A few questions

[fuller]

I have just been told that I have a acoustic neuroma and I have a few question for anyone who can help.  I seem to have a hard time sleeping, partly because of the dizziness and partly because of the ringing in both ears.  Is this normal.  The problem is; the less sleep I get the more dizzy spells I have.  However I seem to be tired all the time, even after 10-12 hours of sleep, I still wake up completely exhaused.  I seem to have an occasional area around my right eye that feels twitchy.  Also I seem to have what I describe as an occasional tickle that runs across my face and up to my forehead.  It feels like something is running accross my face, but of coarse there is nothing there.  Its very irritating.  Also extreme headaches that pretty much keep me from doing anything but holding my head and taking medicine, and sleeping it off.   So I quess I'm wondering if these symptoms are normal or if I have another undiscovered issue (MS has been suggested) One doctor says neuroma is too small (4 mm) to cause all these problems, but my surgeon says it is possible.  I am 33 years old never been sick, I'm very healthy (except for this issue) and in good shape, but this thing has really been causing me problems.

[Glenda]

Hi fuller!
So sorry you've had to join this "club" but Welcome!  I too am newly diagnosed, about 6 weeks ago.  My AN is just slightly larger than yours and I am experiencing some of the same symptoms as you.  I do have a hard time sleeping, am currently taking ambian in small doses.  I was however already taking this due to I am experiencing menopause at this time also, joy joy   I do notice my dizziness is much worse if I do not get proper sleep.  My tinnitus also tends to be worse with fatique and less sleep.  I do feel tired alot, no energy.  I also have dryness and weakness in the right eye (AN side).  I have dry eyes anyway but the right is worse.  I also have headaches.  I know stress is adding to these but I do feel they are partially due to the AN because they are mainly on the right side.  I do not have problems with twitches or tickles across my face.  Symptoms can vary from person to person as you will see as you read on this forum.  I'm sure others will chime in with their experiences.  Please know that you are not alone!  This forum has helped me so much in dealing with this new chapter in my life as I am sure it will help you.  I am at the moment watching and waiting (not sure for how long).  Good Luck to you in your search for treatment.  I wish you all the best!
Glenda

[satman]

Hi Fuller,that all sounds quite familiar. one thing my surgeon told me is that MS will show up on an MRI as a bunch of white dots/splotches.
there are some people on here that are much more up-to date on MS than I,I am post-op and have the tickle on the face but I am thinking it's nerve related.
You might want to get a second opinion,but a lot of your symptoms do sound AN related.

[Omaschwannoma]

Sorry to hear of your diagnosis.  I am 3 years post surgery for 1.5 AN, deaf in my left ear and doing well.  Before diagnosis I too had experienced the very same symptoms, tinnitus, headache, unsteadiness, extreme exhaustion even if I had a couple good nights sleep, facial symptoms same as yours that progressed to achy feeling when I smiled then drooling, fullness in my left ear with hearing loss.  It was an ENT (2nd one) that finally ordered tests that showed my AN.  I agree with your surgeon (sounds like he's educated in AN's), even 4mm tumor can cause these symptoms.  I've said it before, "Size doesn't matter."

When this tumor is growing it can cause symptoms of vertigo (feeling of being pushed in one direction, like being on a tiltawhirl ride), different from dizziness (room spins) and the eyes are constantly working to keep you centered.  This is one cause of exhaustion--stimulation overload.  Headaches are a symptom of brain tumor (AN's don't grow from the brain, but nerves that connect to the brain stem).  Depending on where your tumor sits on the nerve your symptoms will vary, even if you have a relatively small tumor.  Some people's only complaint is fullness in the ear and their tumor can be medium to large.  Lack of sleep does enhance symptoms that is why it is good idea to get as many good nights sleep as you can.  I use 5 mgs of melatonin and this works for me, others must use something stronger such as Ambien.  

Each of us have similar symptoms, each of us choose different treatments (there is no right decision), and each of us go down the very same road you are now on, learning all there is (not much known--yet) regarding your tumor and treatment.  Education is "key", bringing tape recorder to any and all doctors appointments is very helpful as one tends to forget due to the stress of knowing you have a brain tumor, reading any and all information provided by the ANA is very helpful, dealing with doctors specifically trained (hundreds if not thousands of procedures under belt) on AN's, and finally knowing you are not alone as we are here for you and any questions you may have now and in the future!

