ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: mar on February 04, 2016, 09:03:49 am
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This is all very personal for me, but I'm posting it because I didn't see any posts talking about facial nerve self-healing. I promised myself if I ever got movement back, I would write something myself.
I'm warning you now, this is a very long post. It was a year in the making. I waited a year because I saw a lot of people write in when they had issues and use the forums less as the paralysis healed. Which is an impulse I definitely understand but I wish I'd had some idea what to expect.
Exactly one year ago today, I went in for my AN removal surgery. I am a 28 y.o. female who when to an ENT last year with hearing loss and tinnitus. An MRI confirmed the presence of a unilateral AN, right side. My tumor was 4.6cmx2.5cm. My surgeons were able to remove it without severing any other nerves. Although my facial nerve was firing during surgery, I woke up with right-side facial paralysis, double vision, and of course extreme dizziness and headaches.
Over the last year, I've kept a physical and electronic journal as well as lots and lots of pictures. I'm sharing my experience under facial issues because that's the biggest part of my story.
2/4/15 - Surgery
2/8/15 - Released from hospital. The only muscle on the right side of my face I can control is my eyelid. There is visible sclera when I try to close it.
My notes about this time were mostly me worrying so I'll spare you. One thing that surprised me about my surgery was how sore I was the next few weeks. You are restrained on a table for 12-13 hours and I woke up with huge softball sized bruises on my left hip, thigh, and shoulder.
2/11/15 - Began what would become three months of balance physical therapy. At this point I could not bend over, turn my head (except 90 deg to the left), or stand for more than 20 minutes at a time.
3/20/15 - Fitted for prisms. Before this I wore a black eye patch. The prisms felt a LOT more normal.
3/23/15 - Begin facial rehab. 22/100 right side. Daily massage to release "trigger points."
4/7/15 - Return to research and classes.
4/13/15 - Journal entry: "Dizziness 6/10. Mood: OK ... meh."
4/22/15 - 44/100 right side. I ended balance rehabilitation around this point. I started using the gym and resuming normal activities around this point. The best way to maintain balance gains is to keep active so I was trying really hard to do so.
5/15/15 - 51/100. Begin 2x daily facial exercises in front of a mirror.
5/22/15 - My double vision cleared up a lot at this point. My doctor has me remove the prisms (they're stick on) but I keep them in my wallet for another month. Just in case. I haven't worn them since.
7/30/15 - Get fitted for a dental retainer to stop biting my cheek at night. I have been very dilligent about teeth care since I heard acoustic neuroma patients have difficulties with oral health, but overall I've had good luck here.
Just a note here: July was the worst month of 2015 for me. The friends I had who were concerned initially stopped calling around this point. I have spent five months without seeing facial improvement at this point. Just all around hopeless and depressed. I had to go off my previous insurance in June and I didn't have facial rehab between May and August.
8/11/15 - Begin seeing a new facial rehab therapist. She does things a little differently, using acupuncture and massage rather than having me try to move my face and rating it.
8/13/15 - The dental receptionist said she noticed my face is looking a lot better. I think I began to see more facial tone around this point.
8/16/15 - I SEE A TWITCH. The corner of my mouth moves ever so slightly when I really try.
Also of note: I left the US for the last two weeks of August. I didn't have much vertigo but I used the scopalamine patch. The big thing was my eye dried out. I had stopped using the RepHresh ointment regularly in April but I needed it in the cabin. My right ear still pops which I thought was weird.
8/29/15 - Journal excerpt: "I keep dreaming I have my old face and sometimes in that place between sleeping and awake I could swear I'm moving my face normally."
9/5/15 - My 'smile' goes all the way to my eyelid. That is, my right eye gets more squinty when I smile.
9/9/15 - My new PT wants to see me twice weekly for acupuncture and massage. My new insurance plan approves 30 visits/year and maybe it will help. Although it would be nice to have the same metric to track, it kind of works out because I like this lady a lot more than my previous PT.
9/24/15 - Was talking to my brother and he interrupted me to say "your face is moving!"
9/27/15 - I noticed my right dimple is back. Can see right incisor when I grin.
10/18/15 - I can operate muscles near my nose. (The snarling muscles)
11/10/15 - Eyelid weight placed. 0.6g Pt. I was a little nervous about this surgery but I am really glad I did it.
