Facial Neuroma in Australia

[mattp]

Hi all,

Have just discovered this forum while looking for people who may be experiencing what I am going through. Having read a small sample of posts, I am heartened by the amount of positivity on this board. It seems that there is a lot of goodwill and great advice out there.

To give you all some background on my story, I was 26 years of age when I began experiencing shocking headaches, facial numbness on my left side, and terrible tinnitus in my left ear. My hearing was perfectly fine. On seeing my GP, he immediately sent me to get an MRI scan. 45 minutes and with contrast added half way through, my GP then advised that I had what looked like an AN, with what looked like a large cyst attached to it. He referred me to an ENT and the Neurology department at the Austin Hospital in Melbourne.

After being poked, prodded, spun around and going through what seemed like endless testing, I was told that the tumor and the cyst attached to it were pressing on my brainstem and the situation was serious. Within 3 weeks, I was booked in for surgery at the Austin for the removal of the AN.

Upon waking up from the surgery, I was told that the surgeons in fact found a very large facial nerve neuroma measuring 5cm+ plus the large cyst attached to it. The surgeons successfully eliminated the cyst, and debulked as much of the facial nerve tumor as they possibly could, without severing the nerve itself and leaving me with permanent facial paralysis. Post-op, I was a House-Brackmann Grade 4-5, however within 2-3 months I had recovered to a HB Grade 1-2. My tear duct on my left side does not work, and I am completely deaf on my left side, while still having chronic tinnitus.

I was told that constant MRI scans would be needed (every 9-12 months) to ensure that the tumor was not growing at an exponential rate. The surgeons were confident that it would be some time before the tumor grew to a point where I would need further treatment......except that ....

18 months down the track and in November 2012, my follow up MRI scan has showed significant growth. In February, my FN measured 1cm and it has now grown to approx. 2.5cm with some cystic degeneration to boot. Bugger! I was hoping for at least 5-10 years of normality, but now it seems that cannot be. I have seen two of my surgeons, and am scheduled to see another in late January. Surgery is likely to be late Feb-early March with the aim of de-bulking again, as I am not ready for the big operation to remove the whole thing, resulting in HB Grade 6. I am a young man with plenty of living to do!

So the plan is for the de-bulking operation, to be followed by radiosurgery 4-6 weeks after the operation. The general consensus is that my tumor is an aggressive little bugger, so the radiosurgery will hopefully stop its growth from happening. I am staying positive - after all, its not cancer!!

I really don't know why I am spilling all this, except I guess I needed to write it all down and see if anyone else out there has experienced a FN and all of the ramifications that come with it.

It's NYE tonight, and I have to admit, I am not approaching the new year with the same gusto that I usually do.

Anyway, would love to hear some feedback/thoughts/opinion from anyone who wants to offer their wisdom.

Cheers!

[Jill Marie]

Hi Matt,  Just read your post but don't have time to post much right now as I need to head to bed as I work in the morning.  I had surgery for a Facial Neuroma 20 years ago so understand some of what you are going through.  I just skimmed your post, will reread tomorrow and see if there's anything I can say that will help you.  The board has been a little light on the postings because of the Holidays but I'm sure it will pick up soon and others will post as well.  Just wanted to let you know I was thinking about you.  Jill

[mattp]

Hi Jill,

Thanks so much for your reply and for the kind words.

These things that we have are so rare, its nice to find someone who has been in the same boat ... albeit some time ago! How are you doing 20 years on?

Cheers,

Matt

[Jill Marie]

Hi Matt,

Just reread your post, had to stop now and then to let what you have been through soak in.  Yes, 26 is to young for what you are going through, hopefully the doctors can take care of things this time around so you can go out and enjoy yourself.  I was 32 when I had my surgery, married with 2 young children.  My hearing loss started before I went to school, had severe earaches a few years before the surgery, my tumor was very slow growing unlike yours.  I was fortunate in that I didn't have the headaches, facial numbness nor tinnitus that you have.  So sorry to hear(no pun intended) that although you have no hearing in the left side(same with me) you still have the tinnitus.

