Post AN surgery: Has anyone had a tough... - Acoustic Neuroma ...

Acoustic Neuroma Support

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Post AN surgery

Pinkrose1 profile image
19 Replies

Has anyone had a tough time after having AN removed? I had the surgery 7 months ago and still suffering with vertigo, bad eye pain and ear throbbing and pressure in my head where i have to go to bed. I had an MRI about 2 months ago and the surgeon said everything is fine. I know it's a long haul in recovery but recently i feel i am having some more bad days. Has anyone experienced this too? It would help encourage me to stay positive. Thank you

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Pinkrose1
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19 Replies
MichiganPhil profile image
MichiganPhil

I had AN removed 11.21. Dizziness has gotten a little better but definitely still feel it. I noticed a lot more runny nose after surgery. A little bit more headaches. Ringing is louder in ear which they say is normal. Hopefully it all gets better, in the meantime just trying to live a normal life. I’m going for a MRI soon so hopefully I’ll have answers.

Pinkrose1 profile image
Pinkrose1 in reply to MichiganPhil

Hope all goes well with your MRI. Thanks for your reply, it helps to know it isn't all plain sailing, i seem to be doing quite well straight after the surgery and then had a lot of problems set in few weeks later. I'm very grateful to have it removed though!!

MichiganPhil profile image
MichiganPhil in reply to Pinkrose1

Thank you. It’s definitely a journey post op. Just like you I’m glad it’s removed. Your recovery will get better in time. Stay positive and know that there are people who are going through the same as us.

musicman5 profile image
musicman5

My surgery was 6 months ago and I'm also dealing with symptoms such as balance and coordination issues, facial paralysis and inability to bling my left eye. Those issues are slowly improving, but my fine-motor skills such as writing, holding objects, playing guitar are taking much longer to show any improvement. I'm doing OT and PT 2x/month and my daily home exercises. I'm trying to maintain a positive attitude but it can be difficult sometimes.

Pinkrose1 profile image
Pinkrose1 in reply to musicman5

I'm so sorry to hear you have such troubles too. I was fortunate in that my facial paralysis has gone now, it's left me with eye soreness and dryness now and i have full use of my mouth and eye except for the loss of some vision. The strange thing is that i have no fluid from my one nostril since the operation so if i sneeze or blow my nose it is completely dry that side! Weird! But a bonus :-) I really hope you will have more improvement soon, thank you for replying, it has helped me so much to know someone else has had troubles too as i have read so many seem to do so well after and it had got me down with having such a lot of issues with the head pain,etc. Hope all goes well for you and you make a full recovery.

musicman5 profile image
musicman5

From what I'd seen online, I was thinking that my recovery time would be 2-3 months, instead of the 6+ months so far. It's likely due to the large size(4.5cm) and that the tumor was pressing on my brainstem, also my age-67. I'm trying to have a mindset of patience and perseverance, but that can be difficult at times. Take care! Chuck

Blappers profile image
Blappers

Hello - I am 38 years old now. I was diagnosed with Acoustic Neuroma in May 2019. I had subdural craniotomy in June 2019. I lost my right hearing with the surgery. Before the surgery I had 40% hearing loss in my right ear, blurred vision at times and loss of balance. The tumour was fairly large (3.8cm) and was pushing on the brain stem this escalating the symptoms. My blurred vision and loss of balance was gone after the surgery however lost my right side hearing completely. The tumour was only partly removed due to complications in surgery. NHS did MRI scans in 3 months, 6 months and has been doing it annually to monitor if they have been any growth. Other than that, I had occasional head aches as if to remind me the tumour is there and a feeling that my balance many not be as perfect as normal. This might some strange, but I also used to get slight pain in the head at the right side of my head where the tumour is when I urinate, don't ask me how its related.

About how I am affected and how my life has been after the surgery - I know its probably never going to be back as normal and I expected it wont be. My social life has taken a blow because I cannot hear conversations especially with surrounding sounds. The right hearing hearing loss is more of a frequency hearing loss. The speech is not clear and surrounding sounds seem to be masking them. Note that I do not find any problem when there are no surrounding sounds. So physically socializing with people at crowded or noisy places - even in the street, meeting new people physically has been difficult. As much as I can, I go out with friends who knows my condition well because a lot of the time, I miss conversations due to the hearing problem. NHS after 2 years, tried to help me with a hearing aid but is of no use. I will continue pursuing with them. Anything else, I felt its the least considering what we went through.

Anyway fast forward to 2022, I am having more frequent head aches, a feeling that I am having some vision problems, more loss of balance. I had my annual scan in February 2022 and I got a letter from NHS last day stating the remnant of the tumour has grown significantly. I am advised to meet my neurosurgeon next week to discuss further management.

I wish you all the best!

Pinkrose1 profile image
Pinkrose1 in reply to Blappers

Oh i'm so sorry to hear that you are having more symptoms again and regrowth! That has been on my mind that there's a chance of it growing again too. I hope all goes well for you and they are able to stop the growth further.

