Face "Freezes"

[danalynn]

I'm sorry to have to join this group, but I have been very greatful to find this site and read all of the information shared by those also diagnosed with AN.  I just received the news two days ago.  Something I haven't read anyone else mention in their lists of syptoms is facial "freezing" as I call it.  Every once in a while, out of the blue, the right side of my face freezes for about a minute and then I slowly regain movement.  I'm assuming this means my tumor is pressing against the facial nerve which makes me quite nervous about my treatment options.

Has anyone else experienced this?

[nancyann]

Hi danalynn:  My only symptoms preop were tinnitus, decreased hearing & occasionally twitching by my right eye.

I didn't have the symptom you are describing, but I agree with you it could be the facial nerve becoming involved.

How large is your AN?   You know there are 3 options:  watch & wait for those with very small tumors, radiation for those
with tumors usually less than 2.5 CM, or surgery. 

I'm sorry for your diagnosis also, but very glad you found this site.

Always good thoughts,  Nancy

[yardtick]

Danalynn,

I actually have a facial neuroma.  I too experience the facial "Freezing" and I'm glad you have given it a name.  At times the sensation feels like a zapping before the freezing and it is sharp.

Welcome to our group.  I'm sorry you had to find us, but this place to be.  The knowledge, support, encouragement and friendship has helped me deal with my neuroma.  Let's not forget the humour.  The saying "Laughter is the best medicine" applies to us here.

Take care,
Anne Marie

[ceeceek]

Hello Danalynn,
Sorry to hear about your situation. I also suffer from facial nerve damage. I have a vidian nerve schwanomma, somewhat of a distant relative to an AN and it is intertwined with a variety of nerves including my optic nerve and trigeminal nerve. I have had both surgery and CK treatment with positive results.
However, the nerves are still somewhat permanently damaged and as the tumor grew it stretched the nerves, and now as it shrinks it is pulling them back so I am in a catch twenty two so to speak.
That being said..there is hope at the end of the tunnel.
Surgery was needed in order to positively identify my tumor and while I was at it,,might as well try and remove it, however stereotactic radiation would have been my first choice. Since my tumor is skull based and somewhat difficult to remove, plus to top it off it is attached to my carotid artery, we were unable to remove it without resorting to traditional surgery which would have involved removing my brain, digging out the tumor and then putting it back...which I passed on. I tried and innovative approach through my nose and was able to identify the tumor and make it ever so slightly smaller but either way, although much less invasive, it was indeed still brain surgery and not fun. It aggrevated lots of the nerves as when they attempted to pull on the tumor,,,they pulled on the nerves as well. When I had follow up CK I experienced much of the same but to a MUCH LESS SEVERE DEGREE.....
Only a few days of facial pain freezing or stroke like symptoms. Now my MRI reveals that my very unhappy little tumor is dying...good for me.
To treat the trigeminal nerve pain, as well as sinus problems, tinnitus, and double vision, I have used acupuncture quite succesfully and highly recommend it. The CK treatment was much easier as a whole and I kept working the whole time as well as attended school so although annoying, it did not bother me so much that I could not cope or needed pain killers etc.
Every now and then  the trigeminal nerve will flair up,,,making my face numb, or my teeth hurt etc. Usually it passes within a few hours and at this point I have gotten used to it..if it still bothers me after a few days, I just go to the acupuncturist and then tadah! all gone.
Hope this helps and welcome to the group. Hang in there it can be a scary process, but there is much hope and positive outcome to be had.
Ceeceek

[danalynn]

Thank you for your responses!  My tumor is 1.5cm x .5 and I see a neurologist on Monday to figure out the gameplan.  Another question I have is, is this a "for the rest of my life" condition?  Does one ever get back-to-normal after something like this, or do I have a life of continued treatments and doctor visits to look forward to?

Best wishes to all going through this!
Dana

[sgerrard]

Hi Dana,

You will get back to a "new normal", anyway.

I think most ANers are a little different for having gone through this process, some more so than others. But most also get past the treatment and recovery phase, and don't have to do much after that, except the usual checkups and an occasional MRI just in case. Certainly many are able to resume a normal life, and go on to have kids, or run marathons, or whatever it is they need to go do.

Best wishes,

Steve

[leapyrtwins]

My tumor is 1.5cm x .5 and I see a neurologist on Monday to figure out the gameplan.
Dana

Dana - actually you are seeing a "neurotologist" on Monday; similar name, different specialty 

Yes, there is life after an AN.  But it may take you some time to get back to the "place" you were at before your treatment, and as Steve mentioned, you may have a "new normal".  My new normal includes SSD and will soon include a BAHA.  For others, normal may include facial paralysis for a time or an eye weight.  All patients heal at different rates, and some may have lasting problems, but we all find our "normal" at some point in time.

For a long time after my surgery I wondered if I'd ever get back to doing things like riding a bike, running, walking a straight line (due to my balance issues), or if I'd ever be able to enjoy the taste of certain foods again (I was a victim of the infamous "metallic" mouth).  Although my neurotologist assured me that I would eventually do these things, at times it was downright depressing and I was discouraged.  But probably about 5 1/2 to 7 months post op, I found that most of my issues had gone away.
 
As Steve also said, once you get past the treatment and recovery phase, there will come a time where you won't have to do much.  I saw my neurotologist 2 or 3 times post op before I returned to work full-time at 5 1/2 weeks.   I didn't see him again until 2 1/2 months later when I chose to have a BAHA demo.  If I didn't decide to go ahead with the BAHA surgery, I wouldn't have seen him until my first annual MRI.

