hello friends! i was diagnosed with AN in 2016 on left after the birth of my beautiful daughter due to loss of hearing. hearing returned after 4 months. had a scan after that it showed stability then i had a break no scans due to pregnancy then after birth i had another scan showed slight reduction. then i had my 3rd pregnancy baby arrived in jan had scan in march. i have been told its grown and will need surgery. i have no hearing problems. lately after i was told ill need surgery im beginning to feel light headed. im scared. this is what it says. see attached. i have 3 girls aged 2 months 2 years and 4 years. i want to be there for them and raise them. i been feeling very down and upset.
please share thoughts and experiences.
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Rakhee03
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Hi has a date been set for you ? What size did the hospital say it had grown. I had a large one with to much brain stem compression and due to the QE unable to operate due to Covid I had to go to another hospital, so far I believe I’m recovering well and able to lead a normal life albeit deaf in my right ear.
hi steve thank you for sharing. means alot. not yet i am seeing the consultant to discuss risks complications etc on 5th may then see what they say. he did not say how much its grown but it has. i am not sure if my pregnancy pushed it to grow due to hormones. i just want to be there for my girls. i get the worse feelings at times. fear is the biggest culprit.
I also have 2 children 2 and 8 years old. Its really worrying to think of the operation. It’s really hard to deal with this news. But the good news you are not going to die from the AN and the success rate of an op is really high.
I had my opp not long ago, but feeling really well. I’m still away now as I had an opp abroad and kids stayed with their dad but I’m coming back on the 21st of May and can’t wait to see them . And I already feel well enough to look after them.
So don’t worry you will be fine, the best thing to is to do more research on AN, look into different options for treatment, get a second opinion, as may be the doctors consider a Gamma knife treatment. Good luck! Keep posting updates on your story and if you want to know any more about my experience ask any time I will be glad to share. Take care❤️
Hi Azliegde awww thats beautiful children are blessings. my youngest is 2 months. i have my appointment on 5th may to dicuss. im being seen at st. georges hospital in uk.
wow did you have any support? thats really good. i love how positive you are honestly. i am 33 and feel so sad at times.
can you still do all the same stuff like straighten your hair, watch tv and everything.
your very brave! i am so proud of you. well done. x
I only had a support from my family. My husband and my parents. That was enough for me personally. As I didn’t have my opp in Cardiff, I’m not sure what sort of support I would of have from the hospital or the skull base team over there. However when I return they will be monitoring my recovery in Heath hospital.
Oh my ! you so young too, only 33, so frustrating, when something like this happens at such a young age. But on the bright side at this age the doctors say more chance to recover fast after an opp and return to your normal life quicker.
And yes most things you could do as normal. I do straighten my hair and style it as usual, everything just the same. The only thing is not recommended any physical strain such no exercise for 6 months, no heavy lifting, running or jumping and not over do things in general.
From my experience and research/knowledge, if they plan to operate then the area they operate on will get shaved back. As for exercise I’d start to do as much as you can before having any kind of treatment for this as this will help you recover to. Any advice / support you can also reach out to BANA UK. Also in terms of exercise etc whilst it’s best not to do much afterwards, I myself only had my op 3 weeks ago and already walk approximately 2 miles a day and been advised to try push that a bit more despite it already being a good progress. From my experience sometimes it can get hard emotionally and I had my op on the 6th April and came home on the 10th , my first session of physio in hospital never went well but then all other times I pushed myself to do all the tasks given and again this helped me.
There’s also a good book called ‘road to summit’ from an ambassador for BANA UK who also had this operation 3 years ago.
From my point of view try and stay positive whilst also maintaining real to possible complications ( despite them being low risk).
To be honest I’ve found a lot of it rather frustrating. From being referred to ent September then to only have an MRI through my own perseverance in January. Then there was the fact my main closest hospital that deals with this couldn’t accommodate me until accommodate me due to Covid despite the fact that due to my AN size in a non Covid world they would of operated 2-3 weeks after. Therefore in the end I had to go somewhere 2 hours away which took a couple of months.
