ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: joycebaskin on April 23, 2008, 09:09:12 pm
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does everyone who is suffering with facial palsy also putting up with alot of facial pain? Ijust can't see that this is better than before there is no quality to life. i know i have made some bad disucussions in my life but this was the worst. I should of left the tumor there at least my life would of been the same until the end. i have been taking alot of neurtoin but not working. docto vists to far from each other. not getting no results. joyce
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Hi Joyce: I have total facial paralysis, right side, never had facial pain.
I'm wondering - is it due to your muscles contracting ? Do you have some tone/movement ?
Some people use Botox for the contractions (due to synkenesis) & it works very well.
If this is due to trigeminal nerve involvement, I was told by my neurologist this causes excruciating pain - I would suggest seeing a neurologist who specializes in this.
Hope you find some answers, Nancy
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Hi Joyce,My face has the feeling of just leaving the dentists office,numb.
It has been that way since april of last year,my jawbone has been more painful than numb.
If your feeling [zappers] a rubber band snap feeling in your face it might be your nerves trying to regenerate.
I can sense your frustration with all this and share the same feelings however,we are alive !
try to concentrate on the positives,you can walk,talk,shop drive,etc...
Together we will beat this thing.
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Hi Joyce,
I am cheering you on. I know this must be hard. I only have twitches occasionally right now and no treatment yet. I have heard botox is good for muscle spasms, my son has a Parkingson type problem and if his new medication hadn't worked, the botox was an option. Hang in there, okay
SATMAN, I had meant to respond to you before about satellite business. You asked what part of biz. He was in satellite communications, either satellite phones, tracking devices, internet, etc. Also, on to a serious matter, The good ship PBW, full of pirates requests you to be the ship's cameraman. Put a post on "Good Morning" thread if you are interested. (we just got 100,000 hits. - Phyl getting the record number!)
Take care all,
Mary
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Satman,
I experience everything you do with a terrible pain behind my left eye. My entire left side of my head aches, and my neck . I'm to the point I can't lift my left eyebrow when I apply mascara. I'm in the watch and wait knowing I need a facial nerve graft. Tomorrow I see the Dr. The left side of my face is swollen and at times I have palsy. I'm ready for the nerve graft. You are so right about being alive!
To everyone who suffers from facial pain, I feel for you because a times it can be debilitating. Than you throw in migraines *@#&, ITS A NIGHTMARE :'(
Anne Marie
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Anne Marie~
I am so sorry that you are experiencing this -- I've always said that in a way I am kind blessed because I don't have the facial pain (or ANY pain) on that side -- I guess you have to find the good in everything!! This is the 1st time in 12 years that MAYBE if I would have had feeling, the infection wouldn't have gotten so bad, but who knows. I hope that the 12/7 helps -- I had it -- not a bad surgery and it did help some!
;D
K
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Anne Marie
So sorry you are dealing with this. Sending my best wishes and trying to get the wand to perform a magic health upgrade. I wish I could!
Take care,
Mary
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Hi Joyce
During the time my face was totally paralyzed, there was no pain. Then once I started to get tinglings, I did notice pain -- but generally it's a dull ache -- especially on my forehead and cheek. It's been going on for several weeks.
And Ann Marie, I am so sorry to hear that. I didn't realize how bad it had become. As silly as it may seem, I think some of it has to do with the fact that we all post smiling pictures of us in our profiles. So it seems like the people we see everyday are happy and recovering well. When in reality there is a lot of pain and frustration and disappointment that we don't see. I wish you the best.
David
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Beautifully said, David!
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Thanks David and Mary,
I see the Dr tomorrow. Lots of questions and lots of complaints. I do not want to watch and wait anymore. I want the bugger out so I can go on with my life. I'll keep you posted.
Anne Marie
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Hi Anne Marie
I got confused and thought you were a postie. By all means, get rid of the thing if your health is up for it. You shouldn't have to go through the pain you are dealing with. There are a lot of things to deal with on the postie side but a brainbogger isn't one of them. We'll be with you on this.
David
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Anne Marie -
I, too, didn't realize how much pain you were in until I read your last posts :o I can't even imagine what you are going through.
I hope the doctor's visit today was productive and that you are on your way to rectifying this situation.
All the best,
Jan
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The Dr's visit was very eventful. He noted all of my facial changes and today my face was behaving. He told me with the location of the facial neuroma I'm going to have some palsy and it will clear up and come back again, its to be expected. As I said today my face looks pretty good so he wants to wait for the MRI. He felt behind my ear around my scar and all along the my head were I told him I have pain. It hurt but one area in particular was very, very sensitive. He feels I have a "NEUROMA" underneath my scar. He injected in three places along the scar a nerve block, local anesthetic and cortisone. If this doesn't work he wants to surgically go in along the scar, clean it up and scarp the bone. He also changed my med's, off topomax and on neurontin.
