new AN, surgery in 3 weeks

[joeelmo79]

Thanks for the input,  That is a good question and I will ask it.   I really have no Experience in this area so I guess I just figured that is the way that it was done,  but you all say that it is possible for the nerve not to be cut then it I also want to know why also.   I will call my Dr.  This afternoon and hopefully be able to get an answer.  I do know Every Dr. that I have seen has called my tumor something different,  From a Meningioma at 1st, Then a neurosurgion looked at it and said it was a Schwannoma then I had another MRI and the ENT said it was a AN or a Facial nerve neuroma,  Then my Ent sent me to the medical university to see Dr. Lambert,  "Supposedly a world renown expert on these things" that is what I was told, but you know how that is,  and he said it had facial nerve involvement and something to do with my inner ear.   He said to get to it he would have to cut the facial nerve where the tumor is and either remove the bones of the inner ear or cut them down, and rebuild them,  I do remember that.   It all is kind of confusing because the cheif resident would tell me part of it and then dr lambert came in and told me the rest.  When I saw the facial plastics dr she called it a schwannoma???  At this point all I know is I have a tumor in or near the IAC Either a Acoustic Neuroma Or Facial Neuroma,  you've got me on which one.  I guess I have been trusting that he is right,  Having worked in the medical field now for about 10 years I know Doctors are not always right,  but I took for granted that if the Dr is so highly regarded in this state that I probally should listen and not ask questions,  but I am going to call his office this afternoon.  After talking and reading a lot of things on the site I have a lot of new questions for him.  Thanks for the input and keep it coming I really appreciate it

Joe

[Pooter]

Joe,

I'm with the others that it would send up a serious red flag if they're saying the facial nerve would have to be cut and they aren't even doing the surgery yet.  That would send up a red flag for me and I would want to know how they know that or why they think that.  Let us know what your doctor says.

Additionally, an Acoustic Neuroma is also called a "vestibular schwannoma" because of where it's originated at.  The tumor comes from an overproduction of Schwann cells--the cells that normally wrap around nerve fibers like onion skin to help support and insulate nerves.  So, when you hear "schwannoma" and Acoustic Neuroma, they're really saying the same thing.

Regards,
Brian

[Cheryl R]

Joe,  I would say there is a good chance it could a facial neuroma from the extent of your facial problems already.    I was starting to have problems about a month before my surgery.       My surgeon told me ahead that if it was and he wouldn't know 100% until he got in there but had a pretty good idea it was that he would be doing the nerve graft.          He would try first to remove the tumor but if needed to sever the nerve would go on to the graft.     
I did look up your surgeon as hadn't heard that name and does sound like has the educational background.   
      I hope you can get your questions answered.                    Cheryl R

[joeelmo79]

ok I have some answers now,  They may have to cut the nerve but will not be able to tell until he gets into the area,  but It is a high possibility.  He also said that he classified it as a facial nerve tumor.  He did say he would have to shave or move bone in my inner ear and is not sure if I would get use back out of it,  It will be a wait and see thing.  He did assure me that no matter the extent of the surgery I could only improve being as now I have little to no use of my left side of my face and Limited to no hearing on the left side also.  so I guess he does have a point there

[CROOKEDSMILE]

Glad you got some clarification. You can never have too much information. Now I can rest. I tend to worry about people and I didn't like them cutting your nerve before they even got in there to see what all it entailed!
Your last post made good sense. Good luck and keep us posted.
Angie

[sgerrard]

Hi Joe,

It sounds like your surgeon is being realistic about your likely outcome, given that you are going in with facial paralysis already. Loss of hearing on one side is pretty typical for AN surgeries, so no surprise there either.

Nevertheless, I insist that you remain hopeful.

I think you should put your surgery date on our AN Calendar, see the link below (or one of us can do it). We will be cheering you on when the day comes, and expect you to report back with every nose wiggle and eyebrow twitch afterwards. Life goes on, and you will make some progress and be able to share it with us.

Steve

[joeelmo79]

Yea, I feel better also since I talked to Dr lambert.  He clarified a lot of my questions.  I also posted my surgical date on the calendar.  I am not really nervous about they type of surgery (since I have been on the forum and read many different things about  different peoples Experiences and recoveries)   just the fact of surgery in general, as I have never had any type of surgical procedure in my life.  I have never been put to sleep or anything,  so I really think that has me nervous the most.  Basically I have been the type of person who is never sick.  Until over the last 3 months going back and forth to DR's appointments I had not missed a day of work in 8 years,  well actually eversince I have worked for my current employer.  So all this missed time has really bothered me. on top of now knowing I have less than 3 weeks till surgery,  but finding this site has really helped a lot,  at least now I know I am not alone.  Its really  Reassuring.  Thanks to everyone here.

