ANA Discussion Forum

Watch and Wait => For those in the 'watch and wait' status => Topic started by: kmoltenbrey on May 21, 2011, 08:33:26 am

Title: A Newbie
Post by: kmoltenbrey on May 21, 2011, 08:33:26 am
Good Morning.

I have never posted in a forum before, and I have been newly diagnosed with an AN in my left ear.

It is only 9.54 mm, but the little bugger annoys me.  I have lost functional hearing in that ear, balance issues, constant ringing, earaches, and twitching eye and lip.  I know symptoms vary from person to person, and I am learning to deal with my new normal.  The balance symptom bothers me the most right now.  My doctor said that my body would adjust, but I forgot to ask how long could that take.  Does anyone have any feed back on that?

I am also glad to have found ANA and this forum.  I have been doing a lot of reading and it is good to know there are so many people willing to talk about their experiences. 

~Kathy
Title: Re: A Newbie
Post by: ppearl214 on May 21, 2011, 08:40:48 am
Hi Kathy and welcome.  Glad you decided to officially test the "forum" waters.... no worries... we're here to help! :)

My AN was the same size as your's when I received my treatment 5 yrs ago.  There is a LOT of info here on the forums and many that will chime in with thoughts/suggestions/inputs/bad jokes/harrassment, etc.  Please take your time in perusing the site for info.... ask away... we're glad your here.

Again, welcome. BTW, I refer to my AN as the "brain booger" :)
Phyl
Title: Re: A Newbie
Post by: Rivergirl on May 21, 2011, 08:41:25 am
Sorry you are here but welcome to the forum.  The forum is so helpful, tons of information and personal experiences.  When I was first diagnosed, I thirsted for information and it helped tremendously with my ability to deal with the symptoms, to watch and wait and to eventually face the upcoming treatment. I have Dr. McKenna at MEEI and he has been excellent. Hope you get the answers and support here that you need, you are not alone.
Title: Re: A Newbie
Post by: Mickey on May 21, 2011, 09:14:35 am
Hi kathty! Probably alot of things going on in your head right now. Please take the time to do your homework on your AN situation. They are all very different and unique. Also with todays modern technology very treatable. On this site along with research + good  doctors many answers will come. Wishing you the best, Mickey
Title: Re: A Newbie
Post by: leapyrtwins on May 21, 2011, 10:10:19 am
Hi, Kathy, welcome to the Forum.

Your balance does adjust.  I had no idea I had compromised balance when I was first diagnosed.  My doc asked did I have balance issues and I said no.  However, his tests proved otherwise  ::)

After my surgery, my balance took a big hit, but in time - a couple of weeks from my recollection - my body adapted. 

My surgery was almost 4 years ago (5/31/07) and I haven't had "big" balance issues for a very long time.  I still get the occasional wobblies when I'm stressed and/or overtired, but it's nothing I can't live with and soon resolves itself.

Jan
Title: Re: A Newbie
Post by: kmoltenbrey on May 21, 2011, 11:34:17 am
Thank you so much for your insights and the warm welcome.  It is good to know that I can come here for help and support and with experience and time, I may be able to help others down the road.

Peace,
Kathy
(I have to wait for my husband to get home to help me upload a picture.  :) )
Title: Re: A Newbie
Post by: Jim Scott on May 21, 2011, 12:42:57 pm
Hi, Kathy ~

Just slipping in here to add my welcome and agree with Jan ('leapyrtwins') that you'll eventually adjust to your balance deficit.  Like Jan, I've adjusted quite well and consider my balance to be approximately 80% of what it was prior to my AN diagnosis/surgery/radiation.  I'm sure you'll have a similar experience.  Ironically, small ANs, like yours, seem to be the most troublesome.  Mine was 4.5 cm on discovery and my symptoms only became noticeable within a few months of the diagnosis.  Go figure. 

We'll look forward to your future posts (and photo).  We consider ourselves 'family' (due to the relative scarcity of AN patients) so you can feel right at home, here.  :)

Jim
Title: Re: A Newbie
Post by: jaylogs on May 21, 2011, 01:04:14 pm
Hi Kathy!! I am sorry this is the place that you had to break in your forum writing skills, but you'll find no better non-judgemental group of folks to help you out!! I've heard that the more balance issues you suffer now, before treatment, the less you'll have to deal with it post-surgery.  I didn't have much in the way of balance issues before my surgery, but then after it was a whole another story.  But then again, each person is different on that.  Good luck as you continue your research and eventually come to a decision on what to do!
Jay
Title: Re: A Newbie
Post by: Kaybo on May 21, 2011, 02:19:16 pm
Hi Kathy & WELCOME!!
There's not a lot more I can say except that even you do continue to have balance problems, you adapt. I would say I do have some balance issues but most are when I am very tired. Any others, I just deal with them as they come along...certainly no falls or anything like that!
Ask away, we are here to help YOU!

K  ;D
Title: Re: A Newbie
Post by: kmoltenbrey on May 27, 2011, 03:12:42 pm
Okay, has anyone experienced a strange numbing sensation on tongue?  :P  (Tingling comes and goes...) This is a tweeky little bugger that we get to deal with. 

Hope all is well with everyone, and thank you foe all your help.

Enjoy your weekend where ever you are.

~Kathy
Title: Re: A Newbie
Post by: Jim Scott on May 27, 2011, 03:26:25 pm
Kathy ~

Unfortunately, 'tongue tingling' is fairly common with ANs.  It is usually caused by the tumor encroaching on the trigeminal nerve.  I developed a 'numb' sensation on a small section of one side of my tongue prior to my AN diagnosis and, although my subsequent surgery and radiation were quite successful, the 'numb' spot remains to this day (5 years later).  Fortunately, it doesn't affect my sense of taste or the tongue's sensation so I can essentially ignore it.

Jim
Title: Re: A Newbie
Post by: Rivergirl on May 27, 2011, 07:32:35 pm
Balance does get better, when I was first loosing it I feel a lot.  I was scared I was going to break something, never went out in the winter without my cramp ons.  My family and I just thought I was a klutz, my doctor never got concerned although I used to complain all the time.  But I will say I am better, I do water aroebics and that is great when you don't have good balance.  Good luck and I hope it gets better soon.
Title: Re: A Newbie
Post by: Kaybo on May 27, 2011, 08:22:48 pm
cramp ons ?????

 ???   ???   ???   ???   ???

K
Title: Re: A Newbie
Post by: Rivergirl on May 28, 2011, 05:49:17 pm
A typo in my previous post, I fell a lot not feel a lot, but i do that too.  Cramp on's are what I call those removal spike things you can put on your boots or shoes so you don't slip on the ice, snow......I would be lost without them. .lol
Title: Re: A Newbie
Post by: Suu on May 28, 2011, 08:50:03 pm
Okay, has anyone experienced a strange numbing sensation on tongue?  :P  (Tingling comes and goes...) This is a tweeky little bugger that we get to deal with. 

Hope all is well with everyone, and thank you foe all your help.

Enjoy your weekend where ever you are.

~Kathy

Hi Kathy.
I'm happy that you're here although not happy about the reason that you found us.....

As you read more about the little culprit in your head you notice that you'll be getting some or all of the symptoms that we talk about.  I hope it makes you comfortable with the knowledge and not scared.  I think you get over the scared part pretty quickly due to the amount of people that you'll be able to relate to.

If you put in something in the seach box at the top of the home page you'll be simply gobsmacked at the amount of posts that will pop up for you to look at.  I just put in the word tongue and got 24 pages!

Hugs,

♥ ´)
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(,.•´ (.♥ •´ *Suu