I have my operation 22nd October. How will it affect me?

[Kevin Brown]

Hi, I am new to this forum. I have a facial nerve tumour and it is finally going to be removed in a week and a half. I have read a lot about this and been told a lot. I guess I am not looking forward to the operation because of the risks, albeit low but also the long road to recovery.

I like to think I am strong and try to tell people that I am fine but underneath I am so sad as I know it wont be pleasant. I am due to get married in just over a year but I don't know if I will be right by then, right anough to look not too bad.

My question is how did the removal of your facial nerve affect you psychologically?

[Jim Scott]

Hi, Kevin ~

I'm probably not the best AN patient to answer your question but I'll offer my experience, anyway.

I was diagnosed with a large (4.5 cm) AN in May, 2006.  The neurosurgeon I engaged proposed a two-stage plan of attack on the tumor with the goal of (a) destroying it and, (b) doing so without inflicting facial nerve damage.  In early June of 2006 this gifted neurosurgeon (now retired) 'de-bulked' the AN down to approximately 2.5 cm.  He did that by peeling off layers v-e-r-y carefully (with the help of his talented protégé) causing the tumor to lose mass and fold in on itself, making it more susceptible to the radiation that followed three months later (in a pre-planned process).  My AN symptoms (dizziness, loss of my sense of taste, stabbing pain at the AN site) all disappeared within hours of the surgery completion.  In September, 2006 I underwent 26 sessions of precisely targeted FSR (a total of 27 Gy) and suffered no ill effects.  Subsequent MRI scans indicated the remaining tumor showed necrosis and some minor shrinkage.  Since then, I've been doing great and life has long since returned to normal.  I did not experience any facial paralysis or other complications following the surgery.

Unfortunately, as you know, not every AN surgery patient has the same outcome and some patients do experience facial paralysis and other issues, post-op.  I credit prayer, faith and my doctor's skill and experience (over 30 years) for my good outcome.  I'm pleased to note that other AN patients have had a similar outcome to mine and so, your post-op future is not necessarily as bleak as you may suppose. 

Psychologically, having complete faith in your medical team and a positive attitude help, going in.  I had that attitude and so, when I came out of the anesthetic fog I just assumed I would be fine...and so I was.  I don't attribute my good surgical outcome to simply 'positive thinking' but a very compassionate and highly skilled surgeon that took his time and knew what he was doing in order to allow me to address the AN and not lose facial functions in the process.  That's why we always emphasize the importance of seeking out a very experienced surgeon for your AN removal. 

I'm sure others with different experiences will soon be adding to this thread and I hope they can supply you with the answers you seek. 

Jim     

[alabamajane]

Hi Kevin,
My experience did involve facial nerve so I will respond to your questions,, I did have AN not facial nerve tumor however, my tumor had grown into facial nerve so it was "sacrificed" to get the tumor out completely,,,
Truth is, it is not easy to deal with as you have indicated, I was very depressed after awakening to facial paralysis ,, I knew it was a possibility but not inevitable,, it took me quite awhile to adjust,, just being blunt here,,, I did have the 12/7 nerve graft 4 days after AN surgery,, I am assuming Dr has discussed this with you, if not ask him/her about it,, this will give you the possibility of regaining movement in you face over time ,, it is 12-18 months before the nerve regenerates so it is a VERY long process that requires that you develop patience and not expect "miracles" to happen quickly,,, again, this is what I experienced and was told would happen ,, not medical advice, I am not a Dr,,,I also had a gold weight implanted in my eyelid to help it close correctly ,, next week I have surgery to have it removed as Dr thinks I have regained enough facial movement to close it on my own,, I am very hopeful he is correct! It has been two years this month since my surgery but at rest you would hardly know anything is wrong with my face, my eye does close when I eat due to tongue movement controlling my AN side of face now,, and when I talk I look (to me anyway) kinda like a pirate ,, ,, the AN side of mouth does not open yet all the way and may never be quite what I'd like,,, however,,,, after much soul searching in the early months,, I have come to realize it could be much worse,,,, I have a wonderful support system in my family,, husband, kids, and grandchildren,, who still love me as is mad have been wonderful to push me through the hard times..

