Facial Pain and numbness

[FrankinCA]

I am starting to feel left out because it seems my symptoms are a little different from most of you.  I had GK a year ago. (At least I am getting some history behind me.)  My face since this whole thing started about 13 months ago has ever so slowly but somewhat consistently gotten worse.  I do not have any sort of paralysis which I am of course really grateful for.  I do have numbness and pain.  Nothing a Tylenol 3 won't take care of.  I also have total loss of usable hearing and can't walk a straight line without concentrating on it but life is still good.  You should see my garden but then again it would probably make you jealous.  Within the past two weeks I did do something interesting with the help of my close friend and family doctor.  I got two MRI's.  One was from my regular GK neurosurgeon and one from a logal imaging center.  The report from the local imaging center was totally different than the one from the neurosurgeon.  One said I have an accoustic neroma the other says its a meningioma.  In looking at pictures on the internet it seems obvious that the turmor regardless of size is touching on the 5th nerve.  The two reports also differ signifcantly on the current size of the tumor.  I do know the neurosurgeon takes more pictures than the imaging center.   

This whole thing is kind of fun.  Today my face would start to really hurt than that would subside as my tongue started tingling than as that started going away the right side of my forehead started twitiching.  Right now the only thing that is going on is the pain is back in the side of the face, and my tongue and right eye are kind of numb.  Any other stories like this?

[joebloggs]

Sorry to hear you've got pain in your face, amongst other things going on.  I just wanted to let you know that I had numbness to prior to surgery.  May 2008 I woke up one day and was completely numb down my right side, not just my face, my body as well.  After about a week my body came back to normal, but my face stayed numb until surgery in March this year.  Everything was numb, the roof of my mouth, half my tongue, my ear, and I couldn't feel anything on my eyeball.  Following surgery everything is back to normal which was a shock.  I figured my facial nerve had been stretched (or whatever was going on with it) so much that it was damaged forever.  Not so apparently!  Although I must say getting the feeling back overnight in your face after 10 months without is a really really weird sensation.  It was all super sensitive for a couple of days.  As for the body - doctors think because I had such a substantial cyst inside my tumour, that it grew big all of a sudden, and at the same time as stretching my facial nerve, it hit my brainstem and caused that half of my body to become numb temporarily.  Tres weird. 

I hope your numbness doesn't get any worse - keep talking to the docs about it.  In particular keep an eye on your eye (that sounds weird by you know what I mean!).  If you lose feeling in your eye, you can't tell if any foreign objects are in there and that can lead to infections and nastiness. 

I'm sure there were at least another couple of people on here who had numb faces - hopefully they'll chime in.  And I'm sure there were some with facial pain - although, and I could totally be wrong... I did think that was a bit more meningioma related? 

[FrankinCA]

thanks a bunch

[mk]

Many of us have felt similar symptoms, both pre-treatment and post-treatment so don't feel left out!. It is true that from the statistics point of view, only about 15% of AN patients suffer trigeminal (5th nerve) symptoms, therefore they are not considered very common. Worse is that physicians are not necessarily aware that an AN may affect the trigeminal nerve and they can't tell what is the root cause of the symptoms. For example I was suffering from dry eye, at the time of diagnosis, and none of my doctors could explain it. After doing a lot of research I found out that it was because of the reduced sensation in the cornea, which regulates the amount of tears produced.

If your symptoms are worsening and you are having these continuously changing sensations, it may indeed mean that your AN is shrinking, and pulling the nerve in the opposite direction. When I had similar issues some months ago I found that ibuprofen (sometimes double dose) helped in alleviating these symptoms, as well as warm compresses.

Regarding the discrepancies in the reports, please see my post on the other thread for some insights.

all the best,
Marianna

[yardtick]

I have a facial neuroma that was debulked three years ago.  I too suffer from facial pain and numbness.  None of my doctors can figure out why since the facial nerve is a motor nerve.  I too have nasty headaches, pain behind my eye, and muscle spasms up my neck and the left half of my head.  Come to think of it I too have numbness periodically down the left side of my body, but I haven't given it much thought.   I know for a fact that the left side of my body is weaker than my right.  I have been going for physio therapy and the strength in my hands has been tested.  I couldn't believe how much weaker my left hand is.  I am left handed and my writing isn't what it use to be either.  Actually I also have a slight tremor in my left hand.  I have said this before this is the gift that keeps on giving. 

Hang in there,
Anne Marie

[amymeri]

The facial nerve is a mixed nerve with both motor and sensory component.  So messing around with the facial nerve could affect your sensory function. Additionally, the trigeminal nerve is close by and swelling can affect it and cause significant facial pain and numbness/tiingling, etc.

I have both and it waxes and wanes but is always present in some form.

Good luck to all of you.  Like someone else said...it is just  gift that keeps on giving.   

[carter]

you are not alone... i had ck in Jan 2009.   before CK, i had to wear a hearing aid on An side, now i can not hear almost anything from the ear.  this occurred at 6 months.  then about 4 to 6 weeks ago, i noticed a tingling sensation at the corner - top to lower lips.  i called Dr.  he said that the numbness is not connected to CK.  i kept asking questions and he just asked what i wanted to do.  we decided that i would use some steroids.  i had a few left from when ear issues started.  he wanted a MRI to see what was going on. 

i took steroids until ran out. 

two weeks later, i noticed the numb spot had gotten larger.  now to middle of chin.

called Dr's office, when will MRI be scheduled?  i said we are now 4 weeks past time i talked to Dr.  found Dr's staff had failed to deal with it after insurance authorized.... they just filed it .......

i have MRI scheduled for tommorrow.        good news - this is #5 in past year.  i can do them without Valium.



so no you are not alone...  wish i knew waht to tell you to do ..... if i hear of a good idea or get something good form teh dr that works, i will share it.

good luck

[chamelia]

Hi,
I am french and my english is very bad, so please, I beg your pardon in advance for this.
I have Bell's palsy since 8 months : how can I write to J Diels so that she can help me (or give me the name of therapists in France) because now, I have some synkinesis ans spasms. I've heard that CD from Jacqueline Diels about bell's palsy can be bought : who can teld me the title of it ?
Thanks a lot.