ANA Discussion Forum
General Category => AN Issues => Topic started by: Johno on April 17, 2009, 01:49:28 am
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Hi,
Its been months since I have been on this board and now I'm back because its a good place to get advice and questions answered.
I had a 5cm AN removed in late 2007 and have pretty much recovered 100% from it.
The only remaining issue is almost total loss of facial movement on the right side. The nerve was kept intact but badly bruised and stretched. I had a follow up MRI early this year and was given the all clear. On discussion with my GP and Surgeon I was told that the facial nerve might take years to repair if at all and went so far as to recommend cosmetic surgery. I'm not fussed with the Pirate Leer but I'm over having a perpetually dry and sore right eye from not being able to blink fully. It would also be nice to have some symmetry back.
A friend of mine at work is a qualified practitioner of traditional Chinese medicine and told me acupuncture is used on stroke victims to alleviate facial palsy. I checked the literature and sure enough it is used with high success rate to address internal imbalances causing bells palsy and stroke palsy. I could find nothing on treatment of facial nerve damaged during AN removal. Being a form of trauma I'm not too sure if acupuncture may help, neither is my friend.
Has anyone here tried acupuncture post AN removal to repair damage to facial nerve and restore function and movement? If so I would love to hear from you.
Cheers
Johno
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Johno,
I am just nine days post-op and have your same concerns. Probably, being female, I am little more worried about the pirate leer.
I was told that I had good facial nerve response immediately post-op, but the next morning and hence no movement on right side.
The eye issues and facial muscle function issues are annoying to me, the asymmetry to everyone else.
The surgeons anticipate full recovery. I am not so sure.
I just want to be on this thread for any updates.
Sorry to not be of assistance, but thank you for posting the question.
Nancy
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gloria on the site used acupuncture she looks great, i had a 5cm AN removed over 2 years ago , and i am just seeing big changes now so hang on in there.
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Johno, Are you keeping some good heavy type eye drops in and a heavier gel at night? There should be little soreness if keep it lubricated well. You may well be but we like to keep everyone reminded of the importance of it.
Cheryl R
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Nancy, hang in there with the face. The odds are you will be having improvement in the face. I was 3 1/2 mos with my 2001 surgery to get improvement. The facial muscles will work once the nerve heals. That takes time. Facial muscles are not like regular muscles and will not atrophy from non use. The facial therapist who will speak at the symposium in most cases wants to wait till a year past surgery to see a person and one has a better idea of how the nerve is doing. It is frustrating to want it back right now and poor face doesn't quite get it. LOL!
You have done very well so far! Oh and once you are off the steroids you may still take some time to come off the effects. I remember even with just hospital IV ones I had some sleep problems for a while once home.
Cheryl R
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Cheryl,
Thanks for the sigh of relief.
Nancy
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Johno:
Welcome back! Congratulations on your recovery, although I can readily understand your desire to alleviate your remaining facial complications. Who wouldn't? I'm not a doctor and have no experience with acupuncture but unless it has some harmful side-effect or could possibly damage the facial nerves, I see no reason not to pursue this avenue of healing. I suggest checking with your surgeon first, but, aside from the common medical community disdain for 'alternative' methods of treatment for conditions they cannot repair, acupuncture appears to be a viable method of attempting to bring your face back to it's normal function. In short: it's worth a shot. Of course, this is simply a personal opinion. If you do try it, I hope it works for you.
Jim
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I just had my 3rd accupuncture session yesterday to treat my paralysis from having my facial nerve cut and grafted. I'm seeing improvements already--my eye is closing easier, it's easier to chew on my bad side and my mouth is now level. I just had surgery in november 08, and was seeing some improvement, but it wasn't fast enough to suit me. I love the tingles I get while the needles are in and for a few hours after. Makes me feel like I'm accomplishing something. <grin>
As a bonus, my BAHA site that wouldn't heal, is now healed. :-)
Vonda
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That is wonderful news that acupuncture is helping, please if anyone else is having success, please share. The last two days I have been waking up with pain in my face and head aches-haven't had headaches in the past. My paralysis seems different this week and I can't really tell what is going on. I am almost three years since my surgery and really want to do something to help the pain I experience from paralysis not to mention not having a normal smile.
