List your unusual symptoms, please.

[Victoriah1999]

List your unusual symptoms, please!  It was brought up in aniother thread and I think it might be helpful if we had a list of a group of us experiencing the same thing.  I know many docs don't agree with the symptoms we claim to have.  (SO frustrating!)

Just cut and past the list and add yours, and if you have the same one as me, add a +1 or something.   
Perhaps do four "I's" and then the last person do a strike ( S ) from the message icon area above?
PLEASE feel free to add ones not listed. 

Metallic taste in mouth
Insomnia
AN Fatigue
Pressure behind eye on OP side
Pressure anywhere else on OP side
Tight or spastic muscles in head and neck
Phonophobia  (Fear of noisy places)
Photophobia  (Fear of light)
Barometric Migraine or Headache
Migraine increase either in level of pain or frequency of attacks
Low or High Blood Pressure  (Please specify which)
Blood pressure affecting headaches
Allergies to certain meds:
     Corgard
     Imipramine
Mood changes, depression, or Mania
Lack of ability to concentrate
Loss of intelligence  (May be neglible, not noticable to others)


OK, that it for now, I'll add others if I think of any.   

[tony]

OK - not so easy to be that different ...so...
Complete loss of taste (12mths)
partical vision loss
car alarm going off inside the head
and nearly run over by a steam train (that wasnt there...)
(the steam train caused me to fall over
- but it was just inside my head )
and finally ..a universal mis-trust of NHS doctors ?
Best Regards
Tony

[goinbatty]

Clicking noise that I refer to as ET calling home. 
What feels and sounds the eardrum fluttering with outward pressure. 
Decreased concentration. 

[leapyrtwins]

None of these are truly "unusual", but here goes -

Occasional metallic taste in mouth
Taste buds are sometimes "off" - things just don't taste the same
Dry mouth - usually if I talk too much
Mixing up words - if I'm tired, stressed, or talking too fast (sometimes my mouth doesn't say what my brain is thinking) LOL

[er]

Metallic taste in mouth -- it's not as bad as it use to be++
Insomnia..... yes ++
AN Fatigue .... always ++
Pressure behind eye on OP side --no
Pressure anywhere else on OP side -- + some times
Tight or spastic muscles in head and neck --- yes++
Phonophobia  (Fear of noisy places) -- yes++
Photophobia  (Fear of light) --- yes not as bad as it was ++
Barometric Migraine or Headache --no
Migraine increase either in level of pain or frequency of attacks  --no
Low or High Blood Pressure  (Please specify which) -- yes ++
Blood pressure affecting headaches -- ++  head feels funny when it happens hot and it swelling feeling
Allergies to certain meds: --no
     Corgard
     Imipramine
Mood changes, depression, or Mania -- yes ++
Lack of ability to concentrate-- yes ++
Loss of intelligence  (May be neglible, not noticable to others) -- Yes!! ++  but very noticable to everyone
double vision
balance problems in different environments
24 - 7 ringing in the ear
can not find where the sound is coming from
speech sometimes go
short term memory

[Charlotte Lady]

I have the usual post op problems, nothing unusual except my gag reflex is all but gone.  Going to the dentist for anything longer than a filling was agony.

Most of what I do have can be attributed to the surgery itself - numbness of scalp and ear, eye weakness and vision change, facial paralysis, neck discomfort and headache.

Donna

[kimeroon]

Here was a weird one: excess saliva and runny nose 6 months post op. The Dr. said it was not CSF, as it was tested.  Has anyone had that problem?
And pre-diagnosis I felt like I was waking up every morning with muddled thinking and lots of pressure.
Also pre-diag I fell over while trying to walk my motorcycle out to ride it to work one morning. Fell on top of me. I remember not knowing why I tipped over!
My AN was 3 cm, considered large. Removed surgically. I have no hearing on the left, vestibular nerve gone. Facial recovery is not complete 1.5 years post op. Can't drink out of a bottle because my lips don't seal.
Now it is reported to be growing back. Going in for a consult on the cyberknife by Dr. Tse of Kaiser RC.
Kim

[kenneth_k]

Hi,

I have a lot of the usual symptoms.
One weird thing though is runny nose and facial sweating (gustatory sweating) when eating something sour.
My doctor thinks it may be some miswiring in the healing proces.

Best regards, Kenneth

[nanramone]

I have yet to be treated.

