Facial Nerve Neuroma

[Jill Marie]

 I've made a couple of posts on this forum because I've experienced a lot of the same things some of you have despite the fact that I didn't have an AN.  I was hoping that despite our diffrences we could learn from each other, especially since I had my surgery 15 years ago.  I did some more research on the Internet tonight and found that since 1930 only 500 people have been lucky enough to have a Facial Nerver Neuroma, therefore there aren't enough of us to make an association, I checked on that as well.  So for now, it looks like you are stuck with me!  I deal with some issues most of you don't but on the other hand I have found that I don't have the headaches and pain that a lot of you do, which I would be dealing with if I had an AN like my PCP thought I had.   

I also emailed the doctor that did my surgery, haven't contacted him in years, thought perhaps there might be some new developments in eye care that he could tell me about or new surgeries to make my eye water/tear again.  I know it's probably just wishful thinking but I had to try!

Goodluck to all, Jill Marie

[Cheryl R]

Hi Jill Marie.    I also have had a facial nerve neuroma and next week wiill be the 1 yr anniv of my surgery.      I previously had a regular AN on the same side and had surgery for that in 2001.    I have NF2 so that contributes to my tumors and how they act.    I go to the Univ of Iowa for treatment.        My facial nerve was severed at the time of surgery and a segment of nerve was taken from by my ear and grafted into the facial nerve.        Otherwise my recovery and post op course was just like a regular AN surgery.            I was told not to expect any results of facial paralysis for 8 mos and that about when there was some improvement.     I now do not have much of a smile but the face is looking much better at rest.         I still have some of the dry eye problems but that varies from day to day.      I now have complete closure of the eye.    I did not have any gold weight or other procedure done and have got by fine with my own eye care of the Liquigel and night time heavier gel.                                  I was having some facial droop prior to the surgery.             Hope this is help to you and feel free to ask any questions.
                                  Cheryl R

[Jill Marie]

Hi Cheryl R,

Thanks for writing me back, sorry I didn't reply sooner but I was a bit overwhelmed by what I was reading on the forum and had to take a break from it.  Despite having dealt with this for 15 years and doing well all and all every now and then I throw myself a little pity party, wonder what if I hadn't had the tumor, what would my life be like, what if I had the tumor now when medicine is more advanced?  I had one of those parties a week ago and that's what lead me to this forum, I wanted to see if perhaps I could find someone that understood what I deal with daily and to see if perhaps there's something more I could do to make life a bit easier.  If I found that there's nothing more I can do then at least I would know I'm doing all I can.  You are the first person I've met/corresponded with that has had a facial nerve neuroma and it only took me 15 years.  I know that are lots of us out there but I didn't know how to contact them. 

First anniversaries are suppose to be something you celebrate, you can celebrate the fact that you have made it through the roughest part of having a Neuroma but then again since it's your second Neuroma perhaps it's not as big a milestone for you, perhaps it's even a bigger celebration because you've made it thru 2 surgeries .  Until I read this board I knew nothing about NF2, I hope that you don't have to deal with another one.  When I had my surgery they told me there wasn't any need for annual MRI's to check for more tumors, they said to call if I detected any signs of a possible tumor. My tumor started growing before I started school so I figured if it took 30 years to cause any major problems then I needn't worry about a new one doing much damage before I was to old to care.  Now that I'm 50 I'm thinking that perhaps I should get checked as I don't want to let a tumor ruin my retirement years.  I would like to catch it while it's small. 

As for my surgery, my nerve was also severed, they took part of a nerve from my neck to replace the damaged nerve, they took some fat from my stomach (not nearly enough, he, he) to fill in the neck nerve.  My surgery was done by Dr. Charles Mangham at the Seattle, WA Ear Clinic.  I was told that it would take about 6 months for my face to start working again and indeed it did.  That was my Christmas present that year!  I had no facial drooping before the surgery but the doctor detected a difference between the left side and the right side of my face when I closed my eyes.  I was given the option of having the surgery then or waiting so I could have full use of my face a while longer.  The downside would be waiting to long and not having my face regain as much use as I have now.  After my surgery the doctor told my husband that he was glad we went ahead with the surgery as the tumor turned out to be bigger than they thought it was. 

I too have a so, so smile, I guess it's more of a grin, if I really try to smile it makes my eye and the rest of my face look strange so I stick to the grin.  My eye closes about 95% and I luckily can blink.  The doctor told me I wouldn't blink and my eye wouldn't close but it did right after surgery.  I guess there is some connection between the two eyes that allows the left to blink when the right one does. I haven't had a gold weight either.  The doctor told me my eye would water after a couple of years but that hasn't happened.  That's where we differ, I take it yours waters some.   I use ointment every 5 to 15 minutes depending on the weather and whether or not I've neglected it for a bit. 

Dr. Mangham emailed me back Friday and gave me the name of an eye doctor that might be able to help me, will check into it but not expecting any miracles. 

I'm assuming your face will improve over time as the nerve regenerates, other nerves take over the damaged nerves job and because you use the muscles and nerves everyday, I know mine did. 

Thanks again for writing, Jill Marie