Facial Nerve removed with tumor

[Lynda]

I just had surgery on 7/27/09. My facial nerve was so destroyed that they had to remove it with the tumor. I am deaf in my r ear, numbness/paralysis/pain on my r side and ear. Not sure if any of this is going to resolve. Really discouraged. After surgery, i also have terrible left leg pain, happenned intraoperatively through my 9 hour surgery. Very depressed, trying very hard to cope.Any helpful words or suggestions? Please. Any one else have the nerve totally removed?

[opp2]

I'm so sorry that your surgery fell out that way. There are many supportive helpful folks on this forum, just to vent to or talk to. Some may be able to provide information regarding followup for you that you can seek.

[Mickey]

Hoping that time and technology will help you heal. You here so many people here who say that the body does heal over a period of time. Seeking technology,  has come a long way and is improving everyday to help people improve. Please stay as healthy as you can with proper diet and exercise. Also never forget the power of prayer. Prayers are with you, Mickey P.S. If you go back in this forum you will find so many people whose condition has improved over time.

[lori67]

Lynda,

I'm so sorry to hear about your post-surgical issues.  I don't know of anyone that has had the facial nerve removed, so I have no words of wisdom about that, but maybe someone else here will.

I hope things get better with time and I hope your doctor will have some helpful solutions for you.

Lori

[Cheryl R]

Lynda,       I had a facial neuroma with the nerve just severed and a nerve graft put in that same surgery from by the ear.    I had my face get some movement back but not all.        I am not sure if this would be similar to your situitation.       I have heard of a surgery where nerve from the leg has been put in as a graft but would depnd if you have enough nerve left to do that.      Others here have had some other types of surgery to help regain the face some but is just those who had nerve damage and the nerve left in.                                It is very frustrating to have facial paralysis and esp know it was not a usual happening with AN surgery.                     Where did you have surgery at?                           I go to Univ of Iowa.          You are still not real long past surgery and still in the recovery mode for it.        Having the leg hurt also would make it harder for trying to be active.
   Depression is very common post op and you may need to get some help there too as adjusting to all of this is very hard.           Some you will adjust to more in time but not knowing what can be done about the face is very hard.           You may hear more from others here and keep on here with us for help.                                     Cheryl R 

[followingHim]

Lynda,

Hello and welcome.  I am so pleased you have joined us here.  I am sorry to read what has happened to your facial nerve during your surgery.  Depression can occur after such a lond surgery and it is very early days yet.  Please feel free to come in and share with us anytime and I will lift you up in prayer.

Blessings

Ley

[Kaybo]

Lynda~
I am so sorry that this happened with your surgery.  I, too, have never heard of a nerve having to be removed, but then again, when all my stuff happened to me - I had never heard of that either!    My nerve never functioned again after my AN surgery so I am completely paralyzed on the right side of my face.  I had the 12/7 but didn't have great results.  Twelve years later they came out with & I heard about (on here) the Temporalis Tendon Transfer and I had that done be Dr. Patrick Byrne at Johns-Hopkins.  That may be something you want to check into since it does not involve the nerve AT ALL (that is why I was able to benefit from it after so many years)!!  Please know that you are not alone and that I would love to PM or chat with you!  If you are in the US, just PM me you phone number and I would be more than happy to call you!

K

[Vivian B.]

Hi Lynda,

I am so sorry to hear what has happened. Like others have mentioned there are treatments out there that may be able to offer you some relief. Have you discussed this with your Neurologist? If not, maybe you can ask him/her what your options are. Hang in there and try not to get too upset as sometimes the symptoms get worse when your body is nervous.

Vivian

[epodjn]

I had the facial nerve servered, but not removed, and was told the tumor was all over the nerve and they had no choice but to severe it. I was not prepared for this at all. In the MRI it looked like an AN and they told me I would have NO nerve problems at all, just deafness. The first few months were very depressing. Give yourself time to adjust. Stay with this group and feel free to post ANY and ALL feelings. These people really do understand. If that isn't working go to your doctor and tell him your feelings. Medication and/or counseling may do the trick. I know this doesn't seem possible right now, but things get better and you do adjust and find that life is good again! We're hear for you!