12/27/15 - Journal excerpt: "I get what they mean by "reflexive smile" now. I am capable of smiling now but after more than ten months, my own smile is a stranger to me."
1/17/16 - I can flare my nostril now. It's not symmetrical but I haven't been able to do that movement since my surgery.
1/22/16 - When I grin you can see a hint of my canine tooth.
I still see improvements from week to week and I am still getting back new muscles. I have heard a lot of depressing things when I was in recovery (like that what you see at 6mo. or 12mo. is the full extent of what you get back) and I wanted to write this to give the message that every case is unique. I didn't see any movement until I was more than 7 months out. I was expecting movement around my nose muscle to show up first, instead my cheek muscles came back first.
I'll check my messages semi-regularly if you want to talk. Thanks for reading this far.
-mar
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Good post, Mar.
Will be especially helpful and informative to those coming out of surgery with temporary facial paralysis letting them know there is optimism for movement with patience and time.
Good luck to you for continued improvement.
Jane
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Nice to know , that every patient can be the same but with different times in his things change for the better, do u think acupuncture has helped? I am 18 months post my AN surgery?
Feline
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Thank you very much @alabamajane.
Nice to know , that every patient can be the same but with different times in his things change for the better, do u think acupuncture has helped? I am 18 months post my AN surgery?
Feline
I think massage helps more than acupuncture, to be perfectly honest. There's also a type of acupuncture where the needles are hooked up to an electrode, and I did NOT use that type. Acupuncture might help stimulate blood flow to the affected area and it's relaxing but I'm not sure what, if any, hard data exists for it. I am glad my new insurance plan covers it though!
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I agree too Mar that the light massage of area is most helpful. I felt like not only did it feel good but "reminded " the nerves/muscles what to do. Nothing too aggressive. I did not try acupuncture though. My Dr did mention NO electrical stimulation early on especially. That can lead to synkinesis or improper movements.
I'd be interested in knowing how you think acupuncture does. I have had it on a different part of my body with the little stimulation needles and sure wouldn't want that on my face,,, :-*
Hope you post how it goes. Good luck,,,,
Jane
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I agree too Mar that the light massage of area is most helpful. I felt like not only did it feel good but "reminded " the nerves/muscles what to do. Nothing too aggressive. I did not try acupuncture though. My Dr did mention NO electrical stimulation early on especially. That can lead to synkinesis or improper movements.
I'd be interested in knowing how you think acupuncture does. I have had it on a different part of my body with the little stimulation needles and sure wouldn't want that on my face,,, :-*
Hope you post how it goes. Good luck,,,,
Jane
One thing I find it helps with is facial numbness. I had some spots in my lower right cheek and chin that were less sensitive and I think acupuncture helped me get some feeling back. It also helped around my scar area. I had the retrosigmoidal approach and have a very large scar on the back of my head. Acupuncture helped with tenderness and reducing keloid formation.
I am lucky not to have issues with synkinesis or involuntary facial spasms (so far). I would recommend acupuncture if it's an affordable option, or if health benefits cover it. I admit some of the benefit is psychological; taking an hour a week just to relax and focus on your healing is beneficial by itself.
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Dear mar,
That's an encouraging note (I think). I'm about 4 weeks removed from my surgery to remove Large AN and I have significant facial paralysis on the right side (I'm a 5 on the "scale"). Eyelid is unresponsive, right side of mouth is droopy, nostril definitely not flaring.
The nerve was not severed, just damaged by the tumor and the doctor thinks I'll regain this movement eventually. He wrote me a script for PT after I asked him about E-Stim. The last few weeks, I had a home based Speech Therapist using what she called the Bobath technique....icing, message, exercises...but she also suggests that E-Stim might be appropriate. I'm going to give this therapy a shot starting next week.
Reading your note...and seeing the response of others, makes me realize that time and patience are common denominators in the facial nerve self-healing process. Any other thoughts on E-Stim vs. massaging as a means to help it along?
Regards,
Deke Lincoln
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Every patient is different what works for one may not work for the other , good luck whatever works. Has anyone had the tongue nerve grsft tongue to help with facial paralysis ? If so, do u feel I made the right choice?
