Hello, I am new and have a question for anyone with a Facial Neuroma...

[KimR]

I had surgery in 2003 for, what was thought, a 1.5 x 0.9 cm acoustic neuroma. The surgeons found out, once poking around inside my skull, that it was in fact the more rare variety... a facial neuroma. They decided that, since I was 43 at the time, they would not remove the tumor and instead remove some bone to give it room to grow so I could keep the left side of my face intact for as long as possible.

I was having yearly MRI's up until 2006, when I stopped due to my mom becoming paralyzed from the waist down. The tumor had not grown from 2003 to 2006. The last couple of weeks I have been having episodes of lightheadedness and an increase in headaches. Thursday I almost passed out in the shower, had nausea and blurred vision for about 10 minutes. The blurred vision scared me more than anything else.

This morning I had an MRI and this afternoon I saw the neurologist. My tumor is now 1.6 x 1.7cm and he suggests I go back to the surgeon who did my surgery in 2003. My question is, if they suggest surgery, how likely is it that I will have facial paralysis? This scares me more than anything.

Any info you can give me regarding facial neuromas is greatly appreciated. Thanks.

[Cheryl R]

Kim,   I am sorry to hear of your tumor being a facial one.    You had a bone decompression done to help  give room for the tumor.  I would ask your surgeon how many facial neuromas he has done surgery on.      My neurotologist at Univ of Iowa likes to do a nerve graft with taking nerve from by the ear and grafting in if during surgery the facial nerve is severed.    In this case one does have paralysis for several months and I did not have complete movement back but some so the face looks ok at rest.   Some surgeons remove part of the tumor and leave some and do some radiation to help prevent more growth.         One may not know of the outcome till one has the surgery.     There are some surgeons who do not know much about doing the surgery on the facial nerve and you need to make sure you have one who does.       You have to be specific in asking how many and their outcomes. 
 My surgery type was translab as had already lost the hearing on that side.   
My only symptom prior to my surgery was some facial drooping.     I am surprised you would have some of the symptoms you have had.     There must not have been anything else showing up on the MRI.    I would ask even if maybe if a CT scan might be needed.   A dr would be a better one to ask for that possiblity.       
If the nerve is severed then yes there will be paralysis if nothing else is done at that time.    There are some types of surgeries one can do later to help improve the paralysis.            Knowing ahead that it is a facial one can help in getting the  right surgeon to do youe surgery.                  Good luck and keep us posted what you find out.
                                                       Cheryl R

[KimR]

Hi Cheryl,

Thank you for replying. I also get pain and tinnitis in my left ear and some hearing loss due to the surgery I had in 2003. My headaches are daily but recently they are worse.  The lightheadedness, nausea and blurred vision is new.

I had my surgery in 2003 at the University of Michigan and they said they had never seen a neuroma originating from the facial nerve except in text books. They asked my mom for permission to video tape the surgery.  I think I am limited as to where I can go since I am disabled and on medicaid.

[sues1953]

Hi Kim,

I don't have a facial neuroma but I have a friend that just had surgery and she had a facial neuroma almost totally removed with a very small amount of facial effect.  She had the surgery done by Dr. Kartush at Michigan Ear,  she lives in Canton.  I don't know how much experience Kartush has in facial neuromas but he did inform her that he would be able to radiate the remainder of the tumor when she heals from surgery. 

I will call Carol Ann and let her know that you are here and you have questions and hopefully she will contact you.  Do you live in Michigan?  I live in Oxford, N. of Detroit and Dr. Kartush did my surgery on May 20th.

Best Regards,   Sue

[Cheryl R]

Hi Kim,    That is interesting about your drs not seeing a facial neuroma as know they are not common but not completely rare.    Surgery is the same as for a regular AN but one has to be more careful as the nerve can be severed easily and then there are problems and paralysis.               Would your medicaid let you go out of state?    Iowa City is a bit of a ways.       I know as we have a daughter in Lansing.   Can you try the Michigan ear?        If the state says you need to go where you did before then try to appeal as one need experience.             Plus everyone has a different experience as each persons tumor location on the area of nerve can play apart in how it all goes.    Sounds like might be best to work on this soon.           I know this has to be a worrisome time and  hard when we have to be the ones who find the right dr.            I don't know if your U of Mich drs can refer you to another if you make sure to say you want a dr who has done them.   
                     Wish we could be of more help.                   Cheryl R

[KimR]

Hi Sue and Cheryl,

Yes I live in Houghton, Michigan. So you say Michigan Ear is a good place to go? I will call my neurologist after lunch and ask them about that. Thank you and yes it would be great if I could talk to your friend who had surgery with Dr. Kartush.