[Jim Scott]

Hi, Lynda - and welcome, although I'm sorry you've had to deal with acoustic neuroma surgery, the loss of your facial nerve and ensuing facial paralysis as well as being SSD (Single Side Deaf) and enduring severe leg pain.  It would be completely understandable if you were feeling discouraged as you struggle with all this.  I'm not a doctor and can't offer medical opinions but it's likely that the leg pain will resolve in time.  I assume this is being treated.  Considering your facial nerve had to be removed, which is relatively rare, the facial paralysis prognosis is problematic and I won't venture an opinion but it is possible that this can be addressed with a graft or other surgical approach.  It's not likely you'll regain hearing in the affected ear, but that will depend on whether or not the nerve was cut.  Unfortunately, only a fairly small percentage of AN surgical patients retain hearing in the AN-affected ear.  There are no easy answers but we do offer our understanding and support to you, Lynda.  You may want to consider some form of counseling, if only to vent your frustrations.  Of course, you can do that here, too, anytime you wish.  Our members all had or have an acoustic neuroma and many had or will have removal surgery - and not all of our post-surgical members had perfect outcomes.  Even if we haven't had an identical post-surgery experience, we understand your feelings.  Please accept our offer of friendship.   Virtual as it may be, it's sincere. 

I wish better days for you, Lynda.  Please stop by again, soon.  We'll be looking for you! 

Jim

[4cm in Pacific Northwest]

Very depressed, trying very hard to cope.Any helpful words or suggestions? Please.

Lynda,

BIG huge HUG!

Still in the middle of a back to school routine week here but I hope to post more later... with links and resources of what can be done to assist you.

Know that you are not alone and there is an amazing group of people, here, to help you get through this.

(Nancy and Kaybo are very inspirational people -with amazing stories of strength and courage!)

I am thinking we should move this thread to "facial issues" since we a have a more specific following in that category of people- who can offer more facial specific support to you. Depression can set in if we become isolated and do not get out-and-about and talk with people. For me this group here, on the ANA forum, was my only social lifeline until I got through physical and mental hurdles (and so far without anti-depressant meds ...but know that these drugs DO have their place and I respect people who need these.)

More HUGS...

I'll try to post more later... on the weekend.

DHM

[nancyann]

Hi Lynda:  I know exactly how you're feeling.   My facial nerve had to be cut, then was re-attached end to end, but I ended up with total facial paralysis.
Because I was 50 y.o. at time of surgery, I opted for the T3 (Temporalis Tendon Transfer), also by Dr. Patrick Byrne at Johns Hopkins in Baltimore
Maryland  instead of a nerve graft.  Most people with facial paralysis opt for the nerve graft & get good results.  You can google his name - there are before/after pictures of others who've had the surgery.
I have also posted my before/after on this forum at:  Facial Issues:  Post Temporalis Tendon Transfer.  I am very happy with the results !
I still use Refresh PM lubricant (drops don't work for me) at least 5 times daily.
I had a platinum weight put in my upper lid which helps to blink (when upright) & helps with appearance (my eye looked like a skeleton before the weight).
I use NITEYE, the dry eye comforter eye bubble every night (it's a plastic oval with adhesive around it that goes over your AN eye) - it makes like a moisture
chamber so your eye doesn't dry out while sleeping.

Hang in there - I know it's very difficult at first; I felt like I was living a nightmare.  Remember to keep your eye well lubricated to avoid a corneal ulcer,  get an eye weight put in.
Facial surgery options are a nerve graft &/or T3.
I am very happy with my life,  I have adapted to the facial paralysis, & am back to doing most of the things I loved pre-op !

Always good thoughts,  Nancy