Feline
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Feline,
I had the " 12/7" hypoglossal nerve anastomoses,, nerve graft,, 4 days after my AN surgery in 2011. I am very happy with the results. I have good muscle tone on AN side of face, eye closes well ( I did have a gold weight in eyelid for the first year), and "resting face" looks pretty symmetrical.
I have a decent smile, although not a good open mouth smile. There are other surgeries I could have to obtain better smile, like the gracilis free flap surgery that Dr Tessa Hadlock from MA ear and eye hospital is known for,, but have not been interested in pursuing it.
I have no regrets though as I'm sure I have a better facial tone and movement than I would have had without the graft.
Good luck,,
Jane
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Thank you for ur response, see the nerve graft would be about 20-23 months from the neuroma being removed, so really do u think it would still work?
Feline
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Feline,
That would definitely be something to ask your Dr as my answer would just be my non-medical advice,,,
But my nerve was severed so my Dr said the best time to reconnect mine would be immediately so the nerve endings would not die, for lack of better word,,,, so that's why I had mine done while still in hospital. I'm not sure if your nerve was severed or still intact,, if it's intact,, I'm not sure how Dr would determine whether to do it or not,,,
I would just ask him/her,,,it won't hurt to find out if there is still a chance for improvement.
Good luck, let me know what you find out,, I hope you can still get improvement
Jane
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He claims it would be a 25 percent chance that the graft will help, not good odds right?
Feline
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Feline,
Probably not the odds you would want,, but I guess it depends on if you want to try something at this point that may help some. I'm not sure what else would help any,, did he have any over suggestions for your situation ??
I was afraid the further out from surgery you are, the less likely that it would be successful,,,
25% is better than none perhaps,,,,,,that would be up to you,,,
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Dear mar,
That's an encouraging note (I think). I'm about 4 weeks removed from my surgery to remove Large AN and I have significant facial paralysis on the right side (I'm a 5 on the "scale"). Eyelid is unresponsive, right side of mouth is droopy, nostril definitely not flaring.
The nerve was not severed, just damaged by the tumor and the doctor thinks I'll regain this movement eventually. He wrote me a script for PT after I asked him about E-Stim. The last few weeks, I had a home based Speech Therapist using what she called the Bobath technique....icing, message, exercises...but she also suggests that E-Stim might be appropriate. I'm going to give this therapy a shot starting next week.
Reading your note...and seeing the response of others, makes me realize that time and patience are common denominators in the facial nerve self-healing process. Any other thoughts on E-Stim vs. massaging as a means to help it along?
Regards,
Deke Lincoln
I looked into electrical stimulation when I was researching options for facial nerve recovery. I couldn't find any good evidence that it was helpful, but I also couldn't find any good evidence to back up claims that it harms recovery. If your physical therapist has a lot of experience with acoustic neuroma patients, their opinion certainly holds more weight than mine.
Also, if you are receiving e-stim, I don't think it precludes you from getting massage or doing self massage. I still spend 20 minutes every day massaging my face and doing my exercises, even when I see my PT.
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Some updates:
-I can see slight movement in my right eyebrow. This is accompanied by synkinesis with the right corner of my mouth. My goal is to break the synkinesis with facial exercises, but this is pretty tough.
-In the last month (more than a year and a half out from surgery, by the way) I noticed increased movement in my lower lip and chin.
- I still have ongoing headaches. These were diagnosed as occipital neuralgia and did not start until over a year after my surgery. My surgeon doesn't believe it's related to my surgery, but I do. I would say the headaches were worse after my surgery, and got less intense over three months. Then, more than a year after surgery, I began to have increased headaches. It might be related to increased activity, but I have the headaches even when I'm taking it easy at home. Since it's not related to facial issues, I'll leave it brief but I thought it would be better to mention that this is ongoing.
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Just wondering about the massage. Who did it? You or therapist? If therapist, what specialty? I live in Canada and haven't received much advice in terms of exercises or therapies to try on my face.
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Just wondering about the massage. Who did it? You or therapist? If therapist, what specialty? I live in Canada and haven't received much advice in terms of exercises or therapies to try on my face.
Both myself and my therapist did facial massage. When I began to see improvements, I went in for once a week facial massage, and self-massage two to three times a day. Since then I have stopped seeing this therapist and have continued with self massage once a day.
Unfortunately, physical therapists who specialize in vestibular therapy and facial function are not common. They're out there, though.