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Thanks everyone for the replies and feedback. I have done a search on this site and found a few references to use of acupuncture and all of them sound positive. I've used acupuncture for lower back pain and found it helped. I will definately give it a go for facial paralysis and keep this site informed as to my progress.
:)
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well my facial tick is on rt side. same as AN was. i have talked with 2 Dr.s about a small botox injection to life my skin and muscles UP about 1/4 to 1/2 inch since it affects my breathing and my rt eye.
the rt eye cant wink. doesn't blink like my normal eye and as such is out of focus most times.
Botox could tighten up all this for 3 to 6 months im told.
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Johno -
I'm with Jim - you'll never know until you try - and Vonda's success just cements my answer. Go for it and see what happens.
And, please, report back to the forum as this will be very helpful for others in your situation.
Mind if I ask, have you considered any type of surgery - like T3 or 7/12 jump? I know that surgery of any kind is a big decision, but those on the forum who've had these surgeries have gotten very good results.
Jan
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Hi Jan,
My ENT surgeon did mention it. But after the AN removal followed by pneumonia followed by a CSF leak followed by more surgery followed by meningitis scare and more misery I'm staying well clear of surgery unless its life or death.
I've read in journals about AN getting treated using traditional chinese medicine with hearing restored. I'm not peddling it or saying dismiss western methods. I think in my case with a 5cm tumour pressing on the brain stem my only option was surgery at the time. Now I'm 18 months post op, I avoid photos and social gatherings not to mention the headaches and dull ache during humid weather and constant eye soreness. Surgeons will tell me they can fix it with surgery, a chinese healer will tell me he can heal it with a round of acupuncture and herbs. If its the same outcome with near equal odds of success I'll pick the non-invasive treatment anytime.
My thoughts only. Jim is absolutely right, whatever treatment you choose always do the research and speak to your Doctor,
Kind Regards
Johno
:)
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Hi Johno,
I say go for the acupuncture. Less invasive, no surgery. If that doesn't work, there's always Electrical Stimulation or surgery.
I had face nerve cut during surgery to get AN completely out. So yea, I know- dealing with the pirate face, not being able to close my eye. Left side of my mouth won't budge.
I DO have the weight in the left eye lid to help shut it. Do you have a weight in your eyelid?
I had a nerve transposition surgery 15 months ago with just some results, not enough. (I believe the window time for that surgery is -18 months post brain surgery.) They go in under the jaw. No brain surgery. Easy to recuperate too, but mine did take 6 hours. It is the 12/7. They take part of the tongue nerve (12) and graft it to your face nerve (7).
Lori had good results with that surgery.
Good luck with what you decide. Keep us informed :)
Maureen
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hi johno and (everyone else) - i am 2.5 yrs post surgery and GK for removal of a large AN and cyst. I don't often post or even visit the boards anymore, but I happened to see your post and wanted to weigh in with my experience. I think I may have posted this before, so you may have found something I've posted about this before, but anyways.....about 6 months after GK, I felt like I was still having a really hard time, mostly due to some extra courses of Decadron (steroid) that i had to take. A friend who used acupuncture for infertility suggested I go to her acupuncturist, so I did. 2 years later I still go once a month. My insurance doesn't pay, and we've been through some unemployment in my household recently, so I reevaluate whether or not I should go every month (it's $60 a pop), and so far I've felt very strongly that it's worth it. I was still recovering from some swelling around my facial nerve from GK when I first had treatment, but after two rounds (I think I went once a week for about the first month) I had a dream I could wink my AN side eye independent of the other side, and when I woke up, I could. I am not saying this was directly related to the acupuncture, it very well could have been the normal passing of time, and I certainly don't hold it out to be the magical cure, but, who knows. In any case, I look forward to my monthly session, if for nothing else, the relaxation. I am a pretty cynical person, and I am very much a true supporter of acupuncture. I still have reduced movement, but it was improved much over the last two years, as my surgeon assured me it would. Hang in there. I know it's a tough road :) Feel free to PM me if you want to discuss it any further.