I was also originally diagnosed with an AN, the day before my surgery the surgeon did some more testing and told me it was a Facial Neuroma.  He said my eye wouldn't tear at first but should after some time, still doesn't tear, said my eye wouldn't blink but it did from day one but only when my other eye blinks, said I couldn't drink from a straw, couldn't drink from the glass of course so my husband talked me into trying a straw and it worked.  From then on I knew that I would just have to wait and see what I could and couldn't do and try things despite what I was told. 

Having been on this board for quite a few years it amazes me that I still hear so many different stories about the sizes, location and side affects of the tumors.  I knew that AN's are sometimes around the brain stem but didn't know a FN could do the same, it sounds like the cyst greatly added to your issues.  I was wondering why they don't completely remove the tumor if you already have facial paralysis, I realize there are different grades of it.  As far as I can tell by reading my reports and what I was told after the surgery they severed my nerve then put in a nerve graft from my neck.  I don't know what House-Brackman Grade I'm at but I can tell you I can't smile, have small grin, face looks normal at rest.  If you can still smile I can see why you don't want the nerve severed, I would like to smile again! 

As for why you are posting all this, it's because it helps to write about what you are going through and it really helps to share with others that have similar issues.  Family and friends can be good listeners but they haven't been through it.  It's been 20 years for me and I still write about it.  It continues to be a big part of my life.  Thankfully just last month I saw an eye doctor that specializes in contact lenses for people with severe dry eye issues.  I went from wanting my eye removed because of all the pain to a pain free eye and only using a little bit of ointment.  Day by day I see the changes in my life and can't wait to enjoy all the benefits of not putting ointment in my eye every 5 to 15 minutes.  Won't bore you with the details but I will tell you that after 20 years this is the first year that my eye/tumor issues won't be such a big deal.  I have this board to thank for that.  The eye doctors I've seen said they couldn't help me, I knew more about my issues then they did.  Then Dena King posted on here about a special lens for people like me. 

Sorry to go on so but I just wanted to try and let you know that there are so many things that can still happen for you and hopefully for the best.  Lots of things to try, different doctors to see and time is on your side.  I hope that your next surgery stops or at least slows down the growth of your tumor so you can get on with living your life the way you want to. 

Let me know how it goes!  Jill

[mattp]

Hi Jill,

Thanks so much for all of those thoughts. I wouldn't say its comforting to have someone out there who has gone through similar, as its not nice to hear of anyone going through this, but it certainly helps!

I think the fact that I'm so young is what is getting at me most. There are things I want to do in life, such as meet someone and have those children, do alot more travelling and generally live it up. While I know I can still do all those things if I have the tumour completely removed, it definitely makes it more .... daunting, difficult, I'm not sure what the right word is.

I'm really sorry to hear that you can't smile anymore - I was very thankful when mine came back, so I can't imagine how hard that was for you in the initial stages (and I'm sure it still hurts). While mine is a tiny bit different than before, to be honest, most people don't notice it. If I can be really upfront with you, can I ask a bit of a confronting question? How does not being able to smile affect you? Has it changed your life much? It is definitely the thing that I am dreading most, because I am confident I can handle everything else that would come with it.

The dry eye was definitely a challenge to begin with, however I was lucky in that it went away relatively quickly. Fantastic to hear that you have options to explore!! I can imagine that the first days of not putting ointment in your eye every few minutes will be amazing! I am hopeful that the next bout of surgery will be as successful as the last, in that my eye returns back to relative normality.

At this stage, I am almost looking forward to the surgery while dreading it at the same time. I am starting to get headaches in the morning, which is a sure sign things are progressing. The sooner it gets cut away, the better! I know I can get through the surgery with no complications, as I did it last time. I am a big believer in positivity helping the cause, and I am confident that I can use it to get through. I know what to expect this time, and I think (hope) I will have learnt which things to do better in my recovery.

