I’m 39 years old, female. Healthy , never took a tablet in my life. Leading a healthy life style so it was a shock to receive the news that I have 3.3 cm AN. I had a meeting with my scall base team in Heath Hospital , Cardiff and they have told me that no other option will work for me apart from an operation. I was absolutely devastated, as the only symptoms I have is numbness in my right side of the face and last few months I have noticed that my hearing has been affected. But no problem with my balance or no other symptoms. So finding out that after an operation I will lose my hearing completely and that my balance will be effected and god knows how many other side effects. Really hard to digest .
I just wondering if anybody on here had an operation done in Heath hospital Cardiff and just share your experience regarding how being treated, how was your recover, how long it took you to recover. Was you happy with your surgeon? Who operated you?
Sorry for such a long message. Any information will be much appreciated
Thanks 🙏🏻
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Azliegde
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HiI’m in Canada (originally from UK) and had the surgery so I can’t comment on the surgeon part of your questions.
I had my surgery 2 years ago at 49. I lost my hearing in my left side. For recovery I just made sure I walked everyday whether it was around the block , to a store , or even just to get a coffee and sit in there. My wife was very patient and helped me, I held her arm for the beginning but gradually I became stronger.
My balance came back fairly well , i still lose my balance in the dark or if I’m walking in the snow . Also if I’m having an off day where I’m feeling dizzy i will have a little problem.
The dizziness eased along with the balance. I’m probably at 80% better. :)) I was off work for 4/5 months but because of the nature of my job.
I have regressed a little with my symptoms regarding dizziness and balance BUT I’ve just had my 2 year follow up MRI and it’s completely clear!!
You can do this! It is a shock I know but you will bounce back . Good luck ! Let me know how you get on . When is your surgery ?
Are you having a second mri to determine if the AN is growing? Some ANs stop growing on their own. Also, it might be worth getting a second opinion on you treatment options. If you research the internet you will find AN neurosurgeons who may be able to offer an alternative treatment to microsurgery.
No they did not offer second MRI. But I will be getting second opinion . For me personally an operation is a last resort. So I want to exhaust all other options before I go for an operation. As I feel quite well , I have no balance problems and I have lost some hearing in my right ear but I still can hear quite well. So the thought of all the side effects after the operation quite daunting.
If I were you I would definitely want a second MRI before any operation. Check out this link about ANs stopping growing. researchgate.net/publicatio...
Hi. Yes I had a look into gamma knife. Had a consultation with the specialist, unfortunately in my case there are more risks then benefits. Due to size of the tumour. The chanced that’s it’s going to work, less then 50%. However if it’s doesn’t work , I still have to have a surgery and it will be more complicated , with more risk and damage. So I went abroad to have my operation done. I got it scheduled for 30th of March with a really good surgeon, the guy is genius. He has a really good succession rate. So I feel really positive and hoping for the best. So watch the space . I will post after the operation , how I feel and the rest. Xxx
Hi. Unfortunately i’m not a BANA member. I would of love to to watch the meeting and listen to the patients experience.
Actually my surgeon in Cardiff who I had a meeting with was Caroline Hayhurst.
I’ve chosen to go abroad to have an operation as it could be done much quicker. My operation scheduled for 30th of March. Also the technics they use over here a little different, I have been told in Cardiff operation takes 11 hours and I will have a metal plate covering the opening in my scull. Same operation over here take 3,5 hours and they insert back my own part of the scull
( bone) that they will remove during an operation.
So I will keep posting here after an operation, how I feel and recover. 👍
Great news that the op went well and you’re recovering. I’m no expert, but if you haven’t got any balance problems now after the op, then I can’t imagine you’re going to develop them as they can’t have damaged the balance nerve, or your brain is already compensating for any damage caused by the operation, so real good outcome.Could you divulge who operated on you? If you don’t want to say on this platform, could you text me on 07929527809. I will keep the information confidential. All the best for the future. Hopefully you can now get back to a normal post AN life.
Hi Desoto. Yeah I’m so please with the operation , literally have no side effects at all. No damage to any nerves so my balance is excellent although originally in my hospital in Cardiff they told me that my balance will be effected and it will take awhile for me to regain it back. I have lost my hearing in right ear however I have noticed no difference as yet. I have no ringing in my ear.
After an opp the second day I was up and walking almost with no support. In total operation took 3.5 hours. Although my tumour was quite large 3.3 cm and it was growing quite awkward there was high chance for my facial nerve to be damaged. But luckily they haven’t damaged it at all and my face remained the same as before an opp.
If you interested where I had my opp, i had in done in Russia (Moscow) in the university hospital where they only specialise in neurosurgery , overall they do more then 700 hundred operation in a year of all sorts brain tumours. They have a colossal experience. I’m so fortunate being able to have my operation over here.