[yardtick]

Hi Kim,

I too have a facial neuroma and my experience is very similar.   The ENT who operated at the time removed some bone to allow growth, he also debulked the tumour.  When I went to see him for a follow up, he told me he had no idea what I have, he sent everything off to pathology and that it was such a mess in there that it wiped out the three bones in my middle ear.  I had surgery Sept 2006, and I have been watch and wait ever since.  I suffer brutal headaches, facial pain, hemifacial spasms, balance issues and depression. 

I have a MRI about every 10 months and thankfully the tumour has remained stable.  If there is growth, the neurotologist and neurosurgeon will do a nerve graft but they will take a nerve from the back of my right leg for the nerve graft.  Maybe for me it has to due with the location of the tumour. 

I'm curious are you on disability because of the tumour or another health reason for I'm also on disability because of headaches and facial pain. 

Anne Marie

[KimR]

Hi Anne Marie,

I'm on disability because of Ankylosing Spondylitis. I found out about the tumor after. I'm so tired of doctors and surgeries. I've had 4 surgeries since 2006, not related to the facial neuroma, and have just been told I may be looking at knee replacement in the future. I'm a real mess. Now I find out my tumor has grown.

[sues1953]

Hi Kim,

I talked to Carol Ann and told her about you.  She is 3 weeks post opp and has not been on the computer yet.  She is going to contact you soon.  Hopefully today.

It sounds like you are going through a lot right now.  I will keep you in my thoughts and prayers.

There also is DeniseS, she lives in Ludington MI and she went to MI Ear as well.

Good Luck.   Sue

[Denise S]

Oh my dear friend Sue even mentioned my name    how interesting.   I was reading this (because I was thinking of Carol Ann when I read the topic) and see you too are from MI.   Anyways, I would highly recommend Michigan Ear Institute as the place to go in MI.   Try to be sure to get Dr. Kartush if you can.   Sure he is probably the most experienced in this state anyways.    I'm pretty sure he is the one who developed the facial monitor that is used during surgery to monitor the facial nerve while working on tumor removals.

BEST WISHES to you!!   

Denise

[Anomar11]

Kim,

I'm also a Michigander.  You're in my prayers.  When I was diagnosed, I was seriously considering Michigan Ear and would have tried for Dr. Kartush as I have an acquaintance who had him and was quite pleased.  I ended up going with Cyberknife. Take care.  Mona

[Denise S]

Kim,

I'm also a Michigander.  You're in my prayers.  When I was diagnosed, I was seriously considering Michigan Ear and would have tried for Dr. Kartush as I have an acquaintance who had him and was quite pleased.  I ended up going with Cyberknife. Take care.  Mona

Well hello other Michigander    What area are you from?   Curious where you are getting the cyberknife done?   Hopefully all is going well.

[Anomar11]

Hi Denise,

I'm in Kim's neck of the woods - Upper Peninsula.  Had CK at Stanford 11/'08.  It was well worth the trip. It was the right decision for me.   I hope all is going well with you also.

[KimR]

Thank you everyone for your best wishes and prayers. I hope you are all doing well. 

[neuroma_racer]

Hello Kim,
   I am about 2.5 months s/p middle fossa approach for what was thought to be. 5x4x7mm AN, but turned out to be a FN, like yours.
I had NO facial palsy going in, minimal hearing loss, and mild (ignorable) tinnitus.
Once inside my noggin, they uncovered it's true identity, debulked it a little, (obviously unroofed the boney canal), and closed me back up.
I asked the neurosurgeon how much he debulked it, and at one time he said "60%", and at another time, he said "just a little bit".
(I'm not quite sure how to reconcile those two different estimates)(and at this point, it doesn't much matter)

Post-op, hearing is the same, and if I tell someone to look for it, they can BARELY detect a slight assymetry to my smile, ( it would be unnoticible, if one didn't know to look for it).

The way it was explained to me was that:
     if, down the road. I were to develop a grade IV palsy, then they could go back in, excise the tumor, do a nerve graft, and get me back to at least a grade III, if not better.
Since I had NO palsy yet, they made (IMO) the right decision to leave well enough alone, for now.

I had three neurolotologists from House Ear Institute on my case, AND a neurosurgeon.

Overall I am happy with my outcome, and remain eternally thankful I didn't opt to nuke the thing as I would have a major palsy , and perhaps be less (to perhaps UN-) responsive to a nerve graft.

Hope this helps some.
Jesse