As for the headaches they again after the op can be annoying in terms of them being of a pressurised type headache but they’re improving.
One thing you should ask is; Is the tumour causing any brainstem distortion. If it is then push them to treat you ASAP.
How old is the scan ? Why was no intervention/treatment done prior to this ? It is scary especially with it going over your brainstem. My advise is, if your main hospital can not accommodate you due to Covid then you make them find another hospital that can accommodate you. The sooner the surgery the better. You’ll be ok.
I have read somewhere that extra blood flowing through the brain can increase the growth rate of the Schwann cells. I’d imagine that this could be the case with pregnancy/ going into Labour etc so it would be interesting to see if that has increased its growth rate.
Many consultants would say no, however there hasn’t been enough research done into causes in my eyes, otherwise other than NF2 they’d have identified a cause.
Like in my case I believe it all started from a car accident last year but consultants say no we’ve done research etc however I know research has been done and was showing that they can be linked to car accidents but the figures was low so they have ruled it out. So my question back is figures are low which would generate a low risk rate, like the low risk rate of actually getting a tumor. If they don’t know the cause then I don’t see how they can rule out any causes.
No they left a little bit of the tumour, as if they would of remove all of it , the facial nerve would of been damaged . And I would of ended up with facial palsy.
They left about 10%, but everyone’s case is different, in some cases they may leave nothing at all. It’s something your surgeon will discuss with you. As I had two opinios and both surgeons told me the same. In my case there was no other way. Of course they will monitor it, regardless if any fragments were left or not. I only had my opp on 31 of March so It’s only being a months. My next check up scan will be in 3 months time.
HelloDnt worry all will be well I also had AN at age of 26 I was also emotional down got treated in 2015 deaf in left ear gt facial paralysis after op things recover soon also delivered one daughter after op things recovered and u can live nrml life headache is there on and off hearing from one here is annoying but it's not too bad sending prayers to u
According to dr facial paralysis recover in 2 to 3 mths 90 percent bt still 10 percent will be there still I dnt have tear in An side using eye drop often migraine issue after op
Hi Rakhee03, scary times for sure but try not to worry. I'm am typing this from hospital bed having had TL surgery 3 days ago. I have 2 amazing daughters and a super loving family, and like you (like everyone) its natural to worry and fear the unknown. I have been super lucky. 2.4cm fully removed with no facial damage. Have been doing my physio (awful the first day) but the physio's have been amazing as have all the nurses and support staff. I've just been given the news that as all has gone so well and all my stats are good, I can go home this evening.Try to keep positive (tricky I know), the surgeons and teams in this field are amazing. I am sure you will do great.
I have just got home from being discharged! So good to be back with family. Op was Thursday 8:30am to 7pm. My hearing was really quite poor already - its how my AN was diagnosed after best part of a year going through other "normal" things for hearing deficit. Mine was initially 17mm when diagnosed back toward end of 2019, then had grown to 22mm when re-scanned Dec 2020. I really was in two minds in terms of the surgery or radiotherapy. Finally took decision of surgery mid Feb. This was based on not wanting to spend rest of my life (I'm no spring chicken,but only 47) wondering any time I got a headache or pain, that the tumour may be shifting or growing. I thought I'd rather take the full deafness and risk of a little paralysis (which if happens is more often than not just temporary), but knowing that the tumor will be out fully (or mostly) and I can get on with rest of life with family and not keep looking over my shoulder.For me, my hearing doesn't seem any different than before surgery unless I cover my good ear - and I cant hear a thing! I think my good ear has compensated over the past couple of years meaning that my good ear had already tuned in on noises from the quiet (now deaf) side.
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Being referred to Ent for suspected AN
awaiting diagnosis from MRI suspected AN
New Diagnosis of Acoustic Neuroma
wait/watch/scan
Not sure how to go forward now!
