This just keeps getting better

[andrea in slc]

Wow, really, this is a lot to wrap your head around! (Please excuse the bad pun).

After finding out I have an AN, and that the radiologist MISSED IT ON THE MRI 18 months ago, I've been researching and learning as much as I can. Thanks to this great place, I have TONS of info and knowledge!

I sent off my MRI and hearing tests to House (again learned through you guys) and heard back from them this week. They think it is an AN, but there is a chance that it is a facial nerve neuroma, due to my facial weakness/temporary paralysis last year that only lasted two weeks. Um, okay, not great news on that, but moving forward...

Wednesday I had an appointment with a neurotologist at the University of Utah, who also said it looks like an AN, BUT there is a chance that it could be a facial nerve neuroma. CRAP. That means my facial nerve would be gone, and they would have to do a nerve graft. CRAP CRAP CRAP.

I have an appointment with the neurologist on the 15th of this month, and we will try to schedule surgery at that time. Unfortunately, they won't know for sure if it is a facial nerve neuroma or an acoustic neuroma until they are in there. So I won't know until I wake up after surgery what the outcome is.

Sorry, just a bit of a pity party going today. I'm trying to not let this bother me too much, but dang. My husband and I are now jokijng that we wouldn't have believed we would be praying for an acoustic neuroma, LOL!

I know I can come here and vent. I'm trying to be "strong" and not show how incredibly scared I am of this whole thing. To be perfectly honest, I am so close to a freakout meltdown, I'm just taking it one day at a time. Thanks so much for listening to my pity party.

[Kaybo]

Andrea~
You have every right to be freaking out - rant all you want - we're good at listening (all be it with just one ear!!).  I would not wish a paralyzed face on anyone, but that is what I've got (& had for over 12 years) and I have to make the most of it.  I know you will too, but again, it is OK to "mourn" it for a while.  However, let's think positive and hope for the best!  PM me if you want to talk - I have unlimited long distance so I can call you!

K   

[Sue]

Andrea, I agree with you. CRAP! 

I hope and pray it's an AN.  Now, that's something I thought I'd never say.

Crossing fingers for you, my dear.

Sue in Vancouver, USA

[yardtick]

Andrea,

I have a facial neuroma.  I was lucky, I think because my tumour was 'debulked".  I still have at least 1cm left on the nerve plus little dots long the length of the tumour.  At the moment I am watch & wait for the nerve graft. I live in Ontario Canada and I have seen a few different Drs.  The one I am seeing now is the best in Canada, according to the ENT dept at the hospital my husband works.  The Dr feels that I should wait because I will never look as good as I do now.  He also said I could go for many years without any major growth.

I decided to take his advice.  I see him regularly, because I do suffer from major headaches, facial pain and numbness.  I am on some cheap drugs (I have excellent benefits) to help cope with the problems.  This Dr also removed the scar neuroma I developed from the first surgery.

Please find out the size of the neuroma.  You maybe a candidate for radiation.  I wasn't or else I'm sure I would have opted for the treatment.

Hang in there,
Anne Marie

[sher]

Hi Andrea,
I am sorry to hear of it being on the facial nerve. Not sure if CK can be done on that. You might just want to check. You can go to http://www.cyberknifesupport.org/forum/default.aspx  there are Dr.s there that can answer your questions. Hang in there. Maybe we can get together soon.
Sherry

[Jim Scott]

Andrea:

No one could blame you for being upset over these latest developments.  'Crap' would probably be the mildest epithet I might use to describe my feelings, were I in your situation.  It really is beyond ironic that you're reduced to hoping and praying for an acoustic neuroma (instead of a facial nerve neuroma) but here we are. 

Scared? Who wouldn't be?  Just know that you'll get through this and we'll all be here to support you, whatever happens.  Meanwhile, paradoxically, I'll be praying for the tumor to be an AN and not a facial neuroma.

To better days. 

Jim

[Cheryl R]

Hello Andrea,    I have NF2 and one of my tumors has been a facial neuroma.    I go to the Univ of Iowa for treatment.       I was warned ahead that if my neurotologist could not keep the nerve intact with tumor removal then he would sever the nerve and take some nerve from below my ear and graft in.           This was done in 2006.
  My surgery was a translab approach and so the incision was just a little longer as it did have to be done.        My recovery from surgery was like a regular translab surgery.     I was told it would take over 8 months for improvement of the facial paralysis and that was about right.     I had improvement so that don't have full movement of the face but it looks normal at rest and there is some movement.        You can see my pic of what i do look like.
I could have had a weight put in the eye but did not and did well with gels and got complete eye closure in time.     I don't have to use much in the day now but do put lacrilube in at night but do not to tape it anything else.                     It was numb around my ear but that has improved some also.
Good luck with your situitation.     Not a fun one to hear.      Feel free if you have any questions.
                                            Cheryl R

[MAlegant]

