Overwhelmed!

[DeeDeeR]

Within a month I have been diagnosed with a 2.8cm acoustic neuroma and now have surgery scheduled for October 24th.  I have lost 75% hearing in my AN ear, headaches, loss of balance, a lot of pressure in my head, etc. My doctors have firmly recommended surgery over radiation.   All family and friends have been extremely supportive... but, they have no idea.... I haven't seen any postings of problems with AN patients tongues, mine feels like I have burned it and today I have had some numbness in the corner of my mouth.  Has anyone else had this?  Thanks

[Jim Scott]

Hi, Dee Dee ~

I'm sorry you have to deal with an acoustic neuroma (and surgery) but we understand what you're dealing with, including the feeling of being overwhelmed.  As AN patients, we've walked in your shoes and so, you are not alone in this. 

Your tongue 'numbness' is somewhat familiar to many AN patients.  I encountered this following my AN surgery.  Just a very small portion of my tongue (on one side) was affected and it did not affect my taste or ability to eat normally.  Seven years later the 'numb spot' remains but I barely notice it anymore and, as I stated, it has no effect on my ability to talk, eat and enjoy food. 

Other AN patients will have different situations involving tongue 'numbness' - and some never encounter this issue.

Jim

[arizonajack]

Within a month I have been diagnosed with a 2.8cm acoustic neuroma and now have surgery scheduled for October 24th.  I have lost 75% hearing in my AN ear, headaches, loss of balance, a lot of pressure in my head, etc. My doctors have firmly recommended surgery over radiation.   All family and friends have been extremely supportive... but, they have no idea....

Welcome to the club that nobody wants to be a member of.

You'll get a lot of support and great information here.

I haven't seen any postings of problems with AN patients tongues, mine feels like I have burned it and today I have had some numbness in the corner of my mouth.  Has anyone else had this?  Thanks

There is a search feature at the top right hand corner of this web page. Insert the word "tongue" or "tongue numb" or "tongue numbness" and click search. You'll probably end up with several discussions about tongue numbness.

[DeeDeeR]

Thanks!  I, as all of the AN family need lots of support.    

[Trippy]

I hope your surgery turns out okay.  Since you have surgery soon you may want to look into how others have coped with the possible after effects.  I know I remember some saying to try to walk as much as you can after recovery to help with your balance.  I don't know much, maybe some others can chime in.  I know there are video journals on youtube that you might find helpful.

[MDemisay]

Dear DeeDeeR,

I hear you!

 I also happen to be an AN survivor, you are on a long road, but I haven't had the same symptoms as you, however I know of someone who has, she just happens to be the group leader for our group in NYC called the NYC chapter of the ANA we meet monthly in NYU Langone Hospital. Her video, which is on Youtube is at https://www.youtube.com/watch? v=AFHPwW7d5BA she did it at the ANA symposium in LA this summer. She posted it online and sent it to the membership of the NYC group.  Hope it is helpful to you. I have told her about you, she is there to help you as well (as we all are), I hope you don't mind.

As I already said, you are on a long oddessy-like journey, I personally wish you well, now that you have discovered this place (the ANA forum) you have discovered a caring group of patients, who have discovered that knowledge is power and the fellowship makes the journey that much easier. Please feel free to come back often and use us as your sounding board. You can PM me if you like.

Please, may all your decisions come easily for you. For now you have a lot of research to do before you make your decision.

Remember, I am a recovering patient and each of us is at a different point in their AN journey, I value the opportunity to Pay-It-Forward that you have given me.

Once you have made it to the other side of treatment, perhaps, you to shall be able to Pay-It-Forward!


Your friend,

Mike

Mike: I removed the e-mail address in this message as our rules do not permit e-mail addresses to be posted on the open forum.  You can send Dee Dee a PM with the group leader's e-mail address, if you wish.  I realize the error was accidential and made with good intentions.  Just enforcing the rules. - Jim

[Echo]

Hi Dee Dee,

Yes I have experienced numbness at the tip of my tongue and on the corner of my mouth.  My numbness is transient and comes and goes.  Could last for a couple of days or longer and can disappear for a few days or weeks.  My AN was diagnosed May 2012 at 1.8cm.  By June of this year it had grown to 2.4cm and the numbness issues started up about 6 months ago.   

I wish you well as you deal with your AN and hopefully your numbness will be transient or disappear entirely rather than stay with you constantly. 

Good luck!
Cathie

[ombrerose4]

Hi DeeDee,

Mike contacted me about your tongue issues. The only symptom I had before I was diagnosed with an AN, was a burning, numbness of the left side of my tongue. After my third visit to the ENT, I was sent for a MRI and was diagnosed with a 2.4cm AN. I am now 4 years post surgery. I have conquered post op headaches and dealing with dry eye and some cognitive issues. My burning, numb tongue continues to be a problem. It is not constant- it can disappear for weeks at a time, then stay around for a week or so. I never wake up with it- it develops throughout the day and by nighttime it is so bad, that all I want to do is go to sleep so it goes away. Ice cream, ices, cold water give temporary relief. The doctors have basically told me they have no idea if it will ever go away completely. It was explained to me as a nerve seeking a connection and misfiring because there is no connection. Kind of like tinnitus of the tongue, lol! Please PM me if you want to talk more:)

[DeeDeeR]

Thanks so much for the information.  I was beginning to think that my symptoms were just "in my mind".  I hate that others are suffering these symptoms but I'm glad I am not loosing my mind.   Having a AN is hard to accept and cope with, God has given me peace.  God has also given me family and friends for support.  Now he has given me people like you to help me in this journey that no one wants to be on...

[mesafinn]

DeeDee,

I will be thinking of you throughout the month.

I fully appreciate when you say that you wonder if you're inside your own head and symptoms are in your mind.  I think you will find here a supportive community who understands and "gets it."  In other words, you are NOT alone.

Keep taking care, and I send an affirming hug for the 24th.

P.