ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: HJY on January 22, 2011, 01:23:04 am
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Hi all! I am new here but have been 'lurking' for awhile!! I had a middle fossa approach to remove an AN on December 6th 2010. My balance has been recovering well and they preserved my hearing which is quite reasonable. I've got a horrible high pitched tinnitus and still feel like I'm on a boat most of the time!! I've just hit the six wk mark and have just plummeted because I can't seem to cope with this facial paralysis. I had hoped I'd be showing some improvement by now. My facial nerve was preserved but could only be weakly stimulated at the end of surgery. I was initially drooped but am now symmetrical at rest. You can notice it when I speak and try to smile. My eye is actually almost closing now. I'm a Speech Pathologist, so am finding it really hard hearing my own speech affected! I have had weird twinging sensations and a 'pulling' around my lip area. For some reason despite these signs and the fact the Drs say it will come back, I just can't believe it. Would some of you with similar backgrounds please share your experience with facial nerve recovery? How long did it take and what preceded movement for you? I need some hope here!
Thanks!
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Hi HJY - glad you posted with us here!
I think that the fact that you have gotten so much back so far is a GREAT sign! My face never "came back" at all and at a year I had the 12/7. After being on this Forum, I have, at times, wondered if I did that too soon because many people have regained movement YEARS into their recovery...then I remember that they, like you, improved some in that first year. My face was DEAD and I had NO MOVEMENT at all in that first year. I am a believer that you can't live in the "what if" and I have to remind myself that I did the best that I could at the time, but I also REALLY BELIEVE now that because I had no movement that first year, I wouldn't get any. YOU, however, have made LOTS of progress!! It is easy to get discouraged, but sounds like to me that you are on the right track...& hey, at least people remember your face!! ;)
K ;D
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Hello and the facial paralysis is frustrating. I have NF2 found after my first AN surgery at 49. My first surgery was mid fossa and took 3 1/2 mo to get back to pretty decent amd more over time after that. I am now a retired nurse and was back to work in 2 mos and was not fun to not look right. My co workers were wonderful in being around me. 5 yrs later I had a facial neuroma with nerve graft done at same time and then was told it would 8 mos for movement to start. I do not have full movement but did end up with an ok look at rest. I hate to say this but I do not remember exactly how it did feel as it came back. The nerves can be very slow to heal. Some facial therapists do not want to do much till almost a year after surgery to see how the nerves are doing. Sounds like you are making a slow progression of the nerves and will be back to normal or close to normal in time. The wait is hard so don't give up! You are still not that long past surgery even though it feels like it should be. This is a slow recovery and was major brain surgery! Being able to vent here does help!
Cheryl R
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Hi HJY,
I think it was right about 6-8 weeks post when I realized I could create a twitch in my cheek. Another six weeks and I was at 80% of function or better. Typically only professionals or folks with similar issues notice any difference now. My wife was driving us down to our son's college to watch him play baseball. It is about a 4 hour drive and all I could do was sit (I had very limited ability to speak) and try to move my face. All of a sudden, there it was, a little twitch. It took about 15 minutes until I could do it again. I was able to do it 4 or 5 times that time. I pulled the vanity mirror down and was able to see something happen. It wasn't much, but it happened. After that, it moved faster. I still only have about 90% of full function, but that 10% is so minor to me, especially with ongoing speech and swallowing problems, but everything continues to improve.
I'm with Kaybo, I think that you have so much improvement already is a really good sign. There is a tremendous difference between drooping and symmetrical at rest.
Be patient...it sounds like you are on the way! Almost a year out, I still suffer from the pulling sensations. I think these are the result of the affected areas simply working a bit harder.
-Tod
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Hey i feel like i was in the same situation about a year ago.. My facial nerve was testest at the end of myt AN surgery but after 8mouths I kinda gave up that it was gonna come back on its own. I found out that iven though it was still entact it lost blood supply..which i didnt know know could happend. I mean I dont know ur situation and hope u get imporovment sooon :) but for me I decied to have surgery for my facial paralysis 10 mouths after my AN surgery. And now pationtly waiting for movement. I would keep your hopes up but at the same time education urself if you think you want to do some kind of surgery or rehab Good luck its only been a small time for you..the harderst part is knowing that this is a process .