Joe

[moe]

Hi Joe,
Just read the posts. Another RN, AN patient! (I'm a nurse). I'm also a military wife, so that makes me a DW, RN, AN. (Dependent wife, registered nurse).
So great that you have this feedback. Will be happy to chime in when I can.
Amazing how surgeons just nonchalantly mention stuff like "We're going to have to cut the facial nerve, so we'll do a nerve transplant during surgery......"
You're like HUH?  Can you imagine how people feel who have no nursing/medical background?
You are way ahead of the game.
Glad to hear it is a mm tumor and not a cm tumor. I had the same thought. OMG that is a huge tumor!
As far as not having surgery before- piece of cake. They put your IV in, give you a little cocktail in it (versed?) and you wake up!
Ask for narcs post op. Sleep through whatever they'll let you sleep through. Will stay tuned....
Maureen

[Cheryl R]

Plus the time now before surgery is more of the scary time than after.    The just not knowing is not fun.    You already have some of the scary afters so a bit easier for you.         You already know how the right side gets marked pre op and  to know  your meds if you are on any or allergies.   
You may have seen our posts on taking glasses with out a bow on one is needed if you wear glasses.    You won't need much in the hospital but a robe and lip balm is good to have.   
I am going to be real curious to see what your outcome is since may be the same as my 2006 surgery.            Actually it was in March also.   
       We will be thinking of you.                        Cheryl R

[Jim Scott]

Hi, Joe:

I'm pleased to learn Dr. Lambert cleared up these issues for you.  Although he may seem a bit negative, he is being ethical by presenting you with the full range of scenarios that could occur, including those no one wants.  Such is the AN labyrinth that we have to deal with.  However, the doctor's comment that whatever happens, you'll end up better off, does have merit. 

Like you, prior to my AN diagnosis and subsequent surgery, I hadn't been a hospital patent for over 50 years (I was 63 at the time) and was less than enthusiastic about the whole thing, especially since I'd read of so many hospital patients being exposed to germs that led to infections.   However, my surgery wasn't really an option.  I dutifully did as I was told - with the great help of my wife - and although I was discharged as soon as possible (on my 5th day, post-op) I was very relieved to have the experience behind me.  Fortunately, my retrosigmoid surgery went well and I suffered no real complications.  My recovery was also quite rapid but, in my impatience, not always as rapid as I would have liked, at the time.  Today, looking ahead to my 3-year surgery anniversary (June 7th) I can state unequivocally that the hospital/surgery experience wasn't really as traumatic as I had expected, although it probably seemed so at the time.  That having been stated, I can assure you that the odds are good that you'll do fine and in a few years from now you'll look back on this experience as a major one in your life, for certain, but one that wasn't anywhere as harrowing as you expected it to be. 

I'm pleased that this website and the forums are some help and comfort to you, Joe.  That's why we're here.    Know that you'll be in the thoughts and prayers of many when your Surgery Day comes around.  Stay strong. 

Jim

[joeelmo79]

at this point I have stayed very possitive. I am believing I will get some use back, and if not, oh well.  I have adjusted pretty well.  I am used to putting drops in my eye and sleeping with my patch, and I dont let it get me down.  I have taken care of many patients over the years with much greater Deficits than I have, and they could still live their lives and smile.  Well I can smile too, just with a big crook in it,  but it is a smile none the less.  so if I get use back, hey great I will take it, but if not People will get used to my unique look, or I know there are other corrective procedures that can be tried later also.  As for post op care,  my wife and mother are both nurses also so I am in good hands there.  I have a 9 month old little girl that I will be ready to get back in the floor and play with too.  So Yea I have plenty of motivation for recovery.  I don't want to rush things as I know your body will tell me when I am ready for things.  Like playing golf and things.  at any rate I have rambled enough right now and I am trying my best to have the most possitive outlook I can for the whole thing,  because it could be worse.  Like I said earlier the only nervousness I have really Is the fact of having surgery.  Agian thanks for the support and info, just taking to people who have been here really helps, and like everyone I have good days and bad with my Symptoms,  This really helps the good days to stay around   thanks.   Had to use the Crooked smiley face haha

[lori67]

A lot of us have to use the crooked smiley face!     You're in good company!

I worried before my surgery that my kids wouldn't be able to know when I'm smiling at them, but trust me, they know.  And your little one will know when she makes you smile too - and to her it will look more like this.... .

Lori

[moe]

Ramble away, it is good to get it out of your brain and on  to the forum.
I too am a crooked smile and actually still having problems accepting this, but I smile on the inside. I bet you will get your smile back, I'm having positive thoughts for you.
Maureen

[joeelmo79]

I have actually come to terms with it,  I will do everything in my power to get back what I used to have,  But if I only get a little or even none That will be ok, I have other ways to show different expressions without moving oneside of my face.  when I try to smile I look goofy,  you all probally already know,  You over do it on the other side trying to compensate for the lack of movement and it looks real goofy, so I just grin in pictures now.  But like I said before It could be worse,  I have no real reason to complain.  In other news I had a follow up with my regular ENT today,  nothing new I just have to follow up with him also after my surgery.  I did get my bill for the Surgeon yesterday, I was really suprised that my part was only $1350 the insurance is going to pay the rest of his fee for the procedure,  and my out of pocket max is $2000,  being that I have had 2 MRI's and 2 CT's since January my max should be met after I pay him,  so actually the rest of the Hosptial bill will be paid at 100% so thats one less thing to worry about. 

[Sonja]

Joe:

I justed wanted to welcome you to the forum and wish you well in your upcoming surgery. Keep positive.

Sonja