Thanks again Jill, your insight and understanding of the situation is .... a relief in some ways. Family and friends try to understand, but at the end of the day, they don't really know (if that makes sense).

I will definitely keep you posted as we go - only 2 weeks until the surgeon makes a date, so we're getting closer.

Happy New Year

Cheers,

Matt

[Jill Marie]

Hi Matt, 

I understand your concern about your age and wanting to meet someone, start a family, travel etc.  Please keep in mind that everyone has issues they are dealing with, some more serious than others but still they are things that bother them.  Some things you can see and others are hidden tell you get to know the person.  What's really important is taking the time to understand each others problems and helping one another through them.  I've been married 36 years this March, he helped me through the surgery and other problems that came about because of it and I have helped him with things that he had been dealing with since before I met him but didn't know about and things that have come up since then. 

Removing the tumor will make what you want to do more daunting but what does your life look like in the future if you don't have it completely removed?  Is the HB6 a permanent state or can it get better after surgery?

Glad you asked about not being able to smile.  While there are some people on the board that don't have any problem with the fact that they can't smile or smile like they use to, I'm not one of them.  What I mean is, they are ok with not smiling, it doesn't bother them to have there picture taken or to attempt to smile in public.  I on the other hand don't like to have my picture taken and if I'm at work or in a group of people and start to laugh I stop myself because I know my face doesn't look right when I do.  I wouldn't be surprised if it bothered me more than the people I'm with at the time, I've never asked anyone so I don't know for sure, don't know if I would get an honest answer. 

Three year after my surgery I got a job working with the public.  I've had lots of people ask me about my eye and an occasional person say, "Hey, SMILE, it can't be all that bad."  Sometimes I let it go the best I can and other times depending on what they say and who they are(regular customer) I will tell them briefly why I can't smile or why my eye doesn't water when to them it appears that I have allergies.  I have found that most of my customers can tell by the sound of my voice and what I say that I am happy to see them and willing to help in anyway I can.  I don't have to smile to get my point across and as one customer told me when he asked about my not being able to smile, "I can see the SMILE in your eyes."  I have a new boss and I can't always tell by looking at him when he's joking, have trouble figuring out if he's being serious or not and he has full use of his face so if a coworker can't tell for sure if I'm joking or not it's not a big deal is it!   

If a doctor told me he could fix 1 of my 3 side affects of the Facial Neuroma, which would I choose?  Hands down for me would be my eye, 2nd restore my hearing and 3rd give me back my smile.  Hope this helps put things in perspective for you. 

I totally understand what you mean about family and friends, there's a big difference between trying to understand what you are going through and actually having gone through it.  Speaking of family and friends, do you mind if I ask about those that are helping you through this?  Such as, will someone post on the board after your surgery to let us know how you are doing? 

I hope you are able to keep busy the next couple of weeks despite the headaches so time goes quickly and hopefully the surgery won't be long after that so you can start healing and have a better idea of what you are dealing with. 

On a lighter note, I think!  How are you dealing with the weather, I read on the Internet today that the average temp in Australia is 106. 

On a lighter note for sure, have you heard of Geo-caching?  If you have then you know what I'm talking about when I say that one of our Travel Bugs is currently in Australia, not sure where but he's been there for a year! 

Take Care, Jill

[Cheryl R]

Matt, I also have had a facial neuroma as part of having had it and also 2 ANs as part of having NF2.      I knew it was probably a FN when had the surgery in 2006. My surgeon at the time said if the nerve was severed, he would immediately take some nerve from by the ear and graft in.     This did end up having to be done.     It took several months for improvement but I did gain movement.      I do not have any around the eye but the eye does close and tear fairly well.          I am much older compared to you but was still working as a registered nurse.      My co workers were very nice as were patients but I was not happy with my face.       I did get back movement that I look ok but my smile is off and one learns how to do a closed mouth smile in time.       I could be much worse off due to my having had surgery on both side with its own set of issues and my life is fairly normal.      I am now retired from work.            This has to be hard for you when one does not know ahead exactly what is ahead for you.        There are some types of surgery one can have done to bring back some improvement to the face which can be checked into if ever needed.            I hope your surgery does go well and radiation done if needed.       We all are very individual how this all goes for us and you sound like you are doing as well as one can for your own situitation.        Keep knowing we are here for you and want to be of what help we can.                        I wish you well!         Cheryl R