Kim
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HJY,
Initially I was told that my facial nerve was abraded and I had facial paralysis. I got symmetry about 6 months after the surgery. I asked for the surgery report that said that my facial nerve had been transsected and approximatey put back together with surgery wax. I am slowly getting movement back at only 8 months. Hang in there. Any movement in less than a year is positive. Keep healing! :)
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I was told after surgery that my facial nerve was intact, but it felt like ages as months went by and no movement. At the 6 month mark my neurosurgeon suggested we consider nerve grafts, but my ENT suggested we wait. I got first signs of movement 9 months post surgery. I was finally able to fully close my eye bad. But it didn't close tightly. It would close 85%. Then slowly fall to complete closure. I'm currently 17 months out. My face has dramatically improved. I can wink and my smile is at 50%. But not back not normal. Its been a process and does require lots of patience. Good luck on your recovery! Keep your head up!
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Hi HJY.
As you can see from the great responses you've already gotten, this whole nerve healing thing requires a lot of patience....which is something some of us (me) don't have a lot of. ::)
I can imagine how much harder it is for you to hear your speech not sounding quite right. I was very aware of my speech too. Turns out, I was the only one who noticed anything different. I will say, you are still in the early stages of recovery and you have a lot of healing to do. I'm sure, like mine did, it will get better. My facial nerve did not start working on its own after my surgery and at 18 months post op I had the 7/12 nerve graft. In that period of time between the initial surgery and the graft, my speech did get back to normal, even without the functioning facial nerve. Somehow you find a way to get your body to cooperate with your wishes. Be patient with yourself. It sounds like you're already making progress...slow and steady!
Lori
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Hi HJY
I know exactly what you are going through. It is very frustrating. I had translab surgery 2007. You are doing so well. I think it was about 9/10 months until I noticed any Imprrovement.
I used a device called Neuro 4 under direction of physiotherapist 4 months post surgery. It was very good if a little tiresome. Lots of patience required here. When I was told that I wanted to kill someone. Doing ok now. When my Dr told me the nerve was as good as it was going to get I got botox to help and it is great. By the way my nerve was not severed just severely stretched and root of tumor remains so am I suppose watch and wait now. Good luck to you. Thoughts and prayers with you. Keep us posted.
Annx
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HJY,
Great posts from everyone. Just wanted to welcome you to the forum.
As stated many times, your surgery was in Dec, and you are already seeing good progress! Really that is big progress, compared to other stories.
Understand the frustration of being speech pathologist, and working with the facial regression, soon to be progression.
I'm a home health nurse. Had my eye half stitched shut post op due to facial nerve cut :( but continued to work very part time. Patients were very receptive to the fact that I was even working!
So be an example of perseverance to your patients, they may appreciate it:)
Good luck, let us know how things continue to improve.
Maureen
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HJY -- For me it was 6 months post op that I started to see some movement-- It was tiny but it was there-- Looking back at pictures around that time frame my face was still sagging. Now my face is perfect in resting position-- Smile at about 75% complete with some synkenisis. I have been seeing Wanda Crook and will start botox in March! This should help my smile greatly! Very stoked!
DG
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I had my surgery in August 2010 and I started to see some movement in 6 weeks. Since then I had gone for accupuncture sessions and I think they are helping expedite the movement.
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My nerve response was good after surgery but a few days after my face was drooping, no smile, couldn't close my eye. Things slowly got better though. I was able to close my eye about 3 months after surgery (very important to me as a surfer), most of my smile came back around the same time. At rest my face is fairly symmetrical, slightly noticeable around my eye at rest and my smile is lopsided. I did develop some synkinesis...I cry when i eat...especially spicy foods...and my nose tends to run. in the grand scheme of things these are minor annoyances...i've been very fortunate.
Your mileage will vary...every recovery is different.
