Need some encouraging words

[Sonia in Sydney]

Dear friends,

Its been 4 months since my 4cm AN was removed which has left with me a right side facial paralysis and deafness. At time of surgery the facial nerve was undamaged and was reactive. Surgeons were confident i would see recovery.

I have been having acupuncture since my early recovery sometimes twice a week and feel like the tone in my face is improving with time. I have also noted some tingling in my face and occasional tearing in my eye. After my neurosurgeon examined me this week, he assessed "no active movement" and advised the longer the recovery of the nerves take the outcome is likely to be worse. He also referred me to a facial plastic surgeon to discuss options regarding facial re animation. He tells me the sooner we look at these options the better as i only have a small window for this type of surgery. I will test the nerves at the 6 month mark too which will hopefully provide some hope around recovery of my face. 

I am sure i am like most of you in saying surgery is the last thing i can contemplate at this time and am very hopeful i will see a recovery of my facial nerves before i need to go down this path. I would love to hear about any positive recoveries, anyone who started to see movement after 6 months or longer and opted to wait and not have surgery. Or even those who are still recovering and faced with the same dilemma about surgery, frustration about lack of movement despite having an intact nerve.

Look forward to hearing some hopeful news, thoughts or encouragement!
Sonia   

[TNMTMAMA]

While my story is not related to AN, it is related to acupuncture. At age 32, I had back surgery. The doctors put me in a body cast, handed me a cane and told me that was as good as it would get. After 14 acupuncture treatments, I was out of the cast & eventually without the cane. I'm 60 now. My mother was told she had 6 months to live when diagnosed with throat cancer. She lasted 12 years. POSITIVE THINKING (while sometimes very difficult) is a huge part of any healing factor. Sending you positive vibes from the other side of the world, my friend!

[CHD63]

Hi Sonia .....

If I am correct, you had your surgery and live in Australia.  Admittedly, I do not know about experienced doctors near you.  Also, I did not have facial paralysis, so I cannot speak from personal experience.

Hopefully someone will see your post who has experienced facial issues and can address your concerns from a personal standpoint.

I do know that many patients have been instructed by experienced doctors to wait for the facial nerve to wake up before any surgical intervention ..... that is if your nerve was not severed during surgery and was reacting.

We are fortunate to have an experienced facial reanimation therapist in the US, by the name of Jackie (or Jacqueline) Diels.  Many AN patients have had great results with her help.  I know she does Skype with some patients who are unable to come to her locations.  Do a search both on this forum and on the web of her name for additional information.

Hope that helps.  Clarice

[Kerrybr92]

Hi Sonia,

I can certainly relate to your experience. I had surgery in November 2011. The surgeon said the facial nerve was intact but I still had facial paralysis. 

I had some facial PT.  I had an eyelid weight put in since my eye would not close.  I wear a sclerel lens since my eye still does not close and has no tears.  But that is really all I did.  Now almost four years out I can smile pretty good.  My face at rest looks perfect. But my face is still a little "off". I would say that I can notice it myself in the mirror more than anyone else.  People who have not seen me in some time really notice an improvement.  I think I am about where I will stay.  I have not seen much I improvement in the last year.  Overall I would say that I am happy where I am.

I would recommend pursuing things but realizing that the nerve takes a very long time to regenerate. My opinion would not be to jump into any surgery right now.  I would give it time.

For me this was an unexpected complication from the surgery.  I guess I thought I would be one of the lucky ones to not suffer from it.

It may be easy for me to say now but I do need to tell you things do get better.  Or at least we get better at dealing with things!!

[Sonia in Sydney]

Thanks Kerry, your story really gives me hope that my face could get close to what it was..i was like you and was positive i would come out of surgery fine with no paralysis but unfortunately i was one of the statistics. I had a tarsorrhaphy on my eye in hospital which gives me a little relief and most days i get by just applying lots of drops. I didn't get the weight as doctors were so confident i would recover quickly, its seemed like a more long term solution. How long before you started to see some changes in your face and what feelings did you experience, if any? Did you do anything to help get that smile back? I keep getting told nothing can really be done until i see some movement again but that just frustrates me more.

Clarice, yes my surgery was in Australia and i have made contact with Jackie Deils this week so hopefully she can provide some insight. Though i have been talking to a therapist here who has similar experience with facial palsy. I am still quite keen to see if Jackie can help.

TNMTMAMA i know you are right about the positive thoughts. For the most part i am very positive and try to keep that outlook but every so often i am reminded of what i have lost or my doctor reminds me and i feel sad again. I know positive thinking got me through the surgery and early recovery, i just need to keep it going. All the thoughts and energy is much appreciated!

[Kerrybr92]

Hi Sonia,

Within a few months of my surgery I started seeing a facial therapist who had me doing several exercises in front of a mirror.  She also had me by putting my thumb in my mouth and my other five fingers on top of my cheek try to massage the muscles by squeezing and pulling them towards my lips.  I have to say that despite not liking the way I looked I was not a good patient.  I did the exercises some but not as much as she recommended.

Although I was unlucky in having this complication I may have been a pretty good person to have it happen to because I was not that vain and really often forgot about it until I looked in the mirror or saw photos of me.  So for me at times I would feel sorry for myself but not all the time.