[mattp]

Cheryl & Jill,

Thanks so much for your posts, its fantastic (in a grim kind of way) to hear the thoughts and perspectives of two people who have had the same type of issues to deal with.

Cheryl, I'm awfully sorry to hear about your past surgeries - what a traumatic time that must have been. You seem to have got it through it all amazingly well. It is encouraging to hear that a nerve graft was successful, in that you re-gained some movement! I think one of my biggest fears is that I will never re-gain any movement if the day comes that I need the whole thing removed. Its a completely irrational fear when you consider that its a life-saving procedure, but the ramifications still hold their own. I have indeed heard of surgical procedures to improve the face, and its definitely something I will look into should the need arise.

Jill, it's hugely interesting to hear about your experiences. No doubt we all have our issues - the worries I have about meeting someone etc. are secondary to the fact that my life will be saved by having this tumour de-bulked/removed. Hopefully there is someone out there who won't even blink when they hear my story

Your question about what life looks like if I don't have it completely removed is certainly something I have gone over myself a huge number of times. The HB6 is possibly permanent, possibly not. All depends on how the resulting nerve graft performs and how those nerve ends knit together. As I have said before, I'm not ready to be a HB6. I am willing to take my chances that another de-bulking operation with follow up radiosurgery will nip this whole thing in the bud - at least then I have tried right? I can say that I gave it a crack (to use an aussie saying ).

Thank you for answering my question re: smiling. In the weeks directly after my first operation, I did exactly what you have been doing, in that I would stop myself from laughing excessively or smiling alot. I would cover my mouth with my hand so that people couldn't see it. I think that your attitude towards the whole thing would be similar to mine in that I would tell certain people of the situation if they mentioned it, and let it go with others. Your thoughts have definitely helped me on this topic!

You can certainly ask about family & friends! I'm very lucky to have hugely supportive parents & siblings, as well as a large group of really close friends who are being just great. My mates are even buying me a trip to Bali during the year as something to look forward to. Very grateful for all of their support. I will try and get a friend to post on this board post-op so that you can stay updated, for sure. If not, don't worry, I'll be back online within a week of the operation to let you all know how it went.

The weather in Australia at the moment is pretty disgusting really! Lots of terrible bushfires around the country, we are all hoping we get some relief soon, as much for the firefighters as anything. Alot of them are working 24-7 to protect peoples lives and property. Also, I am getting sunburnt!

Thanks to you both Cheryl & Jill again, your support and kind words are so very much appreciated!

Speak soon,

Matt

[Jill Marie]

Hi Matt,

I skimmed the previous posts and don't see where I said anything about my nerve graft.  To be honest back when I had my surgery I don't know what the options were, have no idea if de-bulking was an option or any of the other choices we have now.  I was told I needed surgery so I did it.  Anyway, the nerve was severed and a part of a nerve from my neck was removed to put in it's place, unlike Cheryl who had a nerve by her ear used.  Then they removed some fat from my stomach so they could put it where the nerve in my neck was removed.  As the story goes, the doctor SAID he would remove the nerve from my neck, which I wasn't thrilled about because of the smiling issue,   then he ASKS, if he can remove fat from my stomach!  I told him to take all he needed as I had a bit more then necessary!   So to recap, at rest my face looks normal, when talking normal, small grin, no smile, could probably do a bit of a smile but it also changes other parts of my face so it doesn't look quite right, my eye blinks.  Please keep in mind that this was 20 years ago and thinks have changed a lot!