I am not saying this will be easy AT ALL,, but not impossible to adjust to either,,, just have reasonable expectations going in,, talk to your Dr and get all the info you can, and be resolved to the fact that you have a journey to take that is going to be long and hard but not undoable,,,,, talk this over with your fiancé  and involve that person in the process and LET that person help you through it,, don't shut out the people who love you,,,,you will need the love and support of those who care for and love you now more than ever,, and they will be there for you,,, I wish you the very best,, I have been in your shoes and like many on here ,have made it through to the other side as a "postie" now and you will too!! I don't mean to scare you or "sugar-coat" the experience,, just my personal thoughts on what I have been through,,, you can PM me if you have other questions or if I can help,,,
Jane

[didyb]

I had my removal Sep 23, 2013-- so am still "fresh" in the recovery stage. My tumor was 2.2cm and I lost my hearing. This is not a huge issue at this point, but I will be looking into hearing devices after other issues are addressed. Balance is not so much an issue, as my other side had been compensating. It was really strange leaving the house for the first time, but the more I get out, the more I adjust. My facial nerve is intact, but not active. I'm told it could take up to 2 years to know how much it will bounce back. I'm having a gold weight put in my eyelid this coming Thursday to help with vision/dry eye issues. I was in ICU 1 night (hated ICU unit) and on the neuro floor another night- then told I could go home. I went home, but probably should have stayed one more night.
From previous "trauma" of having 3 kids, I knew that I could have some "weepy" days-- but was not (am not) prepared for how alone I feel. I prepared by gathering together (yes, on Pinterest) as many positive affirmations I could find. (board A.N? Ha!) and they do help. I have a solid religious base to stand on, but still feel alone. I was kidding (sort of) with my 16 year old daughter that surgery gets about 2 weeks of care- then you're on your own-- and in my case that's sort of true. I've had an acupuncture session for depression and over-all health and have a follow up session this week. It seemed to help.
You say you're getting married in a year-- and that's good. So much can happen in a year-- a year is enough time to accommodate you and your fiancé to accepting the new circumstances.
You will not have the "shock" that some of us have had of waking up to facial paralysis, because you already know you will have it. You've had time to research plastic surgery options. You've had time to discuss getting an eyelid weight ASAP to avoid eye injury to the affected side. Hopefully knowing that your appearance change has surgical options will be comforting. Since you know that the nerve is gone, there won't be a waiting period to see if it gets better- you can act on plastic surgery as soon as you and your surgeon feel you're ready.
I highly recommend finding a support group- AN, Bell's Palsy, Stroke- to discuss issues. I'm looking for one now.
Do not hesitate to ask for help from anyone- those close by and those on this site.

[Kevin Brown]

Thank you for your replies. I value your feedback immensely. I maybe should have written a bit more of where I am at. I know I will have complete facial paralysis. My tumour was 25mm 3 months ago. My facial movement on the affected side is currently at 36% and Ive been told 19% would be really good afer the op. I have a lot of weakness now, eye problems and my nostrel on the right side closes if I lay on my left. I am dealing with these. I have gel for nighttime and artificial tears for the day. I have started to use nose strips to keep the nostel open.

I feel I have been well informed by the hospital what to expect. My surgeon seems really good. I know I am at a good hospital with a great reputation. The risks of the operation concern me a bit but I know I can't do anything about that and I am in the hands of my 2 surgeons and their teams and I have great fiath in them.

It is the long road to recovery that is playing on my mind. I will probabaly be coming here for moral support at times. I know things could be worse but it still doesn't make this easy. However, I will stay positive and strong and just deal with things as best one can. I was told it could be 3 momnths before I am back at work. Is this aout right in your experience?

Thanks again for your support and words of wisdom.

[Gloria Nailor]

Hi there, I returned to work three months after my surgery, I remember being so exhausted, but it got easier as the days wore on.  Good luck on your upcoming surgery, I remember how frightened  I felt leading up to it and just wanting it all to be over.  Talk to your family and fiancé, don't hide how you feel, it is so important to try and not hide your feelings. I have a history of depression and tried to act like I was not afraid of my diagnosis and surgery, I didn't sleep well for over two weeks, was getting 1-2 hours of sleep and one night took a sleeping pill prescribed from the doctor, it had an adverse effect on me and I became psychotic, ended up in a psych hospital for nine days, longer than I spent for my brain surgery.  I know this is definitely not the norm, but as I look back I see that I should have been more open and forthcoming with my feelings, my son was 18 and I was trying to be strong for him. I should have been seeing a therapist and talking to anyone who would listen to help me sort this out emotionally.  I still my psychologist and a psychiatrist and it is two years later.  I can't stress sharing your concerns with others enough, don't try and hide things and be strong for others, reach out and talk. Take care and be well.