Little scared 😁: Yesterday I met the... - Acoustic Neuroma ...

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Little scared 😁

Flossie47 profile image
16 Replies

Yesterday I met the surgeon who is to perform my operation, I'm on the waiting list to have my 3cm AN removed. I was diagnosed late Sept and thought I was coping quite well, little shocked but hey, it is what it is, just got to get on with it. I'm trying to remain positive as mental approach is half the battle. I'm a little scared as to what the prospects are. I'm 48 years old and have quite a stressful job running a customer service team, which I love, I'm worried that I won't be able to continue with this job once my surgery has taken place. I'm also concerned that I may not be the quite the same after surgery. Im donfeel lucky that my symptoms are just hearing loss in my left ear and facial numbness, I don't feel sick or get dizzy at the moment and day to day living is not too bad. I appreciate others are having a worse time than me. Just wondered if anyone post op could share their experience with me.

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Flossie47
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16 Replies
Michyford profile image
Michyford

Hi I am on watch and wait so can't help with info on the op but there are lots of people who have had an op in the closed BANA group on Facebook I think it maybe worth you joining if you can. Hope all goes well

Flossie47 profile image
Flossie47 in reply to Michyford

Thank you, I will take a look on Facebook

Flossie47 profile image
Flossie47 in reply to Michyford

Thank you, following your recommendation I joined the group on Facebook, really supportive snd informative

sivakumarmsc profile image
sivakumarmsc

Hi I can understand your feelings. I was also diagnosed 3 CM AN with brainstem compression. My surgeon planned partial removal followed by Gamma knife. Following Surgery I had to keep away from my Job only for a month. I am 34 and in a stressful customer facing job too. Had my Gamma knife 6 months post surgery.

My recent scan showed gamma knife arresting growth. It is still close to 2 cm same as it was during Gamma knife. So symptoms relating to it still persists, but nothing that keeps away from work.

I have had difficulties, it is not like I am having perfect smooth journey, but nothing is so big or difficult all minor things you should be able to cope. After I returned to work after surgery only time I had to be away from work due to AN was two days I spent for GK.

Hope this comforts you. All the best

Siva

Flossie47 profile image
Flossie47 in reply to sivakumarmsc

Thank you Siva, much appreciated

bypass profile image
bypass

Have you explored all your options including the various different radiosurgeries? Lots of good information here anworld.com/ and my particular experience is here anarchive.org/chris.htm

Good luck

Kristyll profile image
Kristyll

We are all here to tell the tale, many of us who all felt like you initially. It is scary but if you have a good Dr and hospital see how your recovery goes. All the best x

Join us at BANA - bana-uk.com - where you'll find others with experiences sand knowledge that may help you.

2cakes profile image
2cakes

I had my operation 13 years ago. I had 3 months off work and I then returned to full time as a secondary science teacher. I was as nervous as you are before the operation and although the recovery wasn't pleasant it is now a distant memory. I have no problems with any facial paralysis or headaches and apart from hearing loss in one ear I have no effects from the surgery. Hope this helps

Lisa56 profile image
Lisa56

Hi

I am also 48 and I had my 3cm AN removed 2 and a half years ago. I do have some permanent effects like losing hearing in my left ear , (not that there was much left anyway), my face still has some palsy but people tell me its not noticeable to them (can't play my clarinet though or blow or whistle), balance is generally good now. I still get fatigue sometimes but not like I use to before and just after the op. Its really difficult to say what your effects will be but you are managing now and the effects can only get more with this in your head so once you have recovered from the op you can begin to get better. I'm not sure what your job is but things that I worried about before weren't as important as I thought they were. Afterwards you can get help, more than I took, with physio etc but also Brain Tumour Support who are still there for me and gave me a counsellor to talk to. You are welcome to ask me questions if you want.

Lisa

Flossie47 profile image
Flossie47 in reply to Lisa56

Thank you Lisa, do you feel that surgery was the right thing to do? I'm a customer service manager for a good company so very busy, can be stressful but I love it. Your right about things that I think are important not being so in the future, just trying to get my head around it all.

Lisa56 profile image
Lisa56 in reply to Flossie47

Hi Flossie

Well I was told that I didn't have an choice except surgery because of all the things that have been said, it was too big, pushing on facial nerve, pushing into brain stem.... The only option would have been not to survive for more than a couple of years but I have survived and they took it all out so yeah I think I had to go through it. It is scary and it is tough at times but you do get through it. Yeah getting your head around it is hard, not sure I have fully done that, even now I still think about it all. I don't think there's any reason why you shouldn't be able to get back to your job but you may not want to, I don't know maybe you will, you need something to get your fitness back and look forwards to afterwards. I got a new puppy 6 months after to get me out walking. My previous dog died about the same time I was diagnosed and I didn't want to get another one before my op, in fact I wasn't sure I even wanted another dog but afterwards I was desperate to be able to get out of the house and get walking again. You can't really know how you'll feel afterwards so just get through it, get all the help you can.

austin3849 profile image
austin3849

Hi my op was nine months ago my surgery lasted eleven hours.

six months earlier I had a shunt fitted I think this may have helped relieve pressure on the brain.

I am now slowly recovering from facial paralyses on the left side of my face.

Glad I was retired as I had a lot of trouble with an eye infection.

I hope you are luckier and have no unexpected problems.

Flossie47 profile image
Flossie47 in reply to austin3849

Thank you for responding, Hope you continue to make good progress

Jo-G profile image
Jo-G

Why has your surgeon chosen surgery rather than trying Gamma knife 1st ?

Flossie47 profile image
Flossie47 in reply to Jo-G

Hi, because it's too big and pushing on facial nerve.

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