I wanted to tell you this so that in the off change that this next surgery doesn't work you don't have to worry so much about it.  I of course don't know for sure but considering I had the surgery and have a lot of movement I don't see where yours would end in no movement.  I figured you had thought a lot about the pros and cons of just getting rid of the tumor all together, I agree, it's to soon to take it out now with other options available to you. 

It's not irrational at all to fear the unkown, yes, the surgery could come to the point where there's no choice but it doesn't mean you shouldn't wish you could have it removed and still carry on as usual. 

As I mentioned before I'm a Mom and Mom's just seem to know things and from what I've read from you so far I can tell you are a very warm and considerate person so you won't have any trouble finding someone special.  I'm really glad to hear that you have your family and friends to help you through this.  More importantly they have already shown you their continued support since your first surgery so you know they will be there again.  I have to admit though, I'm a bit jealous, I didn't have any mates sending me on a trip to Bali!

I saw some pictures today of the weather conditions you have been dealing with, sure hope it improves soon. 

Have a wonderful weekend!  Jill

[mattp]

Hi all,

Thought I'd give a quick update, as it has been a couple of weeks.

I've seen my new surgeon, who had some interesting thoughts. Summary is:

a) He is not convinced it is a facial neuroma, as the portion of my facial nerve that it is supposedly on rarely has these things grow on it. Apparently I am a rare breed! While he said "if the old surgeon said it was a FN, then it likely is", he is going into the surgery with an open mind into what he might find. He is leaning towards an AN now, so if that is this the case I will be over the moon! If that's what he finds, he'll remove it and I will be tumor free.

b) If it is indeed a FN, he will try one of two things:
    (i) Debulk the tumor as much as possible, to a point where he would be happy for radiosurgery to be done on it. Thus leaving the facial nerve largely in tact.
    (ii) If he can't debulk to a point where he's comfortable with radio, then he will be removing the whole tumor, including the portion of facial nerve it is attached to. A nerve graft will then be performed at the time.

So basically, I am hoping beyond hope that it is an AN after all and he can remove it without affecting my facial nerve too much. On the other hand, if it is an FN and it has to be removed, well, that sucks - BUT I would much rather have a face that doesn't quite work like it is supposed to, rather than the risks of cancer or brain stem damage from radiosurgery to a greater surface area of my facial nerve.

Fun times ahead, but the support of friends & family (as well as a select few on this board) has been very comforting and I know I can take anything in my stride - here's looking forward to the second half of 2013 !

[Jill Marie]

Hi Matt,

Sorry I haven't posted sooner, lots of things going on in my life right now.  I've been thinking about you though, in fact, my husband asked about you a week or so ago as I mentioned him to you.  I'm glad you have seen a new surgeon so you have a second opinion on what you are dealing with.  I too am hoping that you have an AN not a FN, will still post to you even if it does turn out to be an AN not a FN like I had, ha, ha! 

It doesn't surprise me that the surgeon is questioning what you have, it's so hard for them to tell sometimes despite the advanced equipment they have.  A lot of the time they don't know for sure what they are dealing with tell they get in there during surgery. 

I don't know anything about the debulking followed by the radiosurgery so I'm no help there.  I do know about the nerve graft but please keep in mind that every one's surgery and outcome is different especially those like me that had it done YEARS ago! 

If you would like a bit of inspiration check out the Eye Issues posts, Schleral Lens by Dena King.  Don't recall if I mentioned it to you or not but I and a couple of other posters have recently found out about a lens that has let us stop using eye ointment during the day.  I'm mentioning this to let you know that if things don't turn out the way you wish they would that it's possible that in a few years they will come up with something that will help you. 

Please let me know when your surgery is!  I too am looking forward to the 2nd half of 2013 as I will be enjoying the sunshine through my new contact lens and not hiding from the sun.  Looking forward to hearing how you are doing in the 2nd  half of 2013!  Jill 

[mattp]

Hi Jill,

Thanks for for your post. Hope everything is ok in your life - it sounds like you're very busy.