Personally I just called every physical therapy center in my city until I found someone who specializes in the type of physical therapy I need. Unfortunately, there are only three people in my city who do PT work for facial palsy and none of them take my insurance. I pay out of pocket to see PT since last May.
As a general update, my facial function is now rated at 94/100 and I no longer required PT for my face. Most people cannot tell that I have anything wrong with my face, though I do still have some asymmetry. I am just over two years out from surgery at this point. I do have other issues relating to the AN but those mostly concern headaches and occipital neuralgia. I also have facial pain sometimes because the muscles on my right side jaw and tense up for no reason. These things, according to my PT and surgeons, are totally normal. After 7 months of seeing no movement whatsoever, these are not terrible problems to have.
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Your post has given me hope! Thank you!
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I know it was very difficult to find a facial therapist. But finally did. Slight very slight improvement I'm going to try massage next. Do you have a website for the massage instructions? Thanks much, Joan
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MAR, THANK you for your post. How does accupuncture help with reduce keloid formation . I m 10 months post translab. I am not sure but it seems theres a portion with keloid. I am applying silicone gel. I will try silicone sheet if it helps. Just too hot right now to try sheet. but I have never heard about acupuncture helping keloid. I have keloid growing up , since teen years. I am now in my 50's.
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I know it was very difficult to find a facial therapist. But finally did. Slight very slight improvement I'm going to try massage next. Do you have a website for the massage instructions? Thanks much, Joan
I found the exact map given to me by my therapist on pinterest: https://i.pinimg.com/originals/05/29/a8/0529a868922fa8eadc8ea119d9237963.jpg
To do the massage I highly recommend seeing a therapist who can help you, but if you truly do not have one available, using your facial lotion and using medium to light pressure, rub it into your affected side by tracing the nerves with your opposite side hand's fingertips. If you come to a narrow area like the side of your nose, use 1 or 2 fingers, and for a broad area like the cheek or forehead, use three fingertips. Go slowly as possible and get a feel for how your muscles react.
If you come to a spot where you feel pain, simply hold your fingers there for a few seconds or until the pain diminishes. Do not press too hard. It isn't more effective with higher pressure. If your face starts to get puffy or red you are pressing too hard.
Another small thing that helps is to try to eat mostly with your paralyzed side of your face. If you can still swallow and move your jaw it gives your muscles a chance to move.
MAR, THANK you for your post. How does accupuncture help with reduce keloid formation . I m 10 months post translab. I am not sure but it seems theres a portion with keloid. I am applying silicone gel. I will try silicone sheet if it helps. Just too hot right now to try sheet. but I have never heard about acupuncture helping keloid. I have keloid growing up , since teen years. I am now in my 50's.
Acupuncture did not stop keloid formation for me. I have a large scar going down the back of my neck and a smaller scar behind my ear. Due to the surgical site being on the back of my head (rs), it is hidden by my hair and glasses.
As an aside, if you have questions you would like to ask me, you can send me a private message. I get alerts to my email account when I get a private message and can respond more quickly.
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Just wanted to keep this post current. It’s hard to find good info, especially by folks going thru it. I just had surgery on 12/11/20. I’m one month in and just starting facial therapy this week (consisting of about 8 exercises 5x a day to try to trigger reactions in front of a mirror). My pt told me stim therapy was not an option (they try not to use that anymore) as they’ve determined it’s better to have your nerves trigger on memories and movement than faking/forcing it. I will start cranial massage therapy in 2 weeks (my scar isn’t quite healed enough). I start balance therapy in 2 weeks. I was wondering about acupuncture and trying to find info on that and came across this post. I’ve been getting a little down bc of progress so this really helped me understand this isn’t happening in a couple weeks or even months. This is a long term healing solution and I need to be patient so thanks to all who had posted!! Good luck to all and keep the faith and positive vibes. It WILL happen.
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Bre - I hope you have made some progress in these past months since your post. I agree that some older posts are hard to dig up but hold a wealth of information. When I signed up for the forum 7 years ago there wasn't as much available on the web, so member communication was vital.
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I would like to thank you for sharing such detailed notes and showing the patients we need to have for progress with the facial nerve. I am three weeks postop and really appreciate seeing someone in their story. Thank you.