Symptoms

[Wounded101]

Hello, I had AN removed in 2013, was getting checked every yearly and now every 2/3 years.

I've been getting strange symptoms, thudding (not rhythmic) weird sensation mid forehead and an eerie sound in ear. No headaches or not feeling unwell otherwise.

I've spoken to clinical nurse who's advised she will try to arrange an earlier scan. But in the meantime has anyone else noticed anything of the sort at all?

I've been on Health Unlocked a long time, and definitely feel more people seem to talk about AN than before wonder if people are just more aware of support online or its more common nowadays..

[cbpd]

Same thing here, I've had gammaknife in 2013. Since then the AN had shrinked and then stayed constant, until at least the last MRI in 2019. But I had an increase in tinnitus recently so I'm waiting for an earlier MRI...

Quite stressful, I had sincerely hoped this was something left in the past

[Wounded101 in reply to cbpd]

Thanks for your reply, gives me some perspective as I had gamma knife too, and when I told my consultant initially that I felt increase in tinnitus and symptoms they put it down to anxiety as I recently gave birth. I acknowledged their advice at first, but now 8 months later there seems to be increased symptoms so it's not a case to just be dismissed...

[cbpd in reply to Wounded101]

Yeah, I hope it's just anxiety (as in my case, I've definitely had a pretty bad time the last couple of years with some other health issues).

Did they tell you anything about pregnancy? I have been doing a fertility treatment and I'm a bit scared it may affect neurinomas as I've read people online mentioning effects of pregnancy/hormones. I've spoken to both the neurologist and the andrologist and they both seem dismissive, but I have the feeling not much is actually know about any possible correlations...

Well, I guess in any case I'd try to get an MRI asap if you can, hopefully just for your piece of mind

[Wounded101 in reply to cbpd]

No I wasn't told anything at all and didn't expect it to change anything. However, after feeling symptoms and searching online seems I'm not alone to be feeling this way. And likewise, when discussed with GP and consultant both dismissed as anxiety which I for sure do not agree with. With yourself, did you feel extra tinnitus with anxiety?

[cbpd in reply to Wounded101]

My extra tinnitus just started a few weeks ago and I'm not sure if it's due to anxiety or to re-growth yet. I hope it's "just" anxiety (I have had surgery for another cancer unrelated to the AN last year and I definitely have been experiencing anxiety/stress). It's just too many things at the same time and I'm not sure anybody really knows what influences what else

[cbpd in reply to cbpd]

But in general I think if there is any change in symptoms related to AN (tinnitus, hearing loss, etc) they should really offer an MRI as first thing...

[Wounded101 in reply to cbpd]

Thank you, I appreciate your reply. It helps to know I'm not alone. I've been told my nearest neuro team at Leeds are only booking emergency MRI until the new year so I can't be expecting a scan anytime soon, just trying not to think too much about it in the meantime.

[cbpd in reply to Wounded101]

Fingers crossed, then!

[cbpd in reply to cbpd]

FYI I've done a round of doctor calls (two neurosurgeons, two andrologists - in Italy you typically can just phone hospital departments). They all told me that sexual hormones should not affect neurinomas, though nothing in medicine is ever 100% certain.

Not sure if there's a difference between a male fertilty treatment and pregnancy for women, but just thought I'd let in you know in case it brings some reassurance

[Wounded101 in reply to cbpd]

Thank you for that, every little bit helps and gives that bit of hope. Had a call today saying I should expect a letter for an MRI appointment in the coming weeks. Looking forward and dreading all the same!

[cbpd in reply to Wounded101]

Just got the MRI result - all good, AN unchanged!

Fingers crossed all goes well with you too!

[Wounded101 in reply to cbpd]

Ah yessss so good to hear !!

[Kristyll]

It happens when the nearby nerves are being irritated, may by growth or just because like when we get a twitchy mouth or eye before any of this. It is always best to get it chrcked

[Lois_Howell]

My AN was surgically removed16 years ago and I’ve had no follow up scans or monitoring since my discharge 3 months post op. I’ve continued to have left side tinnitus, numbness and tingling on that side of face. Recently it has become more extensive and a dull ache/ pressure sensation has developed. Contacted GP who’s referred me to ENT dept and ordered an MRI. ENT app come through for next May 😫. Good luck with your referral, hope it’s more timely than mine!

[cbpd in reply to Lois_Howell]

wow, no MRI at all for 16 years after surgery?

[Wounded101 in reply to cbpd]

Wow May! That's quite a long time! I don't suppose I should keep my expectations high then 🥲

[Hidden]

Hopefully you will not be waiting too long. I've been on the waiting list since May this year - this is just to see the consultant then have to be referred for MRI etc. No sign of any appointment yet according to the hospital secretary and my GP. Just keep waiting I guess....

[Wounded101 in reply to Hidden]

I first called around 8 months ago, they simply reassured saying anxiety etc. But more recently when I've called several times during the month they've responded better.

[Kkk7]

HelloMy AN removed in 2015 yearly I was doing MRI that was clear last mri done in August 2019 I am feeling muscle twitches on face after covid after some medications it's fine but really worried hope it's not growing again mri due soon bt due to anxeity I am not comfortable with mri hope all goes well also frequent migraine issue

[Wounded101 in reply to Kkk7]

Hello, my query is the same, I have read tinnitus increases with stress so I'm holding onto this, hopeful were all OK really but just anxious

[6625]

Hi I had surgery to debulk a 28mm AN 5 years ago,hadn't been for MRI scan for 2 years ,had some pain in right ear n fuzzy like headaches..scan showed AN has began to grow again I'm going for stereotactic radiotherapy on 7th December

[Kkk7 in reply to 6625]

When was your last MRI done and what's the size of tumor first time it detected and current one

[6625 in reply to Kkk7]

I was scanned in 2019 they then put me on every 2 years so had scan Sept...my AN was 28mm before surgery to debulk it ,it shrunk to 10 mm but last scan showed it had grown maybe bout 4mm .I had stereotactic radiotherapy yesterday

[Kkk7 in reply to 6625]

Hope you are doing well post op all scan was clear for me but from last 2 mth I am having muscle twitch sometime eye lid twitch some time cheeks so scared hope AN is not grown..how was your experience for stereotactic radiotheapy...

[6625 in reply to Kkk7]

Hi all went well with stereotactic radiotherapy yesterday it was bit scary and was just feeling tired afterwards just waiting to see if n when side effects kick in but I'm keeping my fingers crossed

[Kristyll]

Hi do you feel it could be caused by Tinnitus, it sounds a bit familiar x

[Wounded101 in reply to Kristyll]

Thank yiu for your reply, do you feel occasional thuds, so not regular but just maybe like few times on random days. Or other times thuds for a few moments

[Kristyll in reply to Wounded101]

Very random once it felt like someone forcing stiff beads across an abacus each thud creaked, but that has now gone x