I was diagnosed in December 2018 with a 3cm AN, it was losing hearing in one ear (right) that prompted the ENT doctor to send me for an MRI. I had noticed symptoms for at least four years of slight imbalance, strange hearing sensations, strange facial and tongue sensations. All of which varied in strength and would come and go. I have only lost 20% of hearing in that ear.
I have to have translabyrinthine surgery (through the ear) due to size and location which means I will completely lose all hearing in that ear.
I went for a second opinion which agreed with the first so I know this is what I have to do. Radiation is not an option due to the size and possible swelling during treatment.
I have done a lot of research on internet, medical articles, and asked many questions to my medical team, whom I’ve met over the last two days (I live in the Netherlands and will go to LUMC), I feel as well informed as I can, and as I need to, be.
I am doing guided pre-operation meditations which are amazing at keeping any feelings of worry about the op. at bay, I have resigned myself to one sided deafness but think after the op. when I am actually living the reality I will mourn the loss (briefly I hope), but in my mind I don’t think it is it that terrible a thing to happen.
My operation is this Monday, 1st April, I will update afterwards as to how how recovery goes and how the symptoms are, I understand that the body can keep recovering for up to a year so if I have any facial palsy/headaches etc. I believe it will be temporary and can still go up to a year after..
Best wishes to all of you wherever you are in your AN story!
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Silversmith2000
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Good luck for Monday xx I had Cyberknife on my AN and have lost all hearing on my left side at first it is quite confronting but l have adjusted to one sided hearing and so will you be patient with yourself keep us updated on your progress xx
Good luck for Monday. I had Gamma Knife Surgery, my AN was 2.35 cm. I had lost a lot of my hearing in that ear and now have a hearing aid which I find helpful as I suffer with tinnitus. The tinnitus isn’t as bad when I have the hearing aid in. Take care, I am sure everything will be fine.
Good luck for tomorrow. It sounds like you have taken control of things to the best of your ability and accepted that which cannot be avoided... it seems you head into this operation with the best possible mindset. What is normal for you now, will not be normal ever again, but tomorrow you adopt a new normal and you adapt and evolve to deal with it. There will be many moments of frustration thanks to SSD, but there are silver linings too... putting an earplug in my good ear when my boys are arguing is my particular favourite.
Not something to look forward to but something that needs to be done. Best of luck with your surgery. I had three tumours removed in 1987. The surgeon thought he'd saved the acoustic nerve but I'm still waiting! I've just bought a new cross hearing aid which transmits sound from my left side into my right (good) ear. It means I can hear a car approaching or people saying things on my deaf side. I had an NHS one with a cable running across from one ear to the other but after 30 years with that one I have bought one without wires which works well but was rather expensive. Still getting used to it! Sleep well tonite! Keith
Good luck on your surgery. Try to think positive about your situation and your doctor's great call in sending you for an MRI. You too often hear about patients complaining to doctors about symptoms and the doctors discounting their concerns and not ordering proper tests. So in that respect you have already received good care that prevented further growth of the AN. My husband had the translabrynth method and it was quite successful. So far, in 5 years of follow up MRIs, it is still completely gone. My husband has hearing aids which amplifies his hearing in his good ear (his left) and the hearing aid he wears in the deaf ear transmits sounds coming at him from his right side to his good ear. Now, when he's driving and I'm on his right side in the car, he can hear me! Sounds like your doctor has given careful consideration to what is best for you. Best wishes for a successful outcome!
Hope everything goes ok I had a acoustic neuroma when I was 23 I had a big tumour so I had to have brain surgery they cut the back of my ear through my skull and after 15 hours of surgery they removed it but it didn’t go to well they had to cut the nerves in my face so I’m left with a palsy now and I’m deaf in one ear I suffered my years accepting my palsy but you have to stay strong and try and be positive I’m 44 now and married and I have had a son.
Hello I also had AN when I was 26 removed in 2015 it was huge so they cut the nerve so got palsy and deaf in 1 ear completely just want to know how often u go for mri mine was yearly bt now onwards every 2 yrs also I dnt have tears in AN side eye just want to know do u have any migraine issue it just started 2 yrs back and anxeity issue also.
Good luck for tomorrow I had a acoustic neoroma 21 years ago I’m left with a facial palsy and deaf in one ear it’s the hardest thing I’ve ever been through but u have to stay strong and be strong.
Just picked this a few days after you would have had surgery. I hope it went well. Really inspiring to hear other people’s journeys like yours which loaded with such positivity. Thinking of you.
Good Luck, hope all goes well. Bit weird losing hearing in one ear but u do get used to it. Bit disconcerting as unable to tell where (direction) sounds are coming from (BAHA is good for distinguishing where noise is comin from, I’ve found it really useful) - wicked op too.....first Op i’ve had.....awake! Drilled skull, fitted screw, cuppa tea/toast n off, went back wen healed to get BAHA.
