Facial Numbness before treatment

[Meshell201]

Hi - I was wondering if anyone with a small AN has experienced facial numbness prior to treatment -- my AN is small -  5mmx4mmx4mm.  I was diagnosed by my local ENT in February and have an appointment at UVA in Charlottesville, VA on 11 April.  The numbness has happened twice (lasted 2-3 days each time).  Thank you for your responses.

[ppearl214]

Hi Meshell

I have had some intermittent facial numbness across temple/upper cheek area but it was determined, in my case, that there was no trigeminal or facial nerve involvement from my AN.  The nerve complexes are very close in proximity, so we never say never but it can occur.  Please keep us posted on what UVA says as there may be other here that may report the same as you and it could be useful info for others.

Phyl

[Meshell201]

Thank you Phyl.  Just you telling me that it may not be related puts my mind somewhat at ease. I will let you know what the Doc at UVA tells me.  Thanks again!

[millie]

Sometimes I get a little tingly feeling and I don't know if it is real or psychosomatic.  I will find out more at the meeting in NYC today and report what I have discovered.  Millie

[Meshell201]

Millie, I have wondered the same thing...ever since February when I was told I had this, everything that I experience I wonder if it's related to the AN!  I look forward to reading what you find out!  Thank you so much!!  - Michelle

[mindyandy]

I had some facial numbness off and on after CK treatment. Nothing too bad. Facial numbness is from your trigeminal nerve. My AN is not huge but it was touching my TN nerve which 4 years after CK caused trigeminal neuralgia (not common). My AN probably was always touching my TN nerve even before treatment. I had retrosigmoid 3 weeks ago to relieve my TN pain. My face has numb spots now like my lip and parts of my cheek oh and my tongue all on AN side. I'm hoping this goes away but time will tell. This is not common with AN's but some of us have had trigeminal involvement.

Mindy

[trev0024]

I just had retrosigmoid on what was thought to be an AN. Turned out to be facial schwannoma. I guess these are extremely rare and difficult to diagnose pre-op depending on location. I had some occasional upper eye lid twitching, twitching in the corner of my mouth, rarely dull numbness of face, hearing loss and tinnitus. My surgeon's still did not suspect facial schwannoma. My research reports ~600 total cases in the medical literature.

Anyways, that was my experience.

[Cheryl R]

Jeremy, one of my 3 tumors I have had due to NF2 was a facial neuroma.     Gantz in Iowa City had told me ahead if was a facial one and did end up being severed that he would do a nerve graft at the same time with nerve from by the ear.    He did end up having to do this.       I never had any numbness pre op.    I have had twitching off and on with both kinds of tumors and none were ever near the brainstem.   My symptoms pre op was starting to get some drooping just maybe a month before surgery.     Mine had grew fast as went from something maybe starting on MRI but couldn't say for sure to 2 cm the next year.         I did get some movement back and to look at my profile can see look ok at rest.     Not much around the eye but have eye closeure.            I do use gel in the eye at night.        Rarely need Refresh Liqugel in the day.                      I do know someone who had a facial neuroma since and Gantz left some tumor so sounds he is going for that way more hopefully.
                                                                   Cheryl R

[Meshell201]

Thank you all for sharing.   I'll be sure to talk to the doctor in April about it.   I find this site very informative, with real life information and experiences that make so much more sense to me than reading an internet article!  Thanks again for all your support.  - Michelle

[Lou]

Hi Michelle
I have some intermittent facial numbness and twitching- However I have two facial nerve neromas,so not sure if that helps you any. Good luck with your follow up. I am scheduled for my first follow up MRI April 30th.

[nann]

Hi Meshell,

I had some facial numbness, that was my symptom that lead to discovery of a small AN.They were surprised I was having numbness considering the AN was not that big.

Nancy

[Meshell201]

Thanks Nann....from reading the posts, I guess size doesn't matter -- the symptoms seem to be the same for some, but different for others.  One person on this site told me that we're a "rare" group...I totally believe that!  My AN is small, only 5mm -- I have the fullness in the ear and I have a pressure in my head all the time and occasional light headedness.....now the numbness.  I'm hoping that some of it is the stress of waiting almost 2 months to see the specialist!  What size was your AN when it was discovered?   Thanks again for sharing!  - Michelle

[nann]

Hi Meshell,

My An was 4mm x 5mm same as yours. It was discovered oct. 2010. I then had Mid Fosa surgery June 2011. But now back on the W@W. They either did not get it all or another one was there they did not see. So back to square one. I still have intermittent facial numbness, occasionally mouth and tongue numbness along with other problems. But now not sure which symptoms are result of surgery or from remaining tumor. Sooo confusing. Back for another MRI the end of April.

[pjb]

I too have the facial numbness mine was 1 cm at the time of my surgery but the surgeons left 3 mm behind so I am assuming this was not from the surgery but due to what was left...Only advice I can give is research and they are usually slow growing so take your time in deciding and choosing a GREAT team of doctors.

Best Wishes,

[Meshell201]

Thanks Nann and PJB, appreciate your responses.

Nann, it's good for me to know that the small AN could be causing the numbness...it's really stressing me out, I keep researching and most say that the larger AN's cause the numbness.  At some times, I feel like the numbess is not only on the AN side, but a little patch on the otherside of my face....but from what I have read, it should be only on the AN side....correct?  I plan to tell the doctor's everything on 11 April.  I thought I would consider the W&W if that was offered, but at this point...after having waited for 2 months to get an appointment, I've realized I may not be the W&W kind of person....this is very stressful not knowing.  Since your AN was the same size as mine, did you have any side affects after your Mid Fossa surgery?  I pray your MRI comes out well.  I will look for your post after your MRI!  Good luck and thank you!

PJB, I definetly am doing the research and will take your advice on finding the right team of doctors!  Thank you!!