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Thank you so much everyone! And sorry it's taken so long to reply - I forgot my username and my password!!! I have got a tiny twitch!! It's in my lower lip/cheek area. Also feeling some slight tugging in my cheek area when i try to smile. Still no actual movement of my lips though. I can purposefully move the area with the twitch and when pursing my lips I can see and feelore movement on my AN side. One thing that got me worried was the Physio said that movement is normally seen first in the middle region of the face (nose and top lip) and it may mean that branch was more damaged? Has anyone else had first movement on the lower lip and still gotten good recovery elsewhere?
Thanks so much everyone for your support!
Take care,
Heather
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Heather,
That is encouraging news! Keep looking for the small signs of progression. That is how it works.
I don't have any personal experience in the movement category, since my facial nerve was so stubborn in recovering. (cut,directly reattached during brain surgery- minimal results)
Any movement is a good sign in my mind, but maybe others will chime in. Keep looking at yourself in the mirror and practice pursing your lips and moving your mouth gently. My advice is don't try to force it too much because of the synkenesis phenomenon that can occur post op.
Cheers :D
Maureen
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Hi,
I got movement back first for cheek and nose. They are not complete yet but has gradual and significant recovery constantly.
My other areas are indeed weaker compared to the cheek and nose. But I believe it's because the nerves to those areas are longer and it doesn't mean that recovery will be bad. My recovery begins with twitching and some ant-crawling sensation beneath my skin too. As of now, my chin,lips and neck are just beginning to feel those sensation. I believe it's a good sign as I expect recovery pattern to be similar to my cheek recovery.
For timeline guide, my first sign of recovery happen at around 3-4 months post op.
At around 6 months, my chin start feeling more twitches. My eye can now blink further but there's still a tiny gap when closed. I can raise my forehead a little so that I look more alert but my brows are still weak. My smile is a lot more natural. Could see the smile lines at the chin to the lips coming back. But kinda look like broken lines haha. I am short of showing 1 tooth to achieve a complete symmetrical smile.
I am now 7-8 months post op.
Be patient and keep the motivation going!
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I had my AN removed in July of 2004. I had a translab. for 2.5cm tumor. After surgery, I had no movement and was told I would regain movement, my facial nerve was intact. I started to regain movement about 6 months following surgery. It started out as a little sensation/twitch around my naso-labial fold (crease in area next to nose). I was not able to blink following surgery and my blink came back about the same time. It was a gradual process. At rest, you don't notice a difference, but when I smile, you can see I have some weakness around my lips on my AN side. My blink is not as quick as my good eye, but at least I can blink and close my eye when I sleep.
Just hang in there and be positive. I too, was very frustrated after surgery, because I had no movement. Another thought is to find an occupational therapist to work with. They may be able to give you some advice and therapy to help regain movement.
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I had first movement at the corner of my mouth. That was 7 years ago and it is still recovering. The biggest thing I've gained from my AN journey is patience. Facial nerve recovery is all about patience.
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Hello HJY and welcome to the AN family! May I ask what the size of your AN was? I had mine removed by translab in April of 2009 (4 cm) and my face had no movement at all right after surgery and appeared to droop . Also I could not close my eye and ended up having to get a gold weight implant. I recommend doing facial exercises...daily. You can pm me and I will tell you the ones that I do. I take pictures of myself once a month...and then look at them to see if I notice any changes. In August of 2010 I was taking my picture and I was practicing smiling in the mirror and that was the first day I noticed the first movement! I was estatic!!! It was the smallest movement in the corner of my mouth but it moved! I always worry about what people are going to think of the appearance of my face but I am my worst critic. I recently met ChristineH from this site just before her surgery. Her husband and her both said the only thing they could notice is that my left eye is not as opened as the right eye. So for me...I believe the exercises have helped...even doing exercises for the rest of your body does stimulate those facial nerves too. I remember being discouraged as you are but don't give up hope. Things will improve, just takes time...it will happen. Keep us posted. :)
God Bless,
Laura Lynn