My husband actually took pictures of me every month to see if we could notice a change.  The early ones were awful to look at but then things stated improving.  I really think that it may have been a year before I noticed much improvement.  It does take a long time and it is so hard to be patient. 

I still have no tears on my AN side and I get very bad dry mouth in the winter months.  Most times I drink things with a straw as my lips don't really seal tight.  Those things drive me more crazy then the way I look.

Things will get better.  Try to be patient.  I think being optimistic is helpful but I was not always. 

Kerry

[HJY]

Hi Sonia,
I am in Western Australia.  I hope you see this - I actually flew all the way to the US (combined holiday) to see someone trained by Jackie but she works very closely with an amazing woman called Susan Coulson who works in Sydney.  She and Jackie are some of the top researchers in the world in this area.  I've been seeing Susan for the last 3 years and have had ongoing recovery.  She is brilliant.  f you ring the 4th Ave ENT clinic in Burwood she works from there only once a fortnight.  There are lots of treatment option in Sydney so I hope you connect with someone!  Also I would caution against acupuncture.  Some will disagree but my understanding is that when the nerve is recovering and its myelin sheath is regrowing that acupuncture can damage the nerve further.

Best of luck to you,
Heather

[Sonia in Sydney]

Hi Heather,

Thanks for your email and wonderful to hear from you via this website. Are you part of the Australian Acoustic Neuroma group and the facebook page they run?

I actually have been seeing Susan since very early in my recovery as i am part of a study she is conducting at one of the universities here in Sydney. She has been a great support for me over email and phone but no physical treatment has started yet since i only just started to see some facial movement near my mouth. Hooray!

I will be seeing her again on the 12th October and i am seeing a speech pathologist in the interim who has given me gentle exercises to practice my smile and eye closure.

With regards to acupuncture, i have continued this treatment for the last few months and its hard to know whether it has helped the improvement of my face. Susan Coulson didnt think it would be a harmful thing to do though didn't feel it would help necessarily but i am a big believer in trying all avenues. The only thing she advised i should avoid was anything with electrodes or currents involved which cold cause damage to repairing nerves. I am also seeing an osteopath who has been trained recently by an american lady with the same surname as Susan (cant recall her first name) who has helped those with facial paralysis recover in 8-10 weeks with special facial exercises. I am doing these also. I have lots of exercises to practice 3 times a day alongside looking after my two children who are both under 3!

How is your recovery, do you have a full smile and eye closure?

Thanks again for getting in touch.
Sonia

[evestew1]

Hello Sonia!
If I recall you and I are on a similar path - I had surgery in Feb and experienced facial paralysis post-op.  During the first few months I experienced some twitching and cramping but had no voluntary facial movement at all.  Then in July I noticed that I could very slightly, barely noticeably, move my muscles into a tiny smile motion. At first it was such a small movement that you would have to stare intently to see it. But I was encouraged! and gradually over the last 2 months my face has improved greatly.  I can now manage a closed-lip smile that looks pretty normal and my face has symmetry when at rest. I still dont have my BIG smile and can't move my eyebrow or close my left eye completely but friends and family say the paralysis is not very noticeable now and I feel that I look so much better. So don't give up hope!  I too have have been going to accupuncture about 1x per week since April.  Hard to say for sure if it is working but I'm sure it isn't hurting. I also take b12 vitamin supplement and practice making faces in the mirror (smiling & whistling mostly). And  I've done a lot of reading out loud to my young children and wonder if that has helped wake up the nerves around my mouth. I don't know for certain that any of these things have aided my recovery but want to share in case they could help. I hope you continue to see improvement -I think time is on our side!

[Everyone1226]

Sonya,
I am 19 months post op and am starting e-stim tomorow.  I am a little leary after your comment on electrodes could harm repairing nerves.  My ENT says my nerves should have been back to normal after 1 year.  My facial nerve was left intact.
Any comments?
Linda

[Sonia in Sydney]

Hi Linda,

I can only speak from my experience and the advice I have been given from Susan Coulson, a well respected lecturer and someone who has worked with patients who have had facial palsy for over 20 years. As i am part of a study she is conducting with the university, i am able to connect with her if i need advice or support. She has been amazing and while she hasn't supported acupuncture or osteopathy which i am also receiving she does not feel they will do me any harm. She was adamant about anything involving electric currents being contraindicated. Though i was specific in asking about galvanic therapy so you may be trying something different. I have also read a post on this forum where electrical therapy was having a positive affect for someone with facial palsy. I will take a look through my posts to see if I can find it for you. At the end of the day, we each have to do our own research and work out what is best for us in our recovery. You are also a little further on in recovery with no movement so perhaps this type of treatment could help trigger something? Wishing you all the best whatever your decision.
Eve, i was really encouraged to read your post and so great to hear of your recovery. I saw a speech pathologist 2 weeks ago who noted i had small smile movement on my paralysed side and that was such amazing news as she placed me in front f the mirror and i saw it too. Since then i have been given exercises to continue to help improve to a more symmetrical smile. Like you, my eye closure seems to be slower to catch up and i am struggling to close my eye but i am tearing up spontaneously on that side and using less drops so i see that as a great sign. Thanks so much for your advice on B12 and there has been plenty of story reading in this house so hopefully that is helping me along too! Keep me posted on your recovery and all the best. Sonia x