Hi, I just posted my update, but back to you... awake whilst they drilled your skull, ugh, how long did it take, did they just anaesthetise that skin area?
Good luck, I am almost deaf in my left ear due to a AN, I find it annoying at times but it's not unbearable, keep us updated on your progress and I hope you make a full and speedy recovery
Hello everyone, sorry for the long delay in providing an update on how operation went.
The operation was very long, 13 hours, this was due to the placement of the tumour around the nerves, this varies from patient to patient. The surgeon told me they removed most of the AN, probably leaving around 1%, which is great!
The facial nerve was preserved (hooray!) and although I have facial palsy now I see slight improvements every day so I’m hopeful for a very good recovery on that. I am doing exercises for this.
I am wearing an eye patch at night as my right is not not quite closing and I have eye drops and gel to keep it moist, again I am confident this will be ok eventually.
I had some post operative problems but these are slowly going away, and I am currently on antibiotics as the skin has gone red around the wound, but these are already helping and the redness is going.
My scalp is still really quite tender and painful from the Mayfield Skull Clamp but I’ve only been on paracetamol since the op, and that is the only source of any pain now.
I haven’t really noticed the one sided deafness yet too much but I’ve only chatted with two people at a time, I think it will be much more noticeable when in a group, we will see!
I was discharged from hospital 4 days after the operation, after I showed I could walk around and use the stairs (albeit slowly and cautiously), my brain quite quickly adapted to using the left balance nerve only so that was great.
I am confident of a good recovery and hope that sharing my experience will help you with your journey. If you have any questions please let me know.
Hello, I have been reading your posts with a lot of interest. I was diagnosed with a 22mm AN in January this year and have a date for the operation on 23 April, at Kings London, so about 4 weeks time. I was told it’s not suitable for radiation as it’s in an awkward place & my symptoms would increase as it will swell. The specialist nurse advised watch&wait but to me this is doing nothing. It will grow, and I will be more debilitated & after talking with a consultant, who told me outcomes and a smaller neuroma were better to remove, I opted to have surgery. I am very very anxious about having surgery, in particular the general anaesthetic.. I’ve never, at the age of 61, been knocked out for an operation and am frightened I will feel it and dream.. what was anaesthetic like for you?
I am worried about recovery too, I have been told they will debulk and preserve the facial nerve, & to expect deafness in the affected ear. I feel unsteady all the time so am interested to read that you had balance exercises to do. Did the hospital give you these to do? What are the pre-op guided meditations? Did you find these online or did the hospital recommend? I very interested in this aspect as I’m so nervous.
It’s very reassuring to read of your good recovery, I hope mine is the same. I hope you are much better now. Thank you for sharing your experience.
Hello B,I can understand you feeling anxious, any operation is daunting, but please remember that your doctors are very skilful!!
The pre-guided meditations helped enormously, and I believe that because I was so relaxed before the op that this helped my recovery (which has been amazing).
During the op I felt and experienced nothing, anestheia these days is a science that is very specialised and works very well so please don’t worry about that, in fact not worrying about anything is key, once you are through the op and on the road to recovery you will wonder why you worried, try and put yourself there mentally so you remove the worry now, have trust in your medical team, they know what they are doing!! The only part you can actively play in this is to prepare yourself mentally to give their work the best recovery outcome.
The guided pre-operation meditations were from googling, I found one with a voice I liked, I paid a few euros for it, the best for me was Jane Erhman. If you can do this everyday for at least two weeks before the op you give your brain the time to learn what it needs to do, and after as well...
I must tell you as well (because myself and my partner were not told), that after a long operation and loosing a sense one can suffer with delirium, I had this for three days, it was very strange but gradually went away and I remember very little about it. I only tell you because if you do get it,you and your family will know what it is and not worry, ask your doctor about it..
The balance exercises in hospital were from them, just moving your eyes around type of thing, my balance is so much better now with just the left side, sometimes when I shut my eyes (like when cleaning my teeth) I feel unsteady but I’m not moving, apart from that I hardly notice it, I still cycle and walk and run...
Also, the single sided deafness isn’t a problem, sometimes I can’t tell where a noise comes from, or can’t hear someone’s voice if there are other noises (like standing next to a boiling kettle). I am way better than I was before the op so keep that in mind. Don’t worry because actually you have nothing to worry about.
Everything will be fine, keep remembering that your medical team are very skilled. Find yourself a guide meditation voice that you like and listen to it everyday, it is also very relaxing !!
Best wishes for your operation.