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Hi Jan,
My ENT surgeon did mention it. But after the AN removal followed by pneumonia followed by a CSF leak followed by more surgery followed by meningitis scare and more misery I'm staying well clear of surgery unless its life or death.
I totally understand that reasoning, Johno. Just wanted to make sure you knew there were options out there.
I'm still learning the ins and outs - and options - of facial paralysis from the others on this forum.
Thanks,
Jan
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Thanks Jan,
I will give it go and let everyone know how its going.
I never knew, untill a friend pointed it recently, that Prime Minister Jean Chretien of Candada suffered bells palsy and did very well to hide his one side facial paralysis. His opposers used it in political smear campaigns in 1993 to their own undoing as the voter backlash against the conservatives bought Chretien back to power.
I get people stare and kids ask whats wrong with my face. Have a real aversion to photos. I'm not a rooster that looks at the mirror a lot or worries about my appearance. Having a pirate leer probably helps me fit in with some of the rough diamonds I work with in the mining industry in the outback of Australia.
I'd like to drink a beer without having half of it dribble down my face, give a cheesy grin to a camera and blow a balloon for my kids (which I can't do). Talk to some stranger without them looking back with that "whats wrong with his face" look.
18 months ago I was glad to be out of the woods now it'd be nice to put this behind us as well and drink a beer without looking like I've already had a dozen!
Johno ;D
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I'd like to drink a beer without having half of it dribble down my face, give a cheesy grin to a camera and blow a balloon for my kids (which I can't do). Talk to some stranger without them looking back with that "whats wrong with his face" look.
18 months ago I was glad to be out of the woods now it'd be nice to put this behind us as well and drink a beer without looking like I've already had a dozen!
Yes I know what you mean!!!!. And we women are so much more aware of our FACE- so that's why I'm determined to get as much function back as possible.
I'm fortunate that I don't have to work full time, (I prefer very part time, and have hubby do the rest :)). So I have more time on my hands to work through all this.
Good luck.
That's why this forum is so great. We know what you're feeling!!!!!! It's good to vent. >:(
Maureen :-\
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Hi Everyone,
I started acupuncture to treat my facial palsy two weeks ago and got my second treatment today.
I've chosen a traditional practitioner. The initial visit was a consultation. I didn’t have to give her a medical briefing. Once I had opened my mouth she knew what was going on. Visible cue help identify blocked channels and flows of energy caused by imbalances and trauma and that’s what she was looking for. Acoustic neuroma meant nothing to this Chinese Lady; she could see where the damage was and knew which points to target. I know nothing about the physiology of acupuncture so I can't tell how placing needles into certain point helps. I got about 30 needles stuck into my right foot, right leg, stomach, right side of the face and behind the right ear as well as both hands and arms. A heat lamp was placed over my abdomen and I drifted off and almost fell asleep. No pain, after about 10 minutes comes a pleasant feeling of warmth they call arrival of Chi. My face twitched a few times as did my right nostril, something that has not happened since before the surgery. The entire experience is not unpleasant.
Since starting two weeks ago I have felt a noticeable difference. I seldom need the eye drops and have felt a return of function. Friends and family have noticed the difference. I started a photo record showing a "smile" on day one and will take another one tomorrow to compare. The only draw back is frequency of treatment and early intervention. If I knew after the surgery what I know now I would have started this straight away and gone every week till full function returned. Leaving it for 18 months reduces the chance of full recovery. Fortunately the Medic at work is qualified in traditional Chinese medicine and is getting the points from my practitioner so he can treat me while I am at work on a remote mine site.
I'll say one thing about acupuncture: I'm convinced it works. The restored function and sensation felt in the face is one thing. I get involuntary movement on the right side of my nose now which never occurred before. Like the nerve is waking up at last or coming back to life. I can actually get my mouth around an apple which I couldn’t do last month.
Then there’s the psychological affect. I feel ready for a nap after the session this morning but was soon feeling fully charged. Mood had changed. I was running late before hand and felt stressed but left the session feeling pretty good. So obviously a psychological side effect as well.
