Just been diagnosed wth AN and feelin... - Acoustic Neuroma ...
Just been diagnosed wth AN and feeling a bit scared. After treatment Why is the recovery period, 12 weeks so long?
Sorry to hear you have been diagnosed with an AN - you are sure to be scared but keep in mind that it is very treatable. Unless your AN is very large you may well be offered radiation treatment where the recovery period is much shorter. Also if your AN is small you may not need treatment at all but could be monitored and only treated if the AN grows. It is a very confusing time but there is no rush to make a decision so make sure you explore all avenues. 12 weeks recovery after major surgery isn't that long really. Some people are under general anesthetic for between 6 and 14 hours so it will obviously take time for the body and brain to recover from that. If your balance is affected post surgery you will obviously have to give your brain time to adjust and if the surgery causes you to lose your hearing on the affected side this will also take a while for your brain to sort out.
For more support and information please consider joining BANA by visiting their website at bana-uk.com
I do wish you luck on your AN journey and remember - you are not alone. Let us know how you get on.
Hi. Many thanks for your reply. Sounds like good advice and I will join BANA as I hink I will have one or two more questions!!. Thank you
I was diagnosed 18months ago and am on the wait and see road. Am not sure at what stage treatment will commence but am now having some visual disturbance looked into.
From what I have read, recovery depends on what type of treatment you are given. If its an op I think balance and general fatigue could be an issue for a while. Hope all goes well for you, and me too.
It's a very complex question and you need to do a LOT of research before deciding what to do. The simple answer is that IF you opt for surgery, it takes a long time to recover from any brain surgery - even the effects of the anesthetic can take a year to go, let alone the fact that your skull has been opened.
More broadly, there are three families of options.
1 Watch and Wait - This doesn't mean "Ignore it, it will go away" - It means regular scans and observation of symptoms whilst doing research to ensure you are ready when the time comes for treatment - That said, I know many people who have done this for 10 years or more and they are still no closer to needing treatment. Several of them now confidently expect never to heed treatment
2 Surgery - There are a range of surgical options each of which has it's own risks. Most will render you 100% deaf on the AN side. Some trade the certainty of deafness for a higher risk of facial paresis.
3 Radio-treatments. There are also a range of these - again each option carried its own set of risks but they are generally much less serious - however, not all ANs can be treated by these methods. These are normally outpatient treatments. Some of these will even preserve your remaining hearing (if you are suitable).
Please spend the next few weeks at least (and possibly months and years depending on your AN size and position) educating yourself on Acoustic Neuroma and its possible treatments - Start here for a patient friendly introduction anworld.com/ as others have said, join BANA and there are also AN Facebook groups which can be helpful.
Good luck.
Hi, I was diagnosed last December.My neighbour had throat cancer last year and I went to get myself checked out as I had a slight intermittent cough
the ENT consultant asked me if I had any other problems and I mentioned a "little bit of tinnitus" in my right ear which I thought may be related to side effect of my job
Went for MRI scan and AN discovered in December.
Went to Aintree for further consult and have just had repeat MRI in August,
Lesion remains same size, - under 1mm and am now on 12 month review
FWIW, I forgot that i have been paying into a Critical Illness policy for last 15 years (only remembered when the annual yearly premium was reviewed)
. Submitted a claim and they paid out so Insurance companies take it seriously - although it is a rare condition
I am still working but will take my pension next year (that's another story - only doing it before HMG taxes pensions) and will coontinue to work full time for as long as possible
Good luck with yours
Incidentally, Should I require treatment, I will most probably go for radiotherapy as don't want my skull cracked open with all the possible side effects. I work as a surgeon (not Neuro/ENT) in the NHS and will take my chances with radiotherapy
hi paul, my an is 15mmx17mm and I have my first meeting with consultant at Leeds General Infirmary on 18th November. I wanted to ask your opinion on radiotherapy, I am interested that you say you would choose this over surgery? To be honest I was hoping to push for surgery, just get it out! Radiotherapy worries me re damage to surrounding areas and damage to tissue on way to tumour? I am being silly? Welcome your thoughts.
Also I am glad your AN is still small and just being monitored, hopefully you will not need any treatment at all!! x
Hi sorry to hear that you have AN. i had mine removed in 2003 and was never told what the after effects would be, at least not all of them. it is tru that depending on your treatment, type of surgery etc would result in your after effect. mine was about 3 cm and my facial nerve was severed. So as a result i am deaf on the side of the AN and also some facial paralysis,also a dry eye, so i have been using tears for the past ten years. Normally i try not to talk about this too much but if my response would help in letting you know what could happen or may not happen i am willing to help. all in all i do thank God that i came through alive and no brain damage cuz my surgery lasted 12 hours. God has been great and life is wonderful despite the physical challenges, i always say it could have been worse. feel free to contact me for any further questions you may have. Blessings and Good luck
Hi Jacquee, sorry to comment on your reply to someone else! I just wondered if you could tell me how big your AN was? mine is 15x17mm and I am waiting for my first meeting with consultant and was thinking of pushing for surgery to just get rid of the tumour, I seem to be feeling worse knowing its there. I have lost most of my hearing on the affected side and have tinnitus and balance issues. Since diagnosis 6 weeks ago I am experiencing headaches and earaches frequently, and last weekend got a really bad throat and came out in a rash all over, it felt so raw I couldn't even stand my clothes on, then it just went, AN or not? x
heyyyy sorry for my very late response. my AN was 3 cm< sorry about all those things you are experiencing. i do hope and pray all goes well. sometimes i wonder how on earth these things happen. Anyway all the best to you
Hi, i had my surgery on 17th June so 12 weeks (11 hours in theatre - 6 days in hospital) on i can tell you that you will probably need it! I am just starting back at work but not on full time yet. I didnt understand how it could make you feel so tired all the time but it does and still does (although no where near as much as before).
However to look at me now you would would probably not know i had had the op except for the small bit of scar just under my ear and the fact ill ignore you if you talk in my left ear.
Best of luck with whatever you decide to do.
Thanks very much for your experience : I just got manup to it and tough it out eh! Good luck JF
Dunno about that Fox1e!I dont think i was particurlary manned up at the time !