Do let us know how you get on, although it will quite some days before you are ready for that. I didn’t want to read my phone or anything for days, just rest up and have quietness, no visitors. My partner took great care of me, got me supplements that help nerves to heal, made me whatever I wanted to eat, kept everyone away until I was ready, having that time for me was important, maybe it will be different for you but you must do what suits you best!
You will be ok, the future looks very different this side of the operation 😁
HelloThank you so much for your reply. I know everyone’s experience is very individual but your note is very reassuring to me.
It’s all so very difficult due to covid, all my appointments have been by phone, which I am very grateful for, but it’s not the same as being able to interact with someone face to face.
I will look at the meditation you mentioned. Mostly I’m ok but every now and then I get overwhelmed by it all. I will let you know how I get on, fingers crossed it all goes ahead as planned.
If you haven’t already, start to pack a bag or small case with enough to see you through 5 days in hospital. Obviously the length of your stay could change but this is the basis I have been given. Pre op exercises that I have been given are to exercise by walking atleast 20-30 minutes each day.
Morning I have just started to put a few things together to take to hospital.. difficult at the moment too, as no visitors are allowed so no one to bring grapes! I’ve no idea how long I’ll be in but I thought at least 5 days, maybe up to a week. It still all feels like it’s happening to someone else, I’m finding it quite hard to believe that this is happening to me but the sooner it’s debulked the sooner I can recover. Hope you are well.
That’s the spirit, seeing some positive energy. You’ll be fine. It can be difficult to say the length of stay but it does seem that 5 days is the base timeframe. In my case there’s a lot of if’s which could prolong my stay but I’ll focus on the 5 days for now. I’d be happy to go in on the 6th and come out on the 10th as the 11th is my sons 8th birthday. He would be over the moon if this happens.
So glad to get your update - it sounds as though you have come through everything very well and are coping with the after effects in a positive way. It helps me consider my options for surgery! All the best for the future.
Thank you so much for sharing your story. Your positive attitude is truly commendable and I'm sure it will continue to serve you well during the recovery process.
Your account is really insightful to read about and I'll be sure to relay it to my partner who was recently diagnosed with acoustic neuroma. We are currently playing a bit of a waiting game to see if the tumour grows any further before my partner decides on which option to take i.e. gamma knife or surgery.
If you do not mind sharing, I would be very grateful to learn how your recovery has progressed in the last nine months i.e. has the facial paralysis you were experiencing subsided? etc.
Sorry to hear your partner has an AN, but it is generally not as bad as one first thinks.
My recovery has been amazing, my face has almost completely recovered, you can barely see any unevenness, my right eye unfortunately doesn’t make any tears yet as that tear nerve runs along the facial nerve and is tiny and was understandably damaged during the op, I am hopeful it will recover but in the mean time I use a gel which is very effective, and wind proof glasses when I cycle as I cycle on my commute to work.
My balance is better than before the op so no problems there 👍
I don’t notice the one sided deafness too much, I just turn my head to use other ear, people keep thinking I’m looking over their shoulder 😂
I did a lot of exercise from the moment I came out of hospital , my partner found a list of facial exercises to do and I did them daily. I also took nerve healing supplements. I also didn’t have to go back to work until I was ready, I am convinced all this helped enormously.
Basically the bottom line is that I have recovered incredibly well, I don’t have tinnitus, my balance works, my face works except the tear duct.
I did pre-op guided meditations so was very relaxed when I went into the op.
I am glad in hindsight that I had the op and not radiation therapy.
That’s so good to hear a positive outcome after surgery. I’ve just found out I have a 2cm AN and am seeing my neurosurgeon on Friday at St Barts in London. I’m really worried but think I’ll feel a bit better once I know what’s going to happen. At the moment all I have is a bit of hearing loss in my left ear and a bit more in my right.
It’s good to hear from others about their journeys through all of this.
One more important thing to think about if you decide the operation route is to thoroughly research where you will go, I actually went with my original hospital because the medical team there have done so many of these operations in the last 10 years, over 800!! an experienced team is key!
The hospitals should be able to tell you their statistics, how many and what kind of recovery after a year.
Statistics are indeed very important. In all honesty, this is the criteria my partner will be using to choose which hospital he’ll have his surgery at, should it be decided that he needs it.
Hi I have just got home from my surgery on 23/03/2021 all went well, now just rehabilitation to get balance and some facial moving do to a bit of swelling and intrusion on nerves, definitely worth having operation, will write more details some good look
Hope the surgery went well. I had mine 2 years ago and have a total loss of hearing in the left side. It’s an adjustment but can have its silver linings too..... lay on your good ear and get the best nights sleep, always handy to not “hear”Someone if you don’t want to lol
Seriously though, just take your time with recover, it will come. Balance maybe an issue to start but you do compensate
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