Even the BAHA surgery isn't requiring a lot of followup visits.  I think I was told that I see the doc 3 times in the next 3 weeks and then that's basically it until my MRI appointment.  Three months post op I'll see the audiologist for my "device" but I don't think I'll be seeing the doc at that appointment.

Good luck on Monday.  I think you'll find you like the neurotologist as much as I do   

Jan

   

[Kaybo]

Dana~
Hello and Welcome...you find a better, more caring & compassionate group of people than on this site!

As one of the people here who has lived thier life AFTER surgery for the longest (12 years), I can honestly say that I have a WONDERFUL, full life.  Have things changed a bit from what I thought they'd be?  Maybe...OK, probably yes, but nothing that couldn't be dealt with.  I would say it just threw us for a little curve or detour.  I was young when I had my AN (25) and had only been married a year so I have gone on & had 3 beautiful daughters.  I had quite the tumor and surgery, so it took me a lot longer to bounce back (plus I just think everything is better & they know more now), but I went back to teaching 1st grade after 3 months and taught until my 2nd girly was born.  If you would like to check out my blog about life after AN it is listed below.

My face didn't "freeze" per say, but even when my hubby and I first started dating, I told him that sometimes I would dribble food on my chin and not feel it and to tell me.  I realize now that was probably when the tumor was pressing on that facial nerve.  Of course, now people are always having to tell me when I have something on my face.  That doesn't bother me (but when someone tries to wipe it off for me, that REALLY bothers me -- even though I know that they are just trying to help!) but I DELIGHT in getting to tell others when they have something on their face!!!    LOL!!!  I have issues that arise from time to time that I have to have checked out that are an indirect result of the AN, but if it wasn't that, I'm sure it would be something else that I would have to go get checked.  I had to have MRI's for the 1st 5 years, but not anymore.  However, my GP is good about letting me get one every once in a while to help my peace of mind (it is probably about time...)

Please contact me if you would like to chat or if I can help you in any way!
Hope your appointment goes well...
K

[matti]

Hi Dana - I am following behind Kaybo at 10 years post op and also doing great. I  have SSD and other issues, but they have become my "new normal" and have adapted well to them. Sure there are days here and there that aren't the best, but as we know that can happen with anything in life.

My main symptoms pre-surgery were facial tingling, numbness and facial freezing. My hearing was perfect. My tumor had wrapped itself around the facial nerve and flattening it. To this day, I still have some facial freezing, around the cheek and corner of my mouth and mainly occurs when I am tired.

Good luck and please let us know what the dr. says. Keeping you in my thoughts!

Cheryl

[Jim Scott]

...is this a "for the rest of my life" condition?  Does one ever get back-to-normal after something like this, or do I have a life of continued treatments and doctor visits to look forward to?

An acoustic neuroma is benign - not malignant - and if it's removed via surgery, that should do it.  If the AN is treated with radiation it should eventually develop necrosis - cell death - shrink and essentially 'die'. Whether surgery or radiation is employed, re-growth is always possible but the odds are just a tad over 1% for surgical removal and 2½% with radiation.  Certainly not numbers worth worrying about.  Post-op/radiation MRI scans are required but they are usually performed annually and, eventually, only every 5 years.  Hardly a burden - unless you're claustrophobic. 

Most AN patients resume perfectly normal lives, as many of the posters on this and the other ANA forums will attest.  I'm almost 2 years post-op (18 months post-FSR) and do everything I did prior to my AN diagnosis, surgery and radiation.  Oh, I have a few tangential issues that I deal with but nothing that alters my lifestyle, which is relatively active but not strenuous.  As an example: I was driving - with my doctor's permission - 2 weeks after my surgery date.  You'll likely be just fine post-op but a lot depends on your doctor's skill (avoiding nerve damage) and your own determination to 'get back'.   Most AN patients resume our normal lives in time but, even in the best situations, not without some personal effort and a positive attitude about 'getting back'. 

Jim

[leapyrtwins]

Jim -

I was just reading your post - which BTW, I totally agree with - and I noticed that you have a picture now

It's so nice to be able to put a face with a name after all these months.  It's good to "see" you,

Jan

[Edu]

HI DANALYN; I JUST HAD MY AN REMOVED ON MARCH 11 AT HEI .  WHILE I WAS THERE, IN THE HOSPITAL A LITTLE GIRL 11 YEARS OLD  ALSO WAS HAVING SURGERY. I REMEMBER HER MOM TOLD ME THAT HER SYMPTONS WERE THAT HER FACE FROZE FOR SECONDS OR A MINUTE THE MOST. MAYBE YOU COULD TALK TO THE DOCOTORS AT HEI AND THEY COULD HELP YOU
SINCERELY
EDU

[Boppie]

Dana, With your tumor size you will surely be thinking life is normal by the first year, second year at most.  Keep your chin up.  Time drags for a while before and after treatment, but you will get involved with your healing and recovery process and feel like a stronger person when the game is done.  There is so much for us to do with our lives.  You will win over the AN!

[Gloriann]

My face, or rather my jaw, would freeze for a few seconds sometimes when I opened my mouth wide, like applying lipstick or saying "ah" in a doctor's office one time. The pain that hit the side of my face in the jaw area was just about unbearable! This is why I saw my family doctor and by that time I had a long list of symptoms, but the "face freezing" was the "icing on the cake".
 I had already been to see an ENT doctor for about a year with the other symptoms. Those symptoms were coming only one at a time, and we both thought it was sinus problems or inner ear problems (like menieres disease) which was treated by medication and the dizziness seemed to go away, so we thought the medcine worked.