No date as yet for the surgery, which is annoying as I am starting to get some epic headaches a bit like last time. Seeing the surgeon again next week, so hopefully he gives us a date then. Until we get a date, I'm keeping myself busy at work and trying to stay as active as possiible - although I can't jump anymore without pain, so any running sports are off limits for now.

Nerve grafts are indeed different for everyone. The fact I'm still only 27 yo gives me confidence that my nerves will knit together as well as they can over a long period of time and give me the best chance of facial function.

Interesting to hear about that new lens, if things turn out that way, that is definitely something that I will probably look into!

Thanks again Jill, I'll post again once I have a date for the operation

Cheers,

Matt

[Jill Marie]

Hi Matt,

Yes, I've been busy, they fired our manager at work so there's been a lot of extra work to do.  A young man I've known for about 7 years was put into a home a couple of weeks ago and I'm trying to help him get back with his father.  He is Autistic, his father has pretty much raised him all his life and the mother got custody of him a few months ago, couldn't handle him so put him in a home.  Haven't posted much because I spend a lot of time making phone calls and emailing to try and help him. 

Sorry to hear you are having headaches, I don't recall that being a problem for me, thankfully.  When the tumor is affecting your daily life it is definitely time to take care of it.  Hope to hear from you this week with a date for surgery, dealing with the daily issues and wondering what is in store for you isn't something you want to keep doing.  Glad your working and staying active, they say being in good shape/health also helps with the outcome of the surgery, along with as you say your age. 

I'm hoping that the lens isn't something you will need but it does help to know it's out there and more importantly that there are people working on new things for us and others trying them out and letting us know what works and doesn't.  I have this board to thank for the lens, the doctors didn't tell me about it despite asking for help several times. 

Looking forward to hearing from you, Jill

[Kaybo]

Hi Matt!
I am late getting to this thread as I don't get on the Forum much anymore.  I was 25 when my tumor was discovered...I won't bore you with all the details but it was "huge" (the size of a man's fist), I was on the operating table for 14 hours and had a surgery induced stroke.  I was a PE teacher and coach before so this was EXTREMELY life changing.  I have definitely had my challenges over the years (17 now)but I have an incredible life.  I went on to have 3 daughters and my husband and I are VERY involved with them. Yes, my life is VERY different than we thought it would be - we'd only been married a year - but it is great, none the less. I don't like the fact that my face is paralyzed, but I always try to remember that there are people that are much worse off.  The good news is that surgeries and "gadgets" are being introduced every day to help people like us!!  I have had "several" surgeries, but my face is by far better now at 17 years out, than it was the first few.  I actually can manage a small open mouth smile now - something that I was told I would NEVER do - even after the surgeries.  Please don't lose hope...If I can be of any help, please let me know!

K   

[mattp]

Alrighty! I finally have some news of worth.

Have just seen my surgeon, and the operation is likely going be either next wednesday 6th March or the wednesday after, 13th March. Nice to have a date for it, and to be able to look forward to something being done. What that something is, we'll wait and see but the surgeon is definitely leaning towards removing the whole thing. I'm fine with that and have come to terms with it (of course, remind me about that in a month!!).

Jill, any wonder you have been busy - that sounds like a very tough situation indeed. It is things like this that bring me back down to earth really. There are so many people who deal with horrible illnesses & personal circumstances for years and years at a time. My ordeal will (touch wood) last no more than a month - puts things in perspective thats for sure. I really hope you manage to get father & son back together soon!

Hi Kay, thanks so much for posting. Very sorry to hear of your ordeal, 14 hours with a surgery induced stroke does not sound like much fun at all. Really appreciate your perspective on things and its great to hear that you have such a fantastic life. It is definitely heartening to hear of all the new surgeries & gadgets that are available to help with facial movement and help with eye problems etc. so I am definitely going into this operation with plenty of hope.

Thanks again to the both of you for posting, I will try and post once more before the operation, and then I'll be back online soon after to let you know how it went.

Cheers!

Matt