Questions about AN symptoms

[sher]

Hi Everyone,
I am still working on adjusting to the diagnosis of AN. I am wondering if any of you before treatment had neck stiffness, teeth pain and some head rushing and also fatique? Thanks for all those that have replied to my posts... you are AWESOME!!!!!
Sherry

[Nicole222]

Let's see.  I had fatigue, dizziness, facial numbness, hearing loss.  I also had the sensation of mouthwash in the left corner of my mouth and left side of my tongue.  Oh, and I also had headaches.

[nancyann]

Hi Sherry:  My only symptoms were constant tinnitus (for years), decreased hearing on my right side,  &  eye twitching right side, which I attributed to being tired,  I didn't realize it was a facial nerve connection....

[leapyrtwins]

I had fullness and diminished hearing in my AN ear.

I also had balance issues that I didn't realize I had until my neurotologist made me do the balance tests - standing on one foot with my eyes closed, walking heel to toe down a long hallway, etc.

Post op I had sensitive teeth - strangely enough on my right side; my AN was on the left.

Jan

[Kaybo]

Jan~
I had the sensitive teeth thing on the RIGHT side which was TOTALLY paralyzed so I guess it was PHANTOM pain or something!!

K

[cindyj]

Hi Sherry,

Haven't had treatment yet - still trying to figure out what to do...but, I have tooth pain on my AN side and my dentist has found nothing wrong.  One of the surgeons I saw said he didn't believe it should have anything to do w/ the AN, but???  You know, I am fatigued, but really have just always thought it was "life" not anything specific.  But, I suppose it could be AN related...stress, our bodies fighting something something that shouldn't be there...

Know you'll find this site as helpful as I have in your AN "journey."  There is so much knowledge and experience to be found here, not to mention the support everyone gives.  So, ask away,

Cindy

[Joef]

Haven't had treatment yet - still trying to figure out what to do...but, I have tooth pain on my AN side and my dentist has found nothing wrong.  One of the surgeons I saw said he didn't believe it should have anything to do w/ the AN, but??? 

That was me ... went to the dentist  * several * times complaining about a tooth ache ... and he told me he saw nothing wrong.
He told me to see a Neurologist .... and said Acoustic Neuroma .. yep .. it was my dentist see it first .. I went to my GP .. and he sent me for a MRI ... "and now you know the rest of the story... "

I tried to say thanks to my old dentist .. and he has since retired ! .. I have not seen him since .. 

[Jim Scott]

Hi, Sherry:

I experienced SSD (over several years), severe fatigue, acute disequilibrium, rapid-onset loss of taste with subsequent loss of appetite (and loss of 35 pounds) as well as intermittent, very short duration 'stabbing' pain (not a headache) at the AN site, all just prior to my AN diagnosis.  No neck pain, tooth problems or 'head rushing'. 

The operative phrase with an Acoustic Neuroma is that, like snowflakes, everyone is different.  They grow in varying directions and so, each AN patient will have slightly different but similar symptoms.  Some AN patients never lose much hearing, some don't have any facial effects and some have all of these and more.  Your symptoms are not unusual, Sherry, but they are also not exactly the same as every other AN patient, as the responses on this thread demonstrate.  The MRI is the real proof of the AN being the cause of your symptoms, even if they don't exactly duplicate other's symptoms.

I also believe that once we have been diagnosed with an Acoustic Neuroma, we sometimes then focus on anything that ails us as being a 'symptom' of the AN, when it may not be.  This doesn't mean we can dismiss any symptoms, but we just have to be cognizant of the tendency to 'blame' the AN for every possible discomfort.  It may be the culprit...but it may not.  Just be aware of that reality and do what you have to do to find relief for any symptoms, as well as staying connected with your doctor and, of course, the folks here who also want to help you in any way possible, even as just a sounding board. 

Jim

[yardtick]

Cindy,

I hate to tell you your surgeon doesn't know squat about AN symptoms

Teeth pain is very common especially if the facial nerve is involved.  Thank goodness for this forum because we are all a wealth of info and are here to share.
I've been where you are with a surgeon who really had no idea of what I was going through and he got me mixed up with another patient.  I'm no longer seeing him.

Just to let you know fatigue is a major issue that we have all battled and some of us, myself included and still battling.  You are right about "our bodies fighting something that shouldn't be there..."

I really wish you best along this journey you have just begun.  I not really a grouch......just tired!!!

Anne Marie

[er]

hello sher,

I think Jim is right, we are all different and then we stay in tune to everything that makes us feel ill.
I started with pain behind my ear but only when I laid on the side of the AN, seizure like systems, loss of memory for that short time, fatigue, I fell allot, later fullness in my left ear and tingling on my left side of my face and the ringing in my ear. Oh, and no one could tell that anything was wrong with me.
I did get teeth pain but after my surgery the whole top left row for about 3 weeks and dentist said nothing was wrong. It could be because of the nerves regenerating.
I hope that helps some.
eve

[sher]

Thank you so much for responding to my complaining.
Sherry

[leapyrtwins]

Thank you so much for responding to my complaining.

Sherry -

you aren't complaining.  You are seeking answers to a medical problem and it's perfectly acceptable to do so.  In fact, IMO you wouldn't be "normal" if you didn't ask us these questions   It's one of the things we are here for.

Don't ever hesitate to post a topic, ask a question, give an opinion, or just vent - we've all done it 

Think of us are your AN Family.  We are all here for you and we all know what you are going through.

Jan

[wendysig]

Hi Sher-

I absolutely agree 100% with Jan.  Being diagnosed wth an AN is a very big deal and you have every right to ask any and all questions, vent, cry, complain and anything else you need to do here!  We are all or have been in the same boat pretty much whether we are new here or have been here for a while.  I have been here a little longer than you, (since April 10), but have not had my surgery yet.  I can tell you this though.  The people on this forum are happy to be there for one another.  They have already been a great help ot me, and I have tried to return the favor to those I can, to the best of my ability.  As Jan says, you can consider us your AN family.  I know I already do.  The symptoms I have had so far are fullness in my AN ear and sometimes intense pressure, tinnitus, feeling off-balance, occasional stiff neck (I think this might just be tension though), occasional pain behind my AN ear,  numbness in my AN ear and same side cheek, and hearing loss.  None of these are fun, but all are part of the package.  Hang in there and ask anything you need to.

Wendy

[cherrypiper]

pre surgery: a loss of balance especially at nite . i listed to the good side.

My hearing was already gone. headaches seem more frequent now but i've only had 1 or 2 really bad ones.

all in all my post surgery stuff has been more detailed. BUT when it comes to having a tumor in the head, minor stuff.

hope that helps some ....

[sher]

Thanks everyone for you concern... I have started having these weird headaches with a rushing, tingling feeling on my scalp. I am thinking that it could be from my neck because when I press on the neck muscles that feeling goes temporarily and also sometimes if I press on my scalp. Weird.
I know that Patti  is from Utah.. are there any other people on this forum who are from Utah? I am still researching treatments here.
Thanks everyone!!!! SO MUCH!!!!
Hope you all had a great holiday,
Sherry