arhhhhh, its just an ear thing!!!!

[Jackie]

Well said Cheryl!!! I like the cranial nerve approach, as it does target the area so well!
Glad that we all have each other for comfort and support! You all have really given me courage, and a positive attitude is helpful, but most of all Faith in
God!!! "I can do all things through Christ who strenthens me".

Jackie

[Lou]

Your words of support and wisdom have helped me more than you could imagine, well actually you do know! That is why I am so thankful to you all . The thing that makes me laugh is that we just get on with things most days, so when people do make uninformed comments, it really knocks you sideways. Thank you again. I think there is another common thread with AN s, compassion
Lou

[Ned]

Compassion, the most important lesson this journey has taught.

[james e]

Lou, are you NF2?

[Suu]

... ... ...  so when people do make uninformed comments, it really knocks you sideways. Thank you again. I think there is another common thread with AN s, compassion
Lou

Well said, Lou. xxoo

PJB - You do write exactly like me 

[Lou]

Hi James, this is going to sound really thick, but in answer to your question 'I don't know' I can tell you I have 2 facial nerve neuroma's - no one has ever said anything about NF2. I have never actually seen that term until I found you all. So as far as I can guess............not usually a good thing.......would be a very tentative yes...........

[Lou]

Thanks Suu
I have to say, I quite often read your feedback comments, as you are so insightful.
as a side note. Crazy as it is, I have actually stopped using facebook and now only log on to this website if I feel the need to vent.. At least you have supportive -helpful feedback.
Love you alllllllllllllllllllllllllll
Lou

[pjb]

... ... ...  so when people do make uninformed comments, it really knocks you sideways. Thank you again. I think there is another common thread with AN s, compassion
Lou

Well said, Lou. xxoo

PJB - You do write exactly like me 

Thank you but far from writing like you and you should see what I write before I proofread it 3 times...haha....

Best Wishes,

[james e]

NF2 is having 2 ANs. Cheryl R is NF2 and she knows this topic and I hope she will post here again to discuss this with you. It is very rare. If you were my sister, I would advise you  to discuss this with your doctor and get a definite diagnosis. Your post says you have 2 facial neuromas, and they are different than ANs, but I believe the symptoms are very similar, but I don't know if having 2 facial neuromas is NF2. It is very important for you to know what type of tumors you have...talk to the doctor. Cheryl R had a facial neuroma, and she is a real pro. ANs are rare, but NF2 is super rare.

James

[Lou]

Thanks James, yes I have two facial nerve neuromas, reason I came to you lovely people is that they I guess are rare as well and have no support group. Even if they did, I would stay here.. I am due for a check up soon and will ask. Thanks for your guidance I will seek out the info and let you know
Lou.

[Chances3]

Hi Lou,

I think you hit a nerve with your post - no pun intended, you're getting a lot of replies.  I know I have posted this before, but we share here.  I had brain surgery at the end of 2010 to remove my AN.  My two very best friends who I had a relationship with for 20 years didn't even bother to see how I was doing, and oh I was really sick for quite a few months.  I was devastated by their callous behavior and I rarely socialize with them today.  You will find, that people either do not understand or cannot perceive what AN suffers go through. 

Having said that, I have had the unfortunate experience of knowing two people who died from brain cancer, and a very close business associate has a 15 year old daughter who is dying from brain cancer right now.  These people put on an incredible valiant effort to live, with surgery and chemo.  It put things in perspective for us all.

Hang in there, you will get thicker skin as time goes on.  I hope and pray that your family member is fine.

God Bless.

[Lou]

Hi Chance, yes I think you may be right..
however thank you for sharing your story. It does put things in perspective.
Many thanks
Lou

[Cheryl R]

Lou, having the facial neuroma on both sides means in my opinion that you have NF2.     There was a teenager on here some time ago who had NF2 and I know he found a place in the Uk which specializes in it.  I of course can not remember his name or the dr.      Maybe if you googled it might be able to find out where.   The treatment for whatever kind of neuroma is done so that hearing preservation is kept on at least one side.        Plus trying to preserve the facial nerve is important too.    The tumor location can play a role in also on whichever nerve the tumor is located.                   Normally I would hqaver more time top check this out but we are leaving on a weeks vacation tomorrow and I have more to do today than usual.                     You should have some time to look into this but treatment when they are smaller might be better in the long run.                 This is something to keep on your dr about.         You might be ok to wait and watch on one but maybe treatment on the other might be better sooner than later.                   I wishh you well.                      Cheryl R         
       

[Lou]

Thanks Cheryl, hope you have a great vacation. Talk to you when you get back.
Louxx

[james e]

Lou, while we wait for Cheryl's return, I suggest you read the NF2 forum and learn what it is all about. It is far more than "an ear thing." You might not be NF2, but I would sure want to talk to my doctor about it.

James