It’s definitely worth a try. Study up and find a reputable practitioner. Rule of thumb: Chinese Medicine is based around healing. In China, doctors are only paid when there is improvement or when the patient is cured. Our style of medicine relies on the sick to stay sick so Doctors and health professionals can turn a buck. I paid hundreds of dollars to Chiropractics to treat a back condition which my British ex-Army mate at work sorted in three sessions of acupuncture and some home style advice for no cost. The Chinese healer treating me almost forgot to charge today but was thrilled I was getting quick results. If you see an acupuncturist and they start going money mad at you, they are probably not being true to their art.
Best Regards
John
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I have some interesting links that my daughter foun. I will post it when I am home. Michelle
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Wow, John that is GREAT news!
I had the nerve transposition (12/7) to jump start the face nerve which was completely cut, and am only seeing partial results. I'm wondering if acupuncture would work for my condition.
I go see the surgeon in July, so he will give me advice about what to do next, but I'll ask him about acupuncture. (I'm pretty sure he'll poo poo the idea).
Thanks for all the info and your experience in the acupuncture session. And how to look for a reputable practitioner. That' s a must. How did you find your traditional practitioner, BTW?
Anyway, Sounds like a trip- I would love some CHI experience :)
Glad to hear you are doing better.
Maureen
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Just wanted to say that I'm so happy to hear you are having positive results all around!!!!
Please keep us posted as to your progress!!! :)
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Will keep you posted on updates.
I got put onto my acupuncturist by a friend who practices acunpuncture.
I'd shop around to find the right one for you and check to see if they are accredited and licensed. Fortunately the one I'm using is also on the Private Health Insurers list which means I can claim back a lot of the cost. Over here the treatment is'nt expensive but it's good to see the insurers view it as valid treatment.
Cheers
John
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John -
thanks for the update; it's wonderful to hear of your successful acupuncture treatments.
It sounds like things are working out well for you - and that's always something great to hear ;D
Keep in touch,
Jan
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Johno
I know you are dealing with dry eye… and you have, quite understandably, had it with surgeries.
Might I suggest you ask your doctor to order you a blink-eze stick-on eye weight? It did wonders for me. I don’t wear it now but on days I am exhausted or it is very arid I stick it back on. When I wear it I actually do not need any drops.
Here is the PDF file link about it.
http://www.fci-ophthalmics.com/files/pdf/blinkeze.pdf
It will instantly make your eye go down and you will be able to blink. At first it is fiddly to know how to put it on- but with practice... it is no more difficult than putting in contact lenses.
Also by wearing the blink eze you will eliminate the abnormal movement of pulling up the cheek in attempts to close the eye. Some days I wonder if this abnormal movement in attempts to close the eye- caused my synkenisis.
You want to do everything possible to blink and to keep the cornea well hydrated. I paid $250 for mine others got theirs as low as $82 … it will depend on what you eye doctor charges and what your insurance pays. Trust me this little gizmo was well worth it.
DHM
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glad to hear of you sucess with acupuncture. I will definately look into it. I am 13 months post op, have made good recovery but starting with some synkensis. I don't want anymore "procdures" either, and looking at non-invasive options. thanks for sharing you story.
Hope
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Thanks guys for the wishes and advice.
I just discovered 5 minutes ago that I can now wink my right eye independantly which could not beforehand not close unless I also closed my left eyelid. I just tried it and it worked. Every day I am noticing improvements and that is after two sessions of acupuncture.
Like a buddy of mine said, if its been around for 5000 years it must be worth something.
Cheers
Johno
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More good news! I know CROOKEDSMILE was asking about acupuncture.
She should go for it.
Almost sounds like a new lease on the life of your face!
Hope to hear more good news and progression.
Maureen
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I haven't read through any of the other posts on this thread, but my ex had Bells Palsy and was pretty much given a "we can't do anything" diagnosis from western medicine. He went to an acupuncturist and had EXCELLENT results. We also have a friend who had Bells Palsy, went to the same acupuncturist and also had very good results. The only thing that bothers them both now is extreme heat or cold weather.
Good luck,
Cathy
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I just discovered 5 minutes ago that I can now wink my right eye independantly which could not beforehand not close unless I also closed my left eyelid. I just tried it and it worked. Every day I am noticing improvements and that is after two sessions of acupuncture.
Johno
WHOPPEE!!! :) ;D Yahoo!!!
DHM