ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: InnerGrace on June 23, 2016, 02:26:34 pm
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So.. I know there are several threads on this, but it's easier just to find my own thread. lol I know there are twitches, zaps and the "ant crawling under the skin" feeling....which for a moment in time right after surgery, I felt twitches and ants crawling. But since then, I have felt, hmmm.... how to describe it...lol Right above my eyebrow...I feel like a pulsating ache. Just in one tiny spot... could it be something to be hopeful for? And another feeling I'm getting is like, a pulling or tugging sensation by the corner of my mouth.. however, I don't think anything is actually pulling or tugging. I'm feeling certain things and I don't want to get too hopeful if it's not a part of possible regeneration.....
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My situation is a little different since I had a couple nerve grafts to reanimate my face. However, my first symptom was a "tugging" on the corner of my lip. When I started looking closely in the mirror, I could see small motion in the muscle. Over the next couple weeks I was able to control this muscle. sounds similar to you and you are heading in the right path.
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The pulsing ache in a tiny spot is what my PT called a "trigger point." The ache is the nerve waking up. As the nerve increases function you will feel less of an ache and hopefully movement will not be far behind.
So you know, there are physical therapists that help with facial paralysis, but this fact is not widely known. Even the nurse for my otolaryngologist and surgeon didn't know that there were physical therapists for this - she once told me the only thing that would help is facial reanimation surgery, which, no. Unfortunately, most physical therapy centers do not do this kind of therapy. If you look specifically for a vestibular therapy center, they will be able to either treat facial paralysis or help you find someone who does. I saw you are approximately one month out, which may be too soon to try facial therapy, but I started around 6-8 weeks post surgery. I really hope you will see facial function return sooner than I did, but if you don't see anything for a while there's no reason to give up. I'm a year and a half out and I'm still seeing increased movement from month to month.
As an aside, I really identified with your writing about being out in public for the first time. I went to a library on my first outing and got really tired and dizzy after only 20 minutes. I had more facial drooping than you seem to, but I was helped by cutting my hair into bangs (or fringe) and wearing large sunglasses outside so that my face looked less unusual to casual passers-by. My surgeon recommends men grow beards for the same reason.
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Hi Mar!
I went back and read some of your old posts and you are very encouraging to me! This Monday will be five weeks out and I heard over and over again, that patience is my friend and that the facial nerve is VERY SLOW regenerating.. as all of us who have or are going thru this, it is VERY difficult. I have my good days and bad days... I have a hard time getting my day started when I have to look at my face in the mirror once again... not moved, not changed. I had someone mention to me on my facebook after I posted my profile pic as the current me, that they thought they saw some improvement. I dont' know what they saw, cause as far as I can tell, I am not getting ANY kind of movement, but if I had to make a guess at what might be different, is the tone in my face???? The cheek area seemed to be more gaunt, more skeletal a couple weeks back and it doesn't appear as such now... and my eye seems to not be as wide. It's very frustrating. I get tired quickly of talking.... ... but I often feel that pulsating ache, above my eyebrow and above my lip... I certainly hope you are correct!!!! :D I am waiting for some small movement to move on to a facial therapist. Thru here I've learned of Jackie Diehls an Tessa Hadlock. Wisonsin or Boston..LOL Both are about 9 hours away from me.. but if I cannot find anyone else, I am willing to make that trip. I haven't been really pointed in any real direction for my facial paralysis from my surgeons... as you said, they seem to be kinda in the dark about this kind of therapy. On my two week post op appointment, my neuro was out of the country so I saw one of his colleagues. I asked him what steps I could take down the road for my face and he started rambling off surgeries...and I'm like.. no. I refuse to do any other surgery unless it is life threatening or to eliminate an intolerable pain. But I was referring to facial therapy as I had read about it on here before my surgery.. so I mentioned it to him and he just shook his head... whatever, dude. lol Sometimes I have a feeling of tightness to the side of my mouth...I don't know if that has anything to do with regeneration or if it is because the working side of my mouth is pulling my lips to the good side...so much to wonder and ponder.... But I thank you for your words of encouragement!!!
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Patience is absolutely vital when it comes to facial regeneration. With balance you can work at it hard and you could see tremendous gains quickly, but with the facial (and ocular) nerve you have to let it repair on its own terms. Nerve regeneration is supposed to be 1mm per week. I hope you will see improvements quickly (was the nerve monitored during surgery? was it 'firing' during surgery?) because I have been there and I wouldn't wish facial paralysis on anyone.
Facial tone will improve before movement returns. In my case, I had increased facial drooping the first 3 months and then it started to improve. I noticed that people who hadn't seen me in a while (like my PCP and dentist) noticed improvements first. Like when I went in for a retainer fitting in July and went to pick it up in August, the receptionist said my face was looking a lot better. I would trust the people who don't see your face every day; they'll be able to see differences better than you will. If you are like me, you will be the last person to notice improvement.
I live in Cincinnati. I don't have the means to go to WI or the East Coast for facial rehab, certainly not on a regular basis, but I was able to find physical therapists in my city. I am sure you will be able to as well.
I found this page from UPMC: http://www.upmc.com/Services/ear-nose-throat/services/facial-nerves-and-plastic-surgery/facial-paralysis-center/Pages/default.aspx
so I am surprised that your doctor's office didn't recommend contacting them. Try searching for "city name + vestibular therapy" or 'balance therapy' - this will give you some leads on practitioners who should at least be familiar with acoustic neuromas. If they don't do facial therapy, they'll be able to find someone in your city or at least nearby, who does.
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Just wanted to update! I'm very excited!!! I went to see my opthamologist yesterday in Pittsburgh. I am not entirely sure what has changed in my face.. but when I left the hospital after surgery, I was an HB 6.. I am a 5 now. If I had to make a guess, just the softening of my muscles.. they don't seem to droop like they were in the hospital. She believes that my nerves (around the eye).. are trying to fire up... I asked her if she knew of any facial therapists in the area for the palsy and she said.."Oh my Yes! A very good one!!!"...lol So she wrote me out a script to go see Doctor Todd Henkelmann....:D I go in on the 25th of this month... I'm anxious.. excited.. nervous.. I'm a little afraid of going in there and he tells me there isn't anything going on with my nerves... but I was also told, that if that does happen, it doesn't necessarily mean that nothing ever will.. that it might just be too early.. It's the next step in my AN journey and I'm feeling pretty positive!
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Great news!