I began to lose ability to concentrate about a year ago, long before I was diagnosed. I worked in a lab and had to keep accurate detailed log entries; started to notice that when I wrote things down, I was misspelling words...I tried to correct the spelling and it still came out wrong. This also happens when I'm typing, with increased frequency. As Jan stated above, I also can not seem to get the words from my brain to my mouth at times. It seems to difficult to articulate everything, so I've become more quiet when I'm in groups of people.

This is the thing that concerns me more than anything - but then I read about cognitive/memory problems that could result from vestibular problems and it makes sense. My brain is overworked, I think.

Nancy

[Joef]

I have the runny nose when eating ... especially when I eating a favorite meal like a good steak...  Also the AN eye will get a little wetter too ... so if I have a case of the dry eye and no drops... a good meal will fix it !!

I also have to read , re-read , and re-re-read my work emails (and posts!) ... I commonly use the wrong word in the sentence.... 

[tenai98]

occassional metallic/blood/copper taste
mix up words in a sentence
mumble words like i'm drunk
runny noise when eating some foods
feel wonky when in new places and when that happens i notice balance problems...that invisible force pulling me to the right
lose train of thought easily
forget words or how to spell them
at times it feels like eletrical twitches in face...probably nerve regeneration.  not noticable to others, but i feel it
JO

[Cheryl R]

I asked my dr this week why my nose running and eye watering when I eat is so bad on my left as did not have facial paralysis on that side.  But to say exactly what he said about it is gone from the memory.             I also did ask him about my forgetfulness and do remember his answer is that it can happen with moving the brain.    I am worse since the last surgery.
I can look at my emails and see a word written in it and have no clue why that one is there when was going for a different one.                    But I look pretty normal if you look at me (and not trying to smile) and know people wonder why I say I have several annoyances from all this.                         I was also told that with my type of nerve graft it is pretty usual to have the bottom part of the face improve but not the upper part which is my result too.                     Just glad I am as good as I am.
                                                                 Cheryl R

[Jim Scott]

Metallic taste in mouth
Insomnia
AN Fatigue *
Pressure behind eye on OP side *
Pressure anywhere else on OP side
Tight or spastic muscles in head and neck
Phonophobia  (Fear of noisy places)
Photophobia  (Fear of light)
Barometric Migraine or Headache
Migraine increase either in level of pain or frequency of attacks
Low or High Blood Pressure  (Please specify which)
Blood pressure affecting headaches
Allergies to certain meds:
     Corgard
     Imipramine
Mood changes, depression, or Mania
Lack of ability to concentrate
Loss of intelligence  (May be negligible, not noticeable to others)

Although this thread and list of symptoms were originally posted in 2007, the questions are as relevant today as they were then.  I have very mild versions of the 2 symptoms marked with a red asterisk. (*) 

Jim

[MMH747]

It's been 11 months since my surgery to remove a 2.7 cm tumor which has left me without hearing and balance on the left side, and facial nerve damage.  I, too, continue to experience many of the symptoms described by others including:

-Metallic taste in mouth – comes and goes, gives foods an odd taste
-Tight or spastic muscles on op side of face especially when eating something salty or sour; at times it feels like electrical twitches in face (hoping it is the facial nerve coming back)
-AN Fatigue  - to point I thought it was due to something else
-Phonophobia  (Fear of noisy places) – unable to discern conversations in a noisy place – it is all just “noise”
-Photophobia  (Fear of light) – sensitive to bright light – I always try to use sunglasses when the sun is out
-Balance problems – often have to focus to reset my balance
- Mouth gets dry and tends to cough when talking a lot
-Forget words or how to spell them, mix up words, lose train of thought easily; – I have to stay really focused at times
- Runny noise and watery eyes when eating some foods
- Need to use a straw when consuming liquids and to cut food in smaller pieces due to facial nerve damage

[Pembo]

Pre-op
AN Fatigue
Mood changes
Lack of ability to concentrate
Loss of intelligence  (May be neglible, not noticable to others)
inability to find the right word or word reversals
Lower eye lid twitch
shoulder cramp
IBS symptoms


Post op
Tight or spastic muscles in head and neck
Barometric Migraine or Headache
facial numbness
facial paralysis
runny eye and nose when over heated (hot bath, exercise)
no tolerance of complainers