My surgeon’s name Vladimir Poshataev his contact details +7 79067168832, if you want to call him or WhatsApp he speaks English. He will answer all your questions. Good luck 😉
Thanks Azliegde for the info. I’m really very pleased that you’re doing so well. It gives others a lot of confidence that there can be very good outcomes of the operation. Have a great future. It must feel wonderful to have all this behind you. All the best.
It does feel wonderful, I’m really happy that everything turned out so well. Hope the Details I posted is useful. I can WhatsApp you if you need any more info.
Hi I had 28mm AN believe me I was scared I had operation nearly 5 years ago RVI in Newcastle to debunk my tumour..I was off work 6 months .My tum6now is bout 10mm in size recovery was bit of pain as I had some facial palsy which caused problem with my eye as now suffer from constant dry eye .but apart from that I take each day as it comes ..just get plenty of rest n follow doctors orders
Thanks for your reply and sharing your experience. It really helps. I will be getting a second opinion. Will keep up to date what the other specialist say. 👌
I had surgery 15 years ago, my tumor was so large I'd already lost all useful hearing on the left side. You should speak with your surgeonand establish that the trgeminal nerve will not be cut. If that happens your face will drop on the side you have the AN. Post op I had some minor issues which soon cleared up. I was back to normal after 6 weeks and signed off med monitoring at 3 month check up.Be strong, it's benign, you're not going to die. Worst thing I experienced was 3 months before I could have a decent hair cut.
Thanks for your reply and sharing your experience. It means a lot. It’s not a thought of dying worries me. It all the potential side effects . I will be getting a second opinion and see if any other treatment such gammer knife or cyber knife could be done. Operation is a last resort. Worth finding out . 👌🤞🏻
Hi I’m 26, had my surgery 8 months ago, at QMC and I was scared of what the future may lead, very fit and active person except the tumour. I actually feel healthier now than I did before my surgery, yes I am deaf in one ear and have some temporary facial paralysis, but I have just gone on to get my dream job working on ladders (my balance hasn’t been affected If anything it’s better) I believe your recovery is what you make it, your future is what you make it. Yes I find hearing a challenge but I have learnt to adapt to it.
Good luck with everything but don’t let what they say define you. I felt exactly like you did but remain positive.
Hi, I am supposed to be getting my surgery on 6th April. I had my mri just over 2 months ago where my 4cm x 2.5 cm AN was identified. I have also been told by a couple of neurosurgeons that the only treatment is translabyrinthine where I’ll lose all hearing on my right side where the AN is.
I think the approach all depends on it’s location. Mine for example has distortion over the brainstem and radiation to try and shrink it is not an option as this initially will cause the tumour to swell and it’s more dangerous if it swells over the brainstem.
If yours is anywhere near your brainstem my main advise is to make sure your neurosurgeon has many years experience with removing AN.
From my research I’ve not heard of any operations that have gone wrong, it’s not an operation to be rushed.
It is always a going to have high risks involved however despite multiple risks the percentages of these risks can range from 2-5%, 5-10% or 10-20% so daily low risk.
It requires two surgeons and can take some time to do. If you’re not one that scares from watching surgeries there is some clips show on : At the edge of life series 3 episode 2, from memory it’s on at 30 minute mark for several minutes then the 43 minute mark.
Hi, I have had my surgery and due to me being in distress they couldn’t continue with the op, leaving some behind as it was quite tough to do and already took 17 Hour. Don’t let my case put you of though. I was home after 5 days despite having more pain since coming home. If you lie feeling sorry for yourself , recovery will take longer. Try and keep positive and aim to work towards a goal of some kind, whilst not pushing to much.
Sorry to hear that the surgery didn’t go to plan. Hopefully you will recover well and all of this will be only а memory soon. Take it easy and rest plenty. ❤️
Hi all. I have had my surgery on the 31 of March, surgery gone well. I hade no damage to my Trigeminal nerve or any other part of my face. I can walk independently, I have been told before that my balance will be effected dramatically. However good news I haven’t noticed it yet, I do move around the house very carefully tho.
I lost my hearing in my right ear, but haven’t really noticed it yet, as it was reduced before anyway.
Obviously the few day after an operations I didn’t feel well the head was sore and I felt nauseous for 3 days after.
But all considered I feel well and pleased with my surgery. 👍😉
Great to hear your surgery went so well! Wishing you a speedy recovery 😊 take it easy, you will have good days but it is always good to remember not to over do it when you get bursts of energy and take your time with your recovery as your body has been through a lot. All the best x
Thanks for your well wishing. I’m taking easy and resting loads. After an operation like this you can’t be too careful. Good news I’m doing well and the stitches have been out yesterday. Hooray
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