Referral to LGI

[Lilbob]

Hi all, have just got my referral for Leeds general infirmary ENT for October with Mr Verma, any feedback would be good!!!

Thanks

[Emmasnog]

Morning Lilbob, I've also recently been diagnosed with an AN and I'm seeing Mr Verma 3rd September, I know nothing about my AN as my go didn't know anything about them. I've recently joined a support group on Facebook called British Acoustic Neuroma support group, it's great, they're very helpful and knowledgable, a few are also seeing Mr Verma at LGI in October x

[Lilbob in reply to Emmasnog]

Hi Emmasnog, sorry for the late reply, I'm self employed and been very busy of late. I hope everything goes well with Mr Verma, I hadn't heard of him before, only Mr Kelly hence me trying to find out about him. It's funny when I was first diagnosed I started googling for info and it sounded a rare thing, then I found this forum and found there are so many people going through or having been through the same thing you all put things into perspective and more relaxed about what's happening. I'll have to look into the support group when I get a minute.

Thanks

[maggieL]

Hi, I was diagnosed 3 and a half years ago with a 12mm Right side AN. I saw Mr Verma and Mr Kelly at LGI and was put on watch and wait with annual MRI scans as my AN is considered small. I have had little or no further growth to my AN so far and my symptoms of deafness and tinnitus remain the same. I had hearing tests and have been fitted with hearing aids which help. My next scan is due October 2019 and if that also shows no growth I will be put on 5 year scans. So fingers crossed. It is all about the size and position of your AN and each person is different with surgery or gamma knife options if your AN is considered active or large. Watch and wait is the most likely outcome as AN's are usually slow growing so nothing usually needs to be done in a hurry. You will be looked after well at LGI my only concern was that the MRI results can be slow so you may need to contact Mr Vermas secretary or your skull base nurse to speed things up.

As Emmasnog says the facebook BANA group is very helpful. There are a few of us with LGI on there and they hold regular support group meetings in Leeds, sometimes with guest speakers which are quite interesting events. Good luck with your AN journey and dont worry. Mags x

[Elsafrozen in reply to maggieL]

Hi my husband was diagnosed one year ago and has just had results from 12month scan showing growth of 1to2 mm, he is working and getting on with life I seem to be more anxious, could you let me know the details of the support group please, thanks, Carol Vaux

[maggieL in reply to Elsafrozen]

Hi Carol,

Contact is through the BANA website and their facebook page there is an annual subscription to join (think this is £21). It is available to AN sufferers and their family for information and support and gives access to online information and the closed facebook group where fellow members can give help and advice which only fellow sufferers can answer as GP's dont usually know much about AN. The Leeds support group is run by Mark Leadbeater.

bana-uk.com/membership/star...

Regards Mags

[Lilbob in reply to maggieL]

Hi Mags, thanks for your reply, sorry for late response, as I've told Emmasnog being self employed I've been very busy (still am to be honest)

I've joined BANA and seen quite a bit of useful info once I've seen Mr Verma and know a bit more I'll let you know. My local Ent consultant gave me a hearing aid for my left ear (thats the one with severe tinnitus and hearing loss) but audiology told me not to wear it at work as I work in a noisy atmosphere and wear ear defenders most of the day, I just can't get used to them, things seem too loud and make the tinnitus worse. I've always struggled if there's background noise to keep up with a conversation and the hearing aids don't seem to help, makes it worse if I'm honest. I know when I first started with tinnitus in 2001 audiology tried white noise emitters and they gave me the same problem so I've stopped wearing it at the moment. I under stand what you mean about things going slowly, by the time I've seen Mr Verma it will have been just short of 4 months since my local ENT consultant sent the referral, I called LGI oppointmants after about 2 months and they told me they had received an Emergancy referral it took another few weeks before I got the appointment, I came to the conclusion it wasn't an emergency or it would have been quicker so I feel better about that. So not long now.

Thanks

[Debbsj in reply to Lilbob]

Hi Lilbob I have also been diagnosed after an MRI with an 11mm AN in July of this year and waiting for my appointment at the LGI. I would be interested to hear what symptoms you have. I am now totally deaf I left ear with slight numbness and finding now I have sessions of being off balance and suffering constant headaches. It would be good to hear people's symptoms with the same size tumour.

[Emmasnog in reply to Debbsj]

Hi Debbsj, I have no hearing loss, some ringing in the ear, balance and dizziness is my issue, I'm also under LGI. They are monitoring my 14mm AN till next Juky to see the rate of growth. They want to preserve my hearing for as long as possible. I was hospitalised in January for two weeks with severe dizziness, was given a ct scan and tested for stroke, bleeding on the brain, meningitis and encephalitis all came back negative, the ct scan didn't pick up the tumour. I was under the ent for vertigo but I was still experiencing bad symposium so in July I got the MRI which picked the thing up xx

[Debbsj in reply to Emmasnog]

I'm still waiting to see a specialist. The dizziness and balance along with feeling nausious is really getting to me.

[DavNK in reply to Debbsj]

I, too, have similar issues. 8mm VS diagnosed recently. Small but wrecking havok. I don't have (noticeable) hearing loss yet but am sure that'll come (I have started feeling more 'blocked' and some pain in the ear + more tinnitus which I almost never felt in the past).

I started feeling lightheaded and unbalanced about 3 months ago. Nothing too bad initially; mostly noticed when I was crossing the road etc. This has progressed to constant, more severe dizziness every single moment of every single day. My only respite was lying flat down but unfortunately today even that get snatched away from me with terrible vertigo (room tilting and spinning). I'm also unsure how to cope with this long term... feel so miserable! Sorry that this doesn't offer any solution for you; but just so you know there's someone out there suffering with you too! Hopefully things will turn out well for us somewhere down the line.

[Lilbob in reply to Debbsj]

Hi Debbsj , sorry to hear of your diagnosis. I have only lost part of my hearing on the left side, however my tinnitus has worsened drastically, I too have lots of headaches with some like really intense pain behind the left ear, a bit like stabbing pain but these only last short periods of time, balance isn't always great, but not sure if that's linked or not, dizziness when I stand up occasionally, my left cheek can suddenly start twitching occasionally also and I'm often tired to the point if I sit down quietly I could easily fall asleep, but I don't sleep well on a night as my tinnitus does bother me a lot more then. However none of these may be linked to my AN, I've had tinnitus to a degree for nearly 20 years, had an MRI back in about 2000, after a knock to the head , no AN, the same consultant checked my MRI in June of this year and found one at 11mm. ENT at Harrogate on both occasions, they have been great . When my tinnitus started to worsen my GP referred me to Bradford Royal Infermary they kept cancelling my opponent so after over 12 months of waiting to see someone I asked to be referred to harrogate as they had treated me in the past, lucky for me, I could have still been waiting for an opointment.

I hope you get yours soon.