Blappers profile image
Blappers in reply to Pinkrose1

Hey, I think I was a little negative on my response earlier probably because I had just heard about the regrowth and was getting some of the symptoms back. But I have to tell you, except for the hearing problem, the last 2.5 years have been good for me. I have been going for CrossFit, occasional runs, cycling, fare to say that I have been active and the fittest in my lifetime. I have been happy so far and did not let it bother me. Of course the regrowth has been a bummer, I will be seeing my Neurosurgeon this week. Will let you know how it goes and what the advice is, hope its not that bad 🙂

Pinkrose1 profile image
Pinkrose1 in reply to Blappers

Totally understand and no you weren't being negative, you were just saying how it is, everyone seems to have different experiences. Its good that you have been physically active with cycling and running, hopefully all will go well for you in the future with any treatment needed. All the best.

Moorside89 profile image
Moorside89

Hi I had my surgery 19 years ago. I returned to full time teaching after 6 months. I have adapted to the hearing loss quite well. I still have tinnitus and slight balance issues but I haven’t let them interfere with my life. I can still ski which was a challenge! The first 3 months were the hardest to be honest. I felt like I was never going to get better. I had severe pain in my neck and was quite down. However after 3 months I started to feel more positive and was determined to get my life back. I hope you have a similar recovery.

Pinkrose1 profile image
Pinkrose1 in reply to Moorside89

Thanks for your reply, wow skiing! That is great that you have good balance! Hopefully i will get mine back too. At the moment my head still rough and i can't even drive yet due to the giddyness but it's good to hear positive experiences, gives me hope that i will recover.

Blappers profile image
Blappers in reply to Moorside89

Hi, How much was your hearing loss? I lost my right side hearing completely and I find it very difficult to hear speech in crowded places. My surgeon initially said that I may adapt to it but I still find it difficult. So I tried to avoid social events unless I absolutely want to go.How was your experience?

Pinkrose1 profile image
Pinkrose1 in reply to Blappers

I too have completely lost my hearing, it was really bad from the tumour before surgery so i didn't think it would effect me so much but i have noticed i have a lot of trouble with knowing where sounds are coming from and often find myself confused with traffic noises, it initially made me panicky when i could hear cars but not know which direction they were coming from. I have since learnt to keep double checking and use my eyes more when out walking. In social things i have totally lost confidence as i often lose the thread of conversation and nothing worse than feeling on the edge of conversation but i'm hoping i will learn to adapt, i was thinking of lip-reading classes in the future. I think that may be a big help.

Pinkrose1 profile image
Pinkrose1 in reply to Blappers

Sorry a bit confused with this technology, i didn't mean to come in on your post/question to moorside89, i thought the post was sent to me. I'll get used to it all one day! :-)

Moorside89 profile image
Moorside89 in reply to Blappers

I have lost my hearing completely in my right ear. I have adapted by careful positioning when out socially. I have no idea about the direction of sound much to the amusement of my family when I am trying to locate my mobile. I obviously lip read subconsciously as I found people mask wearing difficult to understand. I managed to return to teaching classes of noisy teenagers. Thankfully the hearing in my left ear is good at compensating for the loss in my right.

I do find noisy social gatherings challenging but I still go and enjoy myself. Friends are aware of my hearing and will accommodate me by asking where I need to sit to hear them. I hope you can adapt and begin to enjoy social gathering again.

Gardener21 profile image
Gardener21

Hello, sorry to hear you are a member of the ‘club’! I had surgery on April 23rd last year so am coming up to the one year anniversary. Recovery has been very erratic and very slow. I think I have now reached the ‘as good as it gets’ stage. My neuroma was 22mm and I had to have 12 hours surgery, a total shock! I am still quite unsteady, worse if I’m tired, tinnitus is quite bad but it was before so not a lot of change there. I get the odd head stab in the operated ear, and my eye & nose runs when I chew food, which is quite annoying but I guess nothing can be done.. I had vestibular physio which helped immensely & I still do some of the exercises if I have a wobble. I walk 3 miles at least three times a week. It’s not been and isn’t plain sailing but I try to think of it as my ‘new normal’ now. If I’m tired I give in to it and go to bed. At least it’s not in my head anymore and I’m here to tell the tale. Hope you feel some improvement soon. Kindest regards B xx

Pinkrose1 profile image
Pinkrose1 in reply to Gardener21

Thank you for your reply, i know what you mean with the wobble, still getting unsteadiness. It's good to know it's normal. Like you, i try to walk regularly, it has helped to strengthen my muscles as i was in bed for months after the surgery with severe sickness and i lost so much muscle in my limbs. It does tire me though and i end up in bed but i'm determined to keep it up! Thanks again

Gardener21 profile image
Gardener21

Good morning.. sorry to hear you are having problems post surgery.. I am now a year on from surgery at Kings to remove a 2cm neuroma.. it has left me deaf in my right ear & I struggle in noisy situations, it’s all too much & my directional hearing is zero! I have no idea where noises come from especially if someone is calling me and I can’t see them! I still have unsteadiness although this has (I think) plateaued and my face feels quite tight sometimes on the side of the op. A plus though! my wrinkles are less on that side! On the whole I’m ok and try to think of life after the op as the new normal. I’ll never be how I was but I’m glad to still be here after 12 hours in theatre. I’m just kind to myself, I get very tired very easily so I don’t try to fight it anymore, I just rest, sleep or have early nights. It is what it is.. I’m on yearly MRI’s at Kings but not due until September this year. I feel anxious at every little head pain or head ‘zap’ but guess the nerves have been seriously disrupted! Didn’t help that I had treatment during covid so have not had an opportunity to speak 1-2-1 with my consultant.. anyway, I’ll stop rambling!! Persevere, just go with your flow and look after yourself. Kind regards B xx

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