[Pembo]

Your symptoms all sound familiar to me. I'm almost 4 yrs post op but my first symptom was a strange sensation in my cheek. (I had a dr suggest MS as well.) I was dizzy alot and always tired. My tumor was on the brainstem and that was the cause of my fatigue according to my doctor. I've since learned that you are tired because the brain is working hard to try and compensate for the dizziness. I had a very large AN, 4 cm but no symptoms until right before they found it.

I've often read of people with little tumors, like yours, who have had lots of symptoms. Take care of yourself...and no, you are not alone.

btw-I was 34 when I had surgery.

[Glenda]

Hi fuller,

I forgot to mention that I use an air cleaner at night when I sleep.  I find that the noise it creates helps with the tinnitus.  Some use noise machines, fans etc.  Just a thought!

Take Care
Glenda

[4cm in Pacific Northwest]

Welcome Fuller,

Sorry for the reason you had to join our wonderfully supportive forum but I am sure glad you are reaching out to us. There is a great group of people here -that can help you through this acoustic neuroma journey … and their light heartiness can get you through some rough seas… ebbs and flows etc.

You are not the first to bring up the “sleep issue� and probably not the last….

Lack of sleep can cause all sorts of other issues. There is nothing like sleep deprivation to make us cranky, overwhelmed and some times emotional. (Just think of a toddler in t he afternoon who missed nap time- oy ya ya. ) People often underestimate how important sleep really is. There is a chance you are not getting “quality� sleep in the night. (It is not always about quantity but more quality.) Often I wonder if the tinnitus subconsciously keeps us AN patients awake at night.

I suggest that you see your PCP and ask for a very small prescription of Ambien CR
http://www.ambiencr.com/Trouble_sleeping/sleeping-tips.aspx

beware of side effects
http://www.rxlist.com/cgi/generic/ambien_cr_ad.htm

 (i.e. not enough pills to become habit forming).

 See if there is an improvement in how you feel after a night’s sleep of taking one of these. (These will take you to the deeper REM sleep)
http://en.wikipedia.org/wiki/Rapid_eye_movement_sleep

It may be worth while seeing if you can be referred for a sleep study at a sleep clinic.

I have brought the sleep issue up on this forum – as have others
http://anausa.org/forum/index.php?topic=5359.0
http://anausa.org/forum/index.php?topic=5763.0
http://anausa.org/forum/index.php?topic=3148.0
http://anausa.org/forum/index.php?topic=5611.0

… So yes- sleep issues seem to part of the AN journey for some of us.

I am one to talk here – but try NOT to get into the vicious caffeine cycle if you can (i.e. you need a coffee but the coffee later keeps you wired past bedtime- or finally kicks in a 1 am…)

Here is a readers-digest-condensed-type link that brushes on all the issues related to sleep.

http://en.wikipedia.org/wiki/Sleep

And a medical source link
http://www.ninds.nih.gov/disorders/brain_basics/understanding_sleep.htm


Next weekend is daylight savings – and it is not uncommon for people to experience weird sleep patterns during these time clock changes. I think the Hawaiians are onto something by keeping the same time all year round…

Spring ahead … and Keep Moving Forward.

4

P.S. Since my tumor was removed there has been a noted improvement in my sleep disorder (My tumor was pressing on the brain stem as it was 4cm) Nevertheless I still often wake up between 3 – 4 am ( vs. PRE-surgery of every 2-3 hours.) However unlike before- I am able to get back to sleep now. Here is a fun lightheartedly written book I recommend as your wind-down-bedtime-story.

http://www.amazon.com/Sleep-Thieves-Stanley-Coren/dp/0684831848
http://www.stanleycoren.com/e_thieves.htm

[Jim Scott]

Hi, Fuller:

Welcome to what I believe you'll find to be an informative and supportive website/forum.

As most of the prior posts have indicated, your symptoms are all fairly common with an acoustic neuroma.  However, I never experienced sleeplessness but instead, extreme fatigue, probably due to the fact that I had a large AN pressing on my brainstem 

Your MRI scan should indicate the presence of MS but only a trained physician can verify that.  The diagnosis shouldn't be ambiguous.  By the way, your surgeon is correct: even a relatively tiny AN can cause these symptoms.  The location of the AN is critical. 

I hope that the AN can soon be eliminated and you'll improve before long.  Please stay in touch with us. 

Jim