New to Forum

[KBridges]

I am 36 and was diagnosed with an AN 2 years ago and just discovered this forum. I'm was in the "wait and watch" group but my doctor recently suggested radiation. My primary sympton has been extreme lightheadedness with a few dizzy spells. I've just started getting the ringing in my ear. I guess I have 2 questions that I would like the forum's help with.

First, has anybody else experienced periods of severe anxiety. I will be fine for a few months and then will feel more " loopy" which causes me to be so anxious I can hardly stand it. At that point I worry there is something else wrong with me.

Secondly, I'm a coach and it seems that during baseball season, with the stress and longer hours, my symptoms increase. Is that normal?

I appreciate any help from the forum.

[Lorenzo]

HI, glad you found this forum, lots of great people here!

Anxiety and stress and therefore increased symptoms are something I considered normal! It IS a brain tumour we're dealing with, no wonder we get a little stressed and anxious. No? Three years post treatment, and still happens at times. Being tired for me makes symptoms worse, stress too.

Ciao, Lorenzo

[ppearl214]

Hi and welcome. Well, I would share the same comments as Lorenzo (hi L!!!  ) and yes, in my case, I actually find my tinnitus acts  up during high stress levels (ie: work, grocery shopping in today's economic environment and watching my beloved BoSox in Game 4 against the Rockies in 2007 World Series game....HUGE baseball freak here!).

You will see, by reading along in many posts here, that anxiety and enhanced symptoms can occur for many..... try to take a deep breath, keep in mind that this "thing" is benign, totally treatable and as you can see here, many of us do very well post treatment.... we keep the realities in mind..... but we forge forward and handle it as best as we can for our own situations.  Hang tough and know you have good ears here in the folks on this site.

Again, welcome!
Phyl

[Jim Scott]

Hi, KB:

Let me extend yet another welcome to the forum and hasten to add my assurances that anxiety is quite normal when you have an acoustic neuroma residing inside your skull. This is why, on an emotional level, the 'watch-and-wait' approach can be almost as difficult as actual treatment. Your perception of symptoms increasing during times of stress and less sleep, is also normal.  Sleep deprivation and stress, in general (no matter what the cause) is always detrimental to your well-being and with the fact of having an AN tumor, the effects are magnified. 

Radiation may be the best way to go if your AN is small but you'll need to explore all the options before making a final decision.  Although radiation has it's own risks, it's non-invasive and many AN patients who have undergone radiation treatment have done just fine.  I'm sure a few may add to this thread to state their opionons. 

Thanks for your post.  Please stay connected. 

Jim

[KBridges]

Did radiation alleviate the dizziness? One doctor I've seen said he wasn't sure if it would change my symptoms.

[ppearl214]

Hi K,

Great question. Since the AN typically sits on the vestibular/balance nerve, dizziness tends to occur. I know many here that have had vestibular therapy/exercises to help alleviate vertigo/dizziness (myself included).  there are exercises you can do to help offset the dizziness... low dose valium (2mg, 1x/2x day) is sometimes also prescribed to help the cause.

In my case, I didn't find CK radiosurgery alleviated my dizziness..... but exercised my neuro-oncologist gave me certainly helped (I did a short term course of the valium, also, for 1 month just post-CK and that helped as well.....)



Phyl

[fbarbera]

Definitely tend to have increased symptoms in periods of stress and sleep deprivation.  But I'm only six months post CK - not sure what things will look like with more time.  Please contact me if you want to talk about my experience with radiation.  How big is your AN?  How is your AN-side hearing?

[KBridges]

My AN is about 9mm, my hearing in right ear has diminished some, but I mostly have ringing now.

[sgerrard]

I think that typically radiation doesn't change dizziness one way or the other - it mostly seems to leave the balance nerve alone. That can be a problem if you have severe vertigo, where surgical removal of the balance nerve may be a better option. In most other cases, exercises can help the brain adapt to the changes.

Stress is a huge trigger for symptoms. Caffeine and other stimulants can also be. Eat well, drink lots of water, get exercise, sleep well - be a goody two shoes, in other words. Wish I was better at following that advice...   

Steve

[mema]

Phyl and Steve,


What kind of exercises did the neur have you do.  My neuro-oncyologist has me doing neck exercises, but has never mentioned they were vertigo exercises.  I thought they were to help my nerve spasms in my head.  Each doc I've dealt says some people never get rid of the vertigo.  If there is an exercise that helps it I loved to know so I can try it.


mema

[leapyrtwins]

Stress is a huge trigger for symptoms. Caffeine and other stimulants can also be. Eat well, drink lots of water, get exercise, sleep well - be a goody two shoes, in other words.

Steve

I agree with Steve.  I found that stress and fatigue were huge triggers.  I didn't see it as much with caffeine; or maybe I just wasn't paying attention.

Even today, 9 months post op, I find I am having slight "issues" when I'm stressed and/or fatigued.  Which come to think of it, is a lot of the time lately.  Guess I'll have to start following that "goody two shoes" advice myself.

Jan

[Melissa778]

WElcome,  I'm fairly new to this forum as well.  And I find the longer hours I work and the more fatigued I am the more the dizzies, as I call them, kick in.  I find that on the weekends when I am bit more relaxed and able to nap occasionally I have less "dizzies".  I've cut back my work hours a bit and I try to get as much rest I can, with two children under the age of 5 it's a bit rough.  For awhile I was working two jobs, my secondary job being a bartender where I was on my feet for hours at a time......That's when I was diagnosed because I got so dizzy all the time.  Needless to say, I have had to quit that job.  The more I'm on my feet the mroe dizzy I am.  Best of luck to you.

[ppearl214]

Phyl and Steve,


What kind of exercises did the neur have you do.  My neuro-oncyologist has me doing neck exercises, but has never mentioned they were vertigo exercises.  I thought they were to help my nerve spasms in my head.  Each doc I've dealt says some people never get rid of the vertigo.  If there is an exercise that helps it I loved to know so I can try it.


mema

mema, try this one.... has worked for me... provided to me by my neuro-oncologist.

Phyl

1. sit on edge of bed with feet firmly planted on the floor.
2.  Lean down to your right side until your whole side of body and head touches the bed.... lay there for approx 10 secs. You may experience spinning, but lay like that until spinning stops.
3.  Go back up to sitting position as in #1.
4.  Next, lean down to the left side until your whole side of body and  head touches the bed. Again, you may experience spinning for a few secs, but lay there like that until the spinning stops (approx 10 seconds).
5.  Repeat steps 1-4 for a few times... by the time you get to the 3rd or 4th time, you will notice the spinning has calmed down.

[mema]

Thanks Phyl,  I'll give it a try.


mema