bad odds and if the news is bad at least I’ve had a good 16 year stint and I’m not thinking of worst case scenario as yet. 🤞