The block lasted about 1 hr. I really HURT. I'm seeing him in a month and I'm having the MRI June 15th, so I wait. The MRI will tell us a lot. He also gave me an anti inflammatory but because I have a sulfa allergy the pharmacy couldn't fill it. Tomorrow they will call his office for something else. Tomorrow I will call my GP for an appt to discuss this latest chapter. I have to call work and get some forums filled for STD since I used up all of my sick days, I cannot work in this pain.
Thank you so much my AN friends for your concern. I know I'm in good hands. The first thing I did when I got in was Google NEUROMA and sure enough the pain I'm feeling is the description on the wikipedia site.
Anne Marie
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Oh what a night :'(
I hardly slept because I couldn't lay on my back or on my left side. I'm very sore today and tired. I called work and they are going to pay me STD until the LTD kicks in. I'm so grateful! I cannot work with this pain. I hope the new med's will help me. My operations mgr is being so understanding. Her son was in a work related accident around Christmas and he is suffer from chronic headaches and nerve pain. A bar hit him right above the ear......long story, he delivers furniture for the Brick and a cube van hit the truck while he was unloading and the bar that is in the door was rammed into his head. He is so lucky he wasn't killed. He is having massive headaches and has some facial problems. He is still off work......so because of his struggle she is very sympathetic towards me.
I'm just wondering has anyone on this forum had a neuroma underneath their scar. Nothing is "typical" for me. I'm going to relax now and hopefully snooze on the couch for a bit. Thanks again for all of your encouraging words. We are so lucky to be able to support each other on this forum.
Debbi, I've been to wrapped up in my problems I wish you a speedy full recovery, with no problems.
Nap time my friends.
Anne MArie
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Nanansjoy, I have facial pain. It does not hurt in the morning but by midday from talking I start to have pain on my paralysis side of my cheek. By evening it feels like a vise grip is on my face. If I stay busy I find I don't notice it as much but it is very difficult at times and is something I have just learned to live with. I sure hope yours gets better. I totally understand and it is difficult for folks to understand what kind of pain sensation we are experiencing but it is real! Hang in there, my prayers are with you!
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HUGS Canadian Sister Anne Marie! My heart goes out to you.
Joyce,
I started to get pain just before movement was noticeable. This could be a good sign – believe it or not. The facial muscles have been dormant a while and now they are possibly moving- this is going to hurt at first.
If there is synkinesis happening then you could have motor neurons in the nerve pulling the muscle the opposite directions causing tightness.
This explains that better than I can
http://www.bellspalsy.ws/residual.htm
This explains the House Brackmann scale
http://www.dundee.ac.uk/bells/index_files/hbscale.htm
Can you give us a heads up on more specific details on your case?
• When was surgery?
• Where were you on this House Brackmann scale just after surgery?
• Where are you now on the House Brackmann Scale?
There are exercises and messages you can do but you do not want to start these too soon. You have to have some movement signs first.
Here are some links to help you.
Facial exercises
http://www.bellspalsy.ws/exercise.htm
&
http://www.bellspalsy.org.uk/leaflets.htm
Here is a list of qualified medical centers that can help you with facial issues.
http://www.bellspalsy.ws/centers.htm
If there is not one in your state you could always call here to see who they know of that is closer to you.
Neuromuscular Retraining Clinic
Dept. of Rehabilitation Medicine
University of Wisconsin Hospital and Clinics, Research Park Clinic
Madison, Wisconsin
H. Jacqueline Diels, OT; Facial Rehabilitation Specialist
608-263-7271
(Jackie Diels is highly respected by many AN patients on this forum and she actually trains therapists. She may be able to forward you to someone she knows of in your geographical area)
Have you seen a Ophthalmologist & Oculofacial Plastic Surgeon yet for an exam. Remember that the “e� in ENT does not stand for “eye� and it is best to skip that department and go straight to ophthalmology department. (Specifically a “neuro-ophthalmologist�)
Have you tried either ice or heat on the face?
Heat will relax the muscles. Ice will take down the swelling.
Give us some more specifics and maybe we can help you more...
Daisy Head Mazy
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Daisy Head Mazy,
Thanks for the hugs, I sure you know how much I appreciate them. I had a good nap, mind you dinner wasn't made so its pizza for tonight.
Anne Marie
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First things first, I've never had any facial pain, so maybe the pain you're having is coming from something else - maybe the trigeminal neuralgia Nancy mentioned. I've heard that's very painful. I think I'd go to the doctor to get to the cause of the pain.
And Ann Marie, I had no idea all this was going on either. I'm glad that work is cooperating with you. At least that's one less thing to worry about. I hope you come up with a good solution. And I really hope you can get some sleep! :-[
Lori