Hi Andrea,
I would have gone for stronger language than crap but you must have more restraint than I do.  Facial paralysis seems to be everyone's biggest fear and for good reason.  So many folks have dealt with it and carried on with their lives that I'm certain that it is possible.  Take it one day and one step at a time, have pity parties whenever necessary, but as my son reminded me before my surgery, if you have to choose between living a life "facially challenged" and not living a life, there really is no choice.  You are stronger than you think you are and whatever the outcome, you will handle it.  Wishing you only the best.
Marci

[cherrypiper]

well , the GOOD news is that if the face hasnt been a continuous problem, maybe its not a FN. Also , the AN removal of mine was so close that they told me right up front that my facial nerve might be affected.

and it was a bit. iys been 10 months today. The paralysis i had on the AN side is real small. a few problems with my AN side eye, but every thing is healthy .

SO if its either  neuroma, a good surgeon should be able to remove it.

vent all you want. i wish i had found this site B4 my surgery. They are a great help..........

Best wishes for you 

[andrea in slc]

Thank you all so much, you have no idea how much you all help me. Well, maybe you do, LOL.

Thank you for the words of encouragement and the information you all so willingly share. I am SO glad I have this place to come to, to vent, etc.

I'm over my pity party, sorry, I just really had to vent and get it off my chest. The hardest part is waiting and not knowing. I'm okay with losing my hearing, it's pretty much gone anyway. And I know I'll deal with whatever happens post surgery, it's just NOT KNOWING. I like to plan things, and this definately was NOT in the plans! 

I have told my brother's in-laws about this place, hopefully they will log on and get some great information. If not, I'll be sure to tell them about things like shower caps, goggles (good thing my two older ones were on the swim team in high school!) and sunglasses!

Thanks again to all of you! Group hug! 

[wendysig]

Andrea
Sorry I'm coming to this thread late.  I'm keeping my fingers crossed for you that it is an AN.  Don't feel guilty about having a pity party now and then if you need to, you certainly have a right.  We are here to listen to you when you need to  rant and vent and we all offer our collective shoulders.  I have to agree with the majority -- using "Crap" to describe you feelings shows a mountain of restraint.  Remember, you are stronger than you think and whatever this turns out to be, you will get through it.

Wishing you only good things,
Wendy

[robynabc]

Hi Sweetie,

So sorry you have to be here.  You will get alot of support and the best info ever here.  We all need a little pity party but I also know when things are uncertain you don't want to fall apart too much because you want to stay strong, but you will.  Eric was having a really, really hard time about a month ago with his coughing plus a cold.  He was really upset, more than we had been since surgery.  It scared me a little because we try to stay so strong. Yes,  I know I say we, but really,  I am that sort of person with my kids.  I feel like I am going through it too.  Some would say I am too involved but oh well that is a choice I make.  Anyway,  he got better and now is fine but that little falling apart thing is not something I am used to and you may feel that way at times with this but I promise you,  everything is going to be okay.  And I really mean this,  no matter what happens.  You are going to be okay.

Sending Sunshine and hugs.

Robyn

[lori67]

Andrea -

I guess it would be too optimistic of me to wish the radiologist just spilled some coffee on your MRI and you have no neuromas of any sort?    Probably, but hey, I can try.

Go right ahead and vent anytime.  We all think this is CRAP too!  What is funny though, is that we are all self-proclaimed impatient control freaks.  Or at least many of us.  I guess this is the only way to get us to learn how to be patient and chill out a little.  There's gotta be a better way!  

Put your trust in your doctors - at least they know they'll have to contend with that darn facial nerve on some level and I'm sure they'll be prepared for the possibilities once they're in there.

All of us "facially challenged" (I love that!) folks will be saying extra prayers for you!!

Lori

[Dog Lover]

Andrea,

Vent all you want. You need to vent and release some of the stress. it's a very difficult and scary time. Being only 6 weeks post-op I can recall the absolute horror when i was told I had an AN. I had just got the diagnosis and after retuning to work I got chewed out by my boss for going to too many doctor appointments, even though I had not missed any time and had all of my work done and used my lunch breaks for my appointments. I broke down and started crying for a few seconds. Didn't phase the boss at all.

If it wasn't for this forum I don't know what I would have done. And Cheryl (who posted above) was and is my own personal angel. I also had my surgery done at University of Iowa Hospitals and her help and support as well as the folks in this group has been invaluable.

Sorry to say..... Welcome. 

Cathy

[leapyrtwins]

Andrea -

let me join the chorus and add my voice to those saying CRAP on your behalf.

As Lori pointed out, it's ironic, but lots of us here are "self-proclaimed impatient control freaks" - myself included.  I'm beginning to think that it's what causes ANs, since there seems to be no other concrete theory 

Anyway, my best advice is don't stress over things you have no control over.

Let the doctors do their job and go from there.  Lots of CRAP we worry about never even happens - and if it does, you'll find a way to get through it.

We're all here to help you.

Adding you to my prayers,

Jan