I had a AN removal (85%) In may 2013 ... - Acoustic Neuroma ...

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I had a AN removal (85%) In may 2013 been referred for gamma knife. After op got hydrocephalus (fitted variable lumbar shunt) have physio

Elkcub001 profile image

My balance is still quite poor. Feel disorientated/drunk! (After a year) this feeling is worse when outside, which makes me feel very anxious. I have facial palsy (waiting for op) my face itches and I have lost my taste buds on the side of my facial palsy. Just wondering if the symptoms are permanent or do they improve? I do my physio everyday. Comments/opinions welcome

10 Replies

Your post highlights that everyone has different post operation effects. I have lived with them for 26 years and they seem to keep improving forever unless you just learn to live with them. I still have to be touching something when I stand on one leg say to put my pants on. I still have facial palsy and paralyzed larynx and total deafness on the operation side but all in all life goes on as before. Try to keep positive and look forward to better times ahead. Best wishes, Keith

Elkcub001 profile image
Elkcub001 in reply to keithzx12r

Hi Keith.

Thank you for the positive response. 26 years! Wow! Guess I'm still a baby! I was seriously ill after my op, many complications because of the hydrocephalus (don't want to go in detail as I might scare a few people, think I am the worst case scenario) I lost 4 stone in weight and well put it this way I'm lucky to be here!

Before my op I was a very active person, 3 children, full time job (which I loved) and quite a good social life. Guess I took it all for granted as I can't work at the mo because of severe balance issues, can't go out dancing :-(. So I'm looking to try to find a new hobby to occupy me. I like gardening (weather permitting) and I love baking. On good days I can do all this. I can't drive either, so independence has been taken away a little. I'm learning to try and be grateful for what I do have but you can imagine, I'm sure, that it is quite frustrating and upsetting at times considering what I used to do.... Is this forever? Don't want to get depressed. Guess I'm still adjusting. You take care too and thanks again.

keithzx12r profile image
keithzx12r in reply to Elkcub001

I had 3 tumours removed in 1987 aged 50. Like you I have 3 children and at the time my own motorcycle business. Post option I couldn't swallow and dropped 2 and a half stone in 3 weeks. I had a muscle graft to stop my cranial fluid leaking out. I couldn't work and the business built up large debts with the bank. This culminated in me giving up my house so I could keep the shop and income. As I improved things got back on track and by the time I retired at 67 I had the security of my own house again. It's a long haul but at least you're still here with your family. Chin up. Keith

Elkcub001 profile image
Elkcub001 in reply to keithzx12r

It is a struggle financially, my husband had a lot of time off work while I was in hospital (for 6 months!) so trying to get back on top of things. I'm hopeful that together things will be sorted and my health will get stronger. My personal journey goes on, you've given me hope reading that it is possible to have a life after. Maybe it's not like my life before but like I said I still here. As they say what doesn't kill you makes you stronger. Like you I'm in it for the long haul thanks Jo :-)

Hi, i had my surgery done in 2003. i can surely identified with the loss of balance especially outdoors, the facial palsy and the loss of hearing. It is depressing at times but all in all, i thank God that i am alive and can still have a normal life. Don't give up on your physio, i wish i had continued mine but unfortunately i didn't. I also have a dry eye on the operation side which means using tears ever so often. God is great and he kept u around for a purpose, hang in there and have a wonderful Mother's Day.

Elkcub001 profile image
Elkcub001 in reply to jacquee

Hi. What lovely words, thank you. I hope your recovery is getting better. I take each day as it comes. My journey through life is different now and I'm learning to cope. As for normal, what is normal? Is anyone normal? :-) Maybe you can start your physio again, I do some excercises at home. Have to do them otherwise I end up having a day that's not so good. As for the facial palsy, I'm waiting for an operation. I was quite attractive before the op ( I know that's vain) it really has knocked my confidence. But like you said we are still here, and I'm grateful for that. Need to find a new purpose in life. I'm sure we will get there. You take care :-)

Yep , know what you mean by being attractive before,so was i, and i still found fault with myself. we are vain creatures.lol it has knocked my self confidence also, but my kids and new husband doesn't think i'm not attractive. lol. they are very supportive. i wish you continued success on the upcoming surgery. let me know how it goes. God bless

Elkcub001 profile image
Elkcub001 in reply to jacquee

Thank you. I will let you know. My husband and kids are fully supportive too, if it wasn't for them I wouldn't be able to cope. Guess we have a lot to be grateful for. Wishing you all the best too. :-)

I had Gamma knife in December and have hardly any side effects from it, apart from considerable fatigue and further loss of hearing in that ear, occasionally I have facial nerve problems but it hasn't been too bad, so I wouldn't worry about getting the GK on top of all your other problems I would think that you wouldn't have many side effects from it either. Must be worrying though that it may make your other symptoms worse and I feel for you. I hope that the op for your face goes well, I wonder personally if it would be worth waiting until you've had the GK to have the op just in case it causes any problems what does your surgeon think? I have almost no balance when I'm outside in large spaces, and use mobility aids such as crutches or walker or scooter depending on how far I have to go, I have lost some taste but not as much as you, I have facial nerve twitching, tightness, pain and a very slight hardly noticeable droop I know that it's there but no one else notices. I had all of these problems long before I had the GK but definitely the fatigue has been worse since. I'm hoping like mad that my mobility improves as the AN Shrinks not having an MRI until December so watch this space! Good luck and hope all goes well x

Thank you so much for your lovely comment. My surgeon doesn't think it matters what comes first, GK or facial surgery, but hopefully the facial surgery will happen soon been waiting 22 weeks now. My balance is bad too in open spaces but I'm trying to walk unaided, my dog looks at me like I'm a nutter when we are out, zig zagging! Lol but I'm trying. Had physio today and my therapist says I'm doing well, heading in the right direction. Got to see another consultant on 26 June see how my balance and head are doing. I will ask more questions then. But again thank you. Take care bad I hope you are heading in a positive direction

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