new AN, surgery in 3 weeks

[joeelmo79]

Hello all this is my 1st post. I am scheduled for AN surgery in 3 weeks and I have many questions and any info or personal exp.  will be greatly appreciated, I am 29 years old and I am from South Carolina.  I will be having my surgery at MUSC.  from what I understand they will have to cut my facial nerve and use a graft from my neck.  they will also be implanting a gold weight in my left eyelid.  I already have a great deal of facial paralyisis to the left side of my face and I dont blink my left eye.  They told me I should be able to get about 50% of the usage back out of my face & eyelid.  I really just dont know what to expect with the surgery, recovery,  or long term.  I am just really nervous about the whole thing.  I undersand that I will have total paralysis the 1st few months, I am wondering how long and quickly use comes back.  just any of your experiences would help a lot.  I will be posting up until my surgery in 3 weeks so I look foward to hearing from you all.   Thanks,

Joe

[nancyann]

Hi there Joe:  WOW !  I'm wondering what size your AN is ?    As far as having post facial paralysis, I can help you with this.  I exclusively use Refresh PM (sensitive type) for keeping my cornea lubricated - this is the #1 rule when dealing with facial paralysis.  Many people can get by with eye drops during the day,  but I'm not one of them.  You'll find what works best for you.  Glad to hear it's only temporary.
I also use an eye moisture chamber at night, the one I use is called NITEYE  The Dry Eye Comforter, tel#:  1-800-874-5797, they are nonsterile, 14 per box, & cost about $21/box.    Or you can cut saran wrap into a square to fit around the eye & tape it all the way around to make a moisture chamber.  I can't stress enough the importance of keeping your cornea lubricated to avoid corneal ulcers.  If you use a moisture chamber,  don't wear it for more than 12 hours/day - it can become a breeding ground for germs.
I personally never regained movement b/c my tumor really messed up my facial nerve, & I never had a nerve graft other than primary anastamosis, so sounds like your nerve will rejuvenate  (YEAH ! !) - I wonder why the doc said only 50% usage back,   you never know Joe...  could be closer to 100% !
Post op is a killer,  there's no getting around it.  Some people are actually lucky enough to not have too bad a post op;  I personally felt like I was hit by a mack truck !
Balance way off for a few weeks, gets better with time,  headaches for 2-4 weeks,  really bad fatigue for months...   but,  you learn to adjust & life goes on !
Well,  please ask whatever questions come to mind,  we're all here for you.
Always good thoughts,  Nancy

[Jim Scott]

Welcome, Joe ~

I can't offer you specific information based on my personal experience because, although I was diagnosed with a fairly large AN (4.5 cm) and although I definitely had some symptoms, they were nothing like yours.  I just wanted to welcome you to the site/forums and let you know that although we're not doctors, we're here to support you in any way we can.  I know you'll receive responses to your questions, but you should be aware that others experiences may not necessary mirror yours, in terms of healing time, etc. because we're unique individuals and no AN case is identical to another.  However, other AN patients can offer you coping mechanisms and suggest both commercial products and home-made concoctions that might help you endure any problems you may possibly encounter, post-op.  Let's expect they'll be few of those.   

I hope and will pray that your upcoming surgery proves successful and that the facial paralysis you're enduring will soon be alleviated. 

Please feel free to post your surgery date (and any other information you wish) on the AN Treatment Calendar - http://my.calendars.net/an_treatments/d01/04/2009?display=M&style=B&positioning=A so others can be thinking of you (and praying for you) when the Big Day arrives. 

Jim

[joeelmo79]

thanks for the input, the size is 9x5x5 at the last MRI, at 1st most Md's in my area did not know what they were looking at, they thought it was a meningioma and was not causing my facial paralysiis,  but after being evaluated at the medical university the specialist knew exactally what it was and where it was.  I am a nurse by profession so I have done a lot of research myself but I know you all that have been through this already have life experience that would be usefull.  I am pretty sure that they are going in above and behind my ear for the incision.  I plan on keeping on posting from now until my surgery giving updates, and post op to follow my progress and ask for advise.  I really thanks you for your posts and look foward to talking to you all.  I have been using gel drops in my eye for about 3 months now and restastis cream at night with my pirate patch. also my surgery date is 3/30/09

thanks
Joe

[lori67]

Welcome Joe from another forum member/nurse!  There are quite a few nurses here for some reason.

Well, I guess since you've already been dealing with the facial issues, you won't be in for too much of a surprise after surgery.  I guess that can be a good thing.  I agree with Nancy that your chances of getting good function back in your face could be better than you think.  It's amazing what they can do these days.  I'll keep my fingers crossed!  I had a nerve graft done at the end of September and I'm already getting quite a bit of movement back.

Good luck to you and I look forward to hearing good news after your surgery!

Lori

[anissa]

Just wanted to say "welcome", you've found a great resource here. 

[sgerrard]

It's amazing how much trouble a relatively small AN can cause. Sorry to hear about the facial nerve situation, Joe. I hope something works out for you. There have been remarkable comeback stories on this forum, so there is certainly reason to be optimistic. Welcome to the forum.

Steve

[chopper]

Have you looked into other options or gotten second and third opinions?

Granted you are already dealing with some issues, but severing of the nerve really wouldn't sit well with me. Especially one dealing with facial movement.

[Cheryl R]

 Hello,          I have been thru the same type of surgery.              Is your tumor a real facial neuroma or one that is causing damage to the facial nerve.          Are you gong to a surgeon who is very AN experienced?     1-2 a week is a good number.    Has he done many other nerve grafts?   
I had this done  3 yrs ago as did have a facial neuroma.     I have NF2 so this was my 2nd surgery on the same side.    Other than a longer incision the post op recovery is similar to regular AN surgery and one will have the facial paralysis.          My nerve was taken from below the ear and the loss of the nerve makes one have a numb area.     In time there is some contralateral nerve growth so less numb.  Takes a while though.              Living with the paraylsis is not fun but one adjusts more than you think you would.     I was told it would be at least 8 mos before improvement and that was about right.    It can continue for a long time after also.    I did not return to all the way normal as have not complete movement and poor smile but could be worse.      I did not do the eye weight.      I managed without and did have eye closure return.     I still occ have a day where may need some eye drops and always do some gel at night.    I forgot one night and it never bothered me but think I do better with it.     I always use Refresh Liquigel if needed in the day.
I had no balance issues with this surgery due to the previous surgery.        You will be the very tired and usual recovery which takes time.              I did end up with a CSF leak 2 weeks later and more surgery as they were using a new colloidal implant and 3 people had leaks.    They went back to the older more expensive one then.             So I had quite the incision x2 afterwards.             I was back to work in 2 mos as a nurse also ina smaller rural hospital.      I was also after the 2001 surgery.      I did retire last year as the next bout of surgery in April 2008 was on the other side due to almost complete deafness but my mid fossa improved hearing greatly and I did not need a cochlear implant.       I have just stayed retired.     I am almost 57.        I go to the Univ of Iowa for my care and am very happy we have a very experienced surgeon in Iowa.     
     Feel free to ask any questions and I wish you well!                    Cheryl R       

[joeelmo79]

thanks for all the replies,  I value everyones input.  at this point the left side of my face is pretty lifeless,  I just cant controll it.   I have adjusted to the hearing loss pretty well, with the occasional  "huh what was that you said".  My headaches have been getting worse over the last couple of weeks,  I have about one bad one a day.  I just take tylenol and get on with my day.  today was a better day, It is warm here today so I got outside for a while.  an as for a second opinion the medical university was my second opinion.  I first saw a neurosurgion in my area after the an was found, but he did not feel comfortable doing a nerve graft, and sent me to musc to Dr lambert.  After getting an IAC view on the MRI then he knew what we were dealing with.

[leapyrtwins]

the size is 9x5x5 at the last MRI

Okay, I'm confused here and need some clarification.

When I first read 9x5x5 I was in shock because from all the symptoms I guess I just assumed you were talking a large AN (as in 9 cm) 

But then Steve referred to how small it is (as in mm).

It's almost 2 a.m. here and I'm dog tired so maybe I just missed it - but are we talking cm's or mm's here? 

Jan

[joeelmo79]

MM not CM, it is fairly small from what I have read, but from what I understand its all about placement as far as my problems go.  If it was not causing any problems we would probally watch it for a while, but it is causing too many problems not to treat it.  The facial weakness has progressed over a 10 month period, my hearing loss also.  my last Auditory Brain Response test on the left side showed nothing on the left side (the problem side)  my right was perfect.  That is when my ENT sent me to the Medical University.  I also want to thank everyone for the warm welcome to the site and for all the great info so far. 

[leapyrtwins]

joeelmo -

I'm very relieved to hear we are talking mms, not cms.

Satman holds the record on the forum for the largest AN (8 cms) and for a little while there I thought you were going to displace him.

There are lots of cases of small ANs causing large problems and vice versa.

In your case I think you are absolutely right in your decision to treat you AN rather than watch & wait.

Jan

 

[CROOKEDSMILE]

I woke up thinking about this post this morning and had to ask because it is really bothering me. (I have facial paralysis by the way). If this AN is so small why would they cut the facial nerve as many folks have the AN on the facial nerve and sometimes it will peel right off. How do they know that they need to cut the facial nerve before they even get in there to assess the situation? This just doesn't make sense to me. I would hate for them to cut your facial nerve if it can be saved as most doctors do their best to save it. I understand you already have facial issues.......do you have a facial neuroma? It is wild that this little tumor is causing so much trouble but I understand the placement thing......but still.......it could possibly still be removed without disturbing the facial nerve. Some peoples tumors are wrapped up in the facial nerve and the nerve still doesn't get cut.....maybe stretched and they end up with paralysis but they eventually get some recovery. I don't want to discount your doctors but we have to be our own patient advocates and ask LOTS of questions because it is our bodies, our faces and we care more about US than anyone else. Maybe you've gotten all of these questions answered but I didn't see it in any of your posts so I was just wandering. It bugs me because facial paralysis is tough. You already deal with it but once the tumor is removed and the nerve can regenerate then your paralysis will improve. I just believe that some doctors take cutting the facial nerve too lightly sometimes and I don't want that to happen to anyone unless it is necessary.
Angie

[Jim Scott]

Joeelmo ~

I have to concur with Angie ('CROOKEDSMILE') on the issue of the doctors claiming they'll 'have to' cut your facial nerve - before they perform the surgey that will allow them to see the actual tumor.  This would be a red flag for me.  Of course, the nerve may have to be cut - but to pronounce it as a given seems problematic.  I would seriously question this before committing to anything - and